Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie- general advise please

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

i just feel like crying tbh.

what gets me more is that the rhuematologist wouldnt even examine me properly, wudnt touch my back. said women cant get AS and that it is just a pain mimiking the symptoms of as that i could have for decades, months or weeks and pain management was the way to go. when i asked him to humour me and test for it he refused to do the blood test as with such a huge family history the marker will be there... and then practiaclly stated all my female relatives drs/rhuematologists had been mistaken as they couldnt have it or i must have misheard them! so now im a lier to. he eventually relented and ordered the xray but i doubt he will even look at it tbh. i just feel so disheartened. just sitting here waiting for xray results that cud take up to 2 weeks to get!

life!

Hi Lizzy, and welcome to KA. I`m so sorry you`re in such a bad way with pain and doctors. You are not alone with this, but you are the second woman to post today with the same issue. Please go to the discussion called `Rheumatologist Appt but Feeling Sad!!` because I posted some serious links about women getting AS, all from very reputable rheumatologists and other sources. They`re from the UK because the woman who posted that discussion is from the UK. You don`t say where you live, but someone here might also be from where you are and be able to help you find a competent rheumatologist. I`m really glad to hear other doctors in your life are more open-minded.

It sure sounds like AS to me, by the way ... especially given your family history (jeepers creepers, so many women in one family having AS!!) and the fact that you feel worse if you sit for a while. Other things rang a bell with me, too. I`m no doctor, not by a long shot. Just a relatively knowledgeable patient ... who happens to be a woman ... who hates hearing, twice in one day, that the `women don`t get AS` fallacy is still out there. Dear god, give me patience.

I hope some of the links I`ve posted in the other discussion are helpful to you. You aren`t alone anymore. Also, several folk here are parents and might be able to help you find ways to look after your baby. At least, they`ll have understanding of what you are experiencing and I know that can help an awful lot.

Warm hugs,

OMG so sorry to hear you are getting the run arround. I am 32 and have had issues since I was a child but the back really started up arround 20. I was diagnosed with severe SPD also. Just like you I was hospitalised and then induced early due to the pain. They did an epidural to help with the birth and they tried 4 different spots before they found a space in my spine to be able to get it through. So very similar onset.

I just want to slap your rheumy. Far out with your family history alone you should be getting tested. Then add your actualy clinical problems. Is this rheumy 200yrs old or something.

You seem to have a good GP so I would try and see if they can reffer you to a different rheumy. Not sure where you are from but we have members from all over the world so one of us would likely be able to give you a heads up on a good rheumy in your area.

All the very best.
Trish

I am so sorry that you are in so much pain. It sounds to me like AS. I really hope you will see a different Rheumatologist. Please read Inanna's links.

I am glad you came to the website. There are a LOT of women here with AS. The rheumatologist that you saw is so wrong.

I really hope you get some relief. Come back often.

Blessings.
Possi

Oh my goodness Liz, this is horrible. I can't believe what you have had to go through. FIRE ALL YOUR DOCs!!!!!!!!!!!!!!!
Start over. Write a book of your family history and all your test results, get out there and find a real group of docs. This is plain as the nose on your face and what you have gone through is a crime my dear.

By the way, welcome to kickas. I hope you will stay with us.

Cindy

OMG - I am in shock!!! Totally let down by the medical profession and that is with diagnosed cases of AS in the female side of your family. Absolutely unbelievable and I am so sorry for you.

Where do you live Liz?

I hope now you have found a good GP that you will finally move forward with your diagnosis.

X

HI all thankyou very much for your supportive comments.

I will read them links thanks so much for the heads up.

Im in absolute agony all the time but slept last night for the first time in what must be about 2 months, only just got up at like 11.30 am. not like me at all.

I live in liverpool.

I think more of the problem is that I see a different dr every time I go, there are like 9 drs in the practise and you just get put with whichever one has the next appt available. about three of them agree and think it is AS.

Iv written a diary i took that the rhuematologist with me. had my whole family history in it. my past medical history and previous tests id had done. previous results from orthopedics and physiotherapists. id even kept a pain diary from the last 8 weeks so he knew how it had moved around my joints and had noted how the back pain was worse when resting etc etc. he wouldnt read it. didnt want to know. didnt even ask my medical history or anything. just wasnt interested.

he looked at my joints saw they were swollen but the swelling wasnt red and said it wasnt his department, prescribed me ametripteline, i said arnt you even going to examine me so he said to get on the bed looked at me knees and ankles and said yes swollen but not red, not my dept. i said my own dr wrote to you he thinks its AS i have a strong family link. he said Women cant get it, i said about 7 alone in my family have it and my granddad. he said they will have been misdiagnosed and just have spondilarthritis (cnt sp it. I said four of them are part of the AS study and go to all the conferences have dna samples taken etc etc. he looked at me. i quickly reeled off as many symptoms as i could in one breath before he interupted and said yes yes you have all the symptoms and if you were a man i would treat you for it lets just get you on some longterm pain relief that your gp can maintain could be decades, months or weeks but as long as its manageable you can go back to work. i just wanted to cry.

my bf was fuming, he asked him to do the xray anyway and i said just for peace of mind. it took a while but we talked him into it. so he sent me for the xray. its not even bin looked at yet 3 days on. typical init.

my dr is waiting for the xray results and will then go from there. its just a nightmare that its so hard to get a diagnosis and proper treatment for. and i look at aunty thelma and im panicking inside, she was missed for so long coz of a crappy rhuematologist.

im hoping your links will help

thanks so much ladies

xx

Hi Lizzy,

Darling - these are for you:

As you will notice, NONE of us here are wimmen!

This is for your rheumatologist: (sorry - couldn't find a "Head slapping" icon - must speak to admin about that! )

And for the NHS for employing such dinosaurs who OBVIOUSLY do not keep their clinical knowledge up to date: