I had no idea this web-site existed. I have had PR for 25 years and at the
beginning thought I would be in a wheel chair by now. I have had the
greatest difficulty persuading my GP that such an entity exists and my
rheumatologist has treated it as he would rheumatoid arthritis. It was
tremendously heartening to discover that other people were having the same
symptoms as me.
How can I get on your forum to share my story and to see how other folks are
dealing with it. I would be glad to make a contribution or whatever is
necessary.
By the way I am not an MD. I have a PhD hence the title below.
G**** F****

Hello,

I just came across the IPRS website, and had to write to say Thank You! I was diagnosed with palindromic rheumatism about 2 years ago, and have had difficulty finding information about the disease. It is somehow extremely helpful to know that many others around the world suffer from this odd and unpredictable pain. My story thus far sounds much like the IPRS founder's, Paul, with every joint in my body having been affected at one time or another, and periods of remission, where the hope is that it "just went away on its own." Again, thank you for this wonderful website, and I hope you are encouraged to know, as I am, that there is another who literally "feels your pain."

God bless,

D*** W*****

M************, USA
 

Hi Paul

It’s a few months since I discovered your website. I have been watching from the wings and regularly reading the forum “chat”!! I have to use my husbands e-mail address because mine is work related and this is too personal a matter. This is my story.

My name is S**** J***. I live in G******. I am 46 and married with two children in their twenties. I have one grandchild. I work 4 days a week as an Office Administrator. I had to go part time due to PR. Nearly three years ago, at Christmas, I hurt my hip (I thought). The pain became so severe over the next two days I eventually went to A & E for help. Pushed in a wheelchair by my daughter and laughing helplessly at the insanity of the situation, nobody of course, could tell me what was wrong.

I recovered and had a niggly hip until February 2005 when my ankle “went”. Then my upper spine and neck quickly followed by my shoulder flared up painfully. My hips, each in turn, gave me pain. My toes ached and my finger joints throbbed. I was very stiff, had a sore throat and felt constantly like I was coming down with the flu. I was also anaemic.

I am very lucky to have a good GP. When I saw him for the second time that year with joint problems he took many blood samples and referred me both privately and to the NHS.

At my first appointment I was diagnosed with PR. I am very lucky. I was put on Plaquenil and improved within weeks.

At the moment I am having more frequent flare ups. My knee is the latest new joint to flare.

Either side of my body can be affected and I usually find that when I have had a bad flare in a joint on one side, the other side seems to “join in”, but to a lesser extent.

I have asked my husband to type this because I have had tendonitis in the past and try not to type at length.

In this account I am missing out a large amount of detail. I am giving my story so that I can be added as a statistic and give the information so that it can be accessed by any professionals who are collating information on PR.

S**** J***
 

To whom it may concern.

I was just looking for some info on the web and I came across your web site.Very good site for those with this terrible diesease. Myself was diagnosed with this as well.In April 2005 it all started two weeks after coming back from the Dominican on a vacation. While as was at work my left hand thumb and forfinger started to swell right up.I couldn't think of for the life of me how I hurt myself.The following day it went away but appeared on the other hand .So I wondered what the dickens is going on here.So off to the doc I went and she didn't have any idea either as to what was causing this.So a week later its still travelling to different areas everyday so went back to see her.So she sent me to a tropical diesease doc and after tons of blood work and around a dozen trips he also had no idea .So back i went to the family doc and she sent me to see a Arthritis Doctor.Well after 15 minit check up she tells me I have Palindromic Rumitisum.So she put me on some pills that didn't do anything at all,and so after three weeks of trying i am now on crotches.Back to the family doc and she put me on some other kind of pills that didn't work either. So back to see that doc who diagnosed me with palindromic.What she told me was very interesting.She said she once had a woman in her early thirtys who has the same thing and came in with a swollen wrist ,so she made an appointment the following day to have the fluid removed and sent to the lab.She also had a 44 year old man who had all the same symptoms as me also had the fluid withdrawn and sent to the lab.This man was sent for a cat scan and they found a tumor on his chest bone and when they removed this tumor all his sysmptoms dissapeared.
So off I went for a cat scan. Results came back as a cyst on both kidneys ,then they sent me for an ultra sound
No signs of tumors anywhere.So back for another cat scan and they said that its nothing to worry about.So went back to that specialist and now we are gonna try something else.She wants me to stop taking my meds two days before my appointment so they can withdraw the fluid and send it in.Right now I take Arthotec two times a day which really helps alot but when the swelling gets so bad that it might effect me from workink Ill take one 5mg pill of predisone and within three hours all the swelling is gone. don't know if any of this sounds familiar to anyone who reads this but I do know one thing ,I won't give up and I must keep on fighting this because I refuse to live like this.My appointment is on December 12th. I will keep you posted as to what they have found.And again great site and i feel for all you people who have this. Thk God for a good medical plan here in O****** C*****
 

