Palindromic Rheumatism – What Is It? by Ashley Boynes-Shuck

  As you may or may not know by now, there are many different types of arthritis and rheumatic disease.

Palindromic rheumatism is just one of many. Palindromic rheumatism is a very rare type of inflammatory arthritis. Symptoms are often mistaken for and misdiagnosed as RA or rheumatoid arthritis. Also, these two conditions can certainly overlap, existing in the same patient.

That being said, however, there are still some distinguishing features between palindromic rheumatism and rheumatoid arthritis.

So what is Palindromic Rheumatism, and its features?

  • Palindromic rheumatism is an inflammatory type of arthritis – since not a whole lot is known about it, it is often referred to as a syndrome instead of a disease like RA. A syndrome is a ‘collection of symptoms.’ Fibromyalgia is often also referred to as a syndrome.
  • Palindromic rheumatism is characterized by attacks of inflammation on joints, tissue, and muscle. It is not reserved for the joints only. These attacks come and go, and usually are “quicker” than typical RA or Lupus flares — albeit, very painful in nature. These attacks of palindromic rheumatism come on VERY SUDDENLY and spontaneously, and can last a few hours to a few days, usually affecting 1-3 areas. These attacks are usually intense, but are unpredictable in frequency and duration. Remission, like onset, is very sudden and spontaneous in nature.
  • It usually comes and goes from one joint to another. Example: In one attack, it could start in a thumb, move to the arm the next day and then hours later the arm will be better and it could move to another joint or tissue.
  • Palindromic rheumatism does not usually lead to permanent joint damage, like rheumatoid arthritis does. This is one of the main differences between the two diseases. However, as stated, palindromic rheumatism can occur in patients who do have rheumatoid arthritis also.
  • Subcutaneous nodules can develop in palindromic rheumatism patients. These nodules are unlike the nodules seen in RA patients, however.
  • X-rays are usually normal with palindromic rheumatism patients.
  • Sed-rate and rheumatoid factor tests may or may not be positive in palindromic rheumatism patients.
  • If a patient starts out with palindromic rheumatism, they have a better chance than the average person of developing RA. Sometimes palindromic rheumatism turns into RA.
  • About 30-40% of palindromic rheumatism patients’ condition worsens over time. The attacks become more frequent and may last longer.
  • Only between 100,000 & 200,000 people in the United States have palindromic rheumatism, making it much less common than RA.
  • Men and women are equally affected by palindromic rheumatism, another unique difference from RA which is more prevalent amongst females.
  • Palindromic rheumatism typically affects people from 20 years old to 70 years old and is not documented in children.
  • Treatment for PR usually consists of NSAIDs, oral steroid use, steroid injections, and DMARDs. Occasionally, anti-Malaria drugs like Plaquinil will be given. Some people turn to alternative treatments such as massage, acupuncture, etc.
To summarize: this rare condition is closely linked to rheumatoid arthritis, which damages joints by causing chronic inflammation. Right now, though, there’s no reliable way to predict how quickly palindromic rheumatism will progress — or whether it will get worse at all. Attacks of PR are very sudden – they include joint pain and swelling, typically in the hands and feet, and sometimes soft tissues are affected, too. Attacks of palindromic rheumatism may last from just a few hours to several days but are often extremely painful. Some folks experience more than one episode in a week’s time, other people may only have 4 attacks in an entire year. That being said, the attacks can be debilitating while one is going through them. According to the Mayo Clinic, “an unknown number of people with palindromic rheumatism go on to develop rheumatoid arthritis, but the progression may take several years. In one study, 40 out of 60 people newly diagnosed with palindromic rheumatism had chronic joint inflammation within 10 years. Progression to rheumatoid arthritis was less common in other studies with shorter follow-up periods.”
Do any of you live with palindromic rheumatism? We’d love for you to share your experiences by leaving a comment.

Stay well,

Ashley Boynes-Shuck

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88 thoughts on “Palindromic Rheumatism – What Is It? by Ashley Boynes-Shuck

  1. You know I wonder how many syndromes are actually other illnesses misdiagnosed, or in the early stages so not all the symptoms are present??? Interesting, I havent heard of this before….

    • im just going through this now being misdiagnosed and have only found out by accident that i have palidromic rheumatism by seeing the letter on my rheumatoloists desk, im am about to challenge them about it as it was said for years i had RA and i always said my falre up patterns werent the same.. looked up PR and it was like an aha moment

  2. Hello – I was initially diagnosed with PR. I started on plaquenil for about 6 mo but now, because I continue to flare fairly frequently, my doctor thinks I my have developed RA and he has added methotrexate. He has bumped me from 3 to 4 to 5 tablets a week. As far as I know… I have not developed any permanent joint damage. I do have positve RA factor and anti-ccp.

    The joints affected include feet, knees, fingers, hands, shoulders, hips even jaws. What begins one place may disappear in 24 hours or spread wider or migrate or randomly appear in same joint on the other side of my body (ie: ringfinger on right leads to ringfinger on left.) Sometimes I can see swelling. Sometimes it is not visible.

    I never know if I will be a bit stiff in the morning but warm up just fine… OR barely be able to get out of bed and then hobble around like a 100 year old with a gimp leg or unable to open my hand. I am 49 and HATE feeling 100! Sometimes I can not specifically identify my pain as coming from a joint. It seems more like tendons and muscles. Sometimes flares are completely random. Sometimes I know why a particular area hurts, even if it is completely out of proportion with what a normal healthy person should be able to do. Is my arm hurting because I was holding my book too long in one position as I read? Is my knee killing me because I was sitting with my legs crossed? Here’s my latest example… both hands have been hurting over the last couple of days because I helped my son sort about a billion Legos into piles of like colors. That was certainly not “heavy lifting” but just the type of thing which I am now paying for with achy swollen fingers (and wrists) which continue days afterward as well as numbness and searing pain while trying to sleep that first night after I over-did-it.

    Are my prescriptions working or am I just learning more about my limitations? I don’t have any way to tell. I still flare! I do think I am getting better at keeping myself from doing some of the things that have set me off in the past. I will just say no to Lego sorting in the future. I read at the kitchen table so that I can keep the book on the table rather than hurt my wrist. I reposition my legs frequently while sitting so that I don’t inadvertantly put too much pressure on twisting my knee.

    I tried accupuncture but I don’t know if it helped. 24 hours often makes a huge difference in the way I feel either with or without treatment! Sometimes I was already better by the time I could get an appointment. Sometimes I felt dramatically better the day after the treatment… but might have without the treatment too!

    This truly is the most mysterious disease!!!

    • mysterious indeed. i have suffered with pra for over 15 years. it was hard to diagnose/symptoms were gone by the time I was able to visit my doctor /and later my rheumatologist. I was tested for other types of arthritis/gout/ra with no symptoms present, and after about 2-3 years I finally coordinated a doctor visit while suffering from a full- blown fflare. finally, at least a diagnosis! My flares and remissions are pretty textbook.the pain is unbelievable. at home I will often cry out/cant help it -every time I move during a bad flare. Of course I have crawled on hands and knees to get to the bathroom many times.flares often migrate ,and just as often hit several joints at once.co-workers do not understand this pain at all-especially the fact that it can completely dissappear the following day.nothing in particular ever seems to bring on the flares. I have gone as long as 3-6 months without them.my heart goes out to everyone with this very strange disease.

      • I was having allot flares in my knees and hands pretty often and I didn’t know know what it was. I went in for blood work and they thought I had RA. I went to a Rheumatologist and after telling him my symptoms he said I didn’t have RA but I PR. My flares seemed to slow down after taking Plaquinal , but they still do flare up occasionally, to my hands, fingers, shoulder, feet, and today for the first time in my neck. My Rheumatologist wanted to start me on Methotrexate but the side effects that come with taking make me nervous about taking it. When I see him again I am going to be asking allot of questions about maybe starting it again. It just makes you feel sick when you have a flare, and it is hard when you have to work when you are in pain. I have been doing welding work for over 30 years and it does take it’s toll on your body but when you have a flare in both wrists and have to work using your hands it is almost unbearable. I always wondered how I ever got this disease, for someone in my family history. I feel pretty good when I have no flares. I am 56 years old and on the days when I have a flare I feel allot older and depressed but I will not let it stop me from living …

    • Hi Susie, reading your decriptions, it could have been me to a tee except I dont have son and Lego to sort!
      Finally I was diagnosed 5 months ago with PR after experiencing flareups over the last few years. It was a relief to finally get know what it was called and was prescribed Plaquenil and Vitamin D which I am doubting is working as episodes (flareups) are still happening. It is also scary to think what my future health will be like if it can’t be controlled and side-effects from medications do not sound good.
      I have only just started reading information about PR in the hope I can find someone who has found relief, especially from natural medicines or treatments. It was good to know you tried acupuncture, I will give that a go but can see it would have to be done while having an episode.
      I also, like you, think sometimes it is from some sort of repetative action, even if it not hard and straining, like holding a book but then it can just flare up for no good reason so it is not always from repetative action or strain. Mind boggles.
      It certainly can be frustrating, feel normal for days or weeks then
      out of the blue can feel it starting to happen, can take hours, even overnight to flare up anywhere, anytime, same places you describe, seems more muscular or deep tissue than in any joints, I also get some numbness in my fingers, sometimes the tip , sometimes down to the second joint, may last for hours then goes away. I describe the extreme pain as what I would imagine a broken bone would be like when you cannot bear to move the limb even a fraction of an inch. Good to read others but not nice to think others are suffering.

