General advise needed

Posted , 5 users are following.

HI all just looking for some advice.

im struggling to get a diagnosis of what im suffering from, my family and my gp think its ankolysing spondylitis ( there are 8 members of my family with it 6 being women) however rhuematologist wouldnt even consider it as it is rare and appt even rarer in women- despite my family link.

iv had back and hip pain since i was young i cant even pin point when it started i just feel like iv bin in pain all my life. when i was pregnant i ended up in a wheelchair with the last one, felt like all my lower joints were literally falling apart, they said severe spd and i was on bed rest i was kept in hosp the last two months, i went severely aneamic and was needing blood transfusions over and over.

then about 8 weeks ago i got a virus they said it started attacking my heart and joints as i got myocarditis from it (seems to have eased) and joint pain with mild inflammation not a red swelling but i cudnt move the joints not due to the pain levels but they just wouldnt move. int he last week iv got my joint movement back but the pain levels are the same i only get through due to the pain killers. my dr has me on naproxen. and the rhuematologist prescribed amatripteline yesterday as my long term pain management programme and discharged me, me and my bf req xrays of my lower spine which he did to humour me and said well if theres anything there you will hear from us. if not dont worry.

during the xray the woman came over and examined my back for scars as she wouldnt believe i hadnt had surgury on my spine- fusion maybe? i just feel like no one is taking me seriously and because its a pan you cant physically see its like im just moaning constantly, i feel quite alone tbh and im in agony. how long did it take for you to get a diagnosis. after my last pregnancy i was refered to physio as my scilliac muscles are fussed to illiac joints or something like that and they felt the pilates exercises would help with my pain levels and strengthen the muscles around my joints, this stopped in dec when i moved out the area. the rhuematologist wouldnt even look at my spine, wouldnt look at my psoriosis, wouldnt consider this or that as non of it is his area. i felt like shaking him lol.

the back pain alone is awful worse when im sat here resting so atm with painful joints you can imagine my pain levels. if i move about for ten mins or more my joints seize and the pain is terrible, but if i stay sitting then my lower spine is abs agony- iv always had that problem wen sitting and have to readjust my position reg or fidget as other people in the room call it, but i cant sit in the same position for long periods due tot he pain.

my aunty thelma (great aunty) had the same issue with getting a diagnosis as obvs its hard to c until you have fusion, her whole spine however fused within a matter of weeks and she has full spinal fusion now. the rhuematologist refused to do the blood test coz obvs the gene would be there due tot he strong family link.

my aunty follows a alkaline diet and has no problem with her ankolysing spondylitis, am thinking of trying this diet. i am going the drs in an hr for my prescription of ametripteline. and took a 200c of bryonia last night a homeopathic remedy. im just hoping il get some reflief. i cant even carry the baby. and starting to feel really overwhelmed by it all now. am self emp so need to get back to work asap.

i dont even know what iv got which is worse. but my family are adament its this as iv got the same pattern of symptoms as all my relatives am jus scared its going to be missed and il end up like aunt thelma xx

1 like, 12 replies

Report / Delete

12 Replies

  • Posted

    just been back my drs to process the ametripteline prescription from rhuematologist. Saw another dr yet again- never the same person- he also feels it is Ankolysing Spondylitis despite the rhuematologist saying women cannot get it (i can name how many in my family with it on one hand). he is writing off to recieve the xrays himself and will see what treatment will then be best. in the meantime i am to stick with the naproxen ametripteline co-codomol and omeprazole. lets hope the ametripteline makes a diff as the pain related insomnia is driving me insane. i need tog et back to work also i feel like my life is falling down around me, i cant even carry the baby up to bed. iv only been with my current partner for 8 months and its just a ton of pressure on him, luckily he is really understanding and supportive and it prob helps that he sees most of my aunts and cousins leading a normal life now they are on tnf blockers and an alkaline diet. i hope its not ankolysing spondylitis i really do, but it does seem more likely.

    my gp went through my notes before and in 2010 a specialist confirmed that my scilliac ligaments and muscles are fused to my illiac joints and said i needed life long pain management and pilates based physio, i didnt actually know they had confirmed fusion i just knew they had briefly mentioned it on the qt without actually informing me what was what.

    has anyone else had similar problems as me and difficulty in getting a diagnosis?

    liz xx

    Report / Delete Reply
  • Posted

    Hi Liz, I was diagnosed in 2005 but had a number of tests done about 8 years prior to which they said it was just back pain, I said that my sister has Spondylosis (spelling not great sorry) to which they said oh there is a rare form of that but it is unlikely and then got diagnosed in 2005 with the A.S by then it had fused the left and right sac joint and the onset of it in the upper spine. I was told it was very rare for a woman to have it and that was the reason they had not picked up on it as quickly. I got my diagnosis through the HLAB27 factor, x-ray's and scan. So can totally empathise with you as to getting a straight answer, years of suffering and thinking it was all in my head.... I was also diagnosed with Crohn's Colitis in 2009 so been on nearly every med for both these conditions. Now they are telling me there is only one other drug for the A.S which has been taken off the NICE list Infliximab so no further treatment for the A.S. On med's for the Crohn's Colitis but seem to be half the woman I use to be lol. Half the battle is getting a diagnosis and the other half is finding a suitable medication to treat the condition.... All I can say is keep at them and as I was told by my GI Consultant we know our body, better than anyone else ...