thks

J**

Hi,

I am a 36 year old British soldier who has suffered very regular over the past 12 years. It has only been after treatment from a Rheumatoly Consultant at ** ******* Hospital ****** for the past few months that I now feel I will be eventually diagnosed, next month. He suggested it to me, as I had never heard of PR, that I should enquire and investigate online. This after 11 years of being told I have everything from gout to dropped arches.

I followed his advice and PR is me to a tee. Attacks my feet, ankles and knees. Sometimes heat, discoloration and swelling whilst other times nothing just intense unbearable pain. Even my elbows!! No warning the pain just comes and goes, though, im my case often lasts months. I can not walk, climb stairs, get into or out of a car ( try doing this when you can't bend your knee!!) The pain is very,very severe. This has been documented.

I have had various scans inculding MRI. No bone damage shown. Though one showed shading on my feet that where painful. Again, this is consistant with PR.

Please advise....Do many or any of your known suffers have military or similar, say police men or post men (on thier feet all day), type professions? I would be interested to know if this type of active profession played any role in my condition. Personally I feel that there must be a strong connecttion between carringy heavy weight over ardous ground for a pro-longed periods. I woulkd be very appreiative If some one could advise.

As I will be leaveing the Army with this condition how do the DHSS see it??

Please help as I am very concerned.

Regards to all,


Best Regareds to All,     

Hi Paul

It’s a few months since I discovered your website.  I have been watching from the wings and regularly reading the forum “chat”!! 

My name is S**** J***.  I live in G******.  I am 46 and married with two children in their twenties.  I have one grandchild.  I work 4 days a week as an Office Administrator.  I had to go part time due to PR.  Nearly three years ago, at Christmas, I hurt my hip (I thought).  The pain became so severe over the next two days I eventually went to A & E for help.  Pushed in a wheelchair by my daughter and laughing helplessly at the insanity of the situation, nobody of course, could tell me what was wrong.

 I recovered and had a niggly hip until February 2005 when my ankle “went”.  Then my upper spine and neck quickly followed by my shoulder flared up painfully.  My hips, each in turn, gave me pain.  My toes ached and my finger joints throbbed.  I was very stiff, had a sore throat and felt constantly like I was coming down with the flu.  I was also anaemic.

I am very lucky to have a good GP.  When I saw him for the second time that year with joint problems he took many blood samples and referred me both privately and to the NHS.

 At my first appointment I was diagnosed with PR.  I am very lucky.  I was put on Plaquenil and improved within weeks.

 At the moment I am having more frequent flare ups.  My knee is the latest new joint to flare.

 Either side of my body can be affected and I usually find that when I have had a bad flare in a joint on one side, the other side seems to “join in”, but to a lesser extent.

 I have asked my husband to type this because I have had tendonitis in the past and try not to type at length.

 In this account I am missing out a large amount of detail.  I am giving my story so that I can be added as a statistic and give the information so that it can be accessed by any professionals who are collating information on PR.

S**** J***

Hello Paul,

Firstly a very informative website, one which I have been able to use to and read from to reinforce to both myself and my wife that PR really is a painful condition.

I live in ............ New Zealand and have since around the mid seventies suffered in some form or other from painful and swollen joints. I think it all started when I was a farm worker and my living quarters were cold and damp.

In those earlier years I suffered from extremely sore shoulders, but cannot remember a great deal affecting other areas of my body. However as the years have progressed so too have the areas of my old body which are affected. Very rarely do I notice two areas affected at the same time, but very rarely does the condition affect the same area twice in a row.

I have a belief that weather plays a large part in the onset of PR to any joint as far as the condition affects me. For example here in ............ we have a weather pattern which as an end result delivers a fohn wind to the .......... Plains. Usually around three days prior to the onset of this weather, I start to stiffen up and a joint will start to swell, as soon as this weather pattern changes the PA will disappear as quickly as the onset.

