Ankylosing Spondylitis questions - Arthritis Message Board

candibar · 07-21-2005, 12:37 AM

Hi.

How does a person with AS know if he/she should throw in the towel and apply for disability or keep dragging a miserable, drugged body to work? Can a person survive on disability? The only thing getting me out of bed is fear of being totally destitute.

Has anyone with AS had a flare in the neck, shoulder and upper rib cage? When I bend forward, it feels like someone trying to rip my head off my neck. The pain is excruciating. My Rheumy just tells me to keep taking the MTX, that it takes time for it to kick in. This bout started 3 days ago. The weird thing I don't get is that this disease seems to travel. My hips are pretty fine, but before the neck and shoulder flare, my hips were severely flared.

Any advice/experience would be appreciated.

~ Candibar

countrygal · 07-21-2005, 12:53 PM

I hear what you are saying! It seems like it attacks certain parts of the body for a while and just when you seem to find relief here it comes again some where else. And even times, all over.

I take mxt also, inj.wkly and have since april 14th. But i have found NO relief at all from it. I am so ready to try something else. I took plaquenil before that and had really good results AS wise but lost vision in my R eye. Some has come back. And we are waiting on the rest of it. How long have you been on it and how much? have you had any luck with it at all?

As far as the SSD thing, have you talked to your Dr about it and how he feels? Do you have any other Dxs? It has been a long drug out battle for alot of poeple trying to get it. I dont know if AS is listed on the Dxs required. Have went to the ssd site to see or talked to SS?

Sorry i couldnt be much help. And that i seemed to have asked you more ?s than i could answer. I havent met many with AS to be able to discuss and talk about all that goes on. Hope someone else can help answer the ssd ?s.

candibar · 07-21-2005, 10:27 PM

Thanks. I am taking 15 mg mtx wkly. What are you injecting? Enbrel? I have not contacted SS or SSD; I'm still thinking. I have been in complete menopause for years. The mtx caused me to have a complete cycle, which was weird (per my Rheumy). I wish there was a cure for this. I keep wondering why folks in other countries don't have this. Is it our food supply?

countrygal · 07-22-2005, 09:53 AM

Hi candibar, I take Mxt .5 inj wkly and of course folic acid. I have been checking on the enbrel and humara. It all has nasty side effects, but so does the AS. I think i am leaning toward the enbrel. I had a hysterectomy years ago (i was still a pup)lol. But i can see how mxt can cause any kind of problems.
It takes along time to get ssd started for most, so you might want to start that. Even if at a later time you wont need it now. But if you do then it will already be started.
A good ?, i havent thought about that. But i did wonder why i got it when it supposingly a male disease.
How long have you had this and did it take along time for you to get Dxd? Do you have other related problems too?

candibar · 07-23-2005, 12:21 AM

It took about 5 yrs to get dxd. I started having symptoms @ 18 yrs - many moons ago - but no one believed me. I got a big clue when a coworker broke his hip crossing an icy street, recovered and quit taking pain meds. I wondered why I couldn't go a day w/o pain meds. Now I know of course. I got my 1st cortisone shot @ age 19 I think. I was working out in a health spa and overdid the leg presses. I had to quit working out and have fought and lost the weight battle ever since. Now I hurt too much to work out. I have a story: I decided about 18 mos ago before I got real bad like now that I would join the city health club and go for the burn and get this fat off. I went to the orientation and tried out every machine (was that painful!). I then contacted my Rheumy and asked him which machines would be safe for my condition. he told me none of them! Then I asked him about free weights - he nixed that too. I said "What am I supposed to do about these jiggly arms? You can't tighten them w/o weights". He told me I could swim or walk. Unfortunately, I am allergic to chlorine. I was shocked. I had never heard of a dr. telling you that you cannot work out! I still have a membership with YMCA sitting out there waiting for (what?! me to get better?) I don't know what. Hurts to walk, can't take chlorine, can't do machines and weights. Anyhow, that is the least of my worries right now. I have BIG bruises right now I am concerned about. Mtx can cause that. I also feel achy and terrible unless I take ibuprofen. Guess i have rambled on enough. Oh yes, I also have reynauds and irritable bowel. I have also had Iritis. I used to have type II diabetes but got rid of that. My aunt died of crohn's. there is a link between AS and crohn's from what I have seen out there.