Reactive or Viral Arthritis
Reactive arthritis. When my son was 14 months old I got reactive or viral arthritis. I’d never heard of it before. So I thought by writing a blog post about it, I might help someone who ends up in a similar situation.
Reactive Arthritis Symptoms
It started one day when I was out Christmas shopping in early December. I remember mentioning to my husband that my knees were sore. My son had been poorly so I had been up with him a lot in the night and we’d done a lot of walking so I just chalked it up to being tired and a bit achy.
That was on the Monday. Over the next week I felt just generally achy all over and I deteriorated from there. The following Monday morning my hands were sore and slightly swollen, so much so I couldn’t get any of my rings on. On the Tuesday I woke up and I hurt so much I remember thinking I wasn’t sure how I was going to get out of bed. I managed to hobble to the bathroom but in the shower my hands were so weak I couldn’t squeeze the shampoo bottle properly. The symptoms seemed to improve as I got going and because my son had been poorly a lot since I had returned to work I was determined that I wasn’t going to have any more days off.
Wednesday morning I woke and I was in tears with the pain. I remember thinking this is what I imagine people with arthritis feel like – but people don’t just get arthritis overnight – do they?
I managed to get a doctor’s appointment for the day after (at the time I only worked Monday to Wednesday). On Thursday the doctor diagnosed me with viral arthritis and prescribed me with anti-inflammatories.
But the arthritis only seemed to become more aggressive, until it affected all of the major joints in my body – my hands, wrists, elbows, shoulders, knees, feet, ankles and hips. My feet were so swollen I could no longer wear shoes, only Ugg boots and only my older Ugg boots, I had a newer pair and they didn’t fit, my feet and ankles were just so swollen. Even some of my socks didn’t fit.
Not only were my joints swollen and painful, they were also weak and would just suddenly give. My son was 14 months at the time and I struggled to cope. I couldn’t hold his legs to change his nappy properly and had to change him on our bed as I couldn’t get down on the floor at all. I remember one day I was holding him and he threw his head back, as babies have a tendency of doing. I felt my wrists just go and I knew that I was going to drop my him. I did the only thing I could think of and fell with him, cushioning him with my body.
Treatment
Things got particularly bad in the run up to Christmas. I went back to the doctors and their response was to tell me to take it easy (easy with a baby and Christmas looming!) – avoid climbing the stairs and prescribed me really strong painkillers. Trouble is strong painkillers and I don’t really agree and they just made me throw up. I was on a cocktail of high dose codeine and naproxen at the this time.
My saving grace was I had two weeks off over Christmas, as did my husband. He took over everything, washing, housework, all nappy changes. You name it he did it. He was pretty amazing actually. But by this stage I was quite frankly a mess. My joints would get particularly bad at night and lock into place so I would wake up in excruciating pain and unable to move and I would have kind of seized in place. So seized I found it hard to move and unlock my joints, I really cannot describe the pain to you. I will openly admit my husband would wake up to me crying at times at night, I was in so much discomfort. But those two weeks gave me a chance to rest and my joints some time to recover. Because arthritis does not only bring with it joint pain, but extreme fatigue.
Again, I went back to the doctor. At this point a referral to a rheumatologist was agreed. In the interim between my referral and appointment date my joints did thankfully continue to improve. So that I was at least able to wear normal Uggs by my appointment, although still not my rings or shoes. The arthritis had left most of my joints except my hands and feet. Although I had developed Raynaud’s Syndrome (my hands started going blue and losing circulation in the cold).
Rheumatoid Appointment
At the hospital I was given tests for all sorts from rheumatoid arthritis to lupus. My hands were also x-rayed to monitor for deterioration. It was agreed I would go onto arthritis medication (Hydroxychloroquine if you are interested in the detail). Viral or Reactive arthritis usually only last 6 weeks, by this point I was at 4 months.
It also worth stating for anyone who might be going through similar. That the NHS website states the cause of Reactive arthritis as an STI or bowel infection. I had neither, most certainly not the former and I didn’t have an upset stomach at all. The only thing the rheumatologist and I can perhaps link it to is that my son was unwell when I developed it, with hand, foot and mouth and I of course was caring for him at the time.
The arthritis medication finally cleared up my arthritis symptoms. I was kept on it for several months until in the September – 9, nearly 10 months after original diagnosis – I discovered I was pregnant. Funny thing about arthritis did you know that pregnancy always puts it into remission? I came off my medication but was warned by my rheumatologist that often arthritis comes back with a vengeance after pregnancy. Often within 6 weeks of the baby being born and I might have to go on strong steroids to get it under control quickly. She made an appointment with me for 6 weeks after my due date just in case. But thankfully I was fine.
I last saw my rheumatologist in the March after my daughter was born, I given an open appointment just in case any symptoms came back post breastfeeding. But thankfully I was fine and have since been discharged.
A friend asked me after I had gone through it and asked me what the pain was like in comparison to childbirth. I would say childbirth is worse, but the continue intense pain over days and weeks was harder to cope with. The arthritis was up there with one of the most intense pains I have ever experienced – and I have had a kidney stone and infection at the same time in the past which was pretty hideous too.