I have seen many Doctors as well as a Rheumatology Professor and as portrayed on you website there is no known cure. Pain killers and tolerance is about the only advice I have received to date.

Earlier this year, whilst riding to work one morning, I hit a kerb, it was dark, and I went over the handle bars. A couple of broken teeth, split lip and one very sore shoulder later I found myself attending an Osteopath to try and get my shoulder working again. He did manage to get it working, but also gave me some exercises to do, to try and relieve the stiffness in those joints which were being hit with PA at the time of the visits. While they do not cure or remove the problem they have definitely helped with the mobility as far as I am concerned. However, since that fall in mid May, I have suffered continuously with PA. Hardly a day has passed that I have not been 100% free of PA, and yes it does get you down.

Yes I too have had blood tests, x rays, fluid drawn from swollen joints for analysis, fluid drawn to relieve the pressure, but all results have come back clear or negative.

I have tried homeopathic as well as natural health remedies but to no avail.

As the Rheumatology Professor said to me that this area of medicine is not a glamour area, hence not a lot of focus or research compared to other areas is carried out, so I guess we just have to live with it the best we can.

W.... R........

Keep up the good work

I feel compelled to write to you having discovered your great web-site! I have been unwell for over a year, this time last year was diagnosed as having post viral myalgia having had several acute episodes which dwindled away. I was quite sceptical regarding the diagnosis especially as I had nothing to show the consultant who probably thought my GP was over-reacting! Well, just before Easter of this year I sustained a swollen knee and ankle, couldn't work out what I'd done to cause this, thought nothing more about it, could function normally. On Easter Monday my left wrist felt as if I'd strained it, couldn't work out why, well my whole hand, wrist and fingers became so swollen and fixed, the pain was agonising. The next day the same thing happened to my right hand so was incapacitated having to draw the curtains open with my teeth! Also I had a swollen ,red right elbow. I am a widow, no boyfriends!, live with three dogs so I had to do for them. Luckily my son was coming and stayed till I could kind of function. To cut a very long story short was off work (am a theatre nurse) for 4months,went back to work when I had a flare -up and was off for nearly another month. I have felt nobody in the medical world cares. Having been sent a copy of the letter from consultant to GP, diagnosis was palindromic arthralgia/arthritis so went online and found this web site. It is very hard being alone and wondered if there was a support group in my area, North Wilts,...... from Bath? I could go on at great length, if you are not bored now, you will be! I didn't mention my age if that's important, a very young 59yr old who feels at times100yrs!

Regards A......

Hi my name is B.... and I live in C......., WY. I found your web site and match many symptoms for PR but my rheumy only thought about it for a couple of seconds, said no and would not discuss it any further. I don't really think that he knew much about it and he wanted me to fit into an RA diagnosis but I don't. My PCP is great and is open to discussing PR but I don't see her until Nov. and I had a couple of questions.

Any tests of mine come back neg and I do have redness on my wrist matching one of the pictures posted on your site but mine never goes away anymore. Also 4 second finger joints, both knees, both ankles and some toes, right shoulder and lower back are affected, not always at the same time but 2 or more are always in pain. Also there can be light swelling and I have round pockets like swelling about 1-2" diameter and 1/2" protrusion on the outer side of both knees and both ankles that never go away but can get larger when really flaring and are not red.

The largest symptom for PR that I do not follow is that my joint problems never go away anymore, they use to, but 3 rheumys say that I don't have RA. Your site seems to describe the symptoms as leaving at times so I wanted to know if anyone had a firm diagnosis with symptoms like me.

I have been diagnosed with Fibromyalgia by 2 Dr's but Fibro does not swell or turn red and my joints are in awful pain all of the time but change areas though the red left wrist is always flaring.

I have had these symptoms for 18 months with no diagnosis and appreciate any knowledge you can offer me.

Thanks and have a great day,

B....

