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Where do I start??

Posted , 9 users are following.

Flo31
Flo31

Hello Everyonel, I'm very new to all this so please bare with me if I ramble on - I don't really know where to start.

I am a 31 year old female from the uk and 4 months ago I was diagnosed with A.S. Its been a pretty miserable and lonely few months as no one seems to understand how I feel. Isn't it such a difficult thing to explain? One day I can walk and live a fairly normal life - and the next I may be unable to do, well anything really.

I have had lower back pains for a few years now, and was repeatedly told by the GP that I had slipped a disc. I took all the medications the GP gave me such as painkillers and anti inflammatory meds, I spent hundreds, if not thousands of pounds seeing a chiropractor, went for all my physiotherapy appointments and continued doing the exercises assigned to me to help me with my "slipped disc". But I never seemed to get better. I was stuck on the floor for days at a time, not being able to meet my basic human needs such as getting to the bathroom or being able to cook. My partner would try to help me move but every time he went to lift me, my body would scream in pain and I would beg for him to leave me. One weekend it was so bad I was taken to our local A&E department, where the doctors told me to walk off the pain and take some over the counter painkillers. I begged the doctors at the hospital to give me a MRI, but this fell on deaf ears. A few days later I saw a different GP who said I hadn't slipped a disc and I had dislocated my SI joint. She said she could feel the dislocation and tried to manipulate the dislocation back in. I was sent on my merry way with more painkillers and more of an uncertainty as to what was wrong with me. As the weeks went on my neck, hands and knees were starting to get painful, again with regular visits to the GP. At last, months later I got referred to the Rheumatology team and after a MRI scan, blood tests and Xrays I got my diagnosis.

I'm still waiting to try the Anti TNF drugs, hopefully in the next month or so I will start. But I have so many questions and I don't know where to start. Not just about the drugs but about EVERYTHING.

Will I ever feel 'normal' again?

Would the manipulation from the Chiropractor have made things worse?

If the drugs work how long will it take for them to start?

I seem to be constantly 'flared' lately, does anyone else suffer for weeks at a time?

How do I stop the night sweats?

How do you walk/stretch/exercise when the flare up is so bad you have to walk with crutches or crawl everywhere? (If that's even possible).

I hope I haven't bored you, and I hope that I have explained things well enough for you to understand what a long, confused road I have had and its one that still seems to be ahead of me.

I could really use some advise if anyone out there could help?!

Yours Thankfully,

Flo.

0 likes, 20 replies

20 Replies

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  • JASmom
    JASmom Flo31

    Posted

    Hi Flo,

    My 21-year-old son has AS, initially diagonosed as JAS when he was 16. Since then, he has been on Enbrel (4.5 years), and now Humira, for about 1 year, after his system acclimated to the Enbrel - neutralized it - and it stopped working. Basically, on these injectables, he leads a pain-free, normal life. He bikes, swims, executes his college projects and work without inteference from his AK condition, thanks, currently, to the Humira. Would it be possible for you to try either of these meds, or don't you have access to them? That's the best info I can offer. I'm on the verge of leaving these discussions, so good luck with your treatment search. -JAS Mom

  • trevorc3
    trevorc3 Flo31

    Posted

    Hi again all. Just an update. About 6 weeks ago a friend gave me some pills he recommended.I was fed up with the side effects I was getting from the morphine patches so cut down on morphine and started taking the se pills as well and still felt o.k. So I gradually dropped the morphine and after 2 weeks stopped it altogether.Had 3 nights with the shivers which I expect were withdrawal symptons but other than that it went o.k. A month later taking only the dl-Phenylalanine and I have just mild pain, no side effects and am feeling pretty good.
  • mandy12133
    mandy12133 Flo31

    Posted

    I no how u feel its you thats suffering but in the end u just fink well leave me alone and let me suffer because people cant see the pain u can still feel it the constant aching and stifness not knowing wot to do for the best . Ive not been diaganosed yet but have been like this for years but seems to b getting worse now ! Had blood tedt and lumbar x ray so far all normal , which is good but dosnt explain ure pain !! I have all the symptons but who knows !! I jyst want to get back to work . At least u have been diaganosed and can start treatment ,, take each day at a time hope it worke fir u
  • richard76726
    richard76726 Flo31

    Posted

    Hi flo31 my name is ricky and I know how you feel I to was misdiagnosed my doctor kept telling me I had just pulled a muscle in my back. That was untile I got uvilytis then I was told I had a.s  this might sound strange but I was over the moon. I was not a hypochondriac like my doctor thought I could see it in his eyes every time I went to see him.but I divert I was diagnosed with it in 1999 I have been on 2-3 different injection and am on humira now hope this helps.hope to corespondent with you again soon bye for now

     

  • rose0000
    rose0000 Flo31

    Posted

    Hi Flo

    I think you did well to find this forum, because now you will never be alone, but will have all of us to share your experiences with. I think everyone's AS experience is different. Some have very mild versions, and hopefully you are one of them, and can lead a pretty normal life save the odd flare. Others, myself included, have constant flares, which is harder to live with. For two years I waited for the flare to subside!! Hoping it would.

    The first thing you need is a good rheumatologist, someone who knows ahout AS and possibly an AS specialist. This will help you have confidence in your meds, and someone who will can advise you carefully and support you.

    There are lots of treatments out there, so do not despair. There is a huge range of things you will try and some will work, and some will not.

    I can not stress how important it is to keep up your exercise, if you can do it, I am finding it hard to do this now but whatever you do, do try to keep going it will really help.

    Talk to your family and friends. It is an invisible illness and not everyone can easily identify with it, but you will need support in the coming years and it is imperative they come with you and understand your illness.

    Do not be afraid. We have all been there, and it is terrifying when you are young being given such a diagnosis, but you will gradually accept it and learn to live with it.

    Make the most of your good days!! I have to say your good days will be so precious. On your bad days have a plan on how to manage. What you can do to relieve it. 

    Book lots of holidays. The warm weather really helps my AS. It is a good excuse!

    I hope this helps Flo, if you have any other questions, drop me a line x

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