I haven’t written this post to illicit sympathy, but more for others should they go through the same thing. At the time I had no idea what was happening to my body and had never heard of reactive arthritis. On the bad days I would Google to see if I could find something other people had written about it, but only came across medical websites and jargon. Hopefully my post will help people who do not know what is going on with their bodies and reassure them that there is a light at the end of tunnel. The symptoms of it are very similar to rheumatoid arthritis apparently and my heart goes out to people they suffer with that. It really does. If you have been diagnosed with reactive arthritis the usual length of time it lasts is 6 weeks, although like me it can be longer most patients have recovered within a year of diagnosis. For me it was painful and debilitating, but now I am back to normal and you would never know it happened. If you are going through the same don’t be afraid to push for a rheumatology referral, the rheumatologist I have been under was excellent and told me no matter how long it lasted it was her job to protect my joints.
Anyway, thanks for reading and if you’re going through similar I know how lonely it can be, please feel free to drop me a line.
Thank you for writing this. I don’t have Reactive Arthritis, but I have Rheumatoid. It’s not quite as bad as yours was yet, but all I have is a steroid injection every so often, which helps, but when it wears off its pretty unbareable. The only medication they will give me (other than the steroid injections, which I can’t have too often as it can cause long term problems) is Methotrexate. I can’t have that whilst I’m still breastfeeding though. I asked if there was other medication I could take that that was breastfeeding compatible, she said there probably was but they will only give me Methotrexate. Given how toxic and nasty that drug is, I’m unsure I want to take it anyway. I’m very sensitive to medications, nearly everything makes me sick! So I’m stuck in this cycle of having a steroid injection, being ok for a couple of months, then being crippled until I can see them again.
I refuse to give up bfing yet though if there’s a way around it. She only nurses morning at bedtime, but I won’t force her to stop if I don’t need to! Sorry, this has ended up a rant and a pity party! I wish my rheum was as nice as yours!
Thank you so much for stopping by and sharing Cheryl. I really feel for you if rheumatoid is anything like what I went through. I was warned that if the flare up was bad post pregnancy that I might have to review my breastfeeding options. If the flare has been bad I think I would have stopped because I just couldn’t have coped. My rheum has been fantastic I think it helps she has small children too, I’m sorry yours hasn’t been great 🙁 in terms of your breastfeeding journey only you can make the decision as to what is right for you. If you can manage and want to continue then you should do that. It hasn’t been a rant or a pity party at all – it’s really hard xxx
I don’t suffer or know anyone who has reactive arthritis but this post will certainly help someone who does. Sending positive vibes and hoping the flare ups stay at bay xx
Thank you very much Kellie x
I am so pleased for you that the arthritis has cleared up. I suffer from rheumatoid as a consequence of having had chemotherapy. I had no idea that it could be a consequence of that. I had a bit of a struggle like you to actually get diagnosed. Mine is manageable most days now as I take daily meds and have a steroid injection if it flares up. I’m lucky though as had already had and breast fed my children before all this happened. Thanks for sharing #PicknMix
Oh I didn’t know that either. What a hard thing to have gone through chemo and then get rheumatoid. I am very glad it is under control though and I hope that it continues to be x
Oh my gosh poor you! That sounds like a terrible, terrible illness to have experienced. My hubby’s mum has arthritis and she suffers badly, only being able to wear ugg boots and very soft espadrilles in the summer. It’s heartbreaking to hear how painful you found it, as it makes me think what she must go through every day. Thank you for sharing. #momsterlink
Oh your poor mother-in-law yes trying to find shoes was really tricky but more than that the pain is pretty awful. I hope your mother-in-law sees some improvement soon and thanks for reading x
Oh goodness this sounds awful you poor thing!My Dad had arthritis and osteoporosis and it’s not nice x #picknmix
Not it’s not nice at all, I hope your Dad has it under control x
I didn’t know this could even happen ! I actually found the thought of this quite scary, as if your body was suddenly out of control for no apparent reason, so sorry it happened to you.
I am glad you wrote about it though, especially how you struggled/managed to cope as a parent, and how the medical professionals reacted to you.
I find it very worrying when they don’t take your condition seriously enough and you are left feeling alone and anxious.
It is good to know that it does eventually pass, even if, in your case, it took longer than normal and glad to know you have a good specialist in your corner.
Thank you for writing this, I am sure it will help people.
I wonder if there are any arthritis websites or forums you could share your story on so that it might help more people struggling to understand what is happening to them, and to get a diagnosis ?
Stay well 🙂
Sarah x
Thank you Sarah. I didn’t know this could happen either. I honestly wondered what was happening to my body. It is essentially arthritis in viral form for a few weeks/months but it is pretty hideous. I’m not sure about forums – I need to look into that thank you so much for the suggestion x
I worked for a wonderful rheumatoid arthritis doctor when I was younger. It’s amazing all the variations of what can go on in our bodies. I felt so bad for the ones who’s lives were being robbed by such pain. Thank you for linking up with me for #momsterslink and I am so happy to hear that you got the help you needed and knew to speak up.
