Fibromyalgia

[MyJesusILoveThee]

I FINALLY found a doctor who will listen to me! Woooohooooo! God is good!! Been praying for a doc who can figure me out and not tell me I'm crazy. I'm so excited. Now, maybe we can work on dealing with it and I can get some rest!

Anybody else deal with docs who refuse to listen to you? I was at the end of my rope.

[Rebekah]

I think there are some doctors out there today who do not have (or take) the time to really get to know a patient's symptoms. I also think that many try to go the quick fix route rather than thoroughly examining the patient. That's not all the doctors fault, I think a lot has to do with insurance and a whole slough of factors.

I also feel that we often know our bodies best. Years ago, I knew I was getting pinkeye. I had it as a child and remembered the symptoms well. I had been around a woman whose son had it, and could feel the itching in my eyes. The PA told me it was allergies. I went home frustrated because I knew the difference.

The very next day I was at the same doctor's office; my symptoms worse. Yep, that's pinkeye, they told me.

[IlovemyJesus]

Yes, my Dr. told me I was getting older and just experiencing the aches that comes with it. However, I have a friend with fibro and my symptoms are exactly like hers and I hurt really bad right before the weather changes and at other times as well. It isn't so bad that I can't handle it for now. Praying it doesn't get any worse. Hope you can find satisfaction with this Dr.

[MezzerClaw]

I FINALLY found a doctor who will listen to me! Woooohooooo! God is good!! Been praying for a doc who can figure me out and not tell me I'm crazy. I'm so excited. Now, maybe we can work on dealing with it and I can get some rest!

Anybody else deal with docs who refuse to listen to you? I was at the end of my rope.

Wow, er, your story fits mine to the day! I also today found a doctor who is listening to me and he agrees with me, he thinks I have fibromyalgia! They are gonne do additional test on me, including a sleep breathing test! I hurt so bad some days.... Reg meds just don't touch it! Your story is so like mine, PM me if you'd like. MC

[MidwestMama]

I'm so glad you finally found a doctor that will listen!! I think many just tend to brush off symptoms. Those of us who are really in tune with our bodies know better!!

I have read about fibromyalgia a little and wondered about myself... I do have some symptoms that match. Do you have a good website or two that explains it really well?? Thanks...

Cris

[BlessedAssurance]

Yeah, you're not paranoid. I went 15 years before I found a doctor who would listen. He's a gift from God.

All the others told me I was too young, too fat, too cute, too... fill in the blank. Then was depressed.

Sorry, not it. I'm in severe pain 24/7. I can't lift my left leg or wiggle my toes. I'm not depressed though, because I have my Lord and Savior to see me through.

I truly thank God for the doctor I found last year. He listened, took 4 pages of notes, told me I didn't seem depressed at all, and found me a pain specialist who is helping me.

I saw him today, and I can have another treatment in three weeks. I'll be able to be up and around with my family through the holidays!

[LookingUplinda]

a place to start for fibro diagnosis is a rhumatoligist, they have a testing system for it, and if you need disability for it go to him.

[katt]

what is fibromyalgia?

[carrieb]

Fibromyalgia is an immune deficiency disorder (possibly virus born) that causes its sufferers to have otherwise unexplained muscle and joint pain virtually everywhere on their body. It is also associated with chronic fatigue syndrome, which is what I have, which manifests as severe prolonged fatigue. Sufferers of both illnesses very often find the most modest of daily life tasks difficult.

I have had some good results from paying attention to my diet - no sugar, very reduced carbs and a supplement called NT Factor which supports mitochondrial ATP production. Research suggests that the illness affects the energy production cells.

When I have had bouts of fibro pain, I've found that taking D-Ribose (a supplement that athletes use for muscle stamina) helps after a day or two of dosage.

Currently there is no cure for either illness, there are several various drug and nutrition therapies.

[LookingUplinda]

it is aching muscles, overactive nerves cause it. Mine came with a chronic fatigue thing, but that doesn't always happen. It seems to come on in the pre-menopuase phase of life. Mine was so bad, I couldn't even sleep at all because my muscle aching never stopped. If I did gardening or anything physical my body reacted as though a truck drove over it.

[carrieb]

lol Linda, "feel like I've been hit by a truck" is often my phrase too. If I have a good day where I can do something errr anything (dishes, laundry, showering, cleaning) the next day is always a rest day, a nearly in bed day...

I was given a huge blessing a little over a year ago where I'm now able to shower, get dressed and go to church on sundays and bible study on wednesday - this was an enormous change for me and I'm so happy for it!

[LookingUplinda]

Fibromyalgia is an immune deficiency disorder (possibly virus born) that causes its sufferers to have otherwise unexplained muscle and joint pain virtually everywhere on their body. It is also associated with chronic fatigue syndrome, which is what I have, which manifests as severe prolonged fatigue. Sufferers of both illnesses very often find the most modest of daily life tasks difficult.

I have had some good results from paying attention to my diet - no sugar, very reduced carbs and a supplement called NT Factor which supports mitochondrial ATP production. Research suggests that the illness affects the energy production cells.

When I have had bouts of fibro pain, I've found that taking D-Ribose (a supplement that athletes use for muscle stamina) helps after a day or two of dosage.

Currently there is no cure for either illness, there are several various drug and nutrition therapies.

carrieb, I had good response with MSM, a natural sulpher that helps with the aching. This works after about 2 weeks of 1000mg's daily, I took it for several years and am able to go without now.

