Reactive Arthritis Help

Hi, I have been diagnosed with Reactive Arthritis after testing a false positive for Lyme disease. This was in August 2012!  

I have pain in my neck , groin, elbows, knees and ankles, wrists , fingers and my eyes are very dry and sore. I have swelling on my ankles if I walk for longer than 5 minutes. I also get a lot of pain in my neck around my glands. If I try todo anything excertive they react and I start to feel unwell. I take naproxen 3 tmes a day which has controlled most of the pain, but if I miss 1 tablet I get pains and swelling within 24 hours and it then takes a couple of days for it to calM down. My joints are also very hot to touch especially the ankle, which is where the doctor thinks Iwas bitten by an insect or tick. I also suffer severely with fatigue , I sleep almost every dayhalf way through the day and this is an uncontrollable tiredness that zaps you out completely.  I feel so tired of this constant pain and my doctor said I would be better in 6 months but that now looks unlikely.  I am worried I have something else wrong, I was so active before and now just sleep and sit. I am working part time and trying to increase it gradually so it does not flare it up but my 

Patience are wearing thin. The doctors don't seem to know much or have many answers I feel so frustrated, anyone out there feel the same or have some suggestions for other medicines,,,,,,,,,,,,,,,,, HELP x

 

I was diagnosed with reactive arthritis 30 years ago at age 19, after the initial infection that lasted about a month or so I seemed to be okay. Unfortunately by age 25 I started having some morning pain in my low back and I was given Naproxen. It has progressively become worse, to the point I've had to get pain medicine in addition to anti inflammatory medication. Celebrex seems to work the best for anti inflammatory. In my case it's really caught up to me and has made most days living hell. If you think it's chronic try to do all you can before it gets worse with age. Good luck.

Having come across this forum & post seems like reading a bunch of stories about my own life!  I never knew RA was so widespread and I know there are people out there who are completely disabled by these conditions so I do feel I have little right to complain.

I was first diagnosed with RA after having my first child 8 years ago.  Started with problems with a blue swollen little finger that was originally treated with physio as an un-noticed break. Then lots of unrelated things - sprained ankle pain, swollen knee and back pain was one day all linked together by a brilliant A&E Doc - who actually was willing to listen to all my various aches and pains as I was sitting in tears after a particularly massive back spasm causing me to collapse - she ticked an extra box on the blood test form for rheumatoid factors and bingo - non-specific reactive arthritis.  Treated for about 12 mths with sulphasalazine and all pain went away.  My consultant even said that I was never really even diagnosed with an arthritis. 

But now forward on 6 years and another child later, things are wildly much worse.  Started with a Bakers Cyst behind my knee and referred to physio again, who as there was no history of any injury or accident suggested I go back to the rheumatologist. He thinks it was probably triggered by a very bad random infection that hospitalised me in late 2011.  I spent around 5 mnths on prednilosone steroids to reduce such huge feet, ankle and knee swellings at times, barely able to walk even with stick,  and forget shoes!  Also back on high-dose sulphasalazine as it worked last time but after 8 months this has not had any effect so last week started on methotrexate.  Here's hoping.  I managed to stop taking the steroids finally in September but still have random bouts of sudden ankle swellings.  Consultant does say this is now a chronic condition and obviously much worse than before, but has no idea if and when it will go away.

It really really gets me down as even though I have good days where I can walk up stairs in the normal way (most usually it is either on all fours or both feet per step at a time), I can't remember a day without being in some kind of pain.  I am struggling so much with my weight, which can't help.  I have put on nearly 2 stone in a year - combination of being fed up and eating all the wrong things and being so much more immobile.  I have never been a great one for exercise, but I struggle even walking 10 mins to school most days so I drive everywhere and most evenings I am so achy after a day at work I just sit, but of course this is counter-productive.  I take arthrotec (diclofenac) and painkillers (usually solpadol) daily along with the sulphasalazine.