Thanks Trista, yes the people that suffer long term with arthritis it must be really hard 🙁
Well done you for raising awareness. I didn’t know you could get it reactively. An old neighbour of mine had rheumatoid arthritis and was in and out of hospital with it, it was so bad. I can only imagine how hard it must have been for you, I had severe spd in my last pregnancy and know how horrible the constant pain can be. Thanks for linking up to #picknmix
Thank you :)I had a little SPD in my lady pregnancy and it wasn’t nice at all. But only mild. Your poor neighbour too. I really feel for people with rheumatoid
Just found your post it’s nice to here that someone has recovered from this illness as most stories on the Internet seem to be very negative. I’m currently suffering with reactive arthritis after food poisoning, I have had it about 6 weeks and has been pretty much in every joint as yours was apart from I haven’t had swelling. I’m at the stage now where I am having the odd good day but usually followed by several bad days, the extreme tiredness is what I struggle with, at what stage did yours tiredness get better? I’m assuming that whilst the joints are hurting it’s active which causes the tiredness im currently taking naproxen. Just hoping it will eventually go away
Thanks for posting this, it is a comfort to know that it does gets better. I am currently only one week in and it has been life altering so far. x
It is excruciating and yes life changing, but it does get better. Don’t be afraid to go back to your GP and ask for painkillers to help. Take it easy and you will feel better in a few weeks. No consolation now I know x
Hello Laura, thank you for posting this. I would like to say it’s nice knowing someone else has been through this but it really isn’t, I guess it’s comforting knowing that I’m not the only one!
I’m 19 years old and I’ve been suffering from this since July 2015 and it doesn’t seem like it’s going to come to an end any time soon. I only work part time (4 hours a day, 4 days a week) because I physically cannot handle anything more than that. After work I get home and rest and that’s all I do, it’s stopped me from doing a lot of things. I’ve looked everywhere and spent hundreds of pounds on medication and anything that has helped people with similar conditions but unfortunately nothing seems to work. So I’m wondering, is there anything you done to relieve the pain?
It started in my hip area and the pain got to the point where I wasn’t able to get out of bed without help, thankfully that went away within a month however since then I have been suffering with it in my knee and foot (on the heel). I used to be on Naproxen, the same as you. However, a few months ago they put me on something stronger called arcoxia (I believe).
If you have any advice for me that would be really appreciated, as I don’t know what I can do anymore. Thank you
I am so sorry you are going through this. It is so painful and you have my upmost sympathy. The best thing I can recommend if you haven’t already is to ask your GP for a rheumatology referral. They did lots of tests on me to make sure there wasn’t anything else going on. If you are under a rheumatologist don’t be frightened to call them up (mine had a helpline) and say they you’re struggling and ask for advice. Good luck and I wish you a speedy recovery. x
Really pleased to find this blog and read that you haven’t had an re-occurrences since treatment. I was diagnosed with reactive arthritis 4 months ago after being ill for 6 months. Just been started on the same medication as you. Glad to know there is light at the end of the tunnel.
For me it started in my wrists, then spread to my hands, knees, ankles, feet and finally my elbows. Like you, it wasn’t caused by an STI or bowel infection. My rheumatologist believes it was shingles that I had over 12 months.
Thanks for sharing your experiences.
Hi thanks for writing this.. I was diagnosed with Reactive arthritis 4 mnths ago, my question to you is, did your hair fall out? Mine is been falling out at a very rapid rate and even have small bald spots, im glad you were able to overcome, it gives me hope
Thank you for sharing your story, and in particular for the hope it gives me! I’m suffering my second bout of reactive arthritis in 2 years (triggered food poisoning both times).
Last year it lasted just over 8 weeks and some days I found my hands sometimes just gave way or were absolutely frozen stiff. Some days I’m suddenly unable to open jars, dress properly or even lift the kettle to make a cup of tea. I’m now on week 9 and praying it is nearly over.
I’m in constant pain and try to just keep life going as best I can with fulltime work and young kids. I’m on Naproxen and paracetamol. I’ve also starred drinking juiced green vegetables with lemon and ginger to get as many anti-inflammatory nutrients into me as I can. I don’t know if it’s helping or not but certainly won’t hurt!
Night time is the worst and like you, I wake up frequently crying in pain as my shoulder, wrist, and particularly my hips and upper legs at the moment which makes any movement so excruciating.
I’ve got an appointment with rheumatology later this month but a GP who is otherwise pretty stumped as to what else to do to help me. I’m thinking paracetamol just isn’t strong enough now but asking for something stronger just feels like defeat 🙁
On the plus side, it is yet another reminder never to take good health for granted. Living with chronic pain is extremely hard for others to understand or know how to help.
I can’t wait for it to be over and have made significant changes to my nutrition to try and prevent any future flare-ups.
I have literally cried reading this, this morning! It’s exactly what I am going through and with three children under the age of ten, I feel helpless. I am normally such a fun mum, running around with them and now the only way I can cope with the pain is to dose myself up and I’m left like a zombie 🙁
It gives me hope to hear that you have recovered well X X X
Oh Teresa I am so sorry you are going through this and I cannot imagine how hard it is with three child. The pain is horrendous I know. I shed many tears! Not great timing with the summer holidays either. But it will get better. It will. Don’t be afraid to push for a referral if things don’t get better. And remember for most people it’s over in 6 weeks. Not sure how long you have had this? I hope you improve soon x
hii laura i am satyam from india. i am suffering from reactive arthritis.first attack was when i was 7 years old,now i am 24. symptoms are increasing . i need one help may u please send me a diet plan for such patients.
