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Hi Everyone. I signed up to this after spending countless hours searching the web for Reactive Arthritis support/help/cures....you name it. I'm a 26 year old female, with a previously extremely healthy medical history. In 2015, I went solo travelling around SE Asia, 26 days into my trip I woke up one morning with a sore wrist. The day before I had been kayaking so figured I must have done something to it then. Unfortunately a day later, the pain was unbearable and my movement was restricted and it was also very swollen. The same feeling then occured in my right knee (it was in my left wrist) and I couldn't bed my leg at all. My knee swoll up so bad we all nicknamed it elephant leg, but I was in agony. I tried to push through but as the days went by, more joints were affected - my left elbow and shoulder, my right shoulder, my breastbone/sternum. Day 48 - I travelled back to UK, terrified and crippled with pain. There is no family history of arthritis and I was fighting fit prior to the trip - gym every morning before 7am etc. When I got home a GP was concerned it was rheumatoid however a rheumatologist dismissed that and guessed it was reactive due to the fact I'd had a 'mild' stomach bug a couple of weeks before my symptoms appeared when I was abroad. My Rheumatologist was confident that steroids and a steroid injection would help and that it would only be a temporary thing - 1 year and 4 months later I still have it. I only came off steroids in the last three months, when I came back home it then progressed into my SI joints (near your bum/lower back). I tried methotrexate but just hated taking it. Eventually, I was put onto these biologic medicines, which are in the injection form. For the last three months, I've been injecting myself once a week with Embrel. It definitely had been working, the pain has gone and aside from fatigue and a very weak wrist, I felt much better. I was able to start going to more advanced pilates classes again and dealing with it quite well. The injections have unfortunately given me quite a few side effects. I am normally quite upbeat, but I've felt very low and 'empty', my appetite has been up and down and my energy levels are definitely not the best they've been. However in the last week or so, I've had a numbing/dead leg sensation in my left leg...this can be a rare side effect and I'm just gutted. I started working again full time in April, took on a new job in marketing which I love but it's so demanding....I refuse to get ill again. I've not taken the injection in over two weeks and already feel the pain coming back. I've had no support from my so called 'support line' - the numbness of my leg was extremely concerning yet i've had no response from the nurse or my Rheumatologist. It makes me despair. I do get very angry, I always took care of myself and can't believe that I'm stuck with this. My diet was always very good but in the last year I've changed to plant based only to see if that makes a difference but it's hard. I guess I just wanted to vent - sometimes I'm not convinced it's reactive arthritis, it seems so peculiar that it would come on when I'm in a foreign country...but I don't know what it could be. If anyone has tried any other treatments, alternative therapies or just general thoughts I'd love to hear. Thank you!
0 likes, 2 replies
Littledog emma00334
Posted
Really sorry to hear about your struggles. Your story is really similar to mine, I started with pain in one knee and pretty soon I was on crutches and it was in virtually all my joints. I too went to rheumatology (Rheumatoid A in family) but they diagnosed Reactive Arthritis, which I was happy about as it wasn't more serious and the prognosis is better. Approaching two years later I still have nasty flares and never really managed to put my finger on what it was that kick started this (no bug or infection) so similarly, not entirely convinced it is what it is. Also on a plant based diet and used to look after myself, trained three times a week at karate, which I have had to give up. I think coming to terms that this isn't going away was really difficult for me, changing my lifestyle etc, so I really do empathise. Be kind to yourself, you deserve a little vent, reactive arthritis can be very debilitating but you're doing all the right things, your diet, gentle exercise. Hopefully the time between flares and thelength of flares will decrease and you can do more of what you can enjoy. All the best.
emma00334 Littledog
Posted
Thank you for your reply and kind words. I'm sorry that you also are suffering and almost a little 'in the dark' in terms of not truly knowing what it is. Can I ask if you're on any long term medication? Or when you have flare ups, is that when you would take something for the pain? Since I got this, I've been on medication constantly e.g. sterioids first, metheotrexate, now the Embrel injection. I've been reading some previous forums where a lot of sufferers seem to be pain and medicine free unless they have a flare up. I would settle for bad flare ups if it meant just taking medication during those worse episodes, my goal is just to be off any form of medication but I'm not sure if I will ever get to that stage.