Kickas.org Forums Ankylosing Spondylitis General Discussion Helpful Tips Still in the testing phase

Rheums are not always the best doctor to diagnose Ehlers Danlos...it was actually my geneticist who diagnosed me when my rheumatologist kept dismissing the hypermobility as "just an anomaly". It's all very annoying, and I've just about had it with my rheumy...I have my last appt. with her tomorrow morning, then it's on to the adult rheums.

Nikki

I don't think we have an AS group here. It isn't that big of a city. I think about 80,000. The other problem is that I think there are only 3 Rheumatologist in Kamloops and I haven't heard very good things about one of them and I don't know about the 3rd. My GP seems to like this Rheumy so I don't know. I think I just have to push for the MRI and go from there. I am starting a program with a personal trainer tomorrow to work on core strengthening exercises, and the gym where I go just started a pilates class. My rheumy seems to think that my problem is muscular in nature and not actually AS but, I'm not so sure. I have a lot of the symtoms that other people on this site have. IBS, morning stiffness/all day soreness, etc etc. so I don't know. I am going to do what I can to get the right muscles doing their jobs and see where the pain levels go. I am following up with the rheumy in 3 months. I am also going to see my GP next week to talk to her about all of this BS. I don't know if you read my other post in the #1 AS support section, but I talked about my test results and appointment frustration there.
It is interesting about ED, I'll have to do some reading on it and ask her about it also.

From what I've read, muscle spasms are all a part of the AS package. :\

For definetly you will find everything you need about your back at this forum.

Sleeping problems, some years ago I loved to sleep on my belly, since my neck has gone bad I can not sleep like that any more cause I cant move my neck, hen I got used to sleep on my side, now because of the shoulders(same thing like yours), went to back.................
guess after few years from now I will sleep on my head

It is really common to have some other joints in trouble because of AS, it is really individual

sanela

Thanks Sanela, I have been thinking the same thing that I too would have to sleep either standing up or on my head. I start out on my side but most of the night is spent on my back. I am going to my GP this week to talk to her about my meds because I dont' think they are doing as good a job as they should.
Good luck getting some sleep
Jill

Jill, how's your exercise program going? Have you noticed any changes yet?

3 years before being Dx'd with AS, long before I ever heard of it, I really hit the wall with pain, esp. while trying to sleep. I'd barely be asleep before I would wake up panting for breath due to the knives down both sides of my ribcage. I would describe my pain as 10 out of 10 on the pain scale. I'd cautiously and gingerly roll out of bed, moaning and groaning the whole while, sometimes begging my hubby to walk me to the bathroom so I could "go" if'n ya know what I mean, because sometimes I could not bear any weight on whichever hip was being attacked, and then I'd take my fave drug cocktail-toradol and flexeril. If I was lucky, I'd knock off around 2AM, only to have my alarm go off at 5:30, so I could leave for work an hour later. I was a living zombie due to the meds, but they helped me fall asleep. In the bed, I had a heating pad on top of a flat pillow, which I would put under my thoracic spine and neck, I used a pillow under the knees (still do), but when I managed to crawl into bed, I would land on my side on the very edge (of our king-sized bed), because I could not move due to pain. Since we've gotten our Tempurpaedic mattress, I've given up the heating pad (can't use with the mattress).

AS is one miserable disease, but you know, I never told my doc about my night-time nightmare. We already knew about a Dx of mild arthrosis of the lumbar from a CT scan in 2000.

I realized that no chiropractor, physio-therapist or massage therapist could help me-they tried and I still suffered. I thought back to the days I worked out at the Canadian Back Institute, and remembered how good I felt at the time (I only stopped due to $ reasons-the car insurance Co stopped paying). So I thought that I would try exercise, as much as the thought pained me, because I knew how much I was going to suffer. I joined a gym (strength training, core exercise with pilates). After about 6 months and countless spasms later (and my fave cocktail to get me through), something miraculous began to happen. I didn't need the drugs as often, sleep was coming along better, and although I still suffered with spasms in the back of the ribcage area, I started to improve. Finally came off the meds altogether. Just from exercise, plus some advil when my hips would flare. It was a year later when the dreaded iritis began to manifest, that got the ball rolling on my AS Dx by April 2005.

I really credit exercise with saving my life-who knows what mush I was turning my innards into with the meds (I had 2 different doctors prescribing them)? I'm on N-SAIDs now for the low back pain I deal with on a daily basis, but I rarely ever have the ribcage pain anymore, and I credit the exercise with that, that, and I believe I've got a mild case, since I still haven't fused in the 14-15 years since the sciatic symptoms first manifested (although I do have sacroiliitis).

I can't sing the praises of exercise louder... it really helped me, as much as the LSD/NSD helps others on this site.

Thanks Sigrid. The exercise program is getting there. But if I over do it my sciatic nerve gets very unhappy. My Dr. put me on Lyrica and while that has helped with the sciatica it is not helping the numbness I have on my left shoulder blade. I have only been on it for 10 days so maybe it'll get there but at this point I'm not holding out too much hope.

Blessings to you too on this beautiful day.
Jill

Oh, don't give up hope-these things really can ease up. I've had a lot of spasms below my shoulder blades, even in my deltoid muscle below my shoulder, usually induced by too vigorous a workout (although it didn't seem so at the time... gotta learn to pace yourself and ease up to the next level-it takes longer with us). Once it took what seemed like 4 months before my right shoulder could lift that 3 lb weight again (front and side raises-I promoted myself to 5 and 8lbs too quickly-3 seemed too easy after 2 years). But it eventually got better-it really did. So I've decided to stick with that 3 pounder, no matter how easy it seems-sometimes I'll increase the reps.

I know how awful shoulder pain can be-I've suffered with it too. Best to let things take their course.

I can also relate to the sciatic problem. We have 2 cardio machines at the gym-elliptical (oval motion) and cross-trainer (circular motion). Seemed I would always get off the elliptical limping, so the gym owner suggested I try the other-which I've stuck with. I'm pretty stubborn, so on occasion I've gotten on while sciatic flaring, only to dismount feeling better, and sometimes I've gotten on fine, and gotten off limping. It's really unpredictable. If I'm in a nasty flare, I skip the gym altogether.

BTW, for your shoulder, have you tried calcium and magnesium supplementation? If I do spasm these days, I will take my flexeril and deal with the drowsiness...