I had reactive arthritis 2012 and was in hospital for a week..I am having my first flare up but fortunately no swelling but more pain. This time my blood crp was 255, and they have given me steroids. .
I know the side effect are not good, but I could even lift my arm to put my seat belt on..within hours I could lift the mattress. .
It’s nice to see a blog on this condition as it’s a lonely one that nobody really understands
Thanks Laura
Thank you for writing this Laura I have just been diagnosed after a bad stomach infection,I have never experienced pain like this before every day I get up something else in my body collapses or becomes inflamed
I am waiting a long wait,I’m waiting to see the rheumatologist but it’s a long wait.I am on morphone for the pain but I hate taking it,my hip and lower back pain is the worst
Hi Andy, your comments just popped up on my inbox and i apologise Laurange for ppacking your blog…I know your pain Andy.It is awful. .My consultant 4 years ago never gave me steroids, I was just on naproxen and Co codelmol. I was prescribed prednisolone 4 weeks ago after a new flare up…They are fantastic but not a long term solution, although reactive arthritis is not long term. You will get better, it just takes a long time for your body to calm down. I am now weaning myself off these steroids now, and in the evening feeling the effects. I hope your consultant will be able to sort pain relief for you
Hi Andy, hi Laura
how long were u on steroids? I’ve been on them 9 weeks after 2 weeks in hospital, steroid injections in both knees, an operation on my knee and finger and 7 aspirations of the knee..
I had TV, an std, which the doctors didn’t pick up on…its now gone but I have constant BV and my arthritis just gets worse.
I’m attempting to come off steroids as I just worry that they’re making it worse but I’m down to 10mg and I’m in agony writing this.
I’m going to lose my job as I can’t work. Please can anyone give advice?
I don’t like taking strong painkillers as they just mask it but maybe I need them to push through till it goes?
Mornings are awful. In fact right now it’s horrible all day – they say movement helps but it really doesn’t.
I’m on methotrexate 9 weeks in 20mg too. No change…
Its in my foot toes knees wrist thumb and fingers.
Han x
Thanks for writing this. I was diagnosed with reactive arthritis last week. My pain came on rather suddenly like yours, and it was debilitating. It hurt to do simple, everyday things with my hands, my ankles and knees hurt so badly, and my shoulders and arms. I am now on my second round of steroids along with Etodalac which was prescribed by a rheumatologist. Today is the second day pain free, and this began in mid- February for me. I am really hoping t is gong away. The pain has been like nothing I’ve had before. Glad to hear you are doing well. That’s encouraging!
Hi Leanne, I hope you are feeling better now and have continued to progress the pain is completely crippling and nothing like I had experienced before.
Hi Laura.
Really appreciate your blog!
I woke up on Easter Sunday with a highly swollen right knee! Went to the walk in centre on the Monday to be told it was soft tissue damage.
Anyway…by the Wednesday the loan was unbelievable so I went to my GP. She was unsure so referred me to ambulatory care at my local hospital. They did loads of tests and initially thought it was a bleed on my knee as I suffer from ITP (basically a low platelet count). I was given codeine and diclaphenic to take and told to rest. Almost a week later on the Saturday I woke up and my left knee had swelled too!! I rang 111 on Sunday morning and they gave me an emergency appointment with the out of hour GP at urgent care within the local hospital. He changed my codeine to tramadol. I was back in ambulatory care on Monday for my appointment. After a fully day of tests and seeing the orthopaedic nurse they referred me to Rheumatology at another hospital!!
I was there yesterday where the GP thought it was a bleed and wanted to drain the fluid.
She did so and on the first squeeze said “it’s not a bleed”
Which I was happy about but confused. So she continued to drain and got 125ml from my right knee and 30ml from my left!
She put a steroid injection into each. I’ve woken up this morning and the pain is much less! It is aching a bit but not bad. I had a cold before Easter and she’s put it down to that! I also have not had the bowel problem or an STI- but that NHS website made me feel awful!!!
So now I’ve got to rest the next few days and see what the letter says with results. All this from a bout of cold!!
Honestly never felt pain like it in my life. Couldn’t sit down for a wee properly and couldn’t stand up without help!!!
Thanks for your blog!
I hope you get some answers and start to feel better, I agree with you the pain is just horrendous x
Thank you so much for writing this blog Laura. It has filled me with a little more confidence that what I am going through may well go away soon and hopefully stay away.
I am 28 and have had the reactive arthritis for nearly a year now. Its is so hard to diagnose something or find anyone who understands what you are going through when its is all mostly a feeling of pain or aching as oppose to something visible or on the surface. I have reactive arthritis myself and am still trying to deal with it today. A real emotional and psychological battle at times not having the strength to do much. managed to get a prescription for 500mg Naproxen, which I am yet to see if it makes a difference. It is coming up to 10 months since it all started and it has disappeared twice for maybe 2-3 weeks each time. I read somewhere that reactive arthritis has been known flare up after the initial 6-10 week. Fingers crossed I can get back to being active again soon.
I am really pleased to hear you are back to being yourself again. Thanks again, I hear this is quite a rare thing so it is quite hard to find anyone or anything with any real understanding besides the jargon you read on medical websites.