Hi, I was just doing some research tonight and ran across your site. My husband has PR which has turned into RA. His still moves around in the weirdest places. He has been on all the medications, through all the series from Enbrel, Humira, and now Remicade infusions for the past year. These aren’t working anymore, and they are now considering the newest medication in the US, which is Orencia. No one knew what he had when he first started getting ill about 10 years ago. They accused him of just wanting pain medication. His progression of the illness has caused him to lose his job of 22 years and be demoted. Tonight, he is having a flare in his tailbone, base of spine. He has never had it there before before. He is 49 years old. We just keep the faith that God will one day heal him or they will find a cure. I just want to encourage you to have faith. Some of the injectables helped real well for a time, but it seems after awhile, the disease becomes immune to the treatment. He at times has to have crutches, wheel chair, etc and loses lots of work.

Thanks for the site. We live in A......., TX.

I have just found your website and after about 20 years of pain and frustration (not to mention thinking I was going mad!) I feel as though a light has just been switched on. Reading through the symptoms of palindromic rheumatism, I felt I could have written it myself! I have had pain in my knees, shoulders, feet, wrists, fingers, elbows and even my jaw, on and off for about 20 years and when I went to see a Physician, he more or less told me there was nothing wrong with me. I now feel I can go to the doctors and ask if he thinks it is PR.

Thank you so much for all of the information

J.... G......

Hello Paul,

I was very interested in your new website, having suffered from PR since 1980. I usually type in PR from time to time and yesterday I found you!

I had had all the blood tests, but nothing showed up. However, I was eventually diagnosed a few years later, about 1982 by a specialist rheumatologist at our local hospital. Unfortunately, there was nothing to help except pain killers, but at least I knew what is was - it had a name, but nobody understood what caused it or what would happen in the future. Apparently, they still have no idea yet.

I was delighted to read all about my symptoms and that they were coinciding with yours - the debilitating frustration of not being able to walk, and the burning sensation, the movement around the body, the swelling and heat, easing off of pain in one place one minute, yet knowing and feeling it was going to hurt somewhere else the next.

Don't despair yet, you are young, and I am sure it will diminish as you get older! I am now 59 and have been having longer breaks with remission - sometimes years in between. It is not so debilitating now, although it does cause me sleepless nights from time to time. (I have a touch of osteo arthritis now, after a sailing injury 15 years ago, which causes my knee and hip to suffer a bit.)

I note that PR is on the World Rare Disease List - I had no idea there was such a thing! Perhaps this will help me to get to grips with it being 'rare'!! We must be an exclusive group of sufferers.

I keep honey bees, and this year was subjected to about six 'nasty' stings, which are supposed to help boost the immune system, but I have not noticed any difference yet. Honey is good for helping sleep - try some local honey from your area - preferably with pollen grains still in it. It might help.

Kind regards,

K.... B..........

Hi - Just discovered your web site this morning. Haven't had time to browse through it thoroughly yet but - THANK GOODNESS someone is writing about PR! I've had PR since I was a teenager - first attack I can remember would have been age 13, 1967. Took till the 1990s to get a diagnosis. In fact, took that long to get a doctor to take much notice. Have bookmarked your site and will be back!

Cheers

M......

Dear Paul

It has been a long time since I bothered to search the net for info on PR. There was nothing when I was diagnosed and didn't bother again. Your site is really informative and wish you all the luck.

I have suffered with PR for years and was diagnosed about 4 years ago. I was very lucky to have a consultant who was researching PR. Unfortunately she has emigrated to Canada and hope that my new consultant, who I am yet to meet, will be as understanding.

I thought that I would just let you know that I take a combination of Devil's Claw, Cod Liver Oil and Glucosamine Sulphate and, I am pleased to say, that I have reduced my number of 'attacks' by 50%. It took about 4-6 weeks before I felt the effects of taking the combination.

I feel that it is the Devil's Claw that is the main contributor as when I ran out for 3 days, I had such a bad attack, I could not walk for 3 days and struggled for over a week. I am now too frightened to run out. I take 510mg per day as a maintenance dose but took twice the amount for the first month and double it if I am getting an attack. The Glu. Sul is taken in 1000mg per day and the Cod Liver Oil is 480mg per day.

As you quite rightly say, different strokes for different folks, but I do really believe that this works for me. Maybe it is only in my head but if that works, who cares. Taking this combination allows me to continue with my job as a secretary, drive my car, go on holiday, etc. I lead an almost normal life. I have a very high R. Factor and have been told that I am very likely to develop RA in a few years. A bit of a daunting prospect as I am only 38 years old.

Devil's Claw is not particularly cheap but to me, it is worth every penny.

