Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
So long story short (will probably still be long) I was diagnosed at 18, and am now 31. For years I couldn't believe I "had" something that many people openly told me did not exist. I kept trying to associate my symptoms to other things or just trying to ignore them. I couldn't openly talk about having fibro to anyone.
By the time I was 26, I has been on over 20 different medications including cymbalta, trazadone, clonazepam, seroquel, Ambien, Lyrica. While I'm always in pain, the more disruptive symptom I experience the worst is horrible insomnia and constant exhaustion. But it wasn't until I recently took lyrica (I've since stopped taking it due to terrible side effects) that I was finally able to come to terms with the fact that I definitely have fibromyalgia. When I was taking Lyrica, for the first time I can remember, I didn't feel any pain. I didn't feel many good feelings either, but the best/worst part was realizing how much pain I've been living with for so long. Because when I stopped taking it, it all came rushing back and took my breath away. But now I'm left wondering...how do I live with this. Where do I start?
Ive been wanting to stop or reduce taking medication because I have it ingrained in me that taking medication isn't "normal" and that I should just do X Y Z and I'll be "better", but my doctor keeps putting me on more meds.
Can someone live med free with fibro? I feel like meds have become my norm and I don't know if it's...normal. Im pursuing medical marijuana but I'm nervous about the idea of weaning off all medications at the same time.
Just wondering if anyone has ever done this. I've quit all kinds of things before but this seems much harder because when you don't sleep, you become so desperate for it that you'll do anything. Take one more pill. Take 5. Call in sick from work. Anything. I don't know that I'm willing to go through not sleeping at all for a long while in order to get off meds...
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... observed a solar eclipse.
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Mornings or Nights?*You can’t say both (or neither), or add stipulations, or make substitutions- just commit and pick one of the two choices!
There is a wearable FDA approved device called Quell which can be effective too. I've had mine for over a year and like it very much. It works for all kinds of chronic pain except except migraines for 81% of the people that try it. There is a 60 day money back guarantee. It is not covered by insurance. Costs $250 plus the cost of electrodes every month. I understand that Quell is now an approved VA vendor if that helps at all. You can find it/order it online.
Have you considered having a sleep study done? Your muscles require deep,sleep in order to repair themselves from the days activities. No deep sleep means higher levels of pain. This is a critical part of managing Fibromyalgia. Figuring out what goes on during your sleep cycle could be very beneficial.
Some people like massage. Hot stone massage is great. I've done that once in awhile and it helps a lot.
Have you considered that your diet may be contributing to your pain levels? Deep fried food, artificial sweeteners including Splenda and food/wine with nitrates can ratchet up pain levels in people with Fibromyalgia.
I would not come off of a bunch of