I also have reactive arthritis with no known cause or infection that started it. It also came overnight and seemed like back pain which then became foot and neck pain. Thank you for sharing. It is helpful to know other experiences. It took 5 months for a correct diagnosis and I’ve been on a medication for 1 year which manages it quite well (Meloxicam 15 mg/day). It is an anti-inflammatory. Best of luck and thanks again for posting.
I know what you mean by your joints locking into place. My knee would often do that it was so painful, i was sure if i moved my knee would dislocate. It hurt so much when the doctor moved it to test it. I have reactive arthritis in lots of places but the main are my hip, knee and hands. Before i started my medication i couldn’t write or type at school and the joints were really swollen. Taking the pills have really helped me but it’s a bit hard because lots of people don’t understand about arthritis, thinking it’s just something old people get and it’s nothing. I got mine from Atypical Pneumonia. Mine didn’t quite start overnight but it built up slowly then suddenly got very painful. It took a very long time to figure out what i had. About 10 weeks on crutches later and i can walk and run, depending on the day and how bad it is. Poor you having such swollen joints, it must of been terrible. My Mum did most of the usual stuff for me like squeezing the shampoo bottle and dressing me. Thankfully i can do it by myself now provided i don’t overwork my body. Oh looky here, i’ve practically written a novel in your comments. Sorry. Well, i should go know good luck everybody with whatever you’re going through. 🙂 Not sure why i felt the need to write this……
Thanks for your comment and really glad to hear you are making progress and feeling better now. I never knew squeezing a shampoo bottle could be so painful before I had this! Thanks for sharing I think it helps that other people know that others have suffered from this as it is quite rare and as you say most people associate arthritis with age, and not something that young people get. I hope you are still continuing to feel better x
I’m so happy to have stumbled across your blog. I was searching for overnight hospitals because no one around me understands and I really just want to give them some peace and heal and come back to them. Anyway, somehow I stumbled across your blog. I also have had multiple kidney stones and urinary issues along the way. They are very scary. I went to the Mayo Clinic and was convinced I had cancer. Just recently I was diagnosed with reactive arthritis after 3 years of searching and multiple unnecessary surgeries, including spine surgeries that just inflamed the arthritis more. Thank you so much for being brave enough to post your story online for the world the see. That must also be scary! Thank you for doing that though. It helped me greatly. Thank you.
Laura, one last thing, I have a two year old daughter. This started just 2.5 years ago. I’d always dreamt I would be the fun Dad that would play with my daughter and be the best dad. I’m still a good dad, but it’s so so painful to do so. Soon she’ll be old enough to know what is going on. I hope the sulfasalazine starts to work better soon. If no, they’re going to try enbrel. Apparently, I have a chronic type of reactive arthritis that doesn’t go away. All from a GI infection. It’s crazy. Anyway! :). Seriously, you are great. Thank you for posting this. I am curious as I never had any swelling. I do have some raynauds like some other posters. But no swelling like you had. Just pain in hips, back, SI joints, one knee, other ankle, both thumbs and left jaw. It surprises me every day with the new pains.
I’m so sorry it sounds like you have had a truly awful time of it. I’ve never heard of a reactive arthritis that never goes away, I thought by its nature that it was temporary although can last for a year+ for some people. This sounds truly awful and I hope that the medication starts to work for you soon and you can get some respite from the pain. I’d never heard of the condition before I got it myself, it’s very isolating isn’t it? I really do hope you feel better soon.
Thank’s for sharing.
It means a lot, as this condition is quite rare. One of the most frustrating things about reactive arthritis is the fact that so few ever have to go through it, and you’ll feel alone while suffering, desperate to learn about how others experience it.
One note though. Juvenile reactive arthritis tends to last for 6 weeks. For adults the prognosis is a bit different. 3-6 months is common. A few will have symptoms for even longer, up to s year… and some will even develop chronic symptoms, though this is quite rare and the symptoms are often mild.
Laura thanks so much for sharing your story. I have been suffering from reactive arthritis now since April. I picked it up from a strep infection that was detected from bloods. I also got the sore throat which was really bad but didn’t last long as I was on really strong 10 day course of anti biotics. Reactive arthritis is just so tough and your story really resonates. I am so glad I found it. The internet is great in that respect . Before this I ran 3 to 4 times a week (just short 5ks as I have 2 kids) but I had so much energy and loved my run as it was my me time. I’m so hopeful I will get back to it. For anyone else suffering I have got really good relief from yoga and keeping up a bit of cycling when I can. The joints warm up and it actually takes away the pain for me provided I don’t over do it. I’ve been on steroids for months now but moving onto a longer term solution with injections which means I can hopefully get off steroids. The whole experience has been life changing and there have been days I’ve been so low but all the docs I have met are saying it is likely reactive so your story gives me hope that I can put this behind me. Thanks again for sharing – you are right it does help x
Thank you for sharing, it’s good to hear other people’s experience as it’s hard to find good advice about rare conditions like this.
I’ve had reactive arthritis since campylobacter food poisoning back in March 2018, and last week finally got some naproxen from the doctor. Wow what a difference!
