Fibromyalgia, any experience?

[Zeke]

I have a close female relative that exhibits all the classic symptoms and of course the docs don't have a freakin' clue. They won't even prescribe serious pain meds until the pain has persisted for 3 months.

How does this all go down?

[Joeaksa]

Find a different doctor...

[Tobra]

It is, in my opinion, a sleep disorder, manifest by musculoskeletal pain. There is some evidence it is a lack of certain amino acids in the diet also. They need to go off caffeine, melatonin at night helps some. They need to stay active, yoga, tai chi or something. If they don't keep moving, they will get to where they can't.

have them go here, they need to be a bit proactive, much as I hate the term proactive
National Fibromyalgia Association:

[dhoward]

What Joe said.
Fibromyalgia is a difficult diagnosis and most docs don't want to deal with it. Even after a diagnosis, my wife ended up going through several doctors before she found one who would help manage her symptoms.

[Zeke]

Originally Posted by Joeaksa

Find a different doctor...

Joe, that's always a pat answer. So, how does one go abut selecting another doctor? The doc in this case is well respected and treats several members of the family. Not saying he's the only doc in the pool, but so many of them are going to be just equal and many are going to be less qualified to treat someone for whom they have no history.

Tobra, thank you. I suspect a sleep disorder is a factor. That's kind of a vicious circle, isn't it. You have given me some insight and I may have a plan to suggest after reading your post. And that's why I put it up here.

[Joeaksa]

Well Milt, I have a pat answer as well!

There are loads of users groups, blogs and bulletin boards on the internet for just about every ailment out there. Get her on one that focuses on what you feel she has and go from there.

Then find someone in that ballpark area and ASK for a referral to a doc who gives a chit and wants to help!

There, better??

Joe A

[Kaliv]

A relative of mine was diagnosed with this a few years back and the doctors didn't perscribe anything. The advice was basically figure out what makes you feel the best and keep doing that. From my experience on what she has researched, is that no two people are exactly alike and respond to treatments differently. Probably why it's difficult to diagnose and treat. She does have a TMJ problem though and uses a mouth insert to sleep with. Controversy on that was well over the internet, but she says she can tell it helps...but it takes about a month to feel the effects. She just moved and doesn't have a dentist to maintain the piece, so she hasn't used it for a few months and she can tell that she hasn't -- headaches and such.

Not that it helps at all, but there was clinic in Las Vegas that she wanted to go to that specifically treats fibromyalgia. If she hadn't moved, she probably would have checked it out. Might be worth a day trip to check it out...or maybe you can find a clinic closer in Cali.

[speedemon666]

My wife had the same diagnosis 4 years ago. The doctors couldn't figure it out. She searched the medical web sites to diagnos herself and spoke to her doctor again.

Just like you said, she had to wait 3 months before she could get the good stuff. 6 more months to get the meds and dosage right. Basically, they were guessing to see what worked. Not to rag on the doctor, it's just that each fibromyalgia patient is different. She now takes 14 different meds, the kind that would make a horse loopy. Or if your relative likes, she could get a prescription for 1oz of medical marijuana per month as did my brothers' wife.

Be prepared for her to suffer. There really is nothing that you can do to comfort her, just give her the support she needs to push through the pain and get better. My wife cried in her sleep because of the pain. She walked like an 80 yo woman with a cane and was still in her 30's. It drove her to severe depression and was admitted into a psych ward.

A year later and with proper treatment, dieting and excersice, she is semi-functional. She will never be 100% because it stays with you for life.

Fibromyalgia also varies in pain levels. I sincerely hope hers is extremely mild and wish her the best. Even now it still breaks my heart and brings me to tears to talk about what we went through.

[techweenie]

I had a friend who suffered from it and cured herself with a major diet change. She followed the (popular at that time) Fit for Life diet. This was 20+ years ago, when it was not accepted as a disease by *any* doctor, AFAIK.

[brakedw]

Difficult diagnosis it typically involves ruling out other possible diagnosis while ruling in typical criteria for fibromyalgia (point tenderness on several body parts) Depression is a frequent companion to fibromyalgia as well. It can take months to years to get to the diagnosis but that being said the treatments are straight forward and the following rules apply
1) do not treat with narcotics it can make acute pain spells worse,
2) screen for and treat depression if needed
3) the best outcome is 50% reduction in pain with medications so lifestyle modification, relaxation techniques are vital
4) medications to treat include, Savella, cymbalta, trammadol, neurontin, lyrica.
you must find a dotor familiar with this and knows the basic treatment

[JAR0023]

My mother had this diagnosed some years ago. She's had a lot of other diagnosis as well, but that's another long thread. IBS, Diverticulitis, Chrones...you name it a Dr. said she had it. She's also an anal retentive, obsessive/compulsive control freak...but we all have our crosses to bear.

Here's what was eventually found and is working somewhat. You'll have to excuse the lack of details but it's been a while since we discussed. My mom eventually found a doctor that had her take a blood test for heavy metals etc.

Turns out her arsenic, lead, mercury and something else levels were off the charts high. Conversely some of here vitamin levels were off the charts low. Her body was basically poisoning itself. If this condition has a name I don't know it. They told her it's likely not hereditary but if I get to feeling that way I'll have mine checked.

She's been through a bunch of Ketosis to remove the toxins. Her diet was restricted to not much more than spring water. She was tested for food alergies and has been allowed to add foods back to her diet one at a time with monitoring. She takes huge doses of certain vitamins.

I'd say she has made significant improvement from this specific issue but she has other things going on as well. I love my mother dearly but would not wish her on anyone.

J

[Tobra]

Zeke, it is pretty messed up, you hurt, so you can't sleep, which makes you hurt more. Going to have to change their life, diet, sleeping habits, the whole magilla

J,
I think you mean kelation

[NY65912]

My wife was diagnosed with Fibromyalgia about six months ago after being referred to a Rheumatologist by our GP. She exhibitted all the classic signs, her muscle enzymes were sky high.

After a slew of blood tests he prescribed Cymbalta. After two weeks she is another person. The severe musculoskeletal pain and sleep problems started to disappear. She is now without pain and has energy and a great outlook.

Finding the right doc is always paramount.

[enzo1]

Fibromyalgia: The Non-Drug Solution

[Zeke]

Enzo, you have experience with this program? I tend to avoid advice "for sale."

[enzo1]

MIL has fibromyalgia.... this site is what my wife said is the deal. Don't buy any thing just pick through the info. Anything with fluoride is not good as in antidepressant medications. Reverse Osmosis for water treatment to remove fluoride, also bottle water has fluoride too. Spring water is ok. Google fluoride poisoning. If you want I can put my wife on here... she's into this stuff like we're into cars also curezone.com edit... http://curezone.com/forums/search.asp?q=fibromyalgia&action=Search

[enzo1]

she suggests this for pain, the PM has melatonin in it....

[Hydrocket]

I had/have it. Many people who have FIB also have CFC (chronic fatigue syndrome) and IBS. I had the tri-fecta. I took extreme measures, and feel a bazillion times better.

PM me if you want details.

[Superman]

My GF has it. Just figured that out. For now, she's talking low doses of cyclobenzaprene (Flerxeril), which helps.

[Hydrocket]

Originally Posted by Superman

My GF has it. Just figured that out. For now, she's talking low doses of cyclobenzaprene (Flerxeril), which helps.

That was the only drug that worked for me. But it worked TOO well. Some days when I took it, I would sleep for 12+ hours a day. Left me feeling drowsy..and not myself.