Fibromyalgia

jazzmynn1 · Post by **jazzmynn1** » Wed Jun 03, 2009 9:33 pm

Ok, here goes. I have been diagnosed with sleep apnea months ago and am on cpap.
Meanwhile, I have had pain and my doctor says I have fibromyalgia. I also understand this is common in sleep apnea pts.

I was put on savella a new drug for fibromyalgia, but I got bad hot and cold flashes so I quit taking it. Ironically I have had these spells before the medicine but not as bad.

Does anyone else have fibromyalgia and do you get hot/cold flashes? Also, what do you do for the fibromyalgia?

Let me know!

cassaro · Post by **cassaro** » Wed Jun 03, 2009 10:35 pm

Hi Jazzmynn1,

I have had a lot of patients who suffer from fibromyalgia and found that some suffered from hot flashes but it was more a function of age and sex. That meaning female between 45-55.
Fibromyalgia can be very painful and the best option for relief may sound a bit odd at first but stretching is your best option. Simple stretches are the best with little or no weight involved.

Hope that helps a bit,

Chuck

Juliebove · Post by **Juliebove** » Thu Jun 04, 2009 12:01 am

Yes indeed! Oddly, I found that my Fibro. was linked to my thyroid. I was diagnosed as being hypothyroid but was put on too strong of a dose of medication so was essentially made hyperthyroid. Any little thing would cause a hot flash. It was horrid. I couldn't make a quick trip to the store for three items without sweating!

I was living in Northern CA at the time and the temp. was mostly in the 70's. However, I could get chilled if I went to the park and sat in the shade. I did try to avoid the sun so as not to overheat. But if I got too cold, I got bone chilling cold and it could take hours before I could get warm again! I had stacks of blankets in my van and also in every room of my house. I also kept lots of blue ice and little fans around to help me cool off.

Now I am off of the thyroid meds and occasionaly checks indicate that my thyroid is in check. I do not generally get cold any more and if I do, it doesn't really bother me too much. I do overheat easily and always have.

Another big difference is the pain level, muscle cramping and muscles locking up. These things are pretty much totally gone. I do have to be careful not to overdo. If I do, I will have problems. But not like it used to be. Used to be a flare would take two weeks to ease itself away. Now I might just have trouble for a day or two.

I also have trouble with getting winded but it's not nearly as bad as it used to be. Used to be I couldn't take a flight of stairs without needing to rest.

Trinity101 · Post by **Trinity101** » Thu Jun 04, 2009 12:02 am

Hi- I am now 58, but when I was younger and still having hot flashes with monthly cycles, I read on a fibro site about using guaifenisen for symptom relief. So, I tried it- and found it to be very helpful. At the time, I took the amount suggested on the site, and when I had a really bad flare,I doubled it. I am sorry that I no longer have the site bookmarked- but if you search the two together, you could find if it is still a suggested treatment. It helped me immensely. I was able to stop it for a long while and did not have any symptoms until recently.Right now is more the pain type symptoms.
If you do find they still recommend the guaifenisen, you can buy it in larger quantities online and it is alot cheaper than the brand names are. I recently started taking it again because it is much cheaper and had,for me, no side effects at all that I could tell.It also made my fingernails grow so well-a small thing,maybe but when my fibro is acting up,they break all over the place. Good luck.
~joan

Yoda · Post by **Yoda** » Thu Jun 04, 2009 12:27 pm

HI Jazzmynn1,
I have fibro. I think the hot flashes may be a "time of life" issue for me... I do think there is a relationship between sleep and the pain. The best thing I do for my fibro is swim. Moving in warm water helps more than anything else.

I take Doxepin (a tricyclic antidepressant) Tramdol and Baclofen (as needed for pain and muscle cramps) for the fibro. I have been prescribed the Lyrica, but I am afraid to try it. I took Cymbalta and had one of the life threatening reactions - so I am a little medicine shy right now! Savella is almost the same medicine as Cymbalta. Cymbalta has terrible withdrawal symptoms that include the cold flashes. Savella may be the same...

This has been one of the hardest years of my life. The pain and lack of sleep have been terrible. I have come to believe that sleep is the key! I am beginning to sleep and feeling a little better. I hope you can to!

This forum has supported me greatly as I am learning to use the CPAP. It is a good place...

Cecile

danibm · Post by **danibm** » Thu Jun 04, 2009 12:42 pm

hi, yes i do believe i also have fibro & am on a wonderful fibro board as well they are very helpful there.
i do believe there is a link between sleep & pain. i had a car accident that caused my upper back pain, so i have had trouble wearing the mask because it causes me pain (neck.) i am working to get it all somehow fixed up. it's a long process. the best thing for the pain is gentle exercise, & i mean gentle.
as for the heat & cold thing i just have started to have trouble with gettin really cold all the time.
i've always been sensative to temp, but lately it's the kind of cold ya'll describe that is just bone chilling & takes time to warm up.

SaltLakeJan · Post by **SaltLakeJan** » Thu Jun 04, 2009 1:41 pm

HI, Jazzmynn1,
I saw the beginning of your thread, Re: Fibromyalgia, and I wanted to tell you that people do survive this beastly condition. I doubted I would ever see an end to the muscle spasms, trigger points, all-over-body-pain, depression, mental fog, sleepless nights, feeling as though a truck had run over every muscle in my body. This collection of symptoms is only part of the condition called fibromyalgia.

