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Fibromyalgia
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An_253708 posted:
Hi I have Fibromyalgia. I really don't know to much about it. Does it cause pain like stabbing, aching all the time. To the point where I want to cry.
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missist responded:
Hi, yes it can be that way. I'm sure others will chime in, welcome!

In my case the worst pain was in the early years and it is a lot less pain now. Also I have a good set of RX meds that help, and have learned to pace myself.

Hope you will find what works well for you, stick around, there are lots of very nice people here that can give you ideas where to start to get the help you need.
welcome again!
mary
 
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dollbug responded:
Hello and welcome....MiMi in NC....the wrath of the dragon STINKS. I think most of us have found this out. Dealing with the wrath of the dragon, aka FM, is a challenge for most of us FMers. But I can assure you that the more you learn about *it* the better you will feel. No joke here. It does take a *trial and error process* which does take time and effort to learn what may help you cope better.

So hang in here and learn all you can about what works for others....we are all different though and what works for one may or may not help you. You have to be the judge though, since you are the only one who really knows IF something has helped improved the way you feel.

Have you gotten your Vitamin D level checked yet? If not, speak to your doctor about this the next time you have to see him/her. Vitamin D level is important....low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. It is a simple blood test BUT you must ASK the doctor to do it....as it is NOT yet included in the *normal bloodwork* that the doctors do. (don't quite understand WHY)

Check out the info here under *tips* and *resources*....and be sure and review the *member toolbox*....as you will find some good *tools* that you can try....that just might make a BIG difference in the way you feel.

Take care and good luck.



MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

 
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meg_k replied to dollbug's response:
Yes, Fibro can cause all those types of pain, and also pins & needles, burning, joint and muscle aches, etc. But there is hope! You won't always feel as bad as you do today. There are lots of good tips in this online community about things that help with the pain. Here are some ideas of how to feel better:
  • Supplements (Vit D most important as MiMi said, also B12) -- get them checked and take ones you're low on, even massive doses if necessary, under physician supervision.
  • People try other supplements such as magnesium malate and aceytl-l-carnitine with some success.
  • Hot baths or showers.
  • Movement -- what you can do without wearing yourself out. Stretching! Move every day!
  • Pain medications - talk to your doctor. Tramadol is one I hear a lot of people talk about. Muscle relaxants such as flexeril work for many. Also gabapentin works for a lot of us.
  • Drugs FDA approved for Fibro pain: Cymbalta, Lyrica, Savella. People seem to get some relief from these. I do.
  • Alternative therapies like massage or acupuncture.
Hang in there, there is good relief out there, you just need to try some of this and figure out what works for you.

Stay hopeful,
Meg K in MN
 
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Melas responded:
Hi there and welcome. I'm a newbie to fibro as well and recently joined this group. I'm still learning about this and going through the phase of acceptance. It's frustrating that you can't see a diagnosis on a test result. But here I am with FM after confirming that everything else with me is normal. The pain and stiffness sucks for sure. But don't let it beat you. Stay positive and read what others are doing. I find that an electric blanket can be my best friend sometimes. And I'm. Very active so when the pain is manageable, I get outside and move. Even at work, I get up from my desk and take short walks to prevent stiffness.

Still working on what meds work best but I know that something, at some point, will help.

We are all here for you.
 
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TurtleRunnerNC responded:
Newbie here too. Yes, that is how my pains are.

I am taking Savella and it has helped a lot. Unless I push it too far.

Move everyday, even if its just a little.
 
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MissyAng replied to meg_k's response:
Hi I am a new to this board. I have been preliminary diagnosed (based on process of elimation) with FM by my primary doc but am waiting to go to Rheumatologist. Have any of you heard of a very new blood test FM/a ? I actually found the information on WebMD under Fibromyalgia, saved it, and now I can't find it. Argh. Anyways, have anyone ever heard of this? Here is the info I did get copied and pasted in an email to myself to remind to request the test from my doctor:

Most laboratory tests are not very useful by themselves for diagnosing fibromyalgia . There is a blood test to help diagnose fibromyalgia. The test -- called FM/a -- identifies markers produced by immune system blood cells in people with fibromyalgia. Because the test is new, insurance may not cover it. Ask your doctor if the FM/a test is right for you.


I actually called my insurance this morning (which is Aetna POS) and they do cover it. Was just wondering if anyone has had this blood test done.
 
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MissyAng replied to MissyAng's response:
Actually I found the info. re: FM/a blood test. It is under Fibromyalgia Diagnosis and Misdiagnosis
 
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missist replied to MissyAng's response:
Hi I never heard of it until you posted the link and then I googled and sure enough there's info about it out there. About time.

Now.. wouldn't it be nice if we could change the attitudes of doctors and others too?
 
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MissyAng replied to missist's response:
Missist: Yes, it is a frustrating diagnosis. I am hoping this test will be one more step in the right direction. . Once I get the go ahead from my primary, I am going to get tested. But to be honest, there is a small part of me that is worried what if that is negative because I have been tested for everything else. Ya know what I mean?!?
 
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missist replied to MissyAng's response:
LOL, I had the same thought. I'm out of 'other'.
 
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bette_kaffitz responded:
An,

Trot yourself to the nearest library and check out a book or two on fibromyalgia. There are plenty to choose from. My favorite is the Fibromyalgia Helpbook by I. Jon Russell and Jenny Fransen.
But there are lots of good books to read.

When you find a book you really like, you may want to purchase a copy to have at home.

Right now, this is all new and probably overwhelming for you.
As you learn more about fibro and how it effects YOUR body, you will be better able to manage your symptoms. You'll learn whether vitamin D helps you, how much exercise helps, how much exercise hurts, and when you should stop and take a break. It won't be easy. But, if you keep in tune with your own body, you will be able to manage your pain, your fatigue, and your life. It won't be the life you planned, but it can be a good life.

The hardest part is accepting that this is a chronic condition. You won't get "better." You'll just get better able to cope. And coping is the name of the game. Meds help. Physical therapy helps. Behavior modification, accupuncture, and prayer help. But none of these will take away your fibro.

I have hope that this will change in the near future. There is a flood of new research being done (as evidence, your FM/a test). But there is so much more to be learned.

Stick around and learn.

Bette
 
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Melas replied to MissyAng's response:
Interesting!!!!!! I'm going to ask my doc about it tomorrow. Thanks for that.
 
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Melas replied to MissyAng's response:
EXACTLY:) then if it's not, then the questions become, "what the heck is it" and "are you kidding me"?
 
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meg_k replied to Melas's response:
I had heard there was a test under development, but I was not aware it had gone to market. My understanding is that it is based on science demonstrating a "weird" pattern of amino acids in our blood not found in "normal" people. Let us know if you end up having it.

And, boy oh boy can I relate to the fear of a negative test. I got to the point where I was weirdly hoping the MS tests, Lupus, RA, etc. woudl come back positive so that I coudl have an explanation and some hope of a treatment path to follow. And also having a "real" disease that people woudl understand and not doubt like fibro. How's that for sick?


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