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Diagnosed with reactive arthritis when 18

Posted , 8 users are following.

CarlyDale1944
CarlyDale1944

In my first year of university (2006) i woke up one morning to find that i could hardly move. I could barley lift my head from the pillow. I eventually managed to reach my phone which was at the side of my bed and called my flat mate. With him holding the phone to my face I called the University doctors but as it was the weekend it was shut. I called the NHS helpline. They told me to take Nurofen. I stressed that I could hardly move but they seemed to think I was being a hypochondriac. I asked if they would be able to send a doctor out to me and they refused. I then called my parents who live about an hour away from my University in Nottingham. They came straight away and slowly managed to get me into the car.

I got home and was in terrible pain all over; I also had a couple of little red spots on my fingers. The pain was so bad that I couldn’t even sit up in bed or get to the bathroom on my own. My mum spent ages on the phone to the NHS helpline who advised her this time to call an ambulance. She told mum it looked like meningitis. The ambulance arrived. The paramedic took my temperature and looked at the rash. He said it was a virus and would be gone in a couple of days then left. I was seen by my family doctor on Monday after the symptoms were no better. He examined me and took blood tests. The results showed that I had massive inflammation. The pain stared to settle in three areas. My left hand/wrist, my left foot/ankle and my right shoulder. The doctor said the blood tests showed what looked like arthritis and he wanted to book me into the hospital. I was on a very high dose of steroids which were helping slightly but were never going to be a long term solution. At this point it had been about 6 weeks since the pain started. The Hospital appointment came and they could not see me for another month. I decided to go private.

The doctor saw me a week later. He examined me and found that my heart was beating at around 140 beats per min. he was really concerned by this and wanted me in hospital the next day. At this point I still could not walk or lift anything heavy.

The next day I was admitted into hospital, this was also the day of my 19th birthday. They sent me for an emergency heart echo which showed nothing abnormal, my heart started to slow down a little and they put it down to being under stress and in pain.

I was poked and prodded and tested for every possible thing. After a week I was diagnosed with reactive arthritis and things at last started to become clear. The little symptoms like flaky skin on my hands and feet made sense and the sore eyes.

I saw a physio therapist who taught me exercises and got me taking my first steps in 8 weeks. I felt like Bamby. It was still very painful and the doctors decided to give me steroid injections into my joints.

They said I could go home as soon as I could walk on my own so after 3 days and allot of hard work and tears I was discharged. Being in hospital was having a terrible effect on my mental health. I was becoming increasingly low and my family had begun to worry so being discharged was a great relief.

I planed to be back at university after the 3 week Easter brake. I missed university so much and couldn’t wait to be back. I did everything in my power to get better quicker. I was being weaned off the steroids and I was walking as much as I could every day.

I made it back for the fist day of summer term. Looking back a was still very poorly but very determined. I was walking very slowly and yes it was very painful but as far as I was concerned I was out of a wheel chair and doing it alone. My shoulder was almost totally recovered. It clicked and ached slightly but nothing to complain about. My wrist was still a big problem; I needed help with things like opening jars or tins.

So now its 2008 and it will be two years in February since I was diagnosed. If you met me now you would know I had anything wrong with me but I still have bad days. I ride my bike and my wrist will hurt the next day. I wear heals and I might spend the next day limping. I have managed to get to the point where I can get on my tip toes and my grip in my left hand is ok now. I cant bend my left wrist back very far and I still have some swelling across my left knuckles. The joints which were effected are very clicky and girindy.

I wondered if any one has had a similar experience and how there recovery has ended up. I have come to the grim conclusion that I may always be in some pain. It doesn’t really affect my life that much. I am going travelling around south America next year and I lead quite an active life.

Does anyone have any advice or any stories? I wondered if anyone else took longer than this to heal after an extreme case?

P.S sorry for the length but I wanted to express what a struggle I’ve had so others can maybe take something from it if all seems hopeless. I was at an all time low in my life and I am now at a stage where I can look back and feel I have come out the other side with almost all my health back. Thanks for any responses.

1 like, 6 replies

6 Replies

  • Guest
    Guest

    Posted

    Hello CarlyDate1944,

    I'm sorry to hear that you've had such an awful experience, it sounds excruciating. But I can completely relate to you, I’m 27 and have never had any problems with my joints before but following couple of throat infections during the course of 2007 I have developed some stiffness in all my joints, which to be honest didn't concern me that much. I have always put it down to spending too much time in front of the computer.

    About three months ago however, I've developed some other symptoms such as flare-ups in my wrists and knuckles and stiffness in my lower back along with symptoms of Reiter’s Syndrome so my GP has suspected REA straight away and this was confirmed after couple of tests. I was given a three week course of antibiotics and a prescription for Ibuprofen and was truly hoping that once the antibiotics kick in all will clear up and I’ll be back to my normal self. The antibiotics have cleared up the RS symptoms only for a few days after which I was beginning to suffer with my joints and the RS symptoms as well. This was the second attack that I had and the Ibuprofen had still worked but when I had my third attack that I have at the moment, I can take as many pills as I like but still cannot relieve the discomfort and pain.