Tried the whole dietary thing - no tomatoes, citrus, nightshade - for about 6 months but have seen no noticeable difference to my condition so back eating the lovely fruits and veg that I love and make up most of my meals.  It is hard when I see no effective changes.  Really fed up with the whole thing and not really sure what to do next if this methotrexate doesn't work.  I would just love to be able to run around with my kids and not be grumpy and tired coz of the pain.

I do have the same problem......I am 28 and I was diagnosed with Reactive Arthritis 3 months ago. The pain and stressfulness are getting me down from day to day. I really want my youth back and really need help as well as advices. :(

Hi, I was diagnosed 6 years ago after working in the coal mines in QLD, little did I know but I had a Urine infection that chewed up all of my white blood cells. I come to learn about my urine infection  at a mine medical and was told when i returned home 1 week later to see my GP. As day by day went on I felt alot more pain in back and legs, 3 days after doctors appointment I was simply standing on my tippy toes trying to reach something and it felt like the main tendon to my toes had snapped. Next morning I could not walk on foot and doctor suspects I had torn the tendon/Ligament. I was on crutches for next 5 days whilst having all the scan s name to man getting myself around with crutches whilst my body was falling apart around me. Scan s all clear and 2 days later I was fully incapacitated. My mother ( A registed nurse) and my finance would drag me on and off my bed to take me to toilet etc. My Private health had not kicked in yet so I had to wait on public system for 5 weeks. In that time I was taken to hospital by ambulance twice and only could be moved by aid of green whistle pain relief  that ambulance has in the vechiles. I also was receiving blood test and cultures where at one test I collapsed and body went into a 2 min fit. Anyway I finally got to see my bone specialist (who was awesome) and he subscribed high dosage of Predniolone which got me back up walking again on crutches after 7 days. He told me that it was incureable which I still truly believe where other GP"s have stated that it would go away like apparently it did for "Silver Chairs " Lead singer Daniel Johns.

I Probably don't help myself to much these days as my diet is pretty good but I do love a cold beer. I only take predniolone when I cannot stand the pain. I have been told to try a new tablet made up from the New Zealand green muscle, which I will start taking soon. I also dont get alot of rest due to working in excess of 84 hour weeks in the construction mining industry. I also advise to anyone to stay clear of people with colds and flu s and any other viral infections as these really inflict a large amount of joint pain.

My Best natural way of controlling the pain is regular deep tissue massage and chiropractic visits.

Best Of Luck To All  

Hi.  I have reactive arthritis about 2 years ago.  Initially i have tried several meds (including methotrexate) but they did not work well.  The disease was only under control after my doctor administered ENBREL on me.  I highly recommend anyone with RA to try ENBREL for a short period of time, say 2 months (as long term use will increase the chance of having cancer).  I am now on salazopyrine and arcoxia only and my condition has stabilized.

Hello, thank you for sharing. I hope you are feeling better. I was diagnosed in March of this year and am going through a flare again. I have a three year old and a one year old. How are you doing now?????

Hello, thank you for your post. I have reactive arthritis as well. How are you feeling now?

Thank you I thoughtI was the only one who keeps getton relapses..peopledo think its put on but somedays I cant get off the sofa and I work a 40 hr week...

I have found turmeric effective. It really helped me. I got steadily better over about a month or so. Take it with black pepper and coconut oil. Helps with absorption.

I just read your comment and it was awesome.I recently was was diagnosed with reactive arthritis and I'm an executive chef,so my work requires a lot of leg movement and hand movement, so your words have been very inspiring to me thank you

I just read your remedy do you rub this on you or do you add it to food

I had diclofenac for about few months and had bleeding in my stool despite carefully monitored by my specialist (and took 2 omeprazole before taking diclofenac). They had to stop me and introduced me to Hydroxycloroquine. Did not work either. Still suppering on off Reactive arthritis on my left ankle and foot.

How do you take them??

Heyy.. are you okay now? I am asking this because i am expierencing same symptoms