How quickly did it develop for you?

Bones, joints and muscles
1

Hi everyone

I hope you're all staying in good mental health and want to thank you in advance for your reply.

I have reactive arthritis and I'm trying to get a view on what I might expect.

A summary of my experience so far. I suddenly felt a sharp pain in my foot upon walking, but ignored it. The next day I had it more frequent but kept ignoring it and the day after I couldn't walk anymore.

From then to now we're 30 days ahead. Had several scans taken and the doctor concluded it's reactive arthritis. My only symptoms so far are still in my foot. It became more swollen at the bottom and two toes look like sausage digits, I am barely able to move them now. In the first days I could move them all completely fine. I just couldn't walk on the foot normally because of the pain.

I see a lot of posts here about pain in the elbow / knees / jaw / neck / back but up till now it seems to stay in my foot. How quickly did it spread to other body parts for you? Are we talking about in a few day or over the course of months?

All the best.

A

2

Hi A,

I got ReA in late June, and my experience with it is that it has spread to other parts over the course of weeks/months. In July, it was mostly in my hips, knees, sternum, and ankle. By August, most of the hip and ankle pain had dissipated but it started in my heels. Now, it is in my clavicle, my heels, and my knees mostly. 

One thing I would recommend is staying the course with the NSAIDs that your doc prescribes you. I think the reason it spread to my clavicle was because I was trying to taper myself off the NSAIDs, but they help a lot in keeping inflammation levels down and I suspect would prevent the spread to other body parts. 

-Thomas.

3

Thanks for your sharing your experience Thomas. I hope it will all stop soon for you.

Unfortunately my kidneys can't stand NSAIDs so that won't be a good option for me.

When it started in a certain body part, how long would you say that the ReA kept getting worse?

I had much pain tonight and I sweated in a very unusual way at night. I hope that this might have been the worst point for me and that the pain / swelling will slowly diminish from now on.

4

For me it got worse for weeks to months before getting better. It seems like everyone has their own experience of it though.

Have you asked your doctor about Celexa? It is an NSAID that is less harsh on the kidneys and GI than the other ones.

I also experienced severe night sweats and my immune system overall is much weaker than before. I have had 4 fevers since my stomach infection in June and it takes me a

5

long time to recover from each one.

6

Sorry to hear that. I hope it's all getting better now for you.

Thanks for the Celexa information.

It seems like my neck and lower back are hurting now, but that might be because I'm on crutches and quite much in bed to catch up on some sleep.

7

Hi,

My experience of ReA is different to yours. I'm an active mother of three boys 13, 10 and 7. I'm 41 and looking after the kids/paying for their needs on my own for the most part. I have continued to be an active mother throughout my experience of the disease, but thankfully my kids have stepped up to help with bringing shopping in and putting it away ect. There were times that I was unable to hold more than 800grams in my hand because my wrists couldn't hold the weight! Even taking the wet washing out of the washing machine was difficult.

I sprained my right ankle one week before onset of ReA back in June 2017. Nothing to do with the ReA except that my ankle has only recently returned to normal size (has been swollen and delicate for 4 months!).

I woke up one day in early June with ALL of the joints on the right side of my body swollen and sore. My fingers and toes, knee etc and ball of foot.

I thought it was a strange reaction to the sprain...

I thought that would be the worst of it.

Over the next few days I found the rest of my body followed and I was swollen in every joint in my body. Although my neck and shoulders were fine.

I went to the doctor after a week and he suggested that it was reactive arthritis. His suggestion was that I take ibuprofen regularly as described on the box and paracetamol when the pain was bad. The two can be taken simultaneously as long as you take them in the recommended doses. This recommendation from my doctor suited me. I prefer to try the simple option before engaging in more difficult drugs.

Somehow I managed to get through life during the following 4 months... I ended up having to take a lot of time off work... Almost four weeks if you put the days together. Some days I could get out of bed, send the boys to school and make myself go to work. Other days I would force myself out of bed, send the boys off to school and almost collapse in pain!

After about 3 months the effects of ReA started to recede. I visited Alice Springs just as the ReA seemed to be diminishing and was able to climb Telegraph Hill (a rocky outcrop in the centre of Australia with loads of uneven rocky steps). I was amazed! Just three weeks before that and I wouldn't have even thought about trying.

My ReA has not gone away. I still have pain in my wrist if I use it to push my body up. I still have pain in my feet. And I still can't sleep or spend time with my elbows or knees bent... I used to go to sleep with my hand near my face, I now have to sleep with my arm extended to at least a right angle. If I don't do that I feel pain in my elbow and wrist within minutes.

I recently went to a physiotherapist to ask him to help me strengthen my wasted muscles. Neither of us realised how little I have been using my muscles and so I did too much on the first try.

Please remember to take advantage of any time you can when you have reactive arthritis to do strengthening excerises. It hurts, but if you don't you will end up like me. Starting from the beginning. I used to play volleyball. I had really strong legs. After doing 20mins of strengthening excerises they still feel like hot steel three days later! Keep up some sort of strengthening excerises in legs, wrists and core so that you can walk away from this body attack with an ability to get back to normal!!!

Rxx

8

Hi Ruth

Thanks for sharing your experience. I'm really happy your symptoms started to recede!

Your experience indeed sounds very different. For me it's still mainly my toes and lower back that's affected. I recently started to limp again in an acceptable way because I took oral steroids. The movement in my toes is about 20% of the range of motion of my other foot though. I am training them every day and I hope no permanent damage was done there.

Thanks for the body strengthening tip. I am doing that in the way that it's possible for me currently.

I hope you're doing fine every day still. Sorry for the delayed reply.

A

9

My symptoms are in both feet only for about 8 months. I am HLAB27 positive and was initially diagnosed with anklyosing spondylitis but at my last visit my Rheumatologist thinks I may NOT have AS and instead  have reactive arthritis. I’ve been on Sulfasylazides (don’t know how to spell the drug name) I’ve been on this med for 4 months with the last 2 months being at the maximum dosage. I go to the Rheumatologist tomorrow and I have a lot of questions.

10

For me, ReA started in Sept and my right knee suddenly swelled up to a balloon. I thought I torn my knee ligaments due to work out, and for 2 month thats what doctors and I thoguth (I also developed a blood clot (dvt) in my calf, so i'm on warfarin for 3 month now). Then when the knee seem to get better, my heels started hurting. After 1 month of that, on the 3rd month a rheumi finally diagnosed me with ReA. The knee is getting better, but now my ankles are getting worse. I also can feel my tailbone hurting. I'm afraid its spreading.

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How did it go?

12

i really identify with the way you describe your pain. i too have a hard time sleeping and find that im in a lot of pain if some joint is angled wrong. in fact thats what started tendonitis in both my wrists. i woke up sleeping on it hard and totally bent one morning (because my back hurt so i was sleeping sitting up and fell over in my sleep...so frustrating!) and it hurt so badly. it took me 6 whole weeks just to feel normal again and within that time, my right wrist began hurting equally bad from overuse.

ive learned that reactive arthritis makes me susceptible to tendonitis and when i injure something, i MUST slow down. trying to maintain my lifestyle and push through just exacerbates it all and spirals multiple joints to overwork. but i dont have 3 children like you....i cant imagine how you maintained hope and a job through all of that. are you better now?