    All my joints seem to be affected now beginning with finger knuckles to my ankles and toes, my lower back hurts but my knees and especially my hips are the worst. The pain feels like an intensive stabbing tooth-ache in each joint. My joints however do not even appear swollen and I don’t have a rush either but I have never experienced a pain like this before and hope once it gets better I never will again. It paralyses me, the painkillers upset my stomach and I’m quite down as I can’t keep up with Uni assignments. I have found herbal mobility gels (Verde) helpful to some extent as they numb the joint area or hot baths also, but the relief is usually short lived. Just like you I have also experienced heart palpitations and chest pains and one of my knuckles already seems to be permanently affected as it keeps locking and is painful to touch.

    CarlyDate, I truly hope that neither you nor I will have to go through this ever again.

    All the best.

    J.B.

  • Luchador
    Luchador

    Posted

    Hi, I would like to hear how you are doing. Please let me know. Thanks,
  • HopedforReA
    HopedforReA

    Posted

    Can anyone share an update on how their Reactive Arthritis is doing?

    I developed Reactive Arthritis over a year ago and am still unable to walk.

    THANK YOU to anyone willing to share!!!

  • thom138
    thom138 CarlyDale1944

    Posted

    I've had a couple of fare ups in the last 3 years, I'm 29 now. It started with umbarable pain in my wrist, that had been coming on slowly for a couple of weeks and then all of a sudden I was completely unable to even hold any of my tools at work and the pain was horrible. I went straight to A&E where they thought I could of possibly fractured my wrist but without any recollection of injuring it they were sure. I was given a wrist support and come codeine. After visiting the doctor because I was still in a lot of pain they concluded that it was tendinitis. I was given tramadol and had a week or so off work. It took a long time to sort itself out and going pack to work was really hard, at the time I was making bronze sculptures, which was very hands on and involved heavy lifting. I taught myself to use my other hand. Eventually I got the sack because of it. After having some further tests, x-rays and MRI scans they informed it there had been some bone damage in my wrist . It was a couple of months after this, shortly after starting a new job that i got up to go in to work and was pretty much completely unable to walk, my right knee wouldn't bend at all and putting any weight on it really hurt. After visiting the doctors the next day (a ten minute walk that took about 30minutes with a make shift crutch and my girlfriend helping my walk) the term relative arthritis started popping up, I was given some pretty brutal pain killers, had a blood test and a referral was she to someone at my local hospital. The following week I got a worrying call from the doctors as my blood test had come back with some worryingly high infection, which scared the crap out of me. So I was put onto weekly blood tests, liquid morphine for the pain and told to completely rest my leg. I think I had to wait for 3 months until I saw someone at the hospital. In this time is had gone down a bit and me being an idiot went straight back to work and my leg swelled up twice the normal size and I was getting stabbing pains in the back of my knee and calve muscle. I went back to A&E as everytime I tried to move it felt like something was going to explode in my leg. Which was very embracacing working in retail and being on the shop floor while this happened. At A&E they told me it was either a blood clot of something call a Baker's cyst. After having to horrible blood thinning injections while blood test results came back and having an ultrasound of my leg, I was told it was just the cyst and told more rest and more painkillers and if I didn't it could possibly rupture. When I finally saw a specialist at the hospital he told me more about reactive arthritis and some links were made with some eye problems I had as a child. When I was about. 12 years old I spent sometime in great ormonds street hospital after my right eye had become swollen and looked like it was about to pop out of my head. At first they thought I had a brain tumor but then after seeing lots of different doctors I was told I had an orbital pseudo tumor (now more normally refered to as orbital inflammation) After a course of steriod treatment this went back to normal but I occasionally have a flare up of iritis or the obitial inflammation now and again. So this was commonly linked with my joint problem. Apparently the problems if had with my eyes were basically arthritis of the eye. I think I was off of work for about 4 months in the end and it took a long time to sort itself out. Once everything had cleared up I was told about Sulpasalazine and started taking them although they did make me a bit sick to start off with. Everything has been absolutely fine since. Until now (hence why I'm looking back on these sites)

    I've been a bit of an idiot and completely stopped taking my sulphsalazine (on Boxing Day) I just got fed up with having to take 6 very hard to swallow pills everyday. I was always forgetting to take them and was told take of you miss them now and again they just don't work at all, so I didn't see the point and figured they probably didn't really help at all. I had been fine up until a few days ago, I'd noticed that I'd started getting mouth ulcers again (which is linked) and a few other linked problems. But I woke up a few days ago with a bad shoulder and elbow and just thought I'd slept on it funny or something but this morning it's gotten worse, with shooting pains between the elbow and should and extremely painful move. It's been a year and a half since the problems with my leg started. So I'm thankful I've had that time pain free but now I'm starting to feel like a bit of a dumbass for stopping my meds, I know that it's gonna be a long and painful next couple of months. I will go to the doctors tomorrow and stop being stubborn and I have a check up at the hospital booked for June. So I'll keep you all updated. Has anyone suffered from shoulder/elbow pain with this yet? 