  3. I know exactly how you feel. It took about 5 years to get diagnosed as it just kept changing, and i felt sure it must be symptoms of poor lifestyle.
    It was a huge relief to have a name to put to it – but also scary to know that it was something i was going to have to live with, and that it wasn’t just going to go away as mysteriously as it started.

    I too am 49 yrs old and now take a slow release anti-inflammatory Naproxen every day which helps keep it at bay most of the time but I still get flare ups – usually when I need to get stuff done, so it is most frustrating.. I used to be very active and now sometimes i feel quite frail and incapable. Most demoralising.

    I find it is hard to explain to others because of how swiftly the symptoms can come and go, sometimes the inflammation is not visible so I end up sounding like a hypocondriac. I might go to bed unable to move my head because my neck is killing me, but get up next day and it has moved from there to my wrist.

    I have had this problem for about 8 years and it isn’t showing any signs of going away but thankfully, doesnt seem to be getting worse either.

  4. I have been diagnosed with PR it moves from my right knee (water on the knee) to my left leg below knee joint, sometines both at once so I don’t know which leg to limp on, It does effect the soft tissue & sometimes I resort to anti inflamitorys. I was prescribed quinine based daily medincin but the flares still come so what’s the point. I also feel poorly & tired a lot of the time & have pain & stiffness in my finger joints. I am 50 but feel like 60 because of this debilitaing condition. Does any one else get an ill feeling with PR or is it just me?

  5. I am a very active 34 year old who, after suffering for 2years has been diagnosed with PR. It is hard to deal with knowing my body can turn on itself in a moment’s time or that I can wake up in the am and hardly be able to walk. My inflamed joints seem to cluster. Sometimes the hand and wrists and elbows, sometimes it is the feet ankles and knees. Lucky me, this week it is my rt ankle, left knee, rt elbow, wrist and 4th finger. The Mobic I take helps a little. But I feel ridiculous limping one minute and then the next day I am fine. I may even go run. I am trying to accept the fact I can’t control this. My doctor prescribed something to help me sleep and that has helped with the terrrible fatigue most days. The best way I can describe it is that I feel like someone has stepped on me. It is different every day and on good days, I feel like there is nothing wrong with me.

  6. wow, this is so great to read what other are going thru. I’ve had full on RA for 7years, and went thru all the normal RA meds with little good result until Remicade (a DMARD) took about 80 % away, about three years ago. Then about nine months ago I started with these odd flares like you all have described, here-and-there pains and swellings that come and go which are different than the over-all-everything-stiff RA I was used to. My doc just told me they are called Palindromes, I thought he was making it up! Thank goodness for the internet. This year, we have upped my Remicade twice and it makes no difference to the PR symptoms, just the RA symptoms (or if it does, and that means they could be worse, then I’m very grateful!). The palindromes (is that the right use of the word?) seem to have their own schedule, although I can bring them on by eating chocolate or the minutest amount of dairy, or drinking coffee. I had already cut the same things out for the RA, but find cheating now includes a worse bout of the PR symptoms. I can’t make them stop or go away by avoiding those food/drinks, but I can make it worse by having some. Have any of you noticed this?

    Also, some of the flares have hard centers to the swellings – sort of like what others call a nodule, I suppose, it feels like I suddenly have an extra piece of bone, it’s so hard. It’s hot and hard and swollen and red and lasts for hours or days, then poof, gone. Not all of the swollen palindromes have them, but many do, and there is often a kind of numbness that goes with the pain of that kind. Do others share that particular issue? I find it hard to describe to my doctor, or loved ones. When they come in the bottom of my feet it’s like walking on rocks. when it comes in my fingertips, it can be very hard to hide, just like the leg limping that comes and goes! Right now I have a lump in my palm just where my hand rests to use the mouse, so that’s annoying. But for three days last week the back of my right hand was a huge swollen thing with no hard place or pain, although at the same time my left thigh hurt like heck and wasn’t swollen at all that I could see, although there was a ‘center’ to the pain, just nothing to feel from the outside. Do these sound like the things you all have that are “just” PR?

    Strangely, having RA first makes the PR seem less bad,,, although the points and parts hurt alot, it’s a little easier for me to deal with than the over-all-everything-hurts of the RA before I found Remicade. I will only be able to take that, though, for another year or maybe two before we’ll be seeking something else, I don’t look forward to that.

    Anyway, thanks for being here, and although I am sorry anyone else has this, I’m also glad to find people to talk to about it.

    • I get the nodules on my knuckles. On my wrist, I once got one so hard it felt like a rock. It was about pea sized. I get hard places in the balls of my feet as well. They come and go in clusters on my feet, it seems. I can’t figure out any specific “triggers” except weight training for me. Diet doesn’t seem to matter. Right now I am fighting terrible fatigue but none of my joints hurt. Usually when I get the fatigue, something flares up. I go to the rheumatologist again next week, although I don’t think there is much he can do. It is frustrating, but it does help to find people struggling with the same things. All the best to you!

  7. I was told years ago that I have RA, which was strange because I didn’t have typical RA symptoms, just a positive RA test. I do have fibromyalgia, so a lot of my joint pains I just brushed off as related to that. One particular year I was having horrible joint flares that were not common so I went for more testing and they finally diagnosed me with Palindromic Rheumatism. This strange disorder is one that has me confused…I can be in terrible joint pain for days or hours, which moves around at will, then suddenly it will be gone. Sometimes I go into remission for a few weeks and I wonder if I’m really sick at all; but then the attacks start again and it confirms my diagnosis. I have no joint damage whatsoever, I am 48 years old and when I tell people what I have they look at me like I’m crazy. Even the medical community looks at me like I’m some sort of mystery. Some doctors don’t even know what PA Rh is! I have a long journey ahead of me and for now I will continue to take what works: Aleve and Neurontin and sometimes muscle relaxants. I am intolerant to Plaquenil so that’s a no go, and I really do not want to go on any DMARDs unless it is my last option. Good luck to you all, I know how you feel.

  8. Hi,I was just diagnosed with palindromic rheumatism last week and also told I was borderline for lupus. My RA factor is negative but most of the other tests were positive except for the double strand DNA so that is why it was decided that I didn’t have lupus. This all started 2 years ago when I had a strep infection in my blood and septic arthritis in my elbow. I was on intervenous antibiotics but my crazy body decided to reject them and now I am intolerant of all antibiotics. My first serious bout with the PR was my hands and arms it is the most painful thing and I agree that it is so frustrating when you can’t see anything you begin to wonder if you arre just imagining it! I am fortunate to have a great family doctor who takes my complaints seriously. I am a 45 year old female and am glad to hear I am not alone, very sorry anyone else has to go through this weird disease though.

  9. I am a 36 year old single mother of 2 boys and I started having these attacks when I was in my early 20′s. I went to so many doctors and had so many tests and x-rays that all came back normal. I really thought I was losing my mind. I switched to a new family doctor and she referred me to an out of town rheumatologist. After more blood work, x-rays and a full body bone scan he diagnosed me with PR. He was very up front with me and explained that there really is no treatment for PR and prescribed me some ultracet to help manage the pain. Even with this new I was still grateful to have a name for this so I could stop calling it my traveling joint disease. People looked at me like I was crazy when I showed up to work limping or not being able to open my hand. They still don’t really understand it, but at least I know it’s real. My PR seems to go through phases. I will have many attacks within a short period of time but then I may go months with none. It’s so frustrating trying to figure out if i’m doing something to cause this. This has probably been the worst week i’ve had with this. One day I woke up with both my elbows, my left knee and my right foot in a full blown flare. Later that day the right elbow felt better but the pain had moved to my left jaw while still affecting the other joints from the day before. I woke up this morning with my left knee, right thumb and right ankle hurting. What people don’t understand is that the pain associated with this is excruciating!! I have a very high pain tolerance and the episodes this week have left me sobbing. I try not to let the pain show so that my sons don’t worry, but sometimes it is too overwhelming. If I am awake when a flare starts I will take a few plain aspirin and that seems to keep the pain at a manageable level, however if an attack starts while i’m sleeping the only thing I can do is take a painkiller and try to get as much sleep as possible so that I can go to work the next day. Luckily my boss is very understanding if I show up late. As terrible as PR is I am very grateful to know that there are people out there that are going through the same thing. I wouldn’t wish this pain on my worst enemy. I just try to stay positive and hope that someday there WILL be a treatment for PR. Thank you all for sharing your stories.

  10. Get on Orencia asap!!!!! Everyone on here. I have RA and PR. I have everything you all have. Orencia works!!

  11. I started Plaquenil about 3 months ago and I am having lots more good days and less severe ups. I ran my first 10K this last weekend and it was an awesome emotional and physical visctory over this disease!

