PA in spine

May 24, 2003

I forgot to ask if Sacroiliitis is the same thing as Ankylosing Spondylitis? I

was diagnosed with sacroiliitis but I don't think I have the HLA-B27 marker.

I have so many more trigger points popping up, particularly in the lumbar

region. I probably have 5 or 6 of them. My doc won't give me an explanation

for why I get them. Both docs say I really need to be in PT but I am afraid to

go right now because of the situation with my husband. Is there anything I can

do to make them go away (besides more steroid injections)? Also, any tips for

bursitis in the hips? It is very painful.

Thanks,

May 25, 2003

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>

> I have so many more trigger points popping up, particularly in the

lumbar region. I probably have 5 or 6 of them. My doc won't give me

an explanation for why I get them

Hi ,

In my experience when the PA flares in the lumbar region the fibro

does too. No doctor has ever confirmed this to me..just what I

notice. Try heat, like the microwave packs, on the trigger points

and as awful as it sounds try ice if the heat doesn't work. Of

course massage is expensive but can help. Try massaging the trigger

points on your own as best you can. Press in on it (really hurts)

for a minute or as long as you can stand it. Don't press too hard.

All the Docs around here stress excercise for fibro..but when my

fibro is really flared I have to be careful to do a very small amount

of exercise or it backfires...maybe people are different this way .

I am new to the net so I don't know a lot of sites yet. A good book

you could check out of the library or local arthritis foundation is.

Fibromyalgia and Chronic Myofascial Syndrome A survival Manual by

Ellen Copeland, M.S.,M.A. and Devin Starlanyl,M.D. Both of

the authors have fibro so they know where we are coming from.

Janet had a good idea about trying for disability..If you do

definitely put PA first, then include other stuff like

fibro,sinuses,etc.

Hope things keep improving for you. Hang in there!

Marti

May 31, 2003

Marti,

I've tried heat and ice on the trigger points and it doesn't help very much. I

also use lidocaine patches there. I think I might try getting a massage next

week. I used to go to a massage school and they only charge 25 bucks for an

hour. Maybe they can work out some of the knots. I'm just afraid it might hurt

more since they are very sensitive. I am going to start PT too. my doc said

the TENS unit is supposed to be good for them.

My rheumy said exercise is important too but since I am in too much pain right

now and flaring I should wait. Funny he would say that yet insists that I need

an MRI to " determine if my PA is active " before he sends me to the pain clinic.

What kind of exercise do you do?

I'll buy that book. It's easier to take advice from people who have the disease

and know exactly where you are coming from. Do you mind me asking how old you

were when you applied for disability? I think between the PA, Fibro,

narcolepsy, bursitis, and sinus stuff they might actually approve me.

take care,

-

June 1, 2003

Hi ,

Sorry your trigger points are causing so much trouble. Ask the

massage therapist if they are familiar with fibro, they probably are

and explain you need them to go lightly on you because you are in so

much pain. I had a massage once that hurt and seemed like a waste

but by golly those lumps were better and I actually stood up

straighter after it.

I was age 34 when I applied for SSDI. I probably should have done it

sooner because work was agony and making my health worse. I agree

that if you have multiple illnesses it might be easier for you to get

it. Have your wonderful GP help you and include everything on the

forms. Fibro is controversial for disability by itself so I always

list it second or third. PA has standard guidelines they go by, Are

hands so bad you can't type, etc,etc and narcolepsy sounds serious to

me=how can you work if you can't stay awake? Anyway, a lot of it

boils down to having a Doc who supports you and has experience

filling out the forms. Certain buzzwords.....unable yo work in any

capacity,etc.

Good Luck!

Marti

June 6, 2003

Marti,

Whew, I'm behind in my messages!

I go next week for a massage. I am REALLY looking forward to it. I'll ask the

girl to try to work out my trigger points. Would that be a deep tissue massage?

They do those, relaxation, and the hot stone massages. Do you have a hard time

standing/sitting straight too? I am always in a hunched position. My neck and

shoulders seem to be drawn forward and my back is always curved forward too. I

try to sit/stand straight but that makes me hurt more. Guess I need to

strengthen those muscles!

I guess I am in the same situation you were in re: SSDI. I keep putting it off

even though working is making me worse. I am going to tough it out until I get

the nerve block. If that doesn't help then I will go ahead and apply.-

The narcolepsy is okay if I take the meds at night to sleep and get at least 9

hrs of sleep. It also helps that I work in the afternoon. If I had to be at

work at 9am I would probably be in trouble. I had 2 instances lately where I

felt like nodding off so I drank lots of coffee. I have provigil to keep me up

if I need it but I hate the way it makes me feel so I never take it. When I was

working full time the narcolepsy really hit me hard. Since I am only working 4

hrs. it seems to be doing okay so far.

take care,

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