fibromyalgia

I know that there is a fibromyalgia form on here but it doesn't seem to get much activity. I posted my questions there but decided to post them here just in case any of you might have some ideas for me. Here is a cut and paste of what I put on that forum. Any advise will be helpful.

Hi-

I am new to the fibromyalgia part of this website, but a long time member of the lap band site.I recently found out I have fibromyalgia, but have suspected it for several years. My PC wouldn't really talk about it. So I finally broke down and went to a pain clinic, the probem with this is that the pain clinic want 6 grand to treat me, most, if all won't be covered by insurance. Not gonna' happen.

My most troubling symptoms are headache, lots of times dibelitaing migraine headaches, muscle pain and tiredness. I have been taking Cymbalta (which i know is one of the meds they use for pain with fibro) I also take Gabapentin for my headaches wich really only takes the edge off. My dr. did prescribe muscle relaxers for the muscle pain. They make me even more tired.

I was wondering what other people take to help with their symptoms. I would love to know of some natural stuff that works....

Thanks for your help.

have your Dr give you a Rx for Metanx (for diabetic neuropathy but works amazing for my fibromyalgia) I take that along with my Neurontin and it helps tremendously.

http://www.metanx.com/

I was diagnosed with fibromyalgia & myofascial pain syndrome in January 2010. I too went to a pain clinic, but I never went back, not because of the money but because it looked like a pill mill to me. They didn't seem at all interested in finding out what was causing my pain and scheduled me for some kind of spinal injection before even seeing the results of my blood tests and MRI.

My PCP was useless in my search for diagnosis and treatment. I also saw an orthopedic doc, a rheumatologist and a chiropractor, tried physical therapy, homeopathic treatment, acupuncture, and took an NSAID and chloroquine for about a month. Of course I also tried OTC meds which did absolutely nothing. I was still in pain and sick to death of hearing remarks like, "What do you expect at your age?" Finally I found an internist who took me seriously and prescribed amitryptiline (a tricyclic antidepressant with a sedative effect, to help me sleep) and tramadol (an opiod pain killer) for the pain. If I take the tramadol faithfully, the pain is much less bothersome, and when I sleep better, I experience less pain and can better deal with the pain I do have. I don't experience any side effects from either medication. The tramadol doesn't make me "high" - all it does it reduce the pain. I'm sure I'm habituated to it by now and would have to taper off slowly if I were to discontinue using it, but other than that, it's a godsend.

If your PCP won't talk about fibromyalgia, it may be due to ignorance (or possibly the misconception that fibro is all in your head), so if I were you, I'd tell your PCP something like this: "I need more specialized information and treatment for my fibromyalgia. Would you please give me a referral to an appropriate doctor?"

Jean

I will have to ask about the Tramadol   I however never sleep even when I take ambien :(

Jessica

Jessica,

From what I've read, even when Ambien works, it doesn't produce restorative sleep. It's something about how much time you spend in each stage of sleep. But restorative sleep is absolutely crucial for fibro patients (also important for obese patients).  And Ambien is habit forming and causes some people to sleep-walk or sleep-eat (the sleep-eating has happened to me several times). So I highly recommend trying the antidepressants (amitryptiline or trazadone) for better sleep, along with some kind of pain med. You will be amazed by how much better you feel when you sleep better.

Jean

I too have fibro. I use Cymbalta (I was on 60mg). but since early Aug I have been miserable so the doc that does the injections for the severe arthritis in my spine suggested I up it to 90mg. It is helping.

I know also, that exercise is extremely important in fibro patients. Aerobic exercise is especially helpful. The thing is, though, according to a physical therapist I was seeing, where a normal person can go great guns we have to adapt what we do and make it gentler. We are also supposed to rest more but we all know how that works. Rarely happens.

I had/have the fairly typical sleep problem that is associated with fibro. I was sleeping but not getting restful sleep. The sleep doc gave me the old tricyclic antidepressant Trazedone. He told me to experiment with between 1 and 3 tablets. He said he has 350lb. football players that are blown away by just one tab. then he has 95 lb. 85 year old women that have to take all three. I had a little hang over effect for a little while but that goes away quickly, so I worked my way up and have found that I do my best at 3 every night. Now I am sleeping better and not so dragging tired as I was. However, there are just days where I can barely drag along. You have to allow yourself to get some extra rest on those days.

Like Jean I also use the tramedol along with 1000mg. of tylenol. If the pain is really severe I use a narcotic med, too. It depends on how severe the pain is as to how much I take at a time. Sometimes just one/half of one Vicodin plus 500mg. tylenol is enough. You MUST be aware of acetaminophen being in a bazillian products and never take more than the suggested amount. Also pay attention to how often you can take it.

I find really hot tub soaks ease the pain. If you have nausea with the migraines try motion sickness pills. It sure seems like I am pushing pills but honestly, I don't use everything all the time except the trazedone at night and my Cymbalta. I can sometimes take the pain of a migraine if the nausea is controlled. I am not a frequent migraine sufferer, but my daughter had intractable daily drug resistant migraines. For about a year before she died (another long story) she was using an OTC product called Head On. It helped to maybe take the pain down to a dull roar. She was in constant daily pain but it could get a little more manageable. She also had fibro.

As Jean said, work that requires a lot of standing tends to make it worse as does getting cold.

Experiment, join an on-line fibro forum that is active. Oh, and sometimes meditation and/ or biofeedback gave my Cheri relief from some of it.

A lady I know from our community cannot tolerate anything with regular flour and has to use spelt in place of it. It works for her.

I am not really familiar with the "natural stuff) but there are some on the main forum who are very knowledgeable. Try posting there, too.

Good luck, I hope you find something that works for you. Just don't overeat or resort to comfort food just because you feel wretched. We all fall into that trap sometimes but we can't afford to fall into that trap.
Sue

Well welcome to the one club nobody wants to be in! I didn't used to like to take many meds but I find the older I get the more I need! Specifically for my fibro I take 60mg cymbalta(I think I need to up it tho cause not helping much lately), 30mg oxycodone 3x a day and 5 mg. morphine every 6 hrs. I also found that 50mg of dyphenhydramine helps me sleep better which helps too. I think Jean covered eveything pretty well, it's a miserable disease to have and there are docs out there who know how to treat it, you just have to hunt them down.
You also have to learn to make pain your friend because its GONNA be there forever! First you have to accept that, then learn to live with it and not fight it. The pain gets worse the more you let it get you down and the more you focus on it. I just got back from shopping and am exhausted but it still has to be done no matter how bad I hurt so I JUST DO IT!! You have 2 choices, you can curl up in bed and never move again or you can learn how much you can do at a time and keep plugging along. I can't just sit in bed and let the disease beat me. Like Jean my body has adjusted to the narcotics so I can function normally on them without getting too sleepy, but everyone is different. If youy have any particular questions I can help you with feel free to PM me, I'm happy to help if I can. I wish you strength and peace with this new change in your life!

I take Lyrica and Tramadol three times per day. Water aerobics is one of my most helpful pain relievers. I also have sleep apnea with my fibro sleep problems, sometimes I take oxygen with my cpap machine. Change of weather or barrometer is my worse enemy, besides stress. I think the invisible symptoms of fibro are among the hard to take symptons. I spent several years being told it was all in my head. So a knowledgeble Dr. is a life saver.