Ankylosing Spondylitis physio is driving me to depressio

Posted , 9 users are following.

My physiotherapy treatment is driving me to depression.

Everything from being ignored in the hydrotherapy pool to being dismissed by arrogant physios, I have been brushed aside by my designated physio despite being guaranteed free physiotherapy whenever I needed it by my consultant because of my chronic condition.

My local hospital is the University of Durham Hospital and I find the physio department inept and incapable of coping with patients and especially those with ankylosing spondylitis.

I left my last hydrotherapy session in tears as I was ignored by the physio for the entire session in the pool as she chatted to the physio outside the pool about a night out and her next holiday. Other patients were also ignored. My session was also cut short to 25 minutes due to how busy the small hydro pool had become with patients. I felt so sorry for those poor people. Some of them could hardly move but the phyios were more interested in chatting. I couldnt believe what I was seeing and I felt so uncomfortable in their company.

Anyone with AS that has been fortunate enough to have hydro will know how beneficial it can be and to be treated like you dont exist is heartbreaking.

I was so upset that I mentioned it to a senior physio who said he would look into it. It was quite obvious that by the time of my next appointment, my physio had caught word of what I had said and was very rude and dismissive to me. My session lasted 4 minutes and involved measuring my chest expansions and giving me one single groin stretch exercise to try at home (bearing in mind this lady is supposed to be an AS expert and that I knew every AS exercise already). She then said \"see you in 4 weeks\". With shock obvious on my face I asked \"why so long\"? She replied saying that because she \"is going on holiday and no one could cover and I was also not a priority\". With that she pulled back the curtain, wrote me a slip saying 4 weeks for me to hand in at the reception and left - and so did my heart. I sat down to compose myself and left the hospital. After a quick cry in the car I managed to start the engine and drive my 40 minute journey home.

When I got home I called her to ask that in future if she could start giving me accupuncture or masage in the sessions rather than a quick 5 minute question and answer of what stretches I have been doing which was not beneficial at all. She said that physios didnt offer massage and that accupuncture would not help. I begged her to reconsider as accupuncture has given me huge amounts of releif in my last 5years and I was told I could have it from my physios. Again she was dismissive with one word answers and I was left with nothing.

This was 1 week ago and I dont know what to do. One option I have is asking my consultant to transfer my physio to another hospital (The freeman in Newcastle) but that means a 90 minute drive for me and by the time I drive there and back I have lost half a day at work and am stiff and in pain again.

I am so low at this point. I am depressed and cant see a way forward for the first time since I was diagnosed two years ago.

Im now paying for weekly massage and accupuncture privately costing me £400 per month (half my monthly salary) and heading towards bankrupcy just to survive.

My enbrel is not working and I can see my hunch returning on my upper spine. Im riddles with knots and spasming regularly. Im upping my morphine tablets and diazepam ad struggle to remember yesterday.

Has anyone had a similar experience in Durham or even in the UK?

Im desperate for advice. Otherwise I dont know what I will do. _________________________

28 year old UK male.Undiagnosed back and hip pain since I was 13 years old and diagnosed with Ankylosing Spondylitis at the age of 27.Started taking Humira but it did not work. Now trying Enbrel. Also taking lots of pain meds including morphine, tramadol, gabapentin, diazepam, diclofenac, paracetamol.Now suffer severe fusion of the lumbar spine and Sacroiliac Joints/hips.Now Trying to support healthy living through gardening:

0 likes, 12 replies

Report / Delete

12 Replies

  • Posted

    [quote:87555bb576]28 year old UK male.Undiagnosed back and hip pain since I was 13 years old and diagnosed with Ankylosing Spondylitis at the age of 27.Started taking Humira but it did not work. Now trying Enbrel. Also taking lots of pain meds including morphine, tramadol, gabapentin, diazepam, diclofenac, paracetamol.Now suffer severe fusion of the lumbar spine and Sacroiliac Joints/hips.Now Trying to support healthy living through gardening.[/quote:87555bb576]

    I have a similar case to you. I too was struggling with pelvis, hip pain since I was in my early teens, I have only just been diagnosed with AS. I was ignored until I eventually couldn't walk any more. I was then sent for an x-ray and they found out my Pelvis has fused and that my hips were totally destroyed. Meaning i had to under go bilateral hip replacement at the age of 18.

    As for pain medication since I had my hips replaced i'm not too bad. I have pain in my shoulders and that's about it. I do suffer from a lot of stiffness but that calms down once i get moving. So i am only taking 200 ibuprofen supposed to be taking it 3 times a day but only taking it 1 / 2 a day. I don't know if i'm doing myself any favours by doing that.

    I have been offered other alternatives, Methotrexate and Sulfasalazine but i don't want to take these as they have really bad side effects.

    I just don't know what to do.... i want to keep the AS under control but at the same time i don't want to take these drugs. because i will have to cope with the side effects for the rest of my life, and with me been only 19 thats a long time to cope with them.

    I wish you all the best traveler123, i know it's hard but i suppose you just have to stick in there. You are not alone.