I just wanted you know what works for me in the hope that maybe it might be worth a try. My, now ex, consultant was also fairly convinced that there was something in the Devil's Claw and had started to recommend it to other sufferers when she moved on. Now I will not know if the benefits are wide spread.

Hope you are well and thank you for a very interesting site.

Regards

L.. D......

Hello~ my name is M....... J.... and I live in H.........., M........ U.S.

My first symptoms appeared 8 years ago when I was 2 1/2 months pregnant. Then nothing for a couple of years and then symptoms every now and then. The last 2 1/2 years have been nothing short of a living hell. I have been to a Rheumatologist and an Immunologist and their best guess is that I have Palindromic Rheumatism. When Vioxx was available I have to say that it helped a lot. I still had the stiffness but it helped with the pain and I was not left completely helpless. I have to say that I would rather take my chances of dying of a heart attack than to have to try and live with this debilitating pain. Depending on the joint involved, I can be completely incapacitated at the time of the flare up. There have been times where i couldn't take care of my children. My last flare lasted 5 days (a record for me). It drove me to the Medi-centre on Saturday and the E.R on Sunday because I couldn't bear the pain. It was my right knee and I couldn't walk at all. I was given an anti-inflammatory injection as well as a pain injection. I was sent home on crutches. The injections gave me relief for about 20 hours (it was heaven) and then the pain and swelling returned for an extra day. my sedrate and one other test always come back abnormal but any additional tests do not show anything. I'm not sure I can continue to live like this. I have had my wrist and hand swell to 4 x's it normal size with unbelievable pain. It has hit my shoulder, hips, knees, ankles and jaw.

I have a history of Lupus and Fibromyalgia in my family. But I don't seem to test positive for either of those conditions. I'm not really sure why I'm even writing to you. Desperation I guess. I'm at my ropes end.

Thanks for listening~~

M.......

I'm not sure who I am writing this to but...maybe the founder of this site???
I found your website really easy to read and helpful, and I know there are forums you can write on for support etc. but at the moment I feel, vulnerable and don't want everyone to see this I suppose. but even writing this now, if I get a response or not, is a help.
I'm 17 and female and I'm not sure how long I have had PR for, maybe around 3 years, but it was only in the last 10 months that it has got really unbearable. In November last year, before a diagnosis, I had a really painful attack and the doctors didn't know what it was and I was just on NSAIDS, as my blood tests were showing nothing. It lasted for about a month and was horrid. I would just burst into tears out of sheer pain and frustration and I didn't know what to do. then it went away completely and I almost forgot about it until I had another, much more severe, attack early this year. I kept going to the doctors and the tests kept coming back negative for anything obvious but the pain got worse so I was referred to a rheumatologist in Easter this year . He said that he thought that the most likely diagnosis was PR.
Argh I have probably bored you with all of that but I will carry on...need to tell someone.
Now, I'm on (excuse bad spelling!!) diclofenanc, co-dydramol and omeprazole to protect my stomach. ibroprofen stopped working and I had a bad allergic reaction to eccoxolac. my symptoms include the moving pain in my toe, finger, ankle, knee, hip, elbow joints, pain in the sole of my feet, extreme tiredness, i get extremely bad muscular aches after any exercise, and what is quite bad at the moment is the depression.
i suppose that the reason I'm even writing this is because I didn't know what else to do. I'm currently studying for my A-Levels and, excuse my language, I fucked up last years As exams, well the whole year. some days I was in so much pain I couldn't even go to school. and it utterly distracted me. at the moment I am dreading going back in September for another year and I really don't know how i am going to cope. I have days when its fine, and its just pain and i take pills and I deal with it but at the moment, they are talking about putting me on (?) suppressant drugs because there has been no remarkable breaks in the symptoms (i.e. this flare up has lasted too long) since seeing the rheumatologist. the drugs sound horrible, and even if I'm not put on them, I have to get through university entry and revision and study and exams without drugs, and just with the painkillers, which make me feel crap anyway. I really don't know how to cope. I try talking to my friends, and I mean they are great friends, but its when I'm alone like rite now that I cant pretend I'm ok any more and I realise that I don't think I can cope.
I know that you have had PR for so much longer than I have so me complaining after such a short time is almost seeming stupid to me, but you seemed approachable and I didn't know what else to do.
thank you so so much for taking the time to read this. please respond if you feel you can

H.....

