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  #51 (permalink)  
Old 07-12-2002, 09:46 AM
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Hello Ladies, Alot of great info on FMS here! Keep it coming!!!

I never had any injections in my trigger points, what do they use? Lidocaine?

I wish I had a great tub like you ladies have...my tub is mini!
I do have a waterpik shower massage and it works great on my stiff neck and shoulder muscles!

This might sound odd but does anyone ever have a sore scalp? Some days the hairbrush just hurts, even a comb.

If I had a magic wand I would wave it to cure all of us!

janet
  #52 (permalink)  
Old 07-12-2002, 11:14 AM
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Hi, everyone. I, too, have been diagnosed with FMS and have a couple of websites I get info from that I don't think have been mentioned yet. One is from ImmuneSupport.com at http://www.immunesupport.com and the other is from the National Fibromyalgia Association at http://fmaware.org Both have archives of previously published information and newsletters for current events and latest news. Another thing that I use is essential oil therapy. I use a combination oil of lavender, sandalwood and marjoram oils called "Sleep Ease" that I get from www.somethinspecial.com and it seems to really help me to relax and get better sleep. There is quite a lot of research being done on FMS and I really hope that all of us will benefit from it very soon. Blessings to all and wishes for sunny days!
  #53 (permalink)  
Old 07-12-2002, 11:26 AM
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CFIDS

I ran a CFIDS support group out of Westchester, New York. I suffered from it myself. Many people in my support group suffered from Fibro as well. I am lucky because i no longer suffer from it. One thing that helped me and some others was a book entitled The Yeast Connection . It can be difficult to follow but I found a difference in a matter of weeks. Everyone is different but it may be worth trying.
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  #54 (permalink)  
Old 07-12-2002, 03:10 PM
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Hi Janet and all other sisters in sickness!!!

I'm a Swedish woman that was diagnosed with fibromyalgia about three years ago after an accident. I have had days of pain from hell but they are getting fewer and fewer...Why? Because I have tried to build a new life, not keep on living the way a strong and healthy person would live. I am sick and I am tired, so I should live a life in a slower pace. These are my changes:

* Since the accident I have lost 33 pounds and still counting. The weight loss has really made a big difference when it comes to pain in the hip and the lower back area.

* I get up in the morning 2 hours before leaving for work. I take it easy , eat breakfast, take a loooooong shower. My body is all warmed upp and working when I get out of the door.

* I try to move every day. In the spring, summer and fall I ride my bike to my job. It takes about 20 minutes. I then walk home with my bike - it takes about 1 hour. Even if I am in pain I try to walk. I don't care if my walking pace is slower than of kids and older people. Hey, I am moving my body . If I don't move I get more aches. In the winter I take the bus to my job and walk home.

* I only work part time. For a while I was home all the time, but that made me sicker. I didn't move that much and I felt the pain all the time because my mind wasn't distracted and preoccupied with other things.


* I try to keep my mind of the pain. I read, surf the net, talk to people and laugh a lot, watch interesting tv-programs - not soap operas - and a lot of funny sit coms. All things that make me happy and help me distract my thoughts. It's like in the summer time when it is hot, when I often read books about people exploring the Arctic and Antarctic. For every page that they are freezing my head gets cooler. *LOL* It works the same with pain - if I laugh a lot or enjoy doing something, then I don't think about my pain as much even if it is there all the time.

* I seldom eat pain killers or other medications now when I lve my life in a slower pace. It's better to do something slow and in several days, then making it fast and be in pains for several days afterwards. I also believe in letting others help me, not just trying to do all things on my own . Many of my friend with fibromyalgia try to keep up a higher pace and they are constantly eating pain killers.