    Report / Delete Reply
  • Posted

    Traveler - Your story is almost exactly the same as mine. Not to give you false hope as we are all different but I am want to chat with you on how I tackle AS. I am 26 years old, diagnosed when I was 24 after years of pain etc.

    I had ignorent physios too, seriously, if only I had the time to write my story out. I will this week after work one night.

    I am not registered on here yet but email me ken23 at hotmail . co . uk .

    I have wrote it like that to stop spammin. Anyone else who wants to discuss via MSN etc give me a shout via email first!

    Stand tall

    Kenny

    Report / Delete Reply
  • Posted

    Is methotrexate an option for AS sufferers??
    Report / Delete Reply
  • Posted

    Hi

    Really sorry to hear of your experience with the physios at your hospital, The Physios I saw at Guys were all excellent but it's impossible in an appointment to get much benefit if, like me, you're not very good at doing the exexercises regularly, on your own, at home afterwards. I told my hospital physio that I was doing Pilates and they agreed that the exercises were including everything the Physio could show me anyway.

    By way of background, I am 51 and have recently been diagnosed with AS after 30 years of on and off pains. I was finally diagnosed two years ago after a flair up of chronic uveitis, excrutiating hip pain and psoriasis all in one go which sort of shouted out AS, AS, AS, to the docs at long last. The AS pain has died down since taking up Pilates and I can't recommend it enough. Pilates covers all the exercises that the physio will give you. You'll need to find a "Level 3" trained teacher (list on exerciseregister.org/REPsInstructors.html ) It can be expensive for one-to-one classes but I just go to a group class for one hour twice a week and the teacher is aware of my limitations. I also try to do some of the stretches every day (though I mostly forget). I hardly have any flair ups of AS pain now (though the uveitis continues to drag on and on).

    Good luck - I do hope you manage to find a way of moving forward. There is really no point in putting up with surly physios as you'll be too tense for their "treatment" to be of any benefit to you.

    Report / Delete Reply
  • Posted

    Hi there everyone, I am 25 and have suffered from back pain since i was 12 years old. I have been through the whole process, of physio after physio after physio, then acupuncture, then physio until i struck my 20's.

    From then i started to suffer agonising sciatica and could not sleep, stand, walk, put on my smalls...pretty diabilitating stuff. The doctor gave me Co-drydamol and Diclofenac to stem the problem as it was just "a sore back". I took these painkillers for a while and to be honest noticed a slight improvement and after 2 months the sciatica was gone which was a result. During that time however I lost my job due to the length of the pain and as i was a labourer operating heavy machinery...they had to let me go.

    This process of starting a job then losing it would be quite a theme from the age of 21 to present day. As I am getting older my back/spine/pelvis/weight/muscles have gone from a healthy man in his prime of his life to hobbling around, sleeping 3/4 hours a night, not going out and enjoying myself because one bad stumble or trip will put what can only be described as an electric shock through my body and cause the back muscles to spasm. These spasms are terrifying some times as they make my nerves very very receptive to pain.

    So again went to the doctor in August, September and October 2011. I got the process of physio - she couldn't do anything but accupuncture as my back was in such a mess we couldn't do any actual physical therapy. Plan B - have Tramadol, Diclofenac, Co-dydramol, and Naproxen. Co-drydramol = there was so much in my system that it has no effect on me at all, Tramadol = no effect, Diclofenac = No effect, Naproxen = Worked brilliantly for 2 weeks now nothing. Eventually couldn't eat, sleep, walk properly, hunching, constant pain...DR please help! - result = an appointment with the Rheumatologist. This was November 2011 by this point....when is my appointment?

    May 8th 2012 - Appointment with Rheumatologist! - After much bending and twisting and general torture he said from initial checks i could have 3 things - Arthritus of the spine, AS which is accompanied with disc problems which will (in his mind) require surgery - consultation physically hurt but was productive got booked in for an MRI, which incidentally was yesterday 14th June 2012.

    My rheumatologist asked my about pain relief and told him my murky history of painkillers and really all pills that are handed out like sweets. I said i dont take anything anymore as it was ruining my body, my self worth, and robbing me of days.

    Now i am not pushing this opinion on anyone but this is my situation....I smoke cannabis everyday for my back, since doing so i have started a new job (i was unemployed from November 2011 until today), walk around more and can get to sleep for longer than 3/4 hours. It certainly has not cured my problem and it would be ignorant to assume so, but it is a contributing factor to reaching that light at the end of the tunnel. Medicinal use in Britain has to be pushed and I fervently stand by that because popping pills and turning into a vegetable is not a way of fixing your body.

    Thanks for your time everyone, and please do not be offended by any of my views. My life has drastically changed since last year because of this unfounded problem that has plagued me since i was a boy.