  12. Wow. I just found out that I have PR after many years of not knowing. I always thought when I was a teenager until I was almost 50 that my immune system was puny. Every once in a while out of the blue I would feel like I was coming down with the worst case of flu ever. Within 5-10 minutes I could go from feeling fine to severe pain in my joints and chest, chills and fever. When I was younger it was very seldom I had these “attacks”, and thought they were just a virus or something. As I got older, especially in my 40′s they started happening more often; but only maybe 1-4 times a year. When I was 49 I got food poisoning, and thats when it all went downhill. After that I seriously thought I was going to die as I had pain all over my body and high fevers. I could literally feel my body attacking itself and after 3 days of my husband watching me suffer he took me to the Dr. They ran tests and found my ANA, CRP, and RA high. Put me on Prednisone and referred me to an Rhuematologist. He told me I had RA and that I needed to start out on Plaquenil. I was afraid to. I hate taking medicines so I took the prescription home and didn’t fill it. Well, I got 1 flare after another and the last straw was when my body started attacking my lungs. I had the most incredible pain and it was almost unbearable to breathe. As I layed in bed that night I truly thought I was going to die and asked God to please help me get through this. He got me through and back to the doctor I went…..he said, “do you want to spend the rest of your life debilitated like this or do you want to try and help yourself?” I started on the Plaquenil and did it faithfully for about 2 years. I never had a severe flare like that last one; just some smaller ones…until…I thought since I was feeling so much better for so long I would cut way back on my medicine. Well 5 weeks later I had another big flare. I was at work and within 5-10 minutes had a fever of 101, severe joint and chest pain, and severe chills…….I was devastated. I made it home and was in bed for 3 days. The pain would come and go but the fatigue is still with me. Back to the specialist I went. When he asked me why I took myself off the medicine, I told him I thought I was better. I really didn’t think I had RA as my joints never became disfigured and would come and go with pain.Thats when he explained to me exactly what I had, palindromic rheumatism, and I couldn’t mess around with my medicines like that. Well, now I have been on Prednisone for 2 weeks, and just started another 2 week burst. I can’t believe this incredible fatigue that I can’t shake. The pain comes and goes, but this fatigue is so consuming! I can hardly chew my food without gasping for breath as it fatigues me to even do that!! I sure hope getting my Plaquenil levels back up in a few weeks does the trick as I hate feeling like this. I was raised on a ranch and married a farmer so I have always worked hard. I used to push myself through to get stuff done but can’t do that anymore. I found it only makes you sicker if you push yourself too hard. Just today I woke up feeling pretty decent; with some energy, so I went to church. I stopped off for a few groceries and then Bam…I hit that wall of fatigue and it was all I could do to push my cart through the checkout lane and get home. So I have been finding out about my condition on the internet and saw this. I am so sorry for all of you who suffer and bravely go through life with this. Take care of yourselves :)

  13. I have to say that I’m surprised at the comments here because the symptoms are all too familiar. PR can make me feel crazy sometimes because, like so many of you, I can feel normal one day (those days are less and less) and then the next day or even later that day, I’m in pain.
    I’ve been diagnosed with fibromyalgia and just one year ago with PR, although, I believe that I’ve had it for several years, just the doctors couldn’t figure out what I had. I believe my first experience with PR was in my mid to late 20′s…I’m 54 now. The doctor at that time was concerned, but couldn’t figure out my pain and fatigue.
    How many of you have a diagnosis of fibromyalgia also?
    How many of you have had mononucleosis?
    I wonder if there is a correlation with all of these illnesses/diseases.
    I think that my flares can be due to stress and of course repetitive work or doing too much in general. I just have a difficult time slowing down and yet I’m forced to when I’m in a flare. I hate that I can’t do all that I used to. I’m now becoming one of those people who doesn’t exercise as much as I should because of my pain and yet sometimes, it helps to reduce the pain.
    I’m glad I wondered onto this webpage. Not that I would wish PR on anyone, but it’s nice to hear that there are others out there with the same issues I have. Although it’s “mysterious” there really seems to a common thread. Thank you everyone for sharing.

  14. I thought I was going crazy because I was having these horrible episodes of pain, then I would wake up one day after a week of suffering and the pain was completely gone! While I wasn’t happy with the diagnosis, I was glad when my rheumatologist told me this is very normal for PR. Plaquenil and Tramadol have helped over the last year, as well as knowing what to expect. Plaquenil lowered my SED rate and CRP. Tramadol helps with pain during an episode. My episodes have increased in frequency, but not in severity and are fairly textbook. Rest and stretching seem to help most.

    • Glad that you’ve found a treatment plan that works for you. It’s so hard in dealing with these conditions because what works for one person may not work for another. That’s why we all need to be very open in discussing our symptoms with our doctors as well as discussing all treatment options available. Thanks for reading! – Ashley

  15. I was a serving Soldier for 13 years, in 2001 I had a bike accident which resulted in the loss of my left leg above the knee. After being fitted with a prosthesis and leaving the forces I achieved skiing, sailing, parachuting, sponsored walks/swims ect. In 2009 u was diagnosed with PR. that was after many trip & X-rays with no diagnosis. (I thought I was going mad). Having so much pain one day and be ok the next. My attacks are becoming more and more frequent and a lot more painful lasting for longer periods. I am on methotroxate, just does not seem to be working. I call it my three month remission where no attacks occurred. My close family see the pain I am in, and are all very supportive and understand. Some of my friends and extended family have not got a clue, sometimes makes me feel like a fraud, gives me the impression they don’t believe me which is quite upsetting.I have just achieved gold, silver, & a bronze medal in the 2012 amputee games this Saturday only to be struck Down with PR before I could finish the Sunday. I think I would have had a few more medals. It was a good job my best mate was with me because I was in real trouble. The pain. the pain, the pain.

  16. David, thank you, first, for your service. Second, thank you for posting your story — as painful as it is to read and empathize with you, it is also inspiring to know that someone as gifted, determined, disciplined and practiced at overcoming pain as you are can still be felled by the pain of PR – makes me feel like I am not the wimp I sometimes think I am! When I feel down about it, now I can think of you and that will give me inspiration. Eveyone who writes here gives me that, too, don’t get me wrong, but something about your story adds to my knowing that I don’t have to be ashamed of what I can’t do when it strikes me, too. I hope you keep looking for a treatment that works for you – methotrexate is but one of dozens to try, if it’s not helping, make them give you something else!

    Blessings to all of you, Julie

  17. i am glad to find this up to the minute message board on PR. I was eventually diagnosed with this about 18 months ago. It all started in my feet and then went from joint to joint. I didnt give it much thought to start with. It seemed to fall into a pattern. I would be a bit stiff in whichever joint in the morning and would be ok for most of the day until about 4pm when i could feel it going into pain and knew by 8pm i would be in severe pain. endless blood tests came up with exactly 0. in some ways this was a relief to not be diagnosed with the big ones but frustrating to not know what i was dealing with so unable to do anything about it. I have an interest in herbal/eastern meds and read up on Ayurvedic Medicine and adjusted my diet accordingly (not perfectly but had a go) the flare ups were less and only came when under stress. moving back to the uk (I was in south africa) kicked it all off to epic proportions and i was in agony every day, it was hell and i absolutley identify with everyone on here so far – tears, feeling 100 (i am only 43 now) – so debilitating and with no diagnosis. Rheumatologist here finally gave me the PR diagnosis and started to take Naproxen which did seem to keep a lid on it if i took them regularly. i dont like taking drugs (i am a recovering addict and want to be clean of chemicals) but of course will take them when necessary. I carried on with the diet and ayurvedic doctor who made up some herbal powders for me and after a few weeks my flare ups lessened and a few months later realised i was hardly having to take Naproxen at all. got bored of taking powders and quit – thinking/hoping i was cured….it has crept back in to my life, more painful than ever it seems. i write this with my left leg elevated in bed as knee is throbbing pain and waiting for naproxen and paracetamol to kick in….i think we are similar types with this. i think i have a high pain threshold normally but this is acute, like a broken limb. when i first was in pain it felt like the marrow in my bones was angry and wanting to leach out or something. in the beginning i put this all down to the emotional stuff i was working through and thought this pain was part of that process somehow….that theory wore thin! I do think diet is an important factor its just very difficult to stick to no sugar etc and i would like to find someone who knows what they are talking about before fully embarking down that road. would be really glad to hear of any other alternatives to taking pharmaceutical drugs. Jjust knowing that i am not alone with this has helped me, thank you all for sharing your experiences.

  18. After 6 months of migrating joint pain, I was luckily diagnosed pretty quickly with PR. I just started taking the HCQ, but I am trying to hold my hopes at bay, as it can take months to see any improvement. I believe that stress makes my daily flares worse, so I think just having a diagnosis/name to go with my mysterious pains (and some reassurance that I am not crazy or alone) has already helped reduce the severity of my pain.

    I recognize a few of your names, but for the rest of you, I have found loads of great info (drugs, diet, alt medicine, etc) and support on the Intl Palindromic Rheumatism Society website/forum: http://www.palindromicrheumatism.org/

    As PR is somewhat rare (and obviously frustrating) disease, I have found reading through the old posts to be very reassuring and informational. As much as my husband, family, and friends are outstanding at trying to help, having an outlet that “understands” and has tried to walk in my arthritic shoes is a much deeper level of support.

    Hope everyone finds ways to manage their pain and keep positive in the mean time!

  19. Just a note to say that I had this a number of years ago, but I was lucky and it went into remission. I haven’t had a flare in 5+ years. So there are some good outcomes with this disease as well.

    I, too, had to visit multiple doctors (the 7th was the charm) to get an accurate diagnosis. My attacks started in my right foot, then after about 2-3 years, the episodes occurred in my left foot. But by the time my left foot started, the disease was working its way out, and I only had a couple of flares.

