I am nearing the end of my rope. I have learned through multiple hospital visits and stays that I am allergic to the primary fibro meds. My primary dr has me on maintenance lortab six times a day to 'function' though my idea of functionality must be different. I have pleaded with him to fjnd nonnarcotic solutions to my constant pain and other fibro symptoms (balance, odd gait that makes me stumble, noise sensitive, exhaustion, lack of sleep, locking shoulder joints, fog, etc etc etc). He responds with....'why mess with what is working? But we can reduce the lortab. ' hold the f'ing phone. You won't find alternative treatment....but instead stop what you claim works? Makes nooo sense. I have been on the same meds for three years and we should just stop the med without a plan of something else? There HAS to be other non narc options that will WORK.
I AM TIREDDDDDDDD AND I HURT...... mmkay. Done venting.
I have found water aerobic really helpe me when I could find an indoor pool that was warm enough like 84 85 degrees otherwise I ache too bad the next day. Just take it easy at first and sit I the hot tub or sauna if you can.
Accupuncture did not work, massage helps when I can afford it.
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There really aren't any effective medicines for fibromyalgia. All the beneficial effects are so marginal that it's hard to detect them, and the side effects are so bad that it feels like just adding extra side effects on top of your illness, without any relief.
You probably won't get rid of all those symptoms with either medical or alternative treatments, but you can build an arsenal of supplements and alternative treatmetns to address individual symptoms that are the most troublesome.
We have found accupuncture and massage to be helpful for pain and stiffness.
Difficulty regulating temperature is a common symptom that can make you feel very bad, so keep an eye on it, and if you think your temperature might be running too low, use warm drinks, warm clothing, heating pads, hot soaks, etc to get low temperatures back up.
Neural mediated hypotension is a common symptom, difficulty regulating blood pressure when you stand, etc, and can contribute to dizziness, clumsiness, etc. Increasing salt intake can help to increase overall blood pressure, so that your lowest blood pressure dips aren't so low. Pink Himalaya Salt is the healthiest way to add more salt. check to make sure you don't have high blood pressure first, though.
Research indicates that fibro is related to immune disorders. One recent research pointed to low levels of cytokines in fibro patients. Stanford has had some good results with small studies of Low Dose Naltrexone in fibro patients. LDN modulates the immune system. It is a very safe, older drug, very inexpensive. Many doctors are not familiar with prescribing it as low dose, and those who can't find a doctor to do it sometimes order it off the internet from pharmacies such as River Pharmacy, and manage their own treatment.
For sleep disturbances, try sustained release melatonin (5-6mg). Also, L-Tryptophan 1.5-3 grams is very helpful for sleep.
Depending where you are, you might consider medical marijuana. Fibro patients' opioid receptors don't work very well, which is why typical pain relievers don't work well for us, but there is no indication that cannibinoid receptors are impaired in fibro patients. There are good indications that cannibus can help to relieve pain and nausea.
Vitamin B6 is helpful for anxiety and sore/stiff muscles.
Vitamin D3 helps to boost the immune system.
Vitamin complex helps to boost energy.
Valerian and Theanine are helpful for anxiety.
And, of course, we keep plenty of icy hot and tiger balm around.
This post barely scratches the surface. If you google the symptom that is most troubling you, and include the term "supplement", you'll find more ideas for treating symptoms with alternative therapies.
My daughter, with pretty severe primary juvenile fibromyalgia, says that she feels better having increased fruits and vegetables, and decreased meats and grains in her diet. She also maintains regular light stretching and exercise, a lot of walking and some weightlifting, working to maintain her condition while being careful not to push herself into a flare.
And, of course, adaptive pacing -- adjusting your life to reduce the demands on you while accomplishing those things that are necessary or most rewarding. In my daughter's case, we switched to a virtual school that allows her more control over her schedule, so she can work during the times of day when she is most up to doing it.
Best wishes. I hope you find some relief.
Last edited by moderator2; 01-21-2013 at 02:29 PM.
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