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Fibromyalgia information

Jul 20, 2008 - 27 comments
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Fibromyalgia

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Chronic Pain

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CFS

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FS

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pain managment

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sleep problems

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wide spread pain

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Pain



Fibromyalgia (FMS or Fibro for short) is a chronic condition which causes widespread pain and fatigue as well as a variety of other symptoms. The name Fibromyalgia comes from "fibro" meaning fibrous tissues (such as tendons and ligaments), "my" meaning muscles, and "algia" meaning pain.  Fibro does not cause joint pain or swelling. The pain from Fibromyalgia is produced in the soft tissues of the body, including the muscles and tendons.


http://www.mayoclinic.com/health/fibromyalgia/AR00056



Question: Why Don't NSAIDs Work for Fibromyalgia Pain?
Why don't pain relievers like Motrin, Advil and Aleve work against the pain of fibromyalgia?

Answer:
It's a common misconception that fibromyalgia is an inflammatory or rheumatological condition, but it is not. While researchers still have many theories about the mechanisms behind fibromyalgia, many of them now believe the condition is more neurologically based.

Aleve (naproxen sodium) and ibuprofen-based drugs (Motrin, Advil) are non-steroidal anti-inflammatory drugs (NSAIDs), and are most effective against pain that accompanies inflammation. They're generally not as effective against other types of pain, especially when pain is severe.

http://chronicfatigue.about.com/updated.htm



Fibromyalgia has been researched for a while now by my Doc as well as others who meet regularly in LA.  Studies done by these docs show that a possible cause of "Fibro" is due to a virus once had or have on the nervous system,,which makes a lot of sense considering the nerve pain that is experienced with having "Fibro"  and nerve pain meds (Lyrica) and or Neurontin chemical cousin less potent than Lyrica working and lessening the pain for most who suffer this syndrome.  There is not a sure cause as to why Fibro exists but efforts are being made on the parts of docs who believe in this syndrome and for the want of helping there patients.


Narcotic pain meds are by far the most widely used form of treating Fibro pain and work extremely well for most.  Along with meds comes lots of rest,,eating healthy and drinking a lot of water,,light exercise swimming prob the best (stretching,yoga) no marathons yet,,a good multi-vitamin,,massages help (but are expensive) unless you can get your ins to pay for a PT they also know good massages,,hot baths "especially before bed"



Dont drink caffeine,,smoking slows down the blood flow to our body, thus causing more pain)  so noo smoking,,,,red meat is a natural inflammatory so although "fibro" has nothing to do with inflammation, getting inflammation from another source would cause more pain to the "fibro" sufferer,,,,try not to stress yourself out beyond the stress you already may have from having "fibro" emotional issues can make "fibro" pain and such other syptoms worsen if yoyur emotinally having difficulties.


I hope all who suffer from pain find peace within and can get to a place where you feel tolerable to live within your own body,,fibromyalgia and pain for that matter is a tough one to live with but support can help dramatically,,I as well as others who have good intentions and dont just want to critisize are here for you and will walk with you down this pain journey we share together,,,,

only those who live the pain can find empathy with others who feel and think the same

Comments
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387767 tn?1345872027
by Cindee56, Jul 20, 2008
I just wish I could sleep better!  I am answering your post at 1 a.m., so I'm not sleeping too well!

Thanks for the info.

Avatar universal
by cmdshyj, Jul 20, 2008
by cmdshyj,

having fibromyalgia has made my life just a little bit lousy, granted I have pain everyday, and at times just wish that I could get this tight feeling off my neck and upper shoulders, I try not to complain to much when I am having a bad day, I try to think positive thoughts to try and ease the stress I feel,, and when that does not work, I pray or cry.............I can not wait til the day that I can have a day of NO PAIN

460948 tn?1232302122
by Rose703, Jul 20, 2008
I'm also cursed with Fibro so I know the pain that you suffer through!! For the most part I have bad days and then I have worse days! Do you have an unlying condition? If so, do you mind sharing what it is?

Avatar universal
by reici, Jul 20, 2008
Would like to know how you go about finding a good doctor to help you manage fibromyalgia.  Most of the ones I have been to seem to be more interested in having you take meds that either make you gain weight or make you totally complacent to be in pain (antidepressants), either of which are unacceptable!

562833 tn?1233756109
by girly44, Jul 20, 2008
I was diagnoised with fibromylagia as well. At 13 I was hosiptalized with an unknown condition. I spent a week and a half in the hositpal with no explanation, what had happened to me. Now at 27, it happened again. pain all through my body, couldn't walk or move. I was in the most pain in my life. The pain continued unitl I was diagnoised with Fibro. and they put me on lyrica, and hydro. A couple of months later, the lyrica got too expensive for me so I went off of it. The pain has still not come back, but I loved the way the hydro felt and I continued taking it and throwing away the prescription the doctor wrote for the lyrica. Which I am now addicted to the hydro and trying to taper. Is it unusual that I have gone a couple of months with no pain, only have back pain periodically, which I think is from being overweight?

