Ankylosing Spondolitis.

saffiedale_2

Just Thought I Would Start Up This New Thread For All Us Ankylosing Sufferers Out There. Be Great To Hear How It Affects Different People And Their Day To Day Lives. After Joining The Fibro Thread And Have Had So Much Support I Thought It Would Be Good To Get Another Little Group To Help Support A.s. Sufferers. As Today I Carnt Even Turn My Head.and Cannot Apear To Get Much Air Into My Lungs At Times When I Have Been Asleep?my Ribs Hurt? And The Pain In My Sacriolac Is Unreal. So Please Feel Free To Join.

wilf55

can i join my other half has it in his neck and its getting progressively worse i was interested to read that sometimes you cant seem to get air into your lungs thats how he seems to feel its as if he cant get a deep enough breath

saffiedale_2

thanks for you reply. did he say it wakes him when asleep?:rolleyes: is he on enbrel or anything? still waiting to hear if goverment guna fund it?:eek: please tell me how it affects him ect, how long he as had it?thanks for joining.

wilf55

it does wake him when he is asleep gp has just sent him for a chest xray and which came back clear and also to the airways clinic but he is waiting appt for that sorry for the delay in replying he doesnt take anything other than bricanol inhaler which he says doesnt work

matelot123

Hi all I have ben diagnosed with this since I was 24 and I'm 41 now. I tried Enbrel and though it worked for me really well unfortunately it had a side effect which was that it effectively blocked my kidneys so I had to come off it after three months.Then my consultant decided to try Humira which I have just started and I'm not sure how it is panning out..certainly doesn't feel as effective as Enbrel did but it is early days yet. I think you have a better chance of trying these new medicines out if you ive in Scotland like I do so I am lucky in that respect

saffiedale_2

im still waiting to hear about enbrel? they say they have meetings every month but they need pushing. how long did it take? do yo feel constantly ill?i know i have fibro too but my neck is so bad down my arm ect my head hurts so much,:eek: im sick of feeling like this. maybe two good days, then 5 bad ones.:mad: i keep hoping enbrel is goingto give me a new lease of life.:rotfl: :rotfl: :rotfl: there dont apear to be many of us about?:rolleyes: hope you 2 arnt having to bad a day?:j

angelcakes_3

Hi, thought I would sunscribe to this thread as my oh has been suffering with a yet undiagnosed suspecyed AS condition. (After 12 years). He has been for x rays, bones scans, blood tests, physio. Has been on anti inflamatorys and pain killers for 12 years. It started with stiffness in his lower back in the mornings then proggresed into pain in his hips and knees spesh on left side shoulders and neck. Its also causing a pronounced curviture of his spine which is leading to severe neck pain extending into the base of his skull. Sometimes at night he will wake in pain and have to take pain killers during the night. Another side affect of the curviture is sometimes he finds it hard to swallow as his head is pushed forward and he also suffers from chest pain and finds sneezing absolute agony. He's currently waiting for yet another muscula skeletal assesement and was wondering if his symptoms are typical of those sufferd with AS?

matelot123

Angelcakes, the symptoms you describe certainly sound like the symptoms of AS but obviously I don't know for sure. Having had so many tests done I wonder why they haven't been able to be more forthcoming with a definite diagnosis, as an x-ray and a blood test were pretty much all I had to confirm things after a discussion with a specialist.
If I were your husband I would be insisting that after so long they crap or get off the potty.12 years is a long time to be thinking about what might be causing someone to be in so much discomfort and distress.I wish you and your husband well and hope he gets a definite answer soon..it can make a lot of difference knowing why you fel the way you do and I speak from experience in that regard!
Just out of curiosity how many AS sufferers here have claimed for DLA and have you been successful?

saffiedale_2

:j :j :j hi there i it just how i feel:mad: my neck and head very much, gives me a bad headache too.:eek: i wake in the night in pain cuz im so stiff and hurt so much. when i saw specialist he said ther was no way i had as.cuz women dont get it? rubbish. they did blood test sand xrays, six weeks later a letter with a booklet dropped through my door. LIVING WITH ANKYLOSING SPONDOLITIS.:eek: well nothing had changed cuz id still got arhtritis in spine and other joints, cervical spondolitis, and fibromyelgia.:rolleyes: i get the hip pain, ankle and wrist pain too. i had to go to be measured for enbrel last month and they did say i only have 50 percent of a normal lung expansion:eek: not that id noticed. but i must say it scares me when i wake up and im not breathing properly. will mention that whaen i see the a.s. doc next month. as you asked about dla and a.s. i will find something out that i kept that was important to that. pm me your phone number and i will call you about it. yesterday id been so ill and in pain i did not get out of bed.then the fibro kicked in.:eek: can i ask any of you if you know your guna have a flare up? i do. i have strange dreams. the pain is awful so i get up, but my body is saying get back to bed now.... is it because its in the blood? just wish i coul get pain meds right.:mad: :mad:

matelot123

I never know if I'm going to get a flare up I just wake during the night anyway and it feels more uncomfortable and painful than usual lol.Im shocked that you weren't even told of your diagnosis face to face in fact I think the way you were told is appaling.I was still serving in the Royal Navy when I was told (although not for much longer after that diagnosis lol) so I was seen at Royal Naval Hospital Haslar and the Surgeon Commander I saw there was brilliant.He even outlined the prognosis worst and best case scenarios and sent information on to my divisional officer a I was still serving onboard a ship which was causing problems as there were only two of us in my department.
How did people first come to notice they had a problem?I just realised one day that I could not bend down far enough to tie up my boots and had to ask mates to attend fire exercises for me as I couldnt get my boots on fast enough.When I sat back and considered it I realised I had been compensating for years and now I see I must have been suffering with it before I joined up yet still managed to do 11 years service including a war lol :rotfl:

saffiedale_2

dead strange cuz i remember when i was 22 just before i had my boy.:o well i used to get this real bad back at the time of the month.:eek: but id crawl on all fours and the pain was unreal.:mad: but like you i used get my hubby to put boots ect on. to be honest im a bit fat. lol:rotfl: :rotfl: and blaimed it on that? then i couldnt bend my head to far ect. it is awful that you realy carnt sleep.:mad: and you have to get up to get your stiff body going.some days i dont realy want to wake cuz im so tired.:eek: when i went to see my own gp after the dreaded letter. he said, HOW DID YOUR FAMILY TAKE IT? i felt like id been handed a death sentense.:eek: :eek: i was no different that day than before, just knowing what was wrong was a great help.