    It was hard to get anyone to realize the magnitude of the pain in my foot. I finally had to say that it felt like my foot was BROKEN (as in fractured) because I couldn’t bear weight on the sore area.

    I was treated with NSAIDS that are no longer available: Vioxx worked for awhile, then stopped being effective. Bextra worked, and I stayed on it for almost a year. I also used Tramadol (Ultram), and the topical Lidocaine patch. I felt the Bextra made the biggest impact, and the Tramadol and Lidocaine patch just rounded out that last 10-20% of the pain.

    Also, one final note: Although the attacks very much followed the “palindromic” pattern, I never had visible redness. And finally, rest and ice did NOTHING for the pain. It simply had to resolve on its own, usually after 3 days.

    But keep in mind that you might be lucky, as I was, and go into remission, hopefully permanently.

    • Ditto what Lori said :-). Also, was nice to read what worked and didn’t, thanks for writing.

      I have a similar ‘fantasy’ about the RA that shares my body with the PA… I once overheard a guy on a hotel patio, he said to another man “I had terrible Rheumatoid Arthritis years ago, I was so crippled I couldn’t even mumble mumble, but then mumble mumble mumble and it was just gone, I don’t have it anymore.” By the time I figured out how to get to where they were they had vanished. I’ve kept that ‘vision’ for years now, knowing that there is at least ‘something’ that can make it all go away! If one person can get lucky, then any of us can. And even if that person turns out not to be me, it’s still nice to know it could happen, and be glad for those to whom it does!

      • I was one of the very very lucky ones who developed horrible RA symptoms that lasted for 5 weeks. I could barely function. Fever, swollen joints, incredible fatigue. terrible pain. I tested positive for RA with the 3 standard blood tests they do but my Dr said it needed to last another week before he would pronounce me an “official” RA patient. Two days later the symptoms were gone and that was 8 years ago. The Dr said it was probably PA but I have no idea if it was–or is. I just wanted to share my story because I know the pain everyone is describing but by some miracle I went into what seems to be a permanent remission. My heart goes out to everyone with RA or PA.

  20. Thanks for the posts. I was diagnosed with PR yesterday. I start the meds after an eye exm. Relieved to know the floating pains have a name, at 54 years I just keep getting surprises all the time. At least there is proof to my old docs, and wife (lol) that I wasn’t just sleeping wrong for the past three years! I have so much to learn about this new universe. At least I feel not alone now.

  21. Wow, this site is so helpful! I am a massage therapist, but have just graduated nursing school. I’ve been a massage therapist for the last 15 years, and have only had a few clients here and there over the last couple of years due to school load. Occasionally, I’ve had a swollen finger(s), with pain especially when flexing my hand. I’ve always wondered what caused it, but figured it was because I had caught one of the fingers in a cooler door many years ago. It only lasts a day or two (or maybe even just a few hours), and then is gone before I even think another thing about it. And it only happens once in a blue moon, perhaps maybe a few times a year.

    I noticed last night before going to bed that my left middle finger was extremely painful between the hand and the middle joint of that finger, and it was hard to squeeze my hand closed without feeling the pain and swelling. When I awoke this morning, it was unbelievably stiff and swollen almost the entire length of the finger.

    I am just 50…I’m extremely active (long-distance cycling, with recent rides of up to 37 miles; an hour of elliptical interval training a few days a week at the gym), so I wondered if the pressure on my hands from cycling that far might have caused this. Then I wondered if the deep tissue massage I gave a muscular client yesterday might have instigated it. And I even wondered if the biscuits and salty bacon that I had last night at Cracker Barrel caused it (sometimes even a slight amount of sodium makes me a little ‘puffy’ in my face or hands). I usually eat very healthy, adding no salt when I cook, and trying to avoid moderate to high sodium foods. I have a background in lifestyle and weight management consulting/alternative health consulting, so I’m into healthy eating/healthy lifestyle, but I’ve been perplexed as to why this is happening to my finger(s).

    I decided to google some things and found this website, which has helped me to realize that I more than likely have palindromic rheumatism. My mom has RA, so is there maybe a genetic component to this? Would it be related to years of overuse of my joints? Could the plantar fasciitis that I’ve had forEVER in my left foot be related to this? I’ve had two shots (one per year) of cortisone in my foot to relieve that pain ~ the first shot a few years ago completely obliterated the pain for almost a year; the second shot did nothing whatsoever.

    Thanks!

    kb

    • Interesting KB……I too had plantar fascitiis in my left foot before I was diagnosed with PR. I come from a backround in landscaping and gardening….lots of physical hard work. Who’s to say what caused it but it’s neat to have similiarities. Who knows if we all keep sharing common things we may unit and find a damn cure :))

  22. I have not been diagnosed wth PRA. But I am havin these exact symptoms. I have lost jobs because my body hurts and I can not work. I just want to know what is wrong with me. I am 27 and I have had these issues since I was 22 and I was just put on anti-anxienty meds. Which I don’t have an attack until I am in unbearable. I went to my doctor yesterday while I was in mild pain and finally he listend and I told him I think I may have PRA. I just hope the Rheumatoligist listens to me I do not think it is normal to feel pain every day when you are as young as I am.

    • If it is a good rheumatologist, he/she will listen. I went to several doctors before I went to the rheumatologist. I was so relieved he didn’t act like I was crazy. A couple of things helped my visit – my husband went with me. It is good to have someone who knows of your symptoms and has seen them affect you. Keep a pain log. That really helped. When I went for my first rheumatologist visit, I wasn’t hurting anywhere but I had about a 2 month history. I write down what joint and the pain level on a scale from 1-10. Even now, I keep that log and it helps the doctor get a picture of what is happening day to day. I also took pictures of flared joints (that were swollen) and had them at the visit. He didn’t blink an eye and diagnosed me with PR. I had never heard of it and I had been researching for 2 years trying to figure out what was wrong with me. Good luck at your visit. I hope some of this helps. Lori

  23. Oct. 2011 it hit sudden and it hit hard. My hands and wrists felt like they had been run over by an 18 wheeler and forgot to leave the bruises and tire marks. I suddenly couldn’t use my hands. I couldn’t even turn the door knob to get out of my house. The weight of my little sweat jacket was to much to hold to try to put on. Over the months it would be in my left fingers maybe two of them for a few days constant then boom I wake up one morning and the exact same pain, swelling and fingers but the other hand. It involved my fingers, wrists, elbow, shoulders, knees, left ankle and right jaw. I currently have about 60% use of my left shoulder. I bought braces for both wrists and slept in them. I would prop my wrists and fingers up on a down comforter which seemed to help somewhat. The numbness scared me. The hooked shaped fingers had an invisible sign that said, these are not my fingers. It didn’t even look like my hand. My doctor gave me antiflamatory drugs that didn’t do any good. The she gave me a script to relax the nerve endings and that didn’t do any good.
    I am going to state what helped me, but I strongly urge anyone not to follow my footsteps. I was on blood pressure meds. I have had several different ones and have had reactions to all of them. As a last resort I was back on one I had used prior a few years ago. I stopped taking it Hydrochlorithiazide (sp) and Klor Con. I had been in terribly pain. I was to the point of if someone offered to cut them off I was ready. Within 3 days of stopping my BP meds that horrible unbearable pain was gone. Again I do not suggest this to anyone and if you consider it talk to your doctor first. As the time goes by without my BP meds the better I feel, the less flares I am having and much less pain. My disease finally has a name. I was diagnosed June 28th 2012 with PR. Prior to diagnosis, I stopped all soda drinking, turned to water and green tea. Whether that has had anything to do with it or not I haven’t a clue. It isn’t gone by a long shot. But it is tolorable, for now. My BP stays in the 130′s and 40′s and occationally jumps to the 160′s. Again, I do not suggest going without them wihtout consulting your doctor.
    I know for me, my BP meds played a huge role … I can button my blouse now and pull up elastic waisted pants lol and I can turn the door knob again. Any wrist or finger flares I wear my braces. They do help.
    6 months into it…. Hopefully the worst is over.

  24. I first experienced symtoms of PR at age 45 (9 yrs ago) and the onset was extremely severe and painful. I went to my local GP and he suggested I see a rheumatologist. The Rheumatogist did not explain my condition properly and I was led to believe I had RA. I was prescribed medication for arthritis and this medication had side effects so I chose not to take it. The onset of my condition was extremely painful and frequent for about 2 years and then it disappeared for well over 12 months. When it returned and the attacks seemed to be less frequent but still painful. I treated the pain with panadol and when it was really painful I took Mobic. I have learned to live with my condition, rest when I need to as I become very fatigued. Over a year ago I went to see another rheumatologist and he was really good and discussed my condition in detail with me. He was told me that I had PR. I was pleased that it was not RA, but he did say there is a possibility I may still get RA. I still have attacks not as frequent as the onset and not as severe. I still have painful episodes where I cannot get out of bed or participate in some activities. At this stage of my life I manage to work and enjoy most things but I do have to look after myself. I know I have to be more active so my challenge is to become very fit and improve my diet.
    Robyn

  25. i have PR and im just 26 year years old. i have been suffering with it for 3 years now and i remember the day it all began; i woke up thinking i had dislocated my shoulder and went to A&E where they told me i had frozen shoulder. Since then i have been persistently at my GP and after 3 years the doctors say i have PR. I just got married and i feel so sad that this has happened. i want to plan my future and i feel that its going to be so difficult now. My husband is supportive and only wants me to be happy but i feel me being unhappy, makes him unhappy (may be its all in my head). im going to try hydroxychloroquine and hope it works. i do hate the idea of being on medication for the rest of my life but if anyone has any advise and tips to stay strong i would appreciate it.
    Anj

  26. I have not been diagnosed by a physician,although have seen 4 different specialists. None know what I have, but I am 100% sure I have PR. I have done a lot of reading and could put my name in place of PR! My flareups started in 1986 at age 32 and continue 26 years later. Two years ago I was in such bad shape, flareups constantly and many other symptoms, that I sought the help of a homeopath. She discovered I was allergic to wheat/gluten and, boy, has cutting those out of my diet helped. She also has me on high doses of vitamin C and other immune system boosters. I read at one point that PR COULD be related to viral illnesses contracted in childhood/early adulthood. (I had many including viral pneumonia and sarcoidosis) thus the reason my homeopath decided to try the immune system boosters. I still have flareups, but mostly can function pretty normally. Last night the first joint, middle finger, right hand was so sore, red & swollen I could hardly stand the pain. Made me feel sick to my stomach, literally. Today I can touch it, and feels slightly itchy. The side of my right foot is sore now, and my left shoulder, but tolerable. All will be gone by tomorrow or Monday. This is my pattern.
    Janet

  27. I was diagnosed 8 years ago and have taken plaquinil hydroxychloroquine trying to manage on 1 a day but in flares need 2 . It has been really effective for me until recently when stress at work triggered a bad flare . Don’t give up manage your stress take the pills and enjoy your family. You will get tired and have off days – that’s normal. I only take pain meds when I need to but on really bad days tramadol are the most effective for me. Your family will go through their own process but keep talking to each other. If you are honest about when you feel crap and in pain or tired then they will come to trust you and your judgement . For me this was the difficult bit -I tried to hide it and carry on – when clearly I wasn’t. We have an understanding now. You can lead a regular life, they know far more these days then when I was first diagnosed. My best tip is buy a small bag peas and keep it for when you flare ( not your neck or spine) . My kids laugh and joke about it because it’s a normal part of our lives encouraged by me and my husband . If you normalise it it’s becomes just that – normal. Sometimes you feel that you have no control over it and the reality is that you don’t. So control the things you can and accept the bits you cant. Remember it’s a journey you are on – you are at the beginning. I hope this helps with finding your road xxxxxxxxxxxxx

  28. Hi everyone, I was diagnosed with PR a few months ago after experiencing crippling pains for about 9 months. I’m 25 from London (UK) and have found it very difficult to come to terms with what’s happening to my body.

    My rheumatologist has been great and put me on Plaquenil straight away. I hate taking medication everyday but I have found the painful attacks are much less severe and dibilitating than they were before I was on the meds. The pain affects many joints (fingers are the worst, but also had it in feet, knees, shoulders and neck) and like everyone else, it comes and goes very rapidly.

    It’s difficult trying to explain the disease to others – I have found that many find it hard to relate to (especially as I’m in my mid 20′s) and others just don’t want to talk about the subject. My partner’s been very supportive but i’ve definitely realised who my true friends are. I’ve been quite shocked at the lack of support from people who I used to consider as a close friends, and apart from speaking to others in internet forums, have found it practically impossible to get any other support.

    It’s comforting to know there are other people out there who know how I feel. Please do get in touch if you live in / are visiting London anytime as I’d love to meet other sufferers. Natalie xx

    • Im sorry to hear about the noit so great support team. So important.
      Keep positive..tho hard I know. ( Essiac.com)
      Take care!

  29. Hi Everyone! I was diagnosed with PR 3 days ago and have started taking Plaquenil. I take tramadol at night to help me get through the pain with some sense of rest though I still wake from time to time when moving. I have suffered a “flare” for literally the past 4 months straight so my RA is thinking that I am ‘evolving’ so I am going through more tests. This stuff is crazy and I am pretty much text book with the exception of the delayed flare which has crippled me on several occasions. I am now on a Gluten Free / Vegetarian Diet and have cut out all refined sugar. I do use Stevia in the raw to sweeten my tea. The diet has helped the severity of the attacks tremendously. Since being on this diet i have not been crippled but do still suffer from strong pain, but I can work and cope. I have 3 kids – ages 6 and twins which are 2. This has been especially hard on them as they just don’t understand why mom can’t do a lot :(. Now that I have a name for this I can look forward to some sort of remission with the meds – at least I continue to hope. Thank you for sharing your experiences! Your knowledge is invaluable to new sufferers like myself.

    Brandy

    • I appreciated your story. Just diagnosed on the sixth of September.

      Suffered for nine years..just diagnosed though.
      Essiac tea helps me. It’s natural. 100%
      I think im going to try Gluten free, since you say it helps you.
      Thank you for sharing!

  30. Hello Everyone!

    Can you tell me if it is possible to have PR without visible swelling? My rheumatologist thinks that it might be PR, but without the swelling, it’s difficult for him to diagnose. I am 37 years old with no history of any joint problems. It started about 4 months ago with sudden, severe pain in both wrists (to the point that I couldn’t turn a doorknob). Now, I get random, sudden pain in my wrists, elbows and knees as well as the weirdest pain around my heels when I walk. It is always on both sides of my body and it comes and goes. I haven’t been able to figure out what triggers it. It truly seems to be totally random. I’ve been taking 600mg of Ibuprofen three times a day as prescribed by the doctor, but I might as well be eating Skittles for all the good it does!

    It’s good to see that there are other people out there that also felt like they were a little crazy with what seems like phantom pain. I was starting to wonder about my mental state!

    • Leigh Anne, I hope others write comments as well, because I don’t know that much about this except my own experience and what I read, but if the pain is exactly the same on both sides of your body at the same time, that would be different from my experience with PR (although it does happen with RA). In other ways, your experience sounds all too familiar. For me, I can see one of two types of of swelling 90% of the time, only when it’s (rarely) in what I call a “long muscle” in my thigh or arm (rather than a joint) do I not see anything at all. I may have misunderstood your sentence, perhaps you just have ‘some’ issues on both sides of your body but not the exact same… but if you are having the exact same non-swelling pain on both sides of your body, I’d suggest that you also see a neurologist or spinal specialist to rule out any potential spinal isues – by which I mean that equal, non-swelling pain could be nerve pain… and having nerve pain on both sides of the body equally, then one source for that might be the spine (where the nerves originate) and you’d want to get that possiblity ruled out. Certainly everything else you described sounds like PR to me.

      Can anyone else relate to no visible swelling and/or equal side issues?

      • Thanks, Julie!

        It is generally on both sides at the same time. Although, it usually starts on one side and moves to the other within 30 minutes or so. Also, the pain can be more intense on one side, but both sides hurt. I think there *might* be some swelling in my wrists, but I have tiny wrists and it’s hard to tell. I also think that the ibuprofen might be keeping the swelling down. It just doesn’t do anything for the pain.

        One question that I forgot to ask the first time. Has anyone had trouble with their vision with PR? I just got a new prescription for my contacts in March, but things have lately been getting blurry from time to time. Not always, but at least a couple of times a week.

    • Leigh Anne…first, your reply to my reply did sound more like PA, so don’t worry about my spine comments, when it’s unequal like that, it’s more like what I go through and others describe, so that’s likely just your *version* of this wierd illness. And, of course, just because you asked that, I’ve been paying more attention to how things have been going in my recent flare, and *now* or I hadn’t noticed before but about half of them do show up on the second side soon after, not the same or the same time but similar and shortly after… also I had a three-day bad flare in one wrist that was completely invisible and felt like I’d broken something, while on the other arm my elbow swelled up three times it’s size with lots of heat and yet almost no pain unless I forgot and tried to actually lean on it. It’s so wierd! Thank goodness we can mention things here that would make healthy people put us in the looney bin.

      By the way, just as a general medication comment, I personally have found that naproxen sodium (Aleve) is a little better for the PR than Ibuprofen, while Ibuprofen is better for the RA, sometimes it’s hard to pick which to swallow when they are both acting up! I’m *lucky* since I’m on Remicade, so all my symptoms are muted, but still… I got to that because nothing else in their arsenal did a thing (unless it made it worse or me sick, like Plaquenil or Methotrexate, awful for me personally, but yay for those whom it helps!). It’s so personal, I had miracles with Remicade and for others it’s horrid, so just keep trying things til you find what works for you. Best wishes to us all!

      • I went back to the rheumatologist yesterday and he’s calling it inflammatory arthritis for now. He thinks it’s probably either early RA that just isn’t showing up in the blood tests yet or PR. Either way, he said the treatment is the same, so I’m starting on Methotrexate tonight and hoping that I’m one of the lucky ones that it works for! Thanks again!

    • I get a very slight pink hue on the underside of my wrist, and my hand turns into an unusable claw. Looks like nothing, but incapacitates me.

  31. I’m 40 years old this month. About nine years ago, I became soo sick I was hospitalized for six days. Over the years, I’ve gone to many hospitals E.R for pain, symptoms that couldn’t be explained.

    Thr last three years I’ve had insurance, taking full advantage of opportunities of seeing Dr’s & Specialist. I’ve been seeing the same Rhuematologist for about two years now. Multiple blood work (inconclusive) multiple medicine (some helped, some didn’t) Severe! Depression, oh, and lets not forget the SEVERE pain….on top on NOT knowing exactly what’s been wrong/making me sick!

    It’s hard explaining thr unknown to friends, even family. I’m blessed by Jehovah to have a great support group of family & friends, even still, it’s been hard for them to Fully COMPREHEND MY world, needs, and accommodations. How can they, our even I, when we never know when it’ll
    happen!

    The HARDEST part has been not knowing….
    Just this past week {9-6-2012} my Specialist (Rhuematologist) said I have PR.
    Didn’t believe him. Why now? I’ve heard sooo many other possibilities over the years…..he doesn’t know. Right?

    Every article I’ve read on line has LITERALLY
    brought tears steaming down my cheecks!!
    It’s
    like reading someone write about me, knowing
    me inside & out, and we haven’t even met.

    I’m suffering even as I speak, with migrain soo
    severe it’s basically immobilized me. 14 hours
    now..& counting! Steroids, pills, sprix, Plaquenil, 800mg ibuprofen, NOTHING takes the pain away!
    NOTHING,
    takes it away! DO NOT like narcotics, don’t want to be “high” all the time…..sooo I chose to deal, I know this is yet another…”wait it
    out.”

    Normally, it is my limbs. Simultaneously! Paralyzing like. Painful. inside.
    I am starting to see a pattern every couple months wirh the migrains…now.

    From today forward, I’m glad I now know what’s wrong wirh me, that some relief in itself!!
    I will start a better tacking system &, praying of course!) And taking essiac tea! (PRICELESS! GET THE KIND YOU HAVE TO MAKE YOURSELF! essiac.com)
    Revelation 21:4 gives me something to look
    forward to.
    AND for now, it’s the essiac tea, DAILY!
    Thank you for articles like these. Allowing me to vent, share, and release.
    Please forgive typo’s..not the best today.

    Thank you!
    Fred- Ricka ~

  32. Was hit hard Nov. 2011. Just woke up and suddenly had witch hands…curved, locked fingers, couldn’t open them. For about a week I couldn’t unlock my hands. Going to the bathroom was not fun. I couldn’t brush my hair, or pull up my skirt easily. Was just possibly diagnosed last week. Does anyone else have s strange lack of flexibility in their heels? It feels tense, so I tend to walk a little like a duck. Not cool!

  33. I was diagnosed finally a few months ago. it all began when I was 16 and I woke up in the middle of the night screaming because my hand was the size of a baseball. I was taken to the doctor and X-rays were done. everything looked okay. I went on to have a few more attacks until I turned 19. Then all of a sudden it was gone. my doc I saw thought it was junior ra and I would grow out of it. thought that was what happened.

    I was wrong during the past three years I’ve been having more attacks. not just my hand; I have it on the top and bottom part of my feet, knees, shoulders, hip and now my jaw. I am only 28. I’ve had tests done and my blood showed Ana+. been tested for ra, lupus, thyroid. after my last episode my doc realized it may be this. after seeing pictures and testimonials I know this is it. if anyone knows a way to control this that would be great. I’m 28 trapped in a 80 yr old body.

  34. Have learned over time that just because there are no flare ups and things are good for several weeks, you should not stop taking your meds. I stopped taking my 4 weekly methotrexate and 1 folic acid for two weeks and suddenly was struck with pain in the shoulder for a day and a half, then started with pain on the inside of my leg where it meets my torso (almost thought it was a swollen gland) and it was very painful, now dealing with slight pain in my right thumb and know that within a few hours I will be in agony. All this pain is usually paired with a general flu-like malaise even though there is no fever, and also fatigue. Really miss going for my walk with the dog but can’t always do it, so when I can I do. Have also found that if I strain (carrying something heavy) or twist any part of my body there is usually a flare up of pain in that area. Carrying grocery bags is a real challenge! Pain killers don’t seem to make a difference. Have been on a diet now for two years due to food intolarences: gluten, dairy, corn, rice, almonds, cashews, potatoes, tomatoes, tuna, beef, and several others. I’ve also cut out ALL meat except for some raw fish. Can’t really say it’s made a difference with my PR but I’ve lost quite a bit of weight and feel more ‘comfortable’. Have lately noticed pain in my back where the kidneys are situated, would they hurt because of the PR? I diagnosed myself and told my doctor what I thought it was, she agreed after looking it up on the internet! I also have quite a bit of swelling in the fingers, not necessarily in the joints, but in between them! This syndrome is maddening, one day you feel like you’re dying and the next you’ve forgotten all about it and there are no scars, so to speak. Good luck to everyone on this site, and thanks for taking the time to write your experiences, it’s been truly insightful and I don’t feel like a freak anymore! I diagnosed this around two years ago and just turned 52. :)

  35. I was diagnosed with RA and Sjogren’s syndrome in 2005. Honestly, I thought I had Lyme’s disease because of the migratory nature of joint pain and limitation, and the fact that I had just returned from a 3 week, major primitive camping trip. For the past 7 years, my joint inflammation has followed the patterns that you describe. Usually quickly affecting one to three joints at a time, lasting anywhere from a few hours to a few days. The pain is often excruciating. I have been followed by rheumatologists since the onset. I started DMARDs within months of onset. My RF and Anti-CCP strongly positive, as well as elevated ESR. I have had one set of hand and feet xrays done 5 years after diagnosis, and a dexa scan that was done at the beginning. When my hand and feet were xrayed, my rheumatologist actually scoffed at me when he told me that I have no erosions. He further told me that lack of erosions indicate that my reports of disease activity is not supported by my xrays. He basically was telling me that I am lying. My photographs of the affected areas DO support my report of disease activity. My rheumatologist would get impatient with me when he asked about joint stiffness and I would tell him that it was more like “pain” and inability to move them without searing pain. He answered for me…..NO joint stiffness. I have always been confused by the term “joint pain”. My “flares” usually involve the tendons. I feel the tendons tighten, I can see the tendons tighten, and the pain is “SEARING”. It feels like the tendons are going to rip. Most accurate description is that I feel that I am being “drawn and quartered”.
    I am seeing a new rheumatologist now, and he repeated all of my RA tests, including ANA. My RF and Anti-CCP positive/elevated. Sjogren’s negative???? Is that possible? I forgot to mention that I have had in the first 5 years a bout of suspected vasculitis in my leg, and last year started experiencing dizziness, changes in my vision and hearing, but I am not certain if these are not medication related. I started Methotrexate in 2011. I still have flares, and they start suddenly, last anywhere from a few hours to a few days. A 30 minute drive in the car can leave my shoulder(s) frozen. I carry with me a portable ultrasound machine, heat packs, and cold packs because I never know when it will start. I often suffer from muscle strains to other areas of the body while attempting to compensate for a lame limb; such as limping with an inflamed tendon in my ankle often leads to a strained back. Since my parking area is more than 1/4 mile from my work station, I requested a handicapped parking permit and was refused. I often call out sick from work simply because by the time I travel from parking to my unit, I am so exhausted that I really need to lie down, or I’ve strained another part of my body. I often have inflammation on the tendon on the medial aspect of the ankle and it prevents me from being able to flex the foot, often requiring me to either turn the foot sideways in order to walk, mis-alligns my hip. I feel as though I am jumping through hoops to get empathy in the absence of bone erosion. I have not received much cooperation with my rheumatologists, which is strange to me. I am a registered nurse of 20 years. The term palindromic RA has never been mentioned to me, but I am going to ask on my next appointment. I am going to also discuss antibiotic therapy. I am currently taking Sulfasalazine 500 mg BID, Plaquenil 200 mg BID, Methylpred 20 mg daily, Methotrexate 15 mg weekly. Last appointment I was instructed to stop ibuprophen and acetaminophen which I was taking max doses for pain with Tramadol. I’m very frustrated. I don’t want to be sick. I have many responsibilities and this has disrupted my life in a huge way. I am disgusted that in the absence of bone erosions, I am being treated as though I am a whiner. My job requires me to lift patients with body weights twice my own, it requires me to bend, stoop, crawl into small spaces and climb over equipment. I have gone from being recognized as a high achiever to being extremely undependable, depressed at times, and my family tells me that I never smile anymore. That was my trademark; smiling.

    • Hi I am a nurse too and can really identify with all you have said. I probably have been having flares for years without realising it as I have severe osteoarthritis anyway but this above and beyond that. My blood results are usually normali managed to see my Gp in flare so at least she knows what I was like. It has made me tricky to diagnose and having read about PR I am going to mention to my rhematologist as I am convinced that I have PR

  36. I was diagnosed with Palindromic Rheumatism last month. I am 40 years old. Thank you for the information, it was very helpful.

  37. I have suffered from PR for about 25 years. It affects my feet, ankles, knees, wrists and fingers. I note that someone earlier mentioned frozen shoulder….I get this too but didn’t associate it with PR. I have found no painkiller or anti inflammitory that can ease the pain at all. I do sometimes get mildly feverish when having attacks. Is it getting worse? I think so….last weeks left hand, started in the wrist, spread to knuckle of little finger and then onto ring finger. This week right hand!! Wrist to thumb joint. Attacks usually last three to four days. One thing that I am finding alarming is that for years and years my left hand/wrist was never affected but now it is just as often as my right wrist. I will have some form of attack about every 2 weeks. I don’t think anyone really understands just how painful it can be. I do get severe swelling and redness during my attacks. Something no-one seems to have mentioned…..when the pain has gone but the redness remains, when I have a bath the affected area really burns on the surface! Stay strong everyone. Oh, I don’t take any drugs any more as I found nothing worked.