    It hurts all over!!! x

    Report / Delete Reply
  • Posted

    Thanks so much for sharing. Just a waiting game really i now hv uvietis on top of it all sobs. Nt gud. Goin in 2mo morn for more tests. Its such a pain tbh. X

    Report / Delete Reply
  • Posted

    Liz, Don't mean to sound negative but if you have uvietis that is linked to Chrohn's disease. I noticed you are on Naproxin this pain killer is not very good on the stomach have you been experiencing any stomach problems on top of all that you are going through? As far as I am aware you can test inflammation levels in your bloods through CRP, ESR and PV, I'm assuming your G.P is checking this regular? They can gage how active the disease/condition is by these tests....

    Let us know how you get on and my thoughts are with you x x x

    Report / Delete Reply
  • Posted

    Uveitis as well. I'm so sorry for you, its pure agony.

    Have you found the site

    k i c k a s dot o r g ?

    Many autoimmune diseases are associated with uveitis.( e.g. I had many many episodes of shockingly painful anterior uveitis before my coeliac issue was uncovered. Since then not one )

    Report / Delete Reply
  • Posted

    im under treatment, they now think iv had a TIA. the joys. had a vascular scan done yest, and i am having a

    us dopplar Carotid? scan on weds. seeing the AMU and a Rhuemy on thurs.

    I went the eye hosp yesterday for the flueroscin test, dye in the veins. they took images and videos of the back of my eye, and blood vessels are leaking and literally exploding on it. when coupled with my other symptoms this appears like a TIA.

    They ref me straight away to the AMU (Acute Medical Unit) they did a scan there and then, started me on 50mg predisiline? cnt sp it ha steroids, 300mg Asprin and to continue with my other meds.

    the optitian also did a conference call with every specialist that has seen me in some hope to join all the dots- cardio, neuro, rhuemy and infec disease specialist, as they had all been viewing me as seperate and not as an overall picture. he did blood tests inc the Ankolysing Spondylititis test and diff tests that can reveal bechets when coupled with each other and a few for lupus etc.

    the head consultant at the royal for rhuemy on AMU is dr kennedy he asked about my ulcers etc etc and reviewed all my other information and symptoms before prescribing the above and he has fitted me in this thurs.

    the Rhuematologist here also did a series of blood tests to review things a paint a picture as a whole. all in all i think it was four seperate needles to draw blood n one to put in dye. was quite a traumatic day for a needle phobic. esp since the fluerosin test involved fitting a lens to the eyeball itself. vile!

    thanks so much for all your replies and advice.

    I was told when i was 18 i was borderline Coeliac as well. i cut out wheat two weeks ago and diary for two weeks and was moving better i was unsure if this was down to the diclofenic they swapped me to from Naproxen.

    having a bad day today though in absolute agony all over, feel drained, emotional and fatigued. feel like its all coming on me again. sobs.

    xx

    yes im a member on kikas rex

    Report / Delete Reply
  • Posted

    I am at my wits end. Im not saying I have Anylosing but I think it's a possibility. I 1st started getting problems with my lower back when I was 24 (I am now 29). I was told for 3 years I had sciatica. When I became pregnant in 2008 my back pain worsened to which I was told by pyshio to come back once my child was born as they don't like treating pregnant women. My daughter is now 3 and I am in agony every single day.

    I have constant lower back, buttock, groin, neck pain with pins and needles and cold water sensations everywhere. I have tried cortisone injections in my facet joints which didn't work at all. I got injections in my left hip joint and pubic bone which worked for 3 weeks then it all came back. A year and a half ago I got an xray which showed my sacroiliac joints were abnormally white to which my doc sent me for an MRI. The MRI showed no significant inflammation so he's kinda ignored me ever since.

