Does anyone on here suffer from Fibromyalgia?

[catwoman61]

Well Im seeing another dr on the 30th to see if she can help me or refer me to a rhumetologists cause I need an exact dx for it , Im tired of getting the here let me send you to this dr to no avail so I think I will get a referal to a rhumetologists . at least I hope I can . Im just really tired .I guess worn out would be more the word . But thanks everyone for letting me know that I am not alone .

 

[Colleen1]

Well Im seeing another dr on the 30th to see if she can help me or refer me to a rhumetologists cause I need an exact dx for it , Im tired of getting the here let me send you to this dr to no avail so I think I will get a referal to a rhumetologists . at least I hope I can . Im just really tired .I guess worn out would be more the word . But thanks everyone for letting me know that I am not alone .

You're welcome. Yes, everything seems more taxing and onerous being fatigued and in pain. It's a pain in the neck...At times literally.

 

[HeSaveDave]

Thanks for that site, mmksparbud. Thanks all.

 

[Kristen.NewCreation]

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[SplendidTree]

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[HeSaveDave]

I am hurting so bad. My doctor has cancelled on my 3 consecutive times and when I aksed for a refill on my pain meds they said they couldn't refill it because it's been too long since I've been in to see him. ITS NOT MY FAULT! HE'S CANCELLED 3 TIMES! I am withdrawing off my psych meds as it is right now, not I have to go without my pain meds! I am having a breakdown and I am so stressed!

 

[KristinaB]

I am having constant pain these days, more-so than usual. My doctor has been trying this one prescription for me, but it's not helping except that it does let me sleep some nights. He has referred me to 2 different neurologists, but they say there's nothing wrong with me. Then I get shuttled off to a rheumatologist and he claims that I can't possibly hurt like I do and will do nothing else. Needless to say, I have this massive fear of rheumatologists anyway due to issues some friends have had.

 

[SplendidTree]

Praying for everyone now.

 

[mmksparbud]

OK--I thought this thread had been shut off permanently--I guess they got rid of that one poster---ok, I'll repeat this one. Please google Low Dose Naltrexone--check out the info, print it up and take it with you when you go see your dr. 9 X's out of 10 they will not read it, if they do, they will not prescribe it as it's off label--Many, many people are being helped by it, nothing works for everyone. It's been around since the 50's for Ca and MS and other stuff at 50 gm--for fibro it is used at 4.5 grms or less. It has to be gotten at a compounding pharmacy and insurance does not cover it--but it is an old drug so the patent has run out and the pharm co's can't make money off it, so they are not promoting it. It is a relatively cheapo drug and if you check out the internet pharmacies, there are some that mail order if they have a license in your state. You can PM me and I will send you the info on the pharm I use out of New York (I'm in Nevada)--they ship to many states and are the cheapest--because they can order so much and get it cheaper.
I was blessed to have had 3 dr's that all had the brains to check it out on their little pocket computers and they went out of their way to order it for me. They gave me the prescription and I faxed it to the pharm--I had to get off it only because of my neuropathy pain and that does not help that kind of pain and you can't take any narcotics with the LDN, they cancel each other out--though some say you can if they are 12 hours apart.

Many dr's refuse to prescribe it as it's outside of their "comfort" zone. And some dr's just will not listen to what a patient thinks, it's their way or the highway--that's when I say--well, then it's the highway! When it comes to fibro, sometimes we have to just get aggresive and arm ourselves with info--and insist on them doing what is needed!!

I almost came to blows with one dr who refused to give me more than 3 tramadol a day--he said he was not "comfortable" prescribing more than that--I said--It's not your comfort I'm here for, I'm here for mine. I insisted he send me to a pain specialist and he wrote a letter to the dr and now my dr is prescribing what I needed, which is still less than the max allowed!

We have to to the homework--most dr's won't, they rely on what the pharm companies are peddling.

 

[Colleen1]

I am having constant pain these days, more-so than usual. My doctor has been trying this one prescription for me, but it's not helping except that it does let me sleep some nights. He has referred me to 2 different neurologists, but they say there's nothing wrong with me. Then I get shuttled off to a rheumatologist and he claims that I can't possibly hurt like I do and will do nothing else. Needless to say, I have this massive fear of rheumatologists anyway due to issues some friends have had.