[carrieb]

Thanks Linda, I'll definitely add it to my daily vits (can I say vits if I'm not british?) hehehe...

[LookingUplinda]

lol Linda, "feel like I've been hit by a truck" is often my phrase too. If I have a good day where I can do something errr anything (dishes, laundry, showering, cleaning) the next day is always a rest day, a nearly in bed day...

I was given a huge blessing a little over a year ago where I'm now able to shower, get dressed and go to church on sundays and bible study on wednesday - this was an enormous change for me and I'm so happy for it!

I can't even imagine what it is like not to be fatigued! My days are so short! I used to wake up really groggy for 4 hours EVERY morning(I fall over alot)God led me to Ashwagada suppliment by Swanson's called 'Sensoril' and half way thru the bottle it began to work, now I don't wake up that way anymoreI LOVE GOD'S herbs! They have helped often! I never take a prescription, they are as bad as crack for me, not that I know what crack is like, but I do know what pot is like, and when I used that it relieved my nerves from this abnormal stress issue which is now worse from my brain tumor resection. I know it's contoversial, but I just wish it would get legalized. Until you've been thru this much medically, one will not understand. I don't wan't to use it if it's not legal, can't afford it, would like to use it at bedtime.

[MezzerClaw]

I hurt worse when the weather changes! I wonder why. I hope my husband can learn to deal with this, he wants me out of bed when he gets up (6am ) even when I'm sick!! He thinks if I'd "just get up" I'd feel so much better! I'm just ALLWAYS so tired! Ugh. Oh well! I can only do what I can do! We have help in high places!

[LookingUplinda]

I hurt worse when the weather changes! I wonder why. I hope my husband can learn to deal with this, he wants me out of bed when he gets up (6am ) even when I'm sick!! He thinks if I'd "just get up" I'd feel so much better! I'm just ALLWAYS so tired! Ugh. Oh well! I can only do what I can do! We have help in high places!

I pray for an answer to the fatigueMezz, the rest is a bit better cuz I no longer do hard labor since the brain tumor resection, but it was sure hard after the surgery to be stuck in one position for so long because it was months before I was able to roll over. I just tried to disappear when the nurses came to try to make me more comfortablethey always made it worse, but God worked a miracle, because I was having so much trouble sleeping from the fibro, and thru this all of a sudden I was sleeping thru the night, even when I no longer took pain killers. Did you know the brain has NO PAIN, so it was only for the stitches that I needed the pain killersand thru the entire resection/surgery, I needed NO pain killers and not much other meds eithera 17 hour surgery and no meds hardly, it was really amazing! But the emotional trauma, that was something else!!!!!!!!!!

Mezz, I don't know how you manage to get up that early unless you go to bed at 7

[MezzerClaw]

I pray for an answer to the fatigueMezz, the rest is a bit better cuz I no longer do hard labor since the brain tumor resection, but it was sure hard after the surgery to be stuck in one position for so long because it was months before I was able to roll over. I just tried to disappear when the nurses came to try to make me more comfortablethey always made it worse, but God worked a miracle, because I was having so much trouble sleeping from the fibro, and thru this all of a sudden I was sleeping thru the night, even when I no longer took pain killers. Did you know the brain has NO PAIN, so it was only for the stitches that I needed the pain killersand thru the entire resection/surgery, I needed NO pain killers and not much other meds eithera 17 hour surgery and no meds hardly, it was really amazing! But the emotional trauma, that was something else!!!!!!!!!!

Mezz, I don't know how you manage to get up that early unless you go to bed at 7

I don't get up that early. My husband trys, but I just can't move that early. He gives up. I need sleep!

[atruckersprincess]

I'm so glad you were able to find a dr who listens to you! I am still undiagnosed, but pretty certain I have this. Have been "dismissed" by 2 previous doctors who blamed in on my weight. My current doctor of almost 3 years I haven't really said anything too as I really like him and don't want to have him think I'm nuts if he doesn't believe in it.

My mother has fibro, so I know all about it and I have almost every symptom. My mom did the tender point test on me and I have 12 of the 18.

I have to say that I guess I do ok. I've learned to live with pain and how to limit myself and my activities. I work, so I have to do things like cleaning and shopping on my days off. No way can I do them on the same day without paying for it. If I am careful about limiting things, then I can usually get by without more than mild aching. But, that also depends on how busy I am at work on that day also.

MezzerClaw - I am always worse when the weather is bad, especially when it gets cold. I get chilled so easy and then ache so bad!

[IlovemyJesus]

I hurt worse when the weather changes! I wonder why. I hope my husband can learn to deal with this, he wants me out of bed when he gets up (6am ) even when I'm sick!! He thinks if I'd "just get up" I'd feel so much better! I'm just ALLWAYS so tired! Ugh. Oh well! I can only do what I can do! We have help in high places!

MezzerClaw, I understand what you mean about the weather change and pain. I can tell my husband I'm hurting and he now knows that we are either going to get rain or the temp is going to change. I don't understand it either. May your husband have a tender heart towards you smothered in understanding.

[ginseng]

Great thread! I'm too tired (of course) to add anything, but will back tomorrow to make a list of all the supplements & treatments mentioned here.

Oh, I've had Chronic Fatigue Syndrome since '85. MUST
sleep late every day... at least till noon.