Reactive Arthritis, but no-one is listening.

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I am 39 years old and have just been diagnosed with reactive arthritis. My docs appear to be rubbish, as after reading some of the other posts I feel like I'm being fobbed off. I have been given no painkillers and was told to rest until it passes which is up to 6 months. I have had this on and off for the past 18 months but they don't seem to be taking in what I say. I don't know where to turn to in order for someone to listen to what I am saying.

At present I am unable to walk unaided due to the pain and weakness in my hips and knees. I have also developed pain in my lower back which keeps me awake at night as I am unable to get comfortable (my constant fidgiting keeps my hubby awake and he has to work). I am tearful all the time and frustrated that I am unable to do even the simplist of tasks.

Any advice or just someone in my position to talk to would be good

Thanks

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10 Replies

  • Posted

    Hi.I have had reactive arthritis for 4 months and feel the same way.It has been so debilitating and the most painful experience.Mine came on very suddenly after a tummy bug ,picked up from school,where I work.I had sciatica I couldnt put my left foot down.I could only get to the bathroom with help.I couldnt sit up without painkillers.I had 3 weeks in bed ,then used walking stick!My doc immediately diagnosed it ,and many painkillers!

    I have been off work for 4mths,they will expect me back in Sept.Can not believe you have had it for 18 mths. I am having pains too in knee ,hips, wrists,and joint swellings.I have had physio and hydrotherapy at hospital as affected all my spine and could not bend to oven , washing machine etc.now I can.

    People cant believe that I am still not better.I really sympathise with you.I am seeing a rheumatolgist soon so maybe have answers.Do you have swollen hands too?I think maybe ask to see specialist.I find taking Panadol at night really helps.Doc says safe to take regularly.He gave me Co-Dydramol for intense pain .Hope this helps.It is good to share problem as nobody really understands, It would be good to talk .

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  • Posted

    Hi, Thanks for your reply. I hope you are doing better. I am waiting to go and see my doctor next week and I will be asking questions as to where I go from here. I'm not doing to bad at the moment. Can move about and do the everyday stuff at the minute. A very different story to last week when I was having to use sticks and having to do things very slowly with lots of rest.

    I have swollen ankles and knees but only my thumb on my left hand is affected at the moment. I have also noticed it seems to be much worse after doing a few extra things throughout the day. I am unable to take my dogs out or walk down to the shop and being stuck in the house unless my husband takes me is rather depressing.

    I hope your appointment with the specialist goes ok and you get the answers you need.

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  • Posted

    Hi,Thank you,I have many questions.It is very up and down isn't it?I had a flair up last week and it is so depressing,as I was beginning to feel better.I also can not take the dog out and rely on my husband alot.

    Do you work? I am not sure whether I will be fit to work in the special needs school again as not fit and they have many viruses!!

    I hope doctors ok too.Will tell you how I get on.We are evidently going to have good and bad days.

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  • Posted

    Hi, it is very up and down but just lately I am finding that I'm having more bad flare ups than a little. I just think I'm doing ok and it knocks me back down.

    I do miss taking my dogs out and nipping into town or even to walk down the hill to meet my husband from work. I myself do not work as this illness is not permitting enough. I have woken after a restless nights sleep with pain in my shoulder too. I have trouble keeping my legs still at night, they twitch so much it wakes me and my husband up. I suppose its just another part of it to get used to.

    I think as far as your return to work, I would speak to your specialist and your doctor.

    I find that keeping my legs warm helps alot but I do feel somewhat like a granny having a blanket over my legs ha ha.

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  • Posted

    Hi , Yes I am 46 years old and feel like 80 !! How are you? I have also had shoulder pain and restless legs so much so that I have to get up.This Sat. I was in agony in my neck and shoulder and found it hard to get up ! Went round with heat wrap around my shoulders all day.I don't suppose this damp weather helps.

    Are you going to docs this week.The flare ups really knock you back don't they?I.hope to find out more from rheumatologist any way hope you are having a good week.

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  • Posted

    Hi there, I also feel as though I am much much older than my 39 years. Had a good weekend but may have over done it as it flared up again Sunday night. Had to use the sticks again yesterday not a great help in keeping up with things ha ha.

    I spent last night in the chair in the lounge as its the only place I could get comfortable and didnt wake my huby up by kicking him. I find the restless leg stuff worst as I cant control it at all, frustrated is not the word.

    Back to the docs this week so we see what they come up with this time ( another useless and pointless plan if the past is anything to go by)

    I hope you are well x

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  • Posted

    Hi again,Hope you are managing to get a round better.You must be in pain to have to use sticks.I really hope your doc can help,but they don't help much I am afraid,but they may refer you to physio and hydro therapy at local hospital.I think this has helped me.

    I find that too,that you have good days ,.then you seem to go backwards! Very demoralising! I have had a better week so far.Wish you luck at docs.

    Hope you are feeling ok toox

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  • Posted

    Hi Just thought I would catch up.See how you are doing?7 months down the line and find still quite alot of pain.Had an MRI scan and still waiting for results.Have gone back to work slowly,but very tired and still in pain.I am afraid my job will be lost now as need to go back to work full time next two weeks or out.I don'tt think anyone understands the pain and how debilitating it all is.

    Hope you are doing ok?x

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  • Posted

    I am fighting with ReA. My ReA is due to a bacteria infection. My left foot is swollen and MRI shows fluids within the joints. I also have the same pain that migrates around my body. My doctor is treating me with antibiotics and I am also taking sulfasalazine and indomethacin. This is my second week on Sulfasalazine. I started this problem back in June 2012. This is a long process. Please ask your doctor if this is due to an infection. Please keep us posted.
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  • 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!!!

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