    • Bob, I know exactly what you are talking about with the burning when bathing. I had a flare up recently on my lower spine. It felt like someone was pouring scalding hot water on my lower back. When I am having a flare up in my hands it hurts to wash my hands much less wash dishes. It is very painful. I don’t think my family really realizes how much pain I am in when a flare up happens.

      • Oh, yes, the burning skin sensation! The best explanation I can give is that it feels like a really bad burn or sunburn, the way that touching the skin feels when it’s really red and inflamed over a swelling… the way a bad sunburn feels to have something touch it or water run over it – even slightly warm water feels like it’s too hot. At least describing it ‘like’ a burn or sunburn is something others have experienced and can relate to a little.

        On a not completely related note — I keep repeating that I think I am *lucky* that I’m on Remicade – I was put on that for my original RA. Now, granted, I developed PR while on Remicade, so that was lousy, but although the PA is painful and annoying and definitely hurts, I can’t say that a PR flare up is ever ‘incapacitating’ like others have mentioned. It will ache on it’s own, and be painful to use my hands or fingers or another joint or to rest weight on, say, a flared elbow… it can make me limp if it’s in my foot or a joint or long muscle that won’t bend properly to allow usual movement… it can make me want to wear a brace to ‘alert’ others that ‘something’ is wrong so I’ll be using my wrist in a manner that won’t aggravate it, it can make me grimace or wince ‘out loud’… and it makes me reach for Aleve and want to hunker down lessen my day’s activites if I can – but I keep thinking even with all of that, I ithink that many of you describe a more literally PAINFUL experience than I experience – and I can only think that it must be because of the Remicade.

        When I was suffering with very painful and nearly incapacitating RA before Remicade, “nothing” else really helped, and we tried ‘everything’ for RA before getting to the biologics. I can’t tolerate steroids for any reason, same with Plaquinil and Methotrexate and Leflunamide (sp?) and many others, it wasn’t just that they didn’t help any,,, they often made me feel worse than taking nothing. Until we tried Remicade – which was just a lucky guess of which biologic to try first, but it has been 5 years now of about 80% remission with it. Granted, I developed PA while on it, and there are unpleasant side effects of having a lowered immune system, but I’ll trade that for the pain and limitation reduction any day. So, my point in all this is that if you haven’t yet tried a biologic (a DMARD), then you haven’t tried “everything”… and it might be worth it – especially for those having flare ups ever few weeks or more. There are over a dozen of them to try now – there were only three or four just five years ago. I am lucky that my insurance has covered it all this time – I know the doctor had to justify it with me having tried everything else first, but if you can, please do consider them. I know one anecdote is not a good predictor of any one else’s outcome, but gosh, I would be so grateful to hear it if anyone who is suffering found something that helped.

        Best to us all… julie

  38. Hi folks,
    I’m a 53 year old male who was diagnosed with pra just before Christmas 2012. I had suffered the previous month with severe roaming joint pains which were sometimes debilitating. My family physician referred me to a rheumatologist and had me undergo blood work which showed the classic rheumatoid factor and metabolites indicative of pra. The rheumatologist upon receiving the results of my blood work arranged for an immediate appointment and saw me in mid-December. She prescribed prednisone and methotrexate. The initial prednisone dose was to be 15 mg (three 5mg pills) which I was to “ramp” down over the course of the next few weeks while I “ramp” up the methotrexate during the same period. I’d be taking the methotrexate weekly.
    The rheumatologist gave me specific instructions to call her if I had any questions or concerns which I did after the symptoms did not subside after the first several days. She called my pharmacy and upped my prednisone dose to 4 daily. I called again after I didn’t experience relief during the next several days. This time she actually returned my call and inquired about my size and weight (I’m still wondering why she didn’t pick up on this when she saw me in person). I’m a big guy so she came to the conclusion that my prednisone dose was still too low. She doubled my prescription. That night, after my visit to the pharmacy I took another 4 pills. The relief was almost instantaneous. I awoke the next day and all my pain and swelling were on the mend and over the next several days (Christmas break) I got increasingly better each day. It’s been a few weeks since I began the prescription regiment but I’ve stayed on course with ramping down my prednisone dose 8-6-4-3-2 and eventually 1-0. After finishing with the prednisone, my understanding is that I’ll keep a stash available for flare-ups. That will present a whole new learning curve for me but I am willing participant given the initial relief I’ve experienced thus far. I’m at my prescribed weekly dose of methotrexate and am ready for my first monthly follow up blood work. Methotrexate can apparently be harsh on the liver and a monthly test is required to monitor it.
    I felt compelled to tell my story after reading many of the responses by persons above who appear to be stuck in a situation where their symptoms are ongoing. I’m not sure whether it was my insistence with my rheumatologist when I was not improving or the fact that my pra is somewhat different however, I’m a bunch more optimistic about dealing with my prognosis knowing that the symptoms and pain are manageable with the right treatment.

  39. I can’t believe I have finally discovered the reason for my debilitating pain that has come & gone randomly over at least the past 15 years. I am 54 now and have spent all these years knowing there was something wrong with me, but the doctors pretty much wrote me off as a kook or a hypochondriac.
    Wrists so painful they don’t work, shoulder so bad i have to use my good arm to lift it up, feet so bad that I told the doctor it felt like all the bones were broken, knee, hip, neck, toes, fingers… so random. Bad one day, next day out playing tennis.
    The severe ones would last 2 weeks then miraculously just go away.
    After spending the morning in the emergency room last week because i was practically crippled, being discharged with the doctor saying i had “a cold”… (seriously??), i decided to do a little online research and quickly came upon this diagnosis. It describes me to a T. (and yes, i was absolutely fine the next day… try explaining that to your friends & family!)
    I always attributed my flareups to being “allergic” to red meat. Coincidence or not, the pain typically came after eating even the smallest amount of red meat, usually not knowing i was doing so (chicken cooked on the same grill as steak for example).
    After reading all these posts, i am dumbfounded that no doctor could ever put the pieces to the puzzle together. I have a physical scheduled next week and will bring it up… just figure she will think i’m crazy.

  40. Try TAI CHI – seriously!
    I was tired of hurting, tired of being in pain. I remembered hearing, a few different times, that Tai Chi is good for arthritis.
    It takes persisistence and commitment, but for me the pay-off was big. I still sometimes take Tramadol for pain, but seldom.
    I was diagnosed with Palandromic Rheumatism in 1977. Those symptoms (the incredible pain) faded away, as I developed Crohn’s Disease. Now that the Crohn’s symptoms seem to be in remission, the arthritis is back with a vengeance.
    I was incredibly debilitated. Now I’m not. I don’t dare stop. I’m hooked on Tai Chi.
    P.S. One benefit of having Crohn’s Disease, that prescription (Sulfasalazine) is good for arthritis as well!

  41. Well I have experiences these episodes of joint pain that “jumped” from one joint to another for over 25 years. I’m now 66 years old and have just been diagnosed with PR by my Rheumatologist. I gave up many years ago trying to get some diagnosis for my pain and just gave up asking. Lately I’ve seemed to have an increase in flare ups and someone mentioned going to a Rheumatologist…So hence the diagnosis. He has put me on Meloxicam & Hydroxychloroquine. I understand its takes a few weeks to start working. My pain areas are mostly shoulders, knees and feet ankles. But lately my hands have been getting much worse. I try to live an active life, but have learned to live around my episodes of pain and disability. My pain is usually quite bad, on a scale from 1-10 it is usually a 9.
    The episodes are as described above, Pain starts late in the day and can be so bad I go to bed and sometimes cry out in pain when I move that area of joint pain. I can wake up in the morning and be completely pain free. I’ve had 5 children 4 of which were natural childbirth…so I pride myself on tolerating pain quite well..But sometime this pain is severe!

  42. hi all i have found the site to be very helpful and finding others who suffer with PR pain,does any one have blisters / cankers sores in there nose? i will be very interested if any one else does. i have had them now for one year same time as the PR started to develop. look forward to any help :)

  43. Thank you for sharing about the red meat, Caroline… I had noticed that chocolate will always give me a flare up but I get them other times, too and wondered if there was something else I ate that got me, too… I’ll try to keep an eye out for red meat, now. It’s probably different things for different folks, but it still helps to know I’m not the only one who has connected it to a food.

    Trish, I don’t get sores in my nose, although I do get odd “no known reason” blister-types sores in my mouth once or twice a year. Although I hadn’t thought to connect them to the PRA, it’s certainly possible.

    • Oh thank goodness my connection is red meat and not chocolate!! That would be too hard for me to give up!
      And Trish, no sores in my mouth or nose but I sure get a lot of sore throats. And stinging in my mouth. Probably no connection?? Anybody else?

      • I get blisters in my mouth and swollen glands and sore throats too. Anyone get rashes – I have one on leg which gets really angry when I get a flare.