I’m not as bad as you seem to have been but it’s still debilitating to not be able to do anything active at age 37 with 2 little ones, and waddle like a penguin half the time. I’m hoping that the blood tests will show up something useful as I’m keen to avoid having this long term or developing Osteo arthritis from it.
Thanks for this post! My dad has been diagnosed with reactive arthritis. He says its the worst pain he has ever had in his life. I am a doctor myself but since this is not my area of specialty i have been searching for somebody’s personal experience to help me understand the disease process better. Its been 3 months now and he is taking naproxen as well as the DMARD that u mentioned, hydroxyquinolone. Symptoms are better now but his movement is still pretty restricted.!
Anyhow thanks for the post!
Thank you so much for sharing. I often feel alone in My journey and when Explaining to people I have reactive Arthritis and they google it…. it can be quite embarrassing. I do not have any STDs but I did have a stomach virus before my first episode. I am a 32 year old female. My first experience was in 2015 and I was seen by my family doctor who just prescribed pain and inflammation medicines. This instance effected my knees so walking was not an option. At 30 years old I had to move in with my parents because my boyfriend (now husband) had to work and couldn’t care for me. This spell lasted about 3-4 months with a one weekend hospital stay. I was told it was some kind of infection and most likely wouldn’t occur again. Almost one year to the day it came back. This time in my ankles. Which if you think about it is worse bc you have to put your entire body weight on them to walk. I chose to stay at home this time and wheeled myself to the bathroom and occasionally would just hang in the bathtub until my boyfriend came home. I was finally referred to my saving grace aka my rheumatologist. After many many tests he diagnosed me with reactive arthritis and I now take Enbrel shots weekly, for what could be the rest of my life. My Doctor said it’s rare to have a chronic case of reactive arthritis but apparently I’m in that small percentage. I battle with anxiety and depression because the slightest ache or pain terrifies me that it’s coming back. Even people who saw my swelling and helped me battle both of those cases don’t understand the fear I have for the next event. Currently I am experiencing just that. I have rashes all over my hands (never had that with my knees and ankles), a small amount of swelling, achy joints and tons of anxiety. My doctor is out of town but I was able to reach him via email. He gave me some advice and offer to have me see his colleague if it continues to worsen before he returns. My best advice is to find a doctor as caring as I was fortunate to be able to.
I really do appreciate your blog and hope you are doing well! I hate it, but it’s reassuring to know I’m not alone. Best wishes – Becca
Hi Becca, it’s not as abnormal/rare as they make it sound. I too have chronic reactive arthritis. It doesn’t really matter how you label it. Essentially, you have ankylosing spondylitis. You were triggered by an infection in the case of reactive arthritis. But, you were genetically predisposed somehow. All they know right now is the HLAB27 gene that increases people’s chances to get inflammatory arthritis of large joints (unlike rheumatoid arthritis that affects small joints for the most part). Enbrel and sulfasalazine have been a God-send for me. 🙂
I absolutely agree and sympathize with you. I have been in the same boat. Started with minor ankle pain in May that went away and came back this october with conjunctivitis and horrible pain in hands and fingers locking up. The hand pain is slowly getting better but now it’s in my back and neck and thighs. I didn’t have any swelling but just pain in hands. Hope this goes away soon.
Hi Everyone, especially Laura who started this. Thank you so, so much for posting about your experiences with Reactive Arthritis. I cannot tell you how much you have all helped me. My current situation mirrors so many of the horrors you have all described and the relief and reassurances I have gained from all the information is huge. I have never been in contact with anybody with this so have felt pretty isolated and bewildered…until now.
Thanks to you all, Sarah.
Hi there. Firstly thank you for this post. I understand its been 4 years since you initially posted it but I thought Id drop a message to let you know it’s still making people feel a little less alone…Ill add my story in hopes someone who is suffering and undiagnosed might relate and get a lighbulb moment that maybe its active arthritis. Immediately go see your GP about it, there is help and you dont have to suffer forever.
I’ve only been diagnosed with active arthritis last week, however been having symptoms since I was 17!…Im 30 now…so for 13 years no one had a clue what was going on with me. No STDs as I was not sexually active then or bowel infections as far as I can remember. However I did just move countries and we all know what a infection nest aircrafts are!
My pain started in my toes. One day my second one just swelled up and the pain was EXCRUCIATING. It went on for months! It was like walking on sharp knives. My toe was stiff and bluish/purple/red in colour. I took medication and even had a steriod injection. Nothing helped. Untill it decided to go away on its own one day.
Then for couple of years I had nothing. Then it moved to my other toe on my other foot. Same thing lasted months then went away. I got married, had my first daughter and had no issues that I can recall. After my second daughter was born my back aches started and never went away. I always just put it down to childbearing.
About 3 years later it came back. This time my middle finger on my hand swelled up. Went to the GP who sent me to a rheumatologist who put it down to me probably cutting myself somehow on that finger and acquiring an infection. He slapped me a bill of 3000 dollars and said I need surgery for my finger to be derived. It just did not male sense to me and I refused untill more test where done, which all came back negative for his diagnosis. He obviously was not a good rheumatologist (moral of this story ALWAYSSSS get a second opinion ) I decided to just roll with it and hoped it would go away as soon as it came. After a while it did, swelling went down and pain was gone but for the first time the stiffness stayed. To this day my middle finger feels stiff and has never been quite the same again.