I led a Fibromyalgia Education Support Group for 13 years. We had a different medical professional speak to the Group each month. We learned how we could helped by physical therapists, psychologists, pain specialists, family counselors, etc. etc. What I learned about the resilience, and long-suggering of people reminds me of this forum.

Trying to treat Fibro, is like the story about 12 blind men, feeling different parts of an Elephant, and describing what they felt, rather than the whole animal.

Cecile, you are so right"

wrote:I do think there is a relationship between sleep and the pain. The best thing I do for my fibro is swim. Moving in warm water helps more than anything else.

The physicial Therapists who spoke to us endorsed mild exercise in warm water. It relaxes your tense muscles, will gradually increase your endurance, and if feels so good to be in the warm water it seems to lessen your pain.

Chuck, the physical therapists would agree with you also:

cassaro wrote:Fibromyalgia can be very painful and the best option for relief may sound a bit odd at first but stretching is your best option. Simple stretches are the best with little or no weight involved.

I found I could break muscle spasms by gentle persistent stretching. It helped relieve whole-body pain. If you don't have a a book on Stretching, your local library probably has several.

Joan, I never used Guaifenisen, but I have heard it recommended.

Juliebove wrote:Another big difference is the pain level, muscle cramping and muscles locking up. These things are pretty much totally gone. I do have to be careful not to overdo. If I do, I will have problems. But not like it used to be. Used to be a flare would take two weeks to ease itself away. Now I might just have trouble for a day or two.

julieabove

I wanted to second Julieabove' statement. After being plagued with Fibro for years, it lessened and I rarely have any of the old symptoms. If I do, like Julie says, a flare is gone in a day or two, rather than weeks.

And in our group the medical professionals were in agreement the Hot & Cold symptoms were more an a women's issue, rather than Fibro.

It a hard condition to live with, be gentle with yourself, don't overdo, do what exercises you can and regular warm water exercise helps with the symptoms.

Jan

Yoda · Post by **Yoda** » Thu Jun 04, 2009 8:36 pm

Jazzmynn1,
The following site has the best information I have seen on Fibromyalgia. It is a continuing medical education program meant for general practitioners seeing patients. It is somewhat technical, but it is a it helped me understand the condition and participate in the decision making about my treatment. I did not have any problems registering. You do have to pass a test on each section to get to the next, but I was so personally interested in the material that it was no problem. I learned so much from this program.

http://www.fibromyalgia-cme.com/

The wonderful members of this board preach learning and being involved in treatment. This is a way for you do do the same for your fibro!

Good luck - and find some warm water and get in it

Cecile

luke · Post by **luke** » Fri Jun 05, 2009 8:09 am

This site helped me a lot.....don't forget that Fibromyalgia is just a word that is used to describe symptoms.
I have had pain for years and when I used Dr. Sarno's methods I improved immensly.
YMMV .....

http://www.tmshelp.com/

Bill

Yoda · Post by **Yoda** » Sat Jun 06, 2009 9:06 am

Luke,
Can you give us a quick summary of Dr. Sarno's ideas? I did not get a good understanding from just looking at the website.

Thanks,

Cecile

crafty · Post by **crafty** » Sat Jun 06, 2009 9:21 am

My doctor told me that sleep apnea can be a direct cause of fibromyalgia. He referred to a study of patients who were sleep-deprived over a period of time (don't remember how long) - and a large percentage of them developed the clusters of symptoms known as fibromyalgia and chronic fatigue syndrome. Restoring restful sleep relieved these symptoms dramatically.

I have those symptoms, and my doctor has suggested that restorative sleep may ease or possibly even eliminate my symptoms. I'm still struggling with the CPAP but I am hopeful.

Richard

fuzzy96 · Post by **fuzzy96** » Sat Jun 06, 2009 12:29 pm

here is a link to the galufisen protocol . does it really work?http://www.fibromyalgiatreatment.com/

am really in need of something that actually works lyrica made me blow up like a baloon and have yet to take any weight back off.
and of course the extea weight mades the pain worse and of course extra tissue in the airway area made my osa worse.
am working on my pressures,leaks etc . but 8 hrs at work and i'm done. hard to loose weight when it hurts to move.

fuzzy96 · Post by **fuzzy96** » Sun Jun 07, 2009 4:03 pm

bu bu bu bump!

jskinner · Post by **jskinner** » Sun Jun 07, 2009 4:16 pm

crafty wrote:My doctor told me that sleep apnea can be a direct cause of fibromyalgia. He referred to a study of patients who were sleep-deprived over a period of time (don't remember how long) - and a large percentage of them developed the clusters of symptoms known as fibromyalgia and chronic fatigue syndrome. Restoring restful sleep relieved these symptoms dramatically.

I have those symptoms, and my doctor has suggested that restorative sleep may ease or possibly even eliminate my symptoms. I'm still struggling with the CPAP but I am hopeful.

Richard

I think there can a strong connection between the two. I went though a period of a year or more with terrible sleep-deprivation and developed terrible muscle pain which seemed fibromyalgia like. I also developed alpha intrusions in my sleep which I understand is common in people suffering from fibromyalgia. Getting the sleep restored has largely rectified the situation.

Clearly lack of sleep lowers the pain threshold. Lack of sleep also sleeps to induce muscle pain (probably something is not getting restored (my guess in sws) like it should)

Mask