      • I have just started to eliminate red meat….last ten days actually just to see…………..no such luck 3 accounts of attacks….damn it I thought putting down the beef would be the cure….lol Ya I know no real cure, but lord knows I Keep trying. I find “once” a month for sure I end up with an attack usually a full wrist or upper arm flare. The claw comes out or the sling gets put on. Don’t get me wrong once a month is not my only treat. Flare ups happen quite often to me and include just about every part of my body at this point. The back of the head and right side rib cage are the strongest most painful episodes I have experienced to date. I am tired as I am sure so are the rest of you….but we gotta keep fighting!!!! Right now I get to type cause my hands are good so with that I send love and ligtht to you all and hope tomorrow “all body parts are working” :))

  44. Hi, I started getting strange and random pains July, 2012. It would start as just a “sore spot” on my wrist or ankle or top of my foot, and rapidly (within a couple of hours) develop into a full blown painful situation! Then, the next day it was just gone, leaving a red place where it had hurt, but pain would be gone. Then one night, I was awakened with pain in my arms and hands that would not go away, no matter how many Aleeve, etc I took. I went to my GP and he said it sounded like “migratory arthritis” and gave me Rx for pain medication. I took it upon myself to go to a rheumatologist, who did the blood work and found the elevanted C-Reactive Protein, but RA was negative. Tried to manage with Prenidsone, but kept coming back, then it started developing a pattern of being mainly in the hands (I know the famous “claw” everyone is talking about!), knee, feet and jaw. Finally started plaquenil, and finally, consented to Methotrexate. My doctor drained my very painful knee and injected cortisone into it 3 weeks ago, and I have actually been pain-free for 3 weeks (so nice!), but I don’t know if it is that injection or one of the meds working. I am blessed to have a wonderful doctor who cares. She told me she thinks it is PRA, but could possibly be RA, too. All I know if it hurts, and I need to get back to living! I’m 57, female, always been extremely healthy; this has been a real show-stopper for me; feel badly for people who have suffered for years. THanks for sharing; it is comforting to know people understand.

  45. Hi Fi you will find that rashes are very common with PA and i believe that sore throats are symtoms as well. when i feel real bad my body aches like the flu and my throat is dry and tender it is different from the flu its like the immune system is fighting the disease. i am sure others have simalar experiences.:)

    • Hello,
      I came across this site while researching info on PR. I have all of the PR symptoms I’ve been reading for the last half hr or so on this site. At last some others who have experienced what I have. What wondering is this… Has anyone done any kind if testing of their adrenal system and how it might play a role in flare ups? I have noticed subtle changes that in paper appear in the normal ranges drs like to see but for someone like me who has always been consistent in lab work, even a subtle change is enough to throw things out of wack. For example my thyroid levels have elevated slightly. By slightly I mean about 1.5 points. However I have gained 5 pounds and retain water like you would not believe. All this despite being healthy super super active and watching everything I eat and drink. I’d be curious to know if anyone else has explored down this path of testing? Being active I’m not for taking a bunch of meds to treat symptoms. I would rather get to the root of the problem and then devise a treatment plan. However, most drs would disagree. Your thoughts?

      • I will never forget the day that after my Rheumatologist gave me a prescription to start to manage my condition, I returned to him not haven taken them and said I was trying to fight it as natural as possible…..he basically said hows that working out for you……not good not good at all. With all my wishes of trying to figure out a way I just couldn’t take it anymore. The amounts of flares weekly were outrageous, the pain was astronomical, the dabilitating life it was giving me simply was just not worth it. I now take meds for my under active thyroid condition (thanks PR) and take Methotrexate for my palindromic. Just saying that sometimes you just have to let our medical society win and help us with treatment …..good luck :)

  46. Has anyone ever had swelling around their lungs? I have all the other symptoms – swelling around hands, fingers, feet, knees, elbows, fingertips, palms of my hands – not being able to take a breath without pain is incredibly difficult. Can’t lie down in bed, can’t sit down comfortably – just pretty much pace for hours on end.

  47. Well finally I come across other people that truly understand how it feels to be living with this crazy disease. I was diagnosed 2 1/2 years ago and at that point I was misdiagnosed for almost a full year. I since have become as educated as I can about this disease and have started to actually record patterns…to some degree but I never loose sight of it’s unpredictability. I believe I have experienced just about every area of my body with this inflammaiton game. The worst was the attack between my spine and skull now folks let me tell ya that one sent me to hospital :(( I am very familiar with the pain that comes with PR but that day I thought my head was going to pop off and thought “could this be something else” NO…..good ol PR reminding me it has the choice to go anywhere in my body.
    I started treatment with paquinal and my body rejected them aggresively….three months trauma for that experiment!!!!! I also have Chronic Uticaria which makes it very challenging to take the proper dosages of meds to manage my disease. I am currently taking Methotraxacate and “dealing” with it.
    I am installing a hot tub with hopes that will help with absolute pain when an attack occurrs. I have reduced all carbs in my diet hoping that some weight loss will help. I have started to ingest powerful immune foods, again hoping for the best. I now make my own heat and cold pads because I kept exploding store bought packs….guess I use them more than the average Jill :) I wish to learn as much as I possibly can about this disease and learn how to beat it….yes I said it PR beat it!!!!!
    Sometimes it’s just nice knowing someone understands this pain and I am grateful to have found this site ……..any tricks of the trade to relieve the inflammation and the pain and the overall episode, I assure you are welcomed. Good luck with today and may tomorrow be as simple as getting up saying “all body parts working”

    Cheers
    Virginia

  48. Has anyone tried a far infrared suana? They sound good. I’m thinking of purchasing one later this year to see if they help with my flares,

  49. Like so many here, I have been searching for a diagnosis to explain these inflammatory attacks. Two years ago saw a Rheumatologist and he dx’d me with RA, Wanted to start me on meds but I would have to have liver functioning monitoring and eye exams. I was only having occasional flares at the time and decided to try to control them with diet. Bacon, Brisket, Sausage, etc, will set off a flare immediately. Didn’t work. I avoid those and I still have random attacks. They have started to increase in frequency. Mostly in forearm (I have nodules), knees, feet, hands and fingers. I have always had random short painful episodes in my neck and shoulders but attributed them to “just sleeping wrong”. I am active and otherwise very healthy. All labs and test return normal. Slight elevation in R Factor. I have also noticed in the past year “fluid retention” issues and inability to lose weight. (I blamed this on growing older. I’m 45).
    During an attack, i have found nothing alleviates the pain. It does feel like you have broken a bone. Four years ago I wrecked on a dirt bike and broke my clavicle in 3 places. The pain that peaks during a flare is worse!!!!
    Last week I began having severe chest pains. The pattern fit one of my typical “flares”. My BP was normal so I just waited it out. After it peaked, it was only painful when I took a deep breath. (I had a similar episode back in Aug. of chest pain when I breathed deeply. Lasted only a few hours, EKG normal, pain was mild).
    So again, I went to the Dr. the next day. EKG, Cardiac labs, and stress test…….all normal. Not heart, muscular-skeletal!! Has anyone else had the chest pain with PR.

    I think it’s time to go back and visit the Rheumatologist. Maybe start those meds. :) So relieved to finally have a name to go along with this transient craziness.

    • I have also ha the chest issues. It feels like my sternum is bruised or sometimes it’s a achiness between my should blades. The usual spots are hands, knees, feet and occasionally one shoulder. Diagnosed with PR finally in January and have been on Plaquinel which is doing very nicely for me, even if I miss a dose. My labs hae been exactly like yours for 10 years. I also have experienced the weight issue (46 years old). I figured it was partially because of lowered activity level because I couldn’t walk comfortably half the time.

    • Yes I have been to A&E twice (emergency room) once in an ambulance. Both times was my PRA in my ribs and chest that mimic heart issues. They gave me the blood gas test 6 hours after the severe pain and both times came back normal x you need to be careful though because the danger is that u put everything down to your condition x

    • I too have PR and have been admitted to hospital with severe chest pain twice recently. EKG ,labs etc all negative. I also had an endoscopy as esophogeal spasms were suspected but that was also normal. The doctor who examined me thinks it is inflammation in my sternum due to PR.

  50. I awoke one morning with a stabbing pain between my scapula and spine. It then moved to my chest and down my left arm, causing my arm to go numb. Being a nurse, I immediately thought of a heart attack, but “waited it out”. sure enough the pain has stayed with me for 6 wks. Been to my family doc had xrays, MRI (both normal). Acupuncturist, massage therapist, chiropractor, nothing has helped. A few days ago the pain traveled to my left first finger–can’t bend it, or Calling my doc today.
    Thank you for this forum–you all have helped my so much

  51. I was diagnosed with PR a little over a year ago. I am thankful that my doctors were able to diagnose me quickly (took about 4 months from the time I started seeing the Dr. – suffered for 6 months total before diagnosis). I am being closely monitored for Lupus. My experience was EXTREMELY painful and I was started on Plaquinil right away. It took about 6 weeks, but I responded well to the meds. I am on them today and my flares have been short lived and infrequent. I believe that is in part to a mostly vegetarian, gluten free diet. My RA has started noting that her RA patients that go to a gluten free diet have shown improvements in their inflammation and degree of flares. There is no data to support it, but the office I visit has a lot of people now on GF diets and other patients I have spoken to swear by it noting an almost immediate improvement in their symptoms. So, thought I would share as it might help others!

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