562833 tn?1233756109
by girly44, Jul 20, 2008
I was diagnoised with fibromylagia as well. At 13 I was hosiptalized with an unknown condition. I spent a week and a half in the hositpal with no explanation, what had happened to me. Now at 27, it happened again. pain all through my body, couldn't walk or move. I was in the most pain in my life. The pain continued unitl I was diagnoised with Fibro. and they put me on lyrica, and hydro. A couple of months later, the lyrica got too expensive for me so I went off of it. The pain has still not come back, but I loved the way the hydro felt and I continued taking it and throwing away the prescription the doctor wrote for the lyrica. Which I am now addicted to the hydro and trying to taper. Is it unusual that I have gone a couple of months with no pain, only have back pain periodically, which I think is from being overweight?

562833 tn?1233756109
by girly44, Jul 20, 2008
I was diagnoised with fibromylagia as well. At 13 I was hosiptalized with an unknown condition. I spent a week and a half in the hositpal with no explanation, what had happened to me. Now at 27, it happened again. pain all through my body, couldn't walk or move. I was in the most pain in my life. The pain continued unitl I was diagnoised with Fibro. and they put me on lyrica, and hydro. A couple of months later, the lyrica got too expensive for me so I went off of it. The pain has still not come back, but I loved the way the hydro felt and I continued taking it and throwing away the prescription the doctor wrote for the lyrica. Which I am now addicted to the hydro and trying to taper. Is it unusual that I have gone a couple of months with no pain, only have back pain periodically, which I think is from being overweight?

561921 tn?1216605621
by rosebud62, Jul 20, 2008
I have fibromylagia, and was wondering the best pain medication.  My doctor has given me so many different muscle relaxants, but do not seem to work,  I have a medicine cabinet full of medicine that does not do any good.  Any advice on other medication besides lyrica?  So far percoset is the only thing I am on, which does help.  Any advice would be appreciated.  
Thanks,
Rosebud

555458 tn?1215477526
by careylee310, Jul 20, 2008
Hi All -

My doctor, neurologist, looked at me briefly (10 minutes tops) and told my NP i could have fibromyalgia.  He didn't even examine me.  I do have all over pain which is worse in the morning.  He gave me gapapentin which does help me sleep during the night.  I don't know what else to do.  I live with this pain.  There is also muscle weakness, dizziness and i get off-balance at times.  Anyone out there have any advice?

Avatar universal
by mranxietyoftheeast, Jul 20, 2008
Girly44:

I'm also on Lyrica.  Just started this week.  What is HYDRO?

Thanks.

561921 tn?1216605621
by rosebud62, Jul 20, 2008
Hydro is hydrocodone, I believe that is what mranxietyoftheeast is talking about.  I take percoset, which is hydrocodone.  


554442 tn?1221235225
by fibromama, Jul 20, 2008
Percocet is Oxycodone,,,Vicodin is Hydrocodone

528396 tn?1217526013
by Melissa70817, Jul 21, 2008
I consider my life now with Fibro, my new life, I do however have very fond memories of my "old" life.  I wish I could have my old life back.  Once I started with the pain of Fibro it never went away, it stayed and grew.  Today my life is nothing compared to what my life once was.  It has turned me into someone I don't know anymore.  The pills, the depression, the pain, the aggravation, the stress, it all seems too much sometimes.  When you say no marathons that is funny.  I spent a day last week at the hospital where my ex's wife had her baby.  I was there pretty much all day. I suffered for 2 days, the pain was so horrible just from me walking the hospital.
I do fudge, I smoke ( I would love to quit but that is the only thing that I have that is enjoyable anymore), I drink 2 cups of coffee a day, one in the morning and one in the afternoon the rest of the  time I drink water. I haven't drank alcohol in 3 years, drinking makes me hurt even worse.  I have tried every drug on the market and nothing helps or it might help but gives me panic attacks or anxiety attacks on top of the ones I already have so I can't take it.  The only thing that works for me are the opiates and the soma and they are working less and less each day.  The antidepressants make you gain weight which put more pressure on your joints which make you hurt worse.  We are all in a catch 22.  Its sad to know there are this many of us with this condition and half of the people who don't have it don't believe it is real.  I know I have a thyroid problem as well but I don't believe that thyroid medication is going to be my cure.  It might help with some of my symptoms but not all.  I would love to be able to get up and clean my house, walk for 5 minutes without squatting every few minutes because I feel like I'm going to pass out, oh, and to cut my grass again, that would be wonderful.  It is so high at the moment it is at my knees.  This has changed my life but I'm still alive!!!  If we all stick together maybe we can find a cure.  I love MedHelp and most of the people here.  For once in my life I feel understood.  I am thankful I met you Fibromamma, you have been there for me the most and I truly appreciate it.  

