Fibromyalgia sufferers -

[LuvDuke]

How were you diagnosed? I've been told that many Doctors don't take this seriously.

I have not been diagnosed - but I literally exhibit almost every symptom of it.

Tell me your symptoms and how you manage.

THANKS

My mother suffers from fibromyalgia and the only thing that helped her long term was accupuncture. I don't know and my mother didn't care why. It was the only thing that helped her.

And frankly, if you've got a doctor who doesn't take you seriously, get another doctor.

 

[binny]

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And frankly, if you've got a doctor who doesn't take you seriously, get another doctor.

I could not agree more!!

My Doctor is all about "whole body treatment" she believes the pain in real and the rest of the symptoms but she does not believe it is only physical. She is treating all of the symptoms including the stress on the depression that go along with it.


There are Doctors who treat Fibro.

I did a google search for "Fibromyalgia Doctors, Boise" in quotes and came up with a surprising amount. Then I asked my GP about them and she told me what she knew of them. I havent been to any of them yet as Im pretty with what Ive got for now.

 

[Mickey527]

I was told by my rheumatologist that is was osteoarthritis. But he made me an appt with a neurologist for the neuropathy.
the neurologist did the pressure point test along with electric stimulation to the muscles (ouch). He then diagnosed fibromyalgia, neuropathy and depression. I also have chronic fatigue and sjogrens syndrome.
This all came about after chemo treatment for BC. I couldn't understand why Melissa Ethridge stopped her chemo halfway through when her hands became numb. I had the same symptoms but I wanted the chemo just in case they missed any of the cancer. She was right, she can play the guitar still and I can hardly type anymore.
I had to stop nursing because I can't even open a bandaid anymore with the numb fingers. I get disability from work and they are fighting SS for me. Luckily that is one of the benefits they do for their disabled employees, I don't have to deal with it, but SS is fighting back. I feel so sorry for those who have to face SS on their own Peggie

 

[shovan]

I've been diagnosed about a year. Blood work in my GP's office, indicated rheumatoid arthritis & had GP refer me to a rheumatologist. This was after years of seeing every type of doctor there is.

I am glad to read other's ideas on how to feel better. So far, I haven't had very good results. I like my rheumatologist, but he wants to dope me up so much, that I'd be unable to function. He thinks I'm not getting into REM sleep. So he prescribed Lunesta & muscle relaxers. I can't think straight during the day if I take both. So far now I'm just using the lunesta for sleep & muscle relaxers occasionally when it gets really bad.
Thanks to all for other suggestions, I'm going to give some of them a try.

It does sound like accidents set this off. I've had a several car accidents with whiplash. I also believe that stress in key & I know that moving around by DH with MD, doesn't help.

Judy from Boise, I'm shocked that someone actually has more Birks than I do!! I have 24 pairs, it's the only thing I can wear.

 

[arminnie]

Does anyone have any experience with Fibro sufferers receiving disability SS for their illness?

I have a friend (age 55) who has been on disability for fibro for about 5-6 years. She went through the whole denial, court hearing process twice before she got approved. But you have to have a doctor who is a very strong ally and who is willing to help the patient with all of the paperwork. My friend has it so bad that she is on oxycontin daily just to get by.

I would call one of those lawyers who specializes in s/s disability claims to see if they have a doctor that they can recommend. Or call around to rheumatologists to see if they work with fibro patients.

 

[arminnie]

Judy from Boise, I'm shocked that someone actually has more Birks than I do!! I have 24 pairs, it's the only thing I can wear.

I am not going to count how many Birks that I have. I never thought that I could wear them (narrow foot), but I bought my first pair 6 years ago and have not looked back. My first pair were black patent Sydneys. I still have them - my "dress" Birks.

 

[Wishing on a star]

About the autoimmune and viral aspects of this.

Just the other day, I heard a bit of a headline (not a full story) about how researchers are finding that antiviral drugs are being successful with this.

Has anyone here found a doctor that would give try this and see if it works?

 

[phorsenuf]

Does anyone have any experience with Fibro sufferers receiving disability SS for their illness?

I recieve disability but I can't say for sure its all from fibro. I have a few other medical problems as well. DDD, migraines that mimic strokes that are caused by flourescent lights and a variety of other things.
I asked my DR. about it and she said to try. I did and I was actually approved on my first attempt and they retroactivated me back a year and a half.
Now while I was happy I was approved so quickly I was also kinda bummed that I have enough problems that the government considers me disabled. It was a hard thing to accept actually.
That probably sounds a little weird but I guess it was a part of the whole denial process that I didn't want to accept.

 

[Wishing on a star]

Now while I was happy I was approved so quickly I was also kinda bummed that I have enough problems that the government considers me disabled. It was a hard thing to accept actually.
That probably sounds a little weird but I guess it was a part of the whole denial process that I didn't want to accept.