    I don't sleep well. I get 3-4 hours of solid sleep every night but then toss and turn until it's time to get up or I have to get up with the pain. I struggle to do house work and look after my daughter properly and need help. The thing is the docs say they can't find anything wrong but yet refuse to scan me again. They also say it's in my head and I am getting so frustrated I am starting to doubt my own sanity! If any of this sounds familiar or if anyone has any advise for me I would greatly appreciate it. Thank you in advance x

    Report / Delete Reply
  • Posted

    Hi Hazel, it sounds very likely sorry to say and totally hear you when you say they think it is all in your head! I too spent many years in what I call limbo, knowing things weren't right but getting them to do something about it, was another thing... I'm new to this forum but have posted my story of sorts, I would recommend you changing G.P's or ask if they will do a referral for a Rheumatologist. The trouble with this condition is it may not be active all the time but we still suffer the symptoms, by the time you had the scan the inflammation may have gone down but that does not mean we do not have this condition it is what they use as a gage as to how active it is. I would also see if you can have regular bloods done to check the inflammation markers in your blood these are CRP and ESR, also full blood counts getting them to check B12 as well as this seems to play a factor for us to.... Don't give up and I know how hard that is when everything is against you but as I was told by my GI Consultant I know my body best and said to him if that was the case lets cut out the middle man and give me your prescription pad lol

    All the best Katherine x

    Report / Delete Reply
  • Posted

    Hi Katherine. Thank you so much for replying to me. It's means so much. I went to see a rhuematologist in August who said there was nothing wrong with me. I had kept a diary of everything I felt etc for nearly 4 months which she never even looked at. She said she wasn't interested. She said I had a good range of movement apart from my left hip so there's nothing wrong. I was feeling pretty good that day too ....typical. It's just so frustrating and tiring. The only pain meds that work make me sleep which I can't do as I have a 3 year old and I work.

    Where old I read your story? I would like to hear what you've been through if that's ok?

    Thanks again for replying to me xx

    Report / Delete Reply
  • Posted

    Hi Hazel, I've posted it under A.S my story by It hurts all over!!! Thought the name was appropriate considering lol x If you have any questions please post I'm more than happy to share what has happened and what I have tried.... by the way that goes for anyone else in the same boat.

    Katherine x

    Report / Delete Reply
  • Posted

    I was diagnosed with AS in 2011 after suffering with it for over 40 years. I saw a rheumatologist in 1980 who thought I might have it even though I was HLA neg. My X rays showed SI inflammation. I was given sulphsalazine. In 1997 I moved and had to change Drs, BIG MISTAKE. The new Drs seemed to decide the diagnosis was actually neuropathic pain. I was in so much pain I was seen by the Pain Clinic and started on morphine; after a few years this progressed to fentanyl with oral morphine. My Dr began to believe I was neurotic and an attention seeker, I was always in so much pain and sleepy. In 2009 I was diagnosed with chronic fatigue and 2 months later was sent to see a rheumatologist, ( the first time for 20 years), but it was to see if I had scleraderma. The AS was not thought about. I saw this rheumy just 2 months after the diagnosis of chronic fatigue. He did a cursery exaqmination of my back, saw the blood results taken by my GP (ANA 160) dismissed them and declared I had "no evidence of inflammatory arthritis". From then on I was treated like a time waster. (The diagnosis of chronic fatigue was wrong. My Dr simply forgot that opiates make you sleepy!) The pain increased and my GP increased my fentanyl to 100mcgs (over the phone too) within a week I had difficulty breathing chest pain and severe dizziness, a Dr very reluctantly visited and declared it was a panic attack. I was left in that state for 10 weeks until a relative visited a diagnosed fentanyl toxicity. I reduced the dose over the next 2 months, woke up, ( awful withdrawal) and begged for a referral to a rheumatologist; I was refused so had to pay privately. It was then that I was diagnosed with ankylosing spondylitis, but so late that the years I spent bedridden due to opiates had meant my spine was fused. A lack of movement when you have AS is not good. It has taken so long. I start anti tnf tomorrow. I could tell you so much more! I was used as a joke by one pain clinic consultant telling me about a magical cure for my pain, laser therapy. He told me to go home and look it up, it was "the way forward for me". It was actually a 40 yr old therapy discontinued 20 yrs ago cos it didnt work! I was so upset. The medical profession need to wake up to AS. It is poorly recognised under diagnosed. This is unacceptable. Push for a diagnosis, use the internet to research symptoms, use the forums, AND SHOUT. Good luck.
    Report / Delete Reply
  • Posted

    Bovey, was appalled to hear how you have been treated but it seems to be the way for this condition just because we can't see it doesn't mean it doesn't exist and can totally relate to feeling like a joke to the medical professionals (if you can call them that) some of the rubbish they have come out with well I wonder if they got their degrees off of cereal boxes lol. There seems to be no empathy or a lack of understanding as to what this condition can do to us not just physically but mentally to and it grates the hell out of me and not to mention the complications and med's we have to endure!!!

    Wish you all the best...

    Katherine x

    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