    • Janetanne
      Janetanne thom138

      Posted

      I suppose I am lucky as I haven't had another flare up but mine was over six years ago and took six months for diagnosis. I was in agony, unable to walk, get up the stairs or do much at all. Mine started after a virus and in my ankle which became enormous. I was sent for an X-ray to see if I had broken/damaged it, but nothing. It worked its way to my knees which ballooned up being full of fluid, then it got to my hips. I had similar drug treatments to everyone else but the sulphalazine made me feel too ill and I ended up on a malaria drug which eventually worked combined with oral and injected steroids. I took and still do take prescription painkillers but nothing else. It took me four years to come off the medications. I have permanent damage to my hips which now need to be replaced and to my knees. I have other minor issues but compared to six years ago life is good. I can walk up to a mile, sometimes using a stick, I have pain but it iscontrolled  with prescription painkillers and it is nothing like the initial flare up. I dread that happening again. I have a very helpful and understanding husband and get by pretty well most days. Life is pretty good and I hope everyone else on here gets better too. 95% of people get rid of this disease after 6 months so we are unlucky but even most of us get there in the end. It is just a case of trying to limit the damage to the joints sadly some of mine are knackered!
  • jane44467
    jane44467 CarlyDale1944

    Posted

    Hi CarlyDale1944

    This seems like an old discussion so I hope by now that you have fully recovered from this very debilitating illness which you  have had particularly badly.

    My story is here, although I feel somewhat bad in the telling of it as I did not suffer with ReA as badly as you, however I'd like to relate what happened and how I treated it in case there is someone else out there who can gain hope and relief from it.

    I came home from a holiday in The Gambia in April this year - felt fine until two days later when I went down with really bad diarrhoea which lasted over two weeks. I was very poorly with it and after three days went to my GP because I was concerned that I had picked up something nasty in The Gambia.  He tested for the most common five bugs but negative.  After this time I got a bad cold and  a very bad dose of conjunctivitis in one eye - then mouth ulcers.  I was given a short course of antibiotics for my eye.  I wasn't sure what was going on as I am normally fit and well and have never had health problems.  The next thing I knew I had fast growing and searing incredible pain in one knee - it came up in hours and my knee swelled up hugely. Then my other knee swelled up - I couldn't bend my knees, I don't know how I made it upstairs and I was screaming in pain.  What followed was weeks of this, I was barely able to get out of bed, unable to get into the shower unaided etc.  My right wrist swelled up, and latterly it got into my ribs; I  found sleep elusive and woke at 5am most days; it was less painful to be upright than lying down.  My GP diagnosed ReA- the bug had gone through my gut wall and into my joints and my body reacted by going into overdrive and producing massive inflammation.  I asked to be referred to a Consultant Rheumatologist who put me on Prednisalone - 20mg steroid. I lost all my energy and spent most of every day sleeping and the pain continued.  I have never known pain like it - and I have given birth to two children with no pain control! About this time I began researching on the internet for information.  I found very little available as it seems quite a rare condition, but I began to align it to Rheumatoid Arthritis which is far worse as it is not curable, but it is an auto-immune disease. In addition to the steroid I started taking large doses of Turmeric in tablet form (Curcumin) Healthspan sell a concentrated form of it, also Omega 3 fish oils, starflower oil, probiotics (Probio7), Solgar's Boswellia which contains frankincence, and Zyflamend - all these are anti inflammatory herbal medicines.  I also took a herbal diuretic as I was on steroids.  This coupled with regular acupuncture and  a very healthy diet of fruit, salads, vegetable and meat, fish and chicken etc. On a subsequent visit to my Rheumatologist after 11 weeks of this he suggested I went on Methatrexate.  I was amazed as I thought I was recovering so well considering he had told me it could last up to a year.  I politely refused and decided I would listen to my gut instinct that said my body was doing a very good job of healing without this nasty drug.  I asked instead for hydrotherapy which helped me no end.   Now, I cannot say whether anyone reading this who is suffering with ReA should take all or any of this: clearly you should ask your GP and do your own research. I can say that just over three months later, I have the residue of the inflammation in my wrist, but for the most part I am almost back to normal.  I have some sort of 'adrenaline rush' every day, several times a day which isn't very pleasant and I think its the steroids - I am now down to 2mg a day and decreasing weekly.  I hope to be off them at the end of next week. Clearly I am unable to say why I have recovered so quickly compared to so many others who are still suffering years later - my heart goes out to you - its such a painful, debilitating illness. It may have been the antibiotics that stopped the spread of it, or the steroids, or the herbals - or the acupuncture or everything who knows?  

    I wish you all a speedy recovery.[color=#333333]=0px◢[/color]  

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