* I try to be young at heart. Enjoy the small things and laugh a lot. :p

/Asa from Sweden
  #55 (permalink)  
Old 07-12-2002, 03:50 PM
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To Janet, and everyone else who posted about Fibromyalgia.
I have Rheumatoid Arthritis,Fibro. for about 10 yrs.and was diagnosed with Sjogrens syndrome about 6 mo. ago. I wanted to say pacing yourself, is very important as is good diet, low impact excercise and keeping your stress level down,as is meditation and prayer. But I wanted to tell you something important I have learned over time, autoimmune diseases tend to cluster, sometimes more than one condition in the same person (is pretty common).
Differing autoimmune conditions can cluster in families I.E. they tend to run in famlies.There are over 80 different autoimmune related diseases. In my own family for instance my grandmother and aunts (5 of them had RA. and all developed polymyalgia in their mid 50's.) My mother had a intra-uterine cystisis for yrs. also. autoimmune. I've got what I've listed above, my 21 yr. old daughter has Unspecified mixed conective-tissue disease and fybromyalgia also and my brother developed Crohn's disease in his 20's. (which he is in his early 40's now and doing well after surgery)All of these are autoimmune diseases. - All different in the same family. I am going to put a plug in for this organization They will send you out great information if you call or write! And what is better they are working on all of these related autoimmune diseases among other things- they have established a national referal service with patient materals.Support research into the cause of autoimmunity;co-sponsored the first international conference on autoimmunity and they are currently initiating legislation that will if passed create an Office of Autoimmune Research at the National Institutes of Health
Hey this is for all of us dealing with this and for our families too. Turn that pain into action... Knowledge is power! To help support
AARDA
Contact:American Autoimmune Related Diseases Association
22100 Gratiot Ave.,East Detroit,MI 48021-2227.
Oh this is also a non-profit org. web site www.aarda.org
ph.no. (586)776-3900

Hope this helps ! pass this info. on to every one you know who can use it. The more support they receive the better others will understand autoimmune diseases. The better the treatments. I'll get down off of my soap box now :p God Bless - Leslie9220
  #56 (permalink)  
Old 07-12-2002, 05:04 PM
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Fibromyalgia

Seven years ago my daughter was born (4th child). During
that pregnancy I had severe back pain and went to doctor
for advice. We discussed whether chiropractic care or physio
therapy might be helpful. 7 years later and 3 moves later
back pain was a minor concern. My arms ache, especially
at the joints, my knees hurt deep in the tissue, my ankles
hurt, the bottoms of my feet hurt, my neck is often stiff
and sore (computer makes it worse). So I went to a new doctor
in my new community. I had been going off and on to
chiropractor for seven years, usually going when desperate
because of the ongoing cost ($15-18/visit). I pestered
my chiropractor for exercises that would help. I complained
of numbness in my arms, tingling in my legs, stiff neck, etc.
The more I sat at my computer or in a chair watching TV the worse
it is. Okay here comes the moral of the story.
I think I've become "sedentary". In other words - my kids
outrun me, and I can't keep up. Pant Pant.
Always active in soccer, skating and running sports as a child,
I gradually became less and less active through High school
where physed was optional in Grade 11 and 12. Working in
an office typing, answering phones, lifting boxes for our moves,
working in a store standing for hours without relief--okay
it's a recipe for disaster. Fibromyalgia not yet diagnosed
at this point, but I hurt.
So, now its:
VIOXX once a day - very helpful - few side effects for me as a I have
strong constitution and have never taken lots of medicine
like that.
Here's an eye opener though - I self admitted to physiotheraphy
and told her my pain was mostly in my arms and back. Upon
evaluation, it turns out everything is out of wack.
So....
now its vioxx and stretching exercises. Leg stretches, neck stretch,
cat stretches, etc, wall walk with arms, shoulder rolls, etc.
Any kind of activity helps me SO LONG AS I DON'T OVERDOE.
Overdoe means 1 hour picking weeds. Then cleaning out the
garage. Then running up and down doing laundry. Then
doing the groceries. Then cooking supper, doing the dishes,
putting the kids to bed. Then going to bed late because
you are in such pain you dread laying down or getting
up in the morning. You get my point.
If you have fibromyalgia activity is absolutely key...
but DO NOT CAUSE PAIN. Even stretches can be painful as
I've discovered. While the "overstretch" can feel good
it is actually harmful. So the education continues.
The stretching is very helpful - so I can suggest you
see a physiotherapist and DO NOT SKIP daily stretching.
Some stretches work best in the shower (neck rolls) and
some gentle exercise (easy swimming, easy skating, WALKING,
even a gentle short game of squash or badminton all
have helped me to cope over the winter.
I am experimenting with this vioxx and exercise and hope
to beat it.
I don't want to "confess" to fibromyalgia, even though
many symptoms are present. Laugh with your kids and
be a little crazy. It'll take your mind off it!
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  #57 (permalink)  
Old 07-12-2002, 05:30 PM
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Exclamation FIBROMYALGIA

Isn't this a terrible thing.