Again couple years went by untill it started in my jaw. No swelling, however the pain and stiffness was so bad I could barely chew my food! I did physiotherapy, but nothing helped. Months went by and one day it just went away.
Couple years later I remember it was a day before my big overseas trip and I had taken a nap. When I woke up my right knee was really soar. When I layed down for my nap it was perfectly fine. The pain continued and gradually got worse. I hopped on a plane and off I was. A 21 hour flight later my knee was double the size, stiff and painfull. I decided to Ice it every night before bed and would fall asleep with the ice pack on my knee in about 7 days it had settled down to the point it was stiff but not swollen or painful. I finished my trip came back home and couple months after my thumb started aching. Then swelling and pain. Then my ankle would hurt for a while then it would stop. Then my wrist. That would pass when finally my point finger started. During this whole time I was in and out of my GPs office. He had me on meloxicam which helped with the pain but not swelling and stiffness. Then put me onto prednisolone which helped with the swelling and pain but again not the stiffness. Had multiple xrays and every test under the sun done. (My HLA-B27 was negative by the way) and no answers. Finally my GP sent me off to another rheumatologist who in less than 15minutes diagnosed me with reactive arteritis. He also empathized that my back pain was also a big indicator as the position of it is very specific to active arthritis (which for your information is the sacroiliac joint). I’ve had such EXCRUCIATING pain in that joint for years. I would litrally have to roll out of the bed on my side, onto my knees then slowly straighten up to be able to get onto my feet. Again I put it down to childbearing and later I became a nurse, which is pretty much a death sentence for your back hahaha. As it turns out it was the active arthritis all along.
I’ve only begun taking Sulfasalazine today but my rheumatologist is confident I should come good after the treatment which he recommended will be for at least a year. Was a bit taken back with the duration but after suffering from this horrible disease for 13 years. Whats 1 trying to settle it? And at least now I know what it is which is a relief all on it’s own!
So if you too are in the same boat. There is help, just be persistent and take a active roll on your health management. Like I said I am a nurse and let me tell you the doctors dont know everything! They are only human and make mistakes and have a certain amount of knowledge and capablities. You know YOU the best. If something seems off follow it up untill YOU are satisfied. Seek a second…third…fourth…hell, fifth opinion. Help is definitely put there…best of luck to you all ?
After reading all of these posts, I feel compelled to tell my story…I was diagnosed with Reactive Arthritis back in February 2019 and I am still dealing with it. My symptoms actually started in January but it took a few weeks before they settled on Reactive Arthritis which was diagnosed by a Rheumatologist and also agreed upon by a Infectious Disease specialist. Anyway, I visited the emergent care at the hospital 4 times in 1 week for the excruciating pain and kept being treated for gout (as it attacked my right ankle). On my 4th visit to the ER, my son had to take me as I was unable to walk and he insisted that they refer me to a physician who could do a thorough evaluation. The medications that they had been prescribing did nothing for the pain and finally gave me a few Percocet to relieve my ankle. The really hard part about it was that no one really seemed to realize how horrible the pain was and I am pretty sure they thought I was ‘drug seeking’. You really do feel alone and isolated with this disease as it is unknown to most including other medical providers. I cannot imagine having little ones and having to care for them with the initial pain that this causes. My pain has improved and I am able to physically do whatever I want but still have the swelling in the ankle. I now have also developed intense itching and/or pins and needles sensations under the skin which can drive you over the edge. Thank you to everyone who has posted here as it gives us hope and support that we all need.
Hi Jeanice,
Hope you are feeling better. I am experiencing the same pins and needles and itching symptoms following bouts of urithritis/conjunctivitis and arthritis. It’s driving me crazy since it also came up as a symptoms for multiple sclerosis when I looked it up. My pins and needles symptoms is pretty much all over the body. Was yours located at a specific location or throughout the body. This is a horrible phase and I hope it goes away soon.
Thanks,
Parag
Hi dear,
Thank you for sharing. In March I had a horrible uti which needed 2 courses of antibiotics. In early may my joints became so painful, swollen, knuckles red, very tired, and fever that would come and go.
I go through flares, days where I can’t move, opening a bottle of water is difficult and days where there is just soreness at the joints. Unlike the posts I’m reading, my pain would shift, one day my right knee would be swollen and painful and the next my left. Same to other joints. I’m nearly 6 weeks in and the pain seems to be subsiding but I dont know if I am being cured or I will experience another flare. The waiting for the pain attack to come alone gives me anxiety. I definitely believe that the flares are somehow connected to stress.
I feel with everyone suffering from this illness, I rate it worse than all 4 c sections I’ve had.
