Anyone else have Reiter's Syndrome? | Arthritis Information

 

I'm suffering from Reiter's Syndrom, also known as Reactive Arthritis. The symptoms include RA. I've been trying to find other people with the condition, just to talk... Is there anyone else out there? hi mojo sorry i have not heard of this .. i hope someone out there answers
good luck..

Boney
I have wondered in the past whether I have Reiter's and not RA, but, at my stage in the game, I don't know if it matters, because it's clearly chronic, from a joint standpoint.  The reason I would suspect is because I got horrible food poisoning right after I gave birth, and was sick a lot after that, although the true joint inflammation didn't start until several months later.  Also, two different times that I have had joint problems, I have also had bouts of interstitial cystitis, along with costochondritis.  But there's really no way to know whether it's all connected.  I've never had iritis or anything.

Boney, thanks for the kind words.

KatieG, I have had cystitis on and off for years, but only had fairly minor eye problems like blurred vision. There is a check for a particular gene they can do, which if you have means you are at higher risk, but it's not conclusive. As you say, it's all a bit academic in the end, since there is no treatment anyway :(

I need to start some new physio now, because it's been over six months and my muscles are starting to atrophy.

I'm having trouble finding suitable medication for the pain too, because if I take anything stronger than ibuprofen and paracetamol I get really nasty side effects :(

I'm suffering from depression too, which makes it hard to keep up with the physio. It's just so frustrating. I was living in Japan when it all kicked off - my dream for many years. Now I can't work, let alone live there. Stuck in depressing old England, where it takes three weeks to get an appointment with my doctor...
I'm not familiar with Reiter's but it's obvious you're really suffering.  I'm sorry I can't offer any help except to listen when you need to vent.  We're pretty good at that around here, so please feel free to tell us everything you're feeling.  I'll bet there will be someone here who can give you more information as well.  It's usual either from eating something or contracted as part of a venereal disease--either way it's from an infection. Properly treated it should hopefully go away in a matter of months. No fun, but if you deal with it straight on you should back up despite this setback. I'm not up on treatment for it but it's probably an antibiotic and something for your symptoms.   _popupControl();^ I was primarily diagnosed with a reactive arthritis, although not proper Reiter's, because I didn't have the gene, but I had swollen knees, back and hips on and off for 2 years. If it was ReA or not, it doesn't matter because now it has turned into suspected RA and thats a whole new ball game. If your anti-inflams aren't working, perhaps you can ask for other meds, like sulfasalazine (an anti-inflam they use in RA and crohn's), or even methotrexate, which I have heard they use for treatment as well. Have you tried steroids? ReA can take from 3 months to never to go away. I've heard of people who get it and it never goes away. The worst thing that you can do is not exercise. I had to walk with a cane for a few months and it put my back and hips out, which was impossible to correct with physio until the swelling went down. Please make an effort to go to physio, it will not only help your depression, but it will gradually improve your health as well. As for working and living in Japan, that was my dream too. Then I got a rough dx of RA in February and now they won't let me go. So I have to think of cool new things to do with my life. I have been sick and off work/study for nearly two years now, and I know how frustrating it can be. Keep your chin up.

*just wanted to add* If you have the money, there are other treatments that I have heard that are useful, like time in an oxygen tent, and warm mud baths are apparently helpful.


_popupControl(); paperdoll2008-04-24 01:45:05Thanks for the kind words everyone.

I have been suffering from these problems since age 14, but it only got really bad when I had the attack last year. Now it's over six months later and I don't feel much better. Even just typing this hurts :( I think now maybe I will never improve that much, so I will simply have to try and live with it.

I live in the UK, so am reliant on the NHS for treatment. They don't seem very interested though. I suppose since there is no treatment I can sort of see why.

It's just so frustrating. When I started on anti-depressants suddenly I could do things again. I mean, hobby stuff and the the like. I had made plans for things years ago, but could never carry them out somehow. Then I suddenly could, and I did some stuff I am a little bit proud of, and I though maybe when I get better things will be more positive.

Now I am becomming immune to the anti-depressants, but every alternative med I try either doesn't work any better or gives me terrible side effects. My body does not seem to like medication.

I just don't know what to do any more. I hate England, it's a miserable place. I can't get out now, can't do a proper job. I'm worried they will demand I get a job, but I think being forced to do some crappy part time thing will just push me further into depression. I want to study Japanese, but can't read/write/concentrate long enough to get anywhere...

Thanks for the suggestions paperdoll, I am going to talk to my doctor about the medication you suggested and see if there is any other treatment I can get. Thank you everyone.
PS. I wonder if it is just Reiter's, or if it's something more than that.
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