554442 tn?1221235225
by fibromama, Jul 21, 2008
Thank you so much Melissa and I feel the same about you.  Without you I would still be suffering a certain problem as well as my daughter,,so I thank you and am glad we found eachother here on Medhelp.  I do to smoke I actually slowed down for a while but started strong again about 3weeks ago,,,shame on me lol.  I do drink coffee also everyone once in a while I get a carmel frapp from Starbucks.  

We cant completely give up our lifes daily pleasures to please this syndrome.   I have given away to much of my life and lifes pleasures as it is for this "Fibro"  Im sick and tired of being sick and tired.



566031 tn?1216696517
by Kabl, Jul 21, 2008
I suspect I have Fibromyalgia as i have pain pretty much everywhere and have probs sleeping mainly due to pain in my legs. I also have an underactive thyroid.However I have found acupuncture helps give me more energy and lessens the pain a little.

554442 tn?1221235225
by fibromama, Jul 22, 2008
kabl,,,,its always nice to hear when someone can find a non-narcotic way to pain relief.  Anythings worth a try when your in pain.  

528396 tn?1217526013
by Melissa70817, Jul 22, 2008
Is the acupuncture expensive and how long does it last, how often do you have to go?  I'm so sick of taking these pain pills and muscle relaxers.  I would love never to HAVE to see one again!

Avatar universal
by Kitty8675309, Sep 18, 2008
Hey, i'm just wondering if I could have something like Fibromyalgia (maybe CFS?). I'm 14 and I have severe head-aches, dizzyness, loss of interest in almost everything I do, un-satisfied tiredness that never goes away, you name it. The frusterating thing is, my doctor cals it, "just going through adolescence".If every teenager feels like what I go through every day, then teenager-hood is WAY tougher than anyone told me..... I've been sooo tired ALL THE TIME, and doing the schol play already seems to wear me out, although it' ony 3 1/2 extra hours a day. My homework can barley get done, and if I'm lucky enough to finish it, it's still not done as properly as it should have been. what can I do to help my life be a little easier? Or is my life just gonna go down the drain? Somebody help me please!

Avatar universal
by PlateletGal, Sep 18, 2008
"It's a common misconception that fibromyalgia is an inflammatory or rheumatological condition, but it is not."

This is a statement from one of the excerpts above in the original launch post. I disagree with this statement. There are many fibromyalgia patients who have a Th1 inflammatory illness.

It will be great to have Dr. Nicholson with us in early October to answer all of our questions. There is so much information about these illnesses coming out every single day.

Best,

PlateletGal


356518 tn?1322263642
by sandee1818, Sep 19, 2008
PlateletGal
I agree with you 100% :)

Avatar universal
by PlateletGal, Sep 19, 2008

It is bizarre because CFS patients have the lowest sed rates. I know it used to frustrate me to no end that I KNEW I had inflammation and yet my sed rate was only 2 !!!  Paul Cheney, Ph.D. explains why this is.... it is very confusing for me, but perhaps when I'm not so brain-fogged, I'll figure it out :



"The best endogenous scavenger of nitric oxide is hemoglobin. [Hemoglobin: the "red" in red blood cells—a protein that transports oxygen from the lungs to the tissues.] "When hemoglobin scavenges nitric oxide, the nitric oxide bends the hemoglobin, causing the red blood cells to deform. Dr. Les Simpson in New Zealand found that the red blood cells of CFIDS patients were deformed, and when they're deformed they can't get through the capillary bed very well and can cause pain."

"An indication of this [RBC deformation] is it also drops the SED rate. CFIDS patients have the lowest SED rates I've ever recorded, and the ones with the lowest SED rate may have the greatest degree of pain." [SED rate refers to sedimentation rate, and is listed as ESR on many lab tests.]