Thanks for sharing
Hi Laura, Thanks so much for posting and for all the comments from everyone else, which have been really useful. I’m a 48 year old solo mum to a nearly 3 year old live wire son (truly a last chance saloon miracle!) and was recently diagnosed with reactive arthritis following an acute stomach bug 3 months ago. I’m truly shocked by how quickly the symptoms came on and how severely my hands, knees, and feet in particular have been affected – changing my son’s nappy and opening jars etc is a nightmare and the intense pins and needles at night drove me to agony, insomnia, and despair! A couple of days ago, I finally had my rheumatologist appointment. She said my case seemed quite severe (lots of fluid in my hands, which I was unable to straighten, and still very tight calves and swollen feet after 3 months) and was given a shot of cortisone which seems to have had a massive impact on the pain – and I am finally able to straighten my hands again. The swelling has gone down a fair bit too, which is great. However, the doctor was also pushing for me to take 4 tablets of Sulfasalazine for the next year! She says it will help prevent the reactive arthritis from coming back…but I have read conflicting reports. I’m really hesitant to take more medication, as my body has a already had to suffer some extremely strong, toxic antibiotics for the past few years on and off (after a freak hiking accident in Thailand in late 2018 in which I managed to get my upper right arm infected with a rare bacteria….but that’s a whole different story! :)) My question to anyone who reads this far and might have an opinion is…should I take the Sulfasalazine or should I just hope that the reactive arthritis fades in time of its own accord? FWIW I have been exercising daily (1 hour fast-paced walk) and have completely cut alcohol, sugar, and most carbs and am practising intermittent fasting. The mental and physical effects have been truly amazing and the arthritic pain reduced as soon as I started. Sorry for the long ramble, thanks for reading and TIA for any advice!
Carms
Hi , I think I have got a very similar thing . The rheumatologist hasn’t put a name to it yet . I know this is an old post just wondered if you have any improvement these days and how has your medicc vs action helped ?
Thank you for posting this Laura I’ve been suffering with this for 8 weeks now after a stomach bug and it’s completely wiped me out and changed my life. I can’t drive, walk the dogs and shuffling along trying to walk. Mine is currently affecting my ankles, Achilles heel, knees, chest, Neck and a couple of fingers omg it is so painful and just trying to change positions in bed causes so much pain I have to psych myself up just to straighten my legs. So far only had 1 steroid injection and a short course of prednisone I’m waiting/hoping I get something else prescribed soon as I really want my life back.
Thanks for writing this blog… I have been searching the Internet as my 5 year old son who is extremely active started limping after having chicken pox, (he only had a few spots) his right knee swelled and he had to have fluid drained, 1 week later he couldn’t straighten either of his legs and was screaming on pain, we spent a week in hospital all bloods came back OK apart from inflammation markers… He reacted well to ibuprofen and started walking again, we saw consultant the week later and he said take him off meds now and see how we go… That lead to a horrible flare up 10days in now and he’s slowly getting his mobility back but he has had it in his knees, wrists, ankles, elbow and lower back he also has red marks that look like bites then turn into a bruise after a few days I have read that happens with reactive arthritis and all the symptoms relate to the symptoms he has but the NHS website threw me with STI, we’re back at the consultant in a few weeks, he’s now on naproxen and I’m praying it ends soon… Did any of you just wake up and it was gone? Xx
Gosh I am so sorry for what your son is going through, it was hard enough as an adult. I hope the consultant cane help. If he is on Naproxen do ask about stomach protectors for him x
Big thank you Laura for creating this blog. It can be so overwhelming and isolating when nobody’s heard of this condition. I have had Reactive Arthiritis for 4 months now, and only getting worse. Started after 3 weeks following UTI. Initially it started of as back pain on the left side, and I was misdiagnosed for months with sciatica, as I had knee and foot pain too on same side. Turns out it was not coming from my back at all but my left hip, which I always insisted was where the pain was worst, however told the pain was refered pain from back. After seeing osteopath, chiropractor, 2 back specialists and no answers to my pain, I decided myself to see a rheumatologist. Straight away he told me this was not nerve pain but inflammation at seperate sites. I now have pain in my right hip too, pain within minutes of sitting, can’t walk or stand more than 10 minutes. Last 2 weeks new pains daily. Pain on both heels, toes, ankle, right knee swollen too, constant ringing in ears, rib pain.
Its life changing. Had an ultrasound with steroid injection on left hip arch which showed inflammation, as of yet no improvement.
Seeing rheumatologist again next week, for results of HLA-B27 test and hopefully start some meds.
Thanks for writing this blog. I have been searching for people’s accounts of ReA. I got Reactive arthritis couple of weeks after my delivery. Have been trying to manage the symptoms along with looking after a newborn has been tough both mentally and physically. It’s involved my shoulders and knees. My knees have gotten better in 2 months, however the shoulders are very painful with restricted movement. Hoping it gets resolved over time. Your blog and others’ comments have given me some insight and I don’t feel so lonely after reading this since it’s not a very common disease to have.
What was most difficult to deal with is how quickly the symptoms came. One day I was fine and the next day the symptoms started full blown. I am in a country where we can directly goto the specialists so I consulted an ortho and rheumatologist myself.
I’ve had reactive inflammatory arthritis for going on 7 years. I’m in USA and it took almost 3 years to even get a diagnosis! So now I’m stuck with it and it’s destroying my life and joints. I’m so happy to know you recovered.
Hi Laura,
Thanks so much for sharing your experience. I’ve had similar symptoms for about 7 months now. It started about 2 weeks after my UTI diagnosis. However, my rheumatologist thinks it is Rheumatoid arthritis. I am doing my own research because I have a feeling and hope that it is reactive. Rheumatoid is lifelong so that’s why I want it to not be that!
Did you have to receive medication for it to finally go away? How did they know it wasn’t RA?