Sooo true. I know just what you are saying!

 

[grinningghost]

I have always believed I have fibro. I have MS, but I also suffer from terrible muscle pain daily, and a whole host of other symptoms that don't generally fall under the MS symptom categories.

So far, no doc has been willing to acknowledge it - they just attribute it to the MS or my depression.

I do treat myself as though I have fibro anyway. I have several books on the subject and use them as a guide.

A Homedics Rolling/Shiatsu Chair Cushion Massager is the best thing that's come my way. It really digs deep into those hard, tight muscles - and it never gets too tired.

 

[phorsenuf]

I have always believed I have fibro. I have MS, but I also suffer from terrible muscle pain daily, and a whole host of other symptoms that don't generally fall under the MS symptom categories.

So far, no doc has been willing to acknowledge it - they just attribute it to the MS or my depression.

I do treat myself as though I have fibro anyway. I have several books on the subject and use them as a guide.

A Homedics Rolling/Shiatsu Chair Cushion Massager is the best thing that's come my way. It really digs deep into those hard, tight muscles - and it never gets too tired.

I can't believe you said you have MS! I have read about so many people that are diagnosed with fibro and then years later develop MS. I honestly believe that fibro is a precurser to MS.

 

[chell]

I think I've pretty much had it since I was a little kid. When I was a little girl my grandmother would rub my legs down every night because they hurt so bad. My doctor always said it was simply growing pains. I haven't gained any height since I was 12 and the pain is all over my body.

Cold days are the worst for me. This cold spell that is moving in right now is really messing with me and it is all I can do to keep moving and working today. Heat seems to be the best thing to help me, that and tons of ibuprofen.

to everyone!

 

[shovan]

I am not going to count how many Birks that I have. I never thought that I could wear them (narrow foot), but I bought my first pair 6 years ago and have not looked back. My first pair were black patent Sydneys. I still have them - my "dress" Birks.

I wish you could see my red patent Claremonts! I also have a very narrow foot. I have about 4 pairs from the architect collection with the gel insert. Those are the only things I can do WDW in. And they aren't making them anymore! Bought every pair I could find online!

 

[puggymom]

Interesting about mono, I have heard that before, I had mono when I was 13 and was diagnosed at 16. I also took a very bad spill skiing when I was 14 or 15. I have another disease, sarcoidosis, which is autoimmune, I developed that when I was 33.

Talking about shoes, I keep reading about those darn crocs and am so tempted, but I can't get past how they look. What do other fibro people think of them and how comfortable they are?

I have one of those rolling shiatsu massagers and they are wonderful.

 

[phorsenuf]

Interesting about mono, I have heard that before, I had mono when I was 13 and was diagnosed at 16. I also took a very bad spill skiing when I was 14 or 15. I have another disease, sarcoidosis, which is autoimmune, I developed that when I was 33.

Talking about shoes, I keep reading about those darn crocs and am so tempted, but I can't get past how they look. What do other fibro people think of them and how comfortable they are?

I have one of those rolling shiatsu massagers and they are wonderful.

I took a nasty fall when I was around 29 and after that my health started going downhill. Of course that's how my whole back thing started but that's a different story.

I'm so tempted to try crocs too but I would hate to spend that money on such an ugly shoe if I can't even wear them. LOL

 

[binny]

Ive been thinking about buying another pair of Birks maybe I should do that again.


I cant wear Crocs because in addition to the Fibro I am highly allergic to latex. I wore them one day with socks and I had a horrible allergy attack. I was driving and could barely make home.


I am looking for more comfortable shoes too.

Judy you do a lot of standing and walking what do you wear to work?

 

[transparant]

Do most of you find that your symptoms are worse in the winter? I'm not even 100% sure that I have fibro yet - however I have MANY of the symptoms.

I seem to be much better during the spring and summer months.

 

[binny]

It seems to make a difference if its a wet cold. The dampness seems to make it worse for me or a lot of wind.

What really seems to get me is high air pressure that seems to go hand in hand with inversion so its hard to pinpoint exactly which it is.

 

[chell]

Do most of you find that your symptoms are worse in the winter? I'm not even 100% sure that I have fibro yet - however I have MANY of the symptoms.

I seem to be much better during the spring and summer months.

YES!!!

Does anyone else have a lot of allergy issues? I have tons!

I never had mono or any of that but still find that very interesting.

 

[Judy from Boise]

There seems to be at least 3 distinct "paths to Fibro"
1. Whiplash
2. Infection
3. Fracture of a major bone

One of my daily triggers I have to avoid at all costs is wind/air blowing on me. My DH is very patient when we have to move in restaurants etc.

I swear by Dansko's professional clog, great support .

Good on-line support group http://www.fibrotalk.com