"Do you know what your SED rate is by chance? Normal for you would be 15 plus or minus five. That's according to the British literature. A female your age has a higher SED rate than children and males. And you're probably down around 0 to 3. Which means you have Nitric Oxide binding hemoglobin, and therefore you have an induced hemoglobinopathy [a problem with the hemoglobin—nitric oxide bends it], and red cell deformation, and a low SED rate on that basis."


source:  http://www.dfwcfids.org/medical/cheney/heart04.part2b.htm




Avatar universal
by PlateletGal, Sep 19, 2008

And this:

In the Laboratory Textbook of Medicine, there are only three diseases that lower the SED rate to that level. One is Sickle Cell Anemia—a genetic hemoglobinopathy. The second is CFS—an acquired hemoglobinopathy (acquired by Nitric Oxide binding). And guess what the third disease with a low SED rate is? Idiopathic Cardiomyopathy!

(same link as my post above)


356518 tn?1322263642
by sandee1818, Sep 19, 2008
Thanks for the information and links!
I was arguing the same but had different articles awhile back. I wish I had had these links:)

611067 tn?1458591483
by HelpinUtah, Sep 19, 2008
I also have been diagnosed with fibromyalgia.  I was diagnosed last Fall.  I was using Lortab last year for a couple weeks for the pain, but it didn't work and so I was switched to Lyrica, which caused me lots of problems and I missed quite a bit of work from the Lyrica.  Eventually, I did some research on natural ways to combat the pain.  For me, the combination of Magnesium and St. John's Wort works for me!  Thank goodness.  However, my fibro pain came back following my withdrawals from Lortab and it hasn't been fun.  Now that I can take the St. John's Wort again, I'm hopeful I'll get back to not having the fibro pain.  By the way, my doctor suspects I ended up with fibromyalgia due to Lyme Disease that I had several years ago.  

Good luck everyone!!

Avatar universal
by leperson, Feb 03, 2010
I was diagnosed with CFS/Fibromyalgia and initially experimented with narcotics for the pain through my doctor (I was gradually disabled by pain).  The pain was far worse once the drugs wore off, which also was true with Lyrica and everything else under the sun.  This is been going on for five years plus, and maybe I am unusual or have developed a high threshold for pain, but the anti-inflammatory drugs like naproxin sodium (like brand name Alleve) and ibuprofen are the only drugs that work satisfactorily for me.  I usually wait too long, until I can hardly bear it and certainly can't sleep--200 mg. of ibuprofen usually takes the extreme edge off so that I can move or sleep, and 400 mg. of naproxin sodium.  This may be because I didn't take many doses of the narcotics, Lyrica and others, and so didn't become dependent on them, but also didn't experience the full benefits.  I didn't like being intoxicated all of the time and needing to take a little more the next to get the same benefit of pain relief.  So I chose pain, some relief from the extreme pain with NSAIDS, and still have a somewhat clear though fibro-fog mind.  I know people that absolutely do not have the experience with NSAIDS that I have had and are in such pain that the only relief is through narcotics.  Some people, taking Lyrica, for example, only experienced intoxication for a short while in the beginning and then it passed.  So, it seems to be very individual.  Also, beware, do not lie down for 30 minutes after taking either ibuprofen or naproxin and have with a lot of water and food--some people have problems with ulcers in the stomach and esophagus when taking them.  A really clean diet, lots of good water, a good multi-vitamin (includes B12 and magnesium and potassium) has helped me--I had tests to check for deficiencies.  Pain is actually better when I avoid sugar and saturated fats and STRESS.  Unfortunately, I'm far from "normal" but these things help so that it's better.  A friend uses prescription guaifenesin for pain and it helps her tremendously.  I've never tried it.

Has anyone been following the research on XMRV (retrovirus)?  Dr. Mikovitz of the Whittemore Peterson Institute for Neuro Immune Research in Reno, Nevada, may have, with the help of her cancer research colleagues, pinpointed the culprit in CFS/FM/ME, a retrovirus (www.wpinstitute.org).  Still much research to be done.  They have ongoing research studies with sign-up forms on their website.  Drug companies may be getting on the wagon soon also with investigational studies.  Dr. Mikovitz's research is on the October 2009 issue of  "Science" Magazine.  

Some good websites for general CFS/FM/ME info are:  www.prohealth.com/me-cfs/basics, www.fm/cfsme.com, www.cfsfm.org, www.cfids.com.    

From my heart I hope that each of you find answers that help you, and I pray for ongoing research to heal us of this debilitating disease!  Especially children.


Avatar universal
by leperson, Feb 03, 2010
lllll

Avatar universal
by marthasdad80, May 16, 2011
I have fibromyalgia and like most sufferers never realy have a day off. I recently fell in our shower room and think that in some way this has stirred up my fibro further. I have constant pain in my lower back , upper legs and around my lower rib cage. Has any one had anything similar to this?
Also my better half is constantly reminding me how much my illness is effecting her and what she could have done but for me, does that happen to any one out there and how do you cope with it. I'm 65 and too old to run away although I often feel like it.
RCA

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