    Report / Delete Reply
  • Posted

    iv been considering canibis i have to say im in agony, had back and hip problems all my life- born with them and havent had no medical help. i keep gettin passed pillar to post. was in a wheelchair during last pregnancy and the midwives were worried of a permanent damage to my ability to walk from giving birth lying down etc, was under physio, been rhuematologist who doesnt believe women can get it and blah blah, on naproxen, co-codomol, tramadol, just been given ametripteline to start tonight. and im just gettin no were, i feel like no one is taking my pain seriously. i havent slept a full night in weeks, and this bout of severe pain has included all my joints. i am literally still hobbling round 8 weeks on... i jus feel so abandoned by the medical world. theyv knwon iv had issues since birth when i had my initial examination but it just seems like everyone wants to pass me on and not do anything. they offered to pin my hips when i was 17 but wouldnt discuss what the problem was or why they needed pinning so i refused- at that age i wanted to be a famous dancer or actress as you do. ten yrs on and im an absolute mess. i cant even carry my son up to bed or lift him in the cot the pains been that bad. its so depressing. i waited 7 weeks every day in constant agony to be told by the rhuematologist even though my symptoms are mimiking ankolysing spondylitits he doesnt believe women can get it. i have three aunties diagnosed with it and three female cousins ironically, and my grandad, and one uncle. all fully diagnosed and part of the uk trials on anko spond. yet women cant get it. my aunty thelma has full spinal fusion from yrs of being fobbed off and ignored and full curvature at the top, she has a brace holding her head up and in place coz of the damage. i dont want to end up like that- no offense to thelma. im only 27 with three young kids, im self employed so iv literally got 25p left in the bank and im going to have to go back to work despite the agony. if i move more than ten mins my joints are agonysing, even typing this my wrists are swelling up as i wastch them with pain through all my hands, fingers and forearms. its a nightmare.

    iv always been anti drug but my friend takes canibis for a condition she has and suggested it. i dont know whether to try just sprinkling seeds on my food first tbh and maybe some hemp oil to rub on my joints. but i cant go on feeling like this and just being ignored. i had hoped that yest wen i saw the rhuematologist would be a day of revelations. but sadly it hasnt been. i just feel like crying.

    my physio stopped in dec wen i moved and i needed a new rereferal under ym own area- can i get that referal i ask for it at every appt and im just ignored.

    anyway my rant is over. but its just sickening how so called specialists wont get with the times and realise that Anko Spond can occur in women. other have hence why some women are diagnosed.

    id like to know what the radiologist saw on my xray that would be interesting, considering she asked if i had had surg and even went as far as to examine my spine for scars. fingers crossed i get sumwer soon. and good luck to everyone who has been diagnosed.

    x

    Report / Delete Reply
  • Posted

    Maybe you've already had one but an MRI scan would give more detail than x-ray. Good luck with getting your referral I think if I was in that much pain and being that ignored I'd crawl/hobble into my nearest A&E??
    Report / Delete Reply
  • Posted

    Hi

    Probably shouldn't really be sticking my nose in here. I don't have Anko Spond (A/S). But I do have cervical spondylosis...i.e. neck related only.and I'm kind of surprised not to see any mention of the use of memory foam for sleeping to ease the aches. It works for me big time, and it might just be useful for AS as well. Might be totally wrong but thought it worth mentioning.

    Report / Delete Reply
  • Posted

    I went to a&e was admitted for five days they discharged me coz i didnt hav a sore throat- god knows wer they pulled tht from. They had me bed bound on morphine n literally two mins later dischargin me n expectn me to walk. My bf had to carry me out d hospital.
    Report / Delete Reply
  • Posted

    It was sum dr who hadnt seen me n hadnt bothered reading my notes. Waa sent home n had to wait 7 weeks for the rhuematology appt on napeoxen omprazole cocodomol n tramadol. Its bin absolute agony cudnt celebrate my birthday, cnt leave the house without help n 9 times put of ten i need a wheelchair and copious amounts of pain relief. If i move my joints r agonysing if i rest my back is agonysing i cnt win. Tryin to sleep is literally hell!
    Report / Delete Reply
  • Posted

    I hv a memory foam be x
    Report / Delete Reply
  • Posted

    When I was diagnosed w/ AS at 28 but felt it in my hips back & heels starting at 17 and many other places too many to get into now. I thought I was dying going from athletic Well built teen to this...I thought I was dying. I was given anti-inflammatory pills like indocin. That worked pretty good until it started giving me problems with my kidneys and eventually GERD. I now have chronic kidney disease and GERD & 7 other diseases. No exaggeration. I don't know why you started off with Embril and not with anti-inflammatory meds. I abused them because I wasn't monitoring myself. I left it to the doctors and that's where I screwed up. Around the age of 21 I was having pain in my neck, shoulders, chest, ribs,hips & muscles & ligaments to bone density. Fingers, hands, elbows. Discectomy to fuse C2 & 3 and C7 & 8 w/pig bone. The rest of my neck was fused already with Spurs sticking in my spine and pain for 10 years like that. My family abandoned me along my friends and girlfriend because they just don't understand and don't even try to. I live alone waiting to die.

    Have you tried Remicade fusion? I've been on it for 10 years now and it prevents me from being bedridden. But if I were you I'd start from the bottom w/ Indocin & monitor your kidneys like I should have done.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up