I tried so hard to contact her through the email address she gave me and only hope I reached her. Unfortunately the emails weren't being delivered to the address she gave me... at first. I did post a message on the website for her to contact me again.. It is emails like this that shows there is a real need for help from the medical world for people with PR. If you "H" read this, let me know you are ok and now coping.

I was very glad to find this site. For years I thought I was losing my mind. I would have weird things hurt in my body. Not knowing what the problem was the Doctors said it must be a virus.

I now have been diagnosed with PR, it does seem to explain many pains I suffered over the years.

P.. S.... 

Hello,

I just came back from my doctor with the PR diagnosis. In the last 10 minutes on your site I have learned so much and am relieved to know that I am not the only one with this extremely painful "pinball" pain. While I have many areas of your website to view still and expect I will come back many, many times to the forums, I need to tell you that I burst into tears when I saw your pictures. When this first started in May I could not find any information on the web with any pictures showing what resembled my swelling, which I agree is no indication of the severe pain. I, too, took pictures but they didn't show the swelling in the way it looked to the naked eye. I am so very glad you posted yours I really have confidence in the diagnosis I was just given. While I would have preferred a "here take this and you will never deal with this pain again" diagnosis, I am so very relieved to find your site to help guide me through this new addition to my life.

Thanks and take care,

D......

Hi Paul

Thanks for the reply! I have an appointment on the 29th July with my consultant Rheumatologist, ............................. I will get the rash checked out then!

I have no objection to you using the picture, maybe you would want to wait until I seen the specialist to confirm that it is related! I'll leave that up to you.

On my last visit two months ago I had a badly inflamed right knee and had 10 mls of fliud drained off and a cortisine injection directly into the knee (the draining was painful) within two days all signs and pain disappeared! I'm not sure how often these injections can be used, have you any idea?

What goes on in the forum?

Speak to you soon

Regards S....

Good Morning,

I found your website yesterday, can I just say Thank You, finally I do not feel so own my own.

I have had PR for 2 years now and have only been diagnosed for 18 months, there are quite a few questions that I would like to ask as so far the Dr and Specialist have been no help at all – with my Dr saying for the 6 months of my illness that ‘no condition behaves like that, it must be in your head’! and my specialist, when I said how much pain I was in and I was getting to a point that I could not cope ‘Oh isn’t that a shame!’ (I no longer see him, for obvious reasons).

I have been taking Brofen Retard 800 mg for 18 months (though I now only take them when in extreme pain and that is just habit because they don’t help) and Avloclor (Chloroquine phosphate) every week. I think the Avloclor helped to begin with and it seemed to put the PR in remission for about 4 months but now it is back and getting worse again.

I have taken a variation of other pain killers and anti-inflam’s but to be honest nothing seems to work, even a morphine based tablet I was given on one of my worst attacks did not make any difference, I just found that everything was quite a lot funnier.

What I want to ask is have you heard of anyone else having attacks in their spine? I had one for the 1st time on Friday/Sat/Sun – it shocked me as so far this was my only joint that had not been affected. Also have you heard of anyone saying that straining yourself causes an attack i.e.: I lifted a weight and the day after had an attack in my Knee and Wrist?

My Husband is really concerned as I am very stubborn and I do not want this to take over my life – so I insist on pushing myself – however it is then him who has to dress me, bath me and generally run around after me when I have bad attacks. He is worried at the minute because I have said that I am going White Water Rafting with work and he does not want me to go as he thinks that being bashed about is a very bad idea – in the back of my mind I agree, but wanted to know if anyone else’s attacks are triggered like this?

Anyway, hope you are having a pain free day, I have a few threats this morning but as yet am okay so far today.

Looking forward to hearing from you soon,

A.....

Hi, My name is S.... I've been suffering from severe intermittent pain for over two years but only recently has there been anything to show for it, with my hand swelling twice and then my foot. This has lead my doctor to think about PR. I am waiting to see a rheumatologist now. Didn't get on with the last one. I am having to fight all the way. Nobody listens. They take blood, and if nothing shows up, that's it. Any advice on how to explain it would be helpful.

Really interesting to see your photos. The swelling on the back of the hand and the red 'penny' on the foot is exactly like mine was. I will take photos of mine next time so that I can show the specialist. Hadn't thought of that before.

Medication that I have been on for about 9 months that helps me sleep and helps my depression is 300mg Gabapentin.