So not fun. I feel for you. You are not alone.

 

[LaineyHarrison]

Hello everyone. i was recommended to come on here and speak to everyone who has the same issues as me. Anyway. I'm Elaine and i'm 17 from England and i suffer from Chronic Fatigue Syndrome, Fibromyalgia and IBS. It's really nice to know that there are lovely people on here who all share experiences and love for one another. I am constantly in pain and have been for 2 years and probably will be for the rest of my life, but i've got this far with God by my side and whatever time i have left, i will lean on Him. I do not ask for sympathy, just the empathy of others in the same situation. Stay strong and have faith x

 

[Colleen1]

Hello everyone. i was recommended to come on here and speak to everyone who has the same issues as me. Anyway. I'm Elaine and i'm 17 from England and i suffer from Chronic Fatigue Syndrome, Fibromyalgia and IBS. It's really nice to know that there are lovely people on here who all share experiences and love for one another. I am constantly in pain and have been for 2 years and probably will be for the rest of my life, but i've got this far with God by my side and whatever time i have left, i will lean on Him. I do not ask for sympathy, just the empathy of others in the same situation. Stay strong and have faith x

Welcome, I'm glad you joined us. I have Chronic Fatigue Syndrome, Fibromyalgia and extensive Chronic Myofascial Pain. You're not alone and I don't mind listening. Take care.

 

[mmksparbud]

Hello everyone. i was recommended to come on here and speak to everyone who has the same issues as me. Anyway. I'm Elaine and i'm 17 from England and i suffer from Chronic Fatigue Syndrome, Fibromyalgia and IBS. It's really nice to know that there are lovely people on here who all share experiences and love for one another. I am constantly in pain and have been for 2 years and probably will be for the rest of my life, but i've got this far with God by my side and whatever time i have left, i will lean on Him. I do not ask for sympathy, just the empathy of others in the same situation. Stay strong and have faith x

I feel for you--It saddens me to see how young these patients are who are getting this. So far, the youngest is 9--but somebody younger might have slipped by me. I sincerely hope that they will find an answer to this soon. All these young people with a life time of pain ahead is tragic.God bless.

 

[HeSaveDave]

Edit: Sorry, I had a bad day.

 

[Colleen1]

Edit: Sorry, I had a bad day.

No problem. We all have those especially if we are chronically ill. Take care.

 

[HeSaveDave]

Count me in, unfortunately. I am hurting particularly bad today, too

 

[mmksparbud]

I was re-reading an article from the Fibromyalgia Network--they did sleep studies on a bunch of "normals" (non-fibro) and then on fibro patients. They placed a whole bunch of electrodes on the brains, far more than the usual, and then scanned the brains. The normals had a pretty dark brain, with just a few sparks of light here and there, the expected. Our brains---lit up like a christmas tree! Now they are beginning to understand why we say we wake up exhausted, Even when we're sleeping, our brains are not! Don't know how that is done, but we've been complaining for years that often we can't sleep, not always because we're in pain, but sometimes because our brains just won't shut up. The dr usually just looked at you like you're nuts.
Now they can actually see some of what is happening within our brains.
They have seen that our brains have shrunk, esp in the hippocampus area. They say we can regrow some of that lost gray matter if you are able to exercise--just not to strenuously, we do not build muscle as normal people do with exercise.

They've done blood work before during and after exercise and found that there are certain chemicals in our system that remain st high levels for sometimes a couple days, normal people come down to normal levels within 2 hours after excertion. Which explains why some of us feel so bad after exercise.
The research that is being done is great, and it is surprising that soo many dr's still don't think this is real. They do not take the time to research what all the researchers have been doing. It's infuriating how blaze they can be about us. My dr now expects me to fill him in on the latest!

 

[crferguson50]

I do not.

 

[mmksparbud]

I do not.

took me awhile but finally got it--

 

[Colleen1]

hmmm, mind bender.

The pain is pretty bad now.