So many doctors I have seen in the past have just poo-pooed my complaints calling me excessive:mad:

My sister has this, too. We are sometimes miserable together.
She gets pains from certain perfumes and some cleaning
products. I get sick from paint, gas fumes etc.

Only 6 months ago would my doctor came right out and said this was my problem. I was almost happy. This said a lot.

I recently purchased 3 books from Barnes & Noble - the titles are
"Fibromyalgia & Chronic Myofascial Pain" by Devin Starlanyl
"The Fibromyalgia Advocate" by Deven Starlanyl (MD)
"The Trigger Point Therapy Workbook by Clair Davies, NCTMB
& there's more books.

I just could not believe how many questions they have answered for me.

I have been dieting and have stopped eating foods with lots of additives just plain hb meat pattie, chicken breast, fresh fruit and veges - no sauces, very little fat, just enough milk to wet my cereal. I eat no bread, pasta - only have sugar in my 1 cup of tea. I have never felt better Just makes me wonder if this might be food allergy related. Prior to this I had so much pain in my body I could not lay, sit or stand I HATE PAIN PILLS!!!

Anyway, I will keep you posted on my weight loss and pain relief.

HOPE ALL OF YOU GET A GOOD NIGHT'S SLEEP - IS SO IMPORTANT.


SHIRALYN
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  #58 (permalink)  
Old 07-12-2002, 05:59 PM
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Kelpie, thanks for all the new websites to check out. It will keep me busy especially when I can't sleep.


noturningback: I am definetly going to check this book out at the library, The Yeast Connection. Anything is worth a try.

asa: you have alot of great ideas for life in general, I do tend to over do when I feel great then pay for it the next day! I will try to pace myself better but it is hard! Especially when it is summer and all I want to do is garden, dig in the dirt, paint and play in the waves! ha ha It is much easier for me in winter, I crochet, sew, read and surf the net...of course the daily shoveling of snow gets to be too much, but it does keep me in the fresh air and it is exercise!ha ha

Leslie9220: I knew that Fms and other diseases were in the same family, or as my Dr says...the same circle and you can go round and round this circle and experience different problems...sometimes when I am on cortisone it really helps to boost me up...but the side effects are wicked! I was told I had connective tissue disease, FMS and I am pre-lupus....(in the gray area and not enough symptons to be sure.) I will check out the aarda.org site....sounds promising.

to everyone!


janet
  #59 (permalink)  
Old 07-12-2002, 06:02 PM
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My physical therapist has just started doing the myofacial massage on my lower back because of a recent injury. It has helped tremendously to relieve the spasms and tightness I have been having. She explained that it breaks up the connective tissue between the skin and the external facia, making the facia more flexible and free-moving beneath the surface of the skin. It definately makes me feel looser and more flexable. I'm sure this would lead to similar results all over my fibro-sore bod...it's just too bad I can't convince her to do an all-over tune up! LOL!

My insurance does not cover massage therapy and Physical therapy at the same time, even if it is for two different diagnoses. It only is covered as a short-term treatment anyway. I'm sure I would want it every other day for the rest of my life.
  #60 (permalink)  
Old 07-13-2002, 07:49 AM
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Hi, Shiralyn...Dr. Starlanyl also has a website at www.sover.net/~devstar and it also has information for patients regarding their other health care professionals (i.e., dentist, neurologist, etc., as well as relatives and companions). She also gives detailed information about medications usually prescribed for FMS and myofacial pain conditions. She herself has FMS/MPS complex and, therefore, knows first hand what we are going through.

Thanks, Leslie, for the AARDA info....that is one area that I haven't come across in my 3 years of researching this yet. Will be sure to check it out!

Also, thanks Bev, for the info about Noni juice. I even found sellers for it on E-Bay!

I hope the websites help you a bit, Janet. I'll bet you didn't know you had so many "sisters"

Blessings and wishes for a happy day to all!
 
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