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 have 25p left in the bank till i can get back to work, n yet im in agony if i so much as move more than ten mins.
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, she literally has a brace holding her head up in place.
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