Any idea how many people suffer from it ?

I also have Addisons (Adrenal gland) don't if there is any connection.

Will let you know when I get confirmation of diagnosis.

Regards

S.... C.........

Thank you! Thank you! Thank you!

I was diagnosed with PR a little over a year ago, but I have been suffering with it for years. I also have battles with depression but did not know that it was a symptom. After periods of extreme pain, though, my depression does seem to get worse. My GP says that pain uses up serotonin.

Thank you again for starting this site just to let some of know that we're not suffering alone. Keep up the good work.

J....I have had PR for the last 5 years. I have also had lower back surgery. Well, my sports medicine doctor gave me these Lidoderm patches which are just Novicane in patch form to place over my back to combat the muscle spasms and
they worked great. Well this morning I woke up in the usually God awful shoulder pain and thought I would try putting one of my patches over my shoulder and I'll be darned if it didn't take the edge off of the pain!!!! I just thought I would share this with you fine folks out there.

I am also taking 15 mg of Methotrexate every week and am also taking 10 mg of Arava daily. I had to wait between 30 to 45 minutes before I got some relief but I actually feel a little better.

Take Care,

m.......

Glad to see some info on PR. There is not a lot about this process anywhere, I found your site very interesting. I was beginning to think I was the only one who had it. I have suffered this for 7 years although the last 3 years it has been in remission until the last 6 months. I have been hospitalized 2 times with it in my hip joints. That was the most painful thing I have ever endured in my whole life. My doc says people never get PR in the hip joint. Have you ever heard of this??

M..... B.......

Hello, I just discovered your web site this morning. My husband is in bed with PR right now. Every thing I have read here this morning rings true with what he has gone through. I do have a question. My husband also has a problem with his ears and face becoming red and extremely hot. His discomfort level is intense. I didn't know a person could become so red without being sunburned. At times he has little raised splotches or patches under his eyes along with all that heat. He applies a cold cloth and ice and eventually it goes away. I was wondering if anyone else with PR has had this happen. There has been no medical explanation for this these symptoms. My e-mail address is.........................I will tell my husband about this site when he is up and about again.

Regards,

M...

Thanks
M....

Thank you so much,

I was diagnosed with PR this week but not given any information on it by my rheumatologist. I left feeling disheartened and confused, feeling like I had wasted his time.

I have been in increasing amounts of pain for 4 years now and with 4 children things have been tough at times.

Reading some of your web site has brought tears to my eyes just to know that there is someone out there who understands what it is like, as sometimes I feel that people think I moan about nothing and that I am just lazy. I feel so low.

So thank you I will keep logging on

H....

...........................
Great information and beautifully written!

Hallo Everyone !

My name is R...... , 59 years , live in Milan Italy and today , after several years , I found a Doc that diagnostic I suffer of “ Palindromic Rheumatism “ , nice !

Since several years I have those attacks , you know and are now coming in cyclic periods of 4 to 5 weeks.

This situation is now conditioning my life due to the very active work and sport activities.

I found you in the internet while I was informing myself about the new situation that probably will follow me for the rest of my life.

How do you fight it ? with medicaments ? Alternative medicine ? Food ?

Will be nice to hear from you.

Best regards

R......

just dropped by to say thanks for your site. I have been going crazy trying to get a doctor to listen to me and not silently label me as a hypochondriac.

I found your site very helpful. lots of down to earth information - factual, but also personal, which can only be experiencec by the person experiencing the disease.

thanks paul and good luck with your journey through life.

R.... R...

Hello,

I live in Northern California and found your site through a link on the yahoo groups I belong to. Someone in Scotland provided the link.

I would like to be a part of whatever continuing efforts you are planning. Although there are a lot of forms of RA I have found no one here in the San Francisco area who has PR like me. The fact that we can now communicate on an international level through email, provide support and encouragement not to mention explore possible therapies really appeals to me. I have had PR for nearly 6 years....and it's an up and down situation as you well know.

Thanks for your efforts on behalf of us all!

Sincerely,

M....... A....

Thank you so much for such a complete, clear view of this disease. I would recommend your website to someone trying to understand this disease. Your photos are great and make me realize I probably had some light flares before the pain got bad. I just passed them off as overworking a joint or muscle, but they looked just like your wrist and foot. It took the pain getting worse for me to get an actual PR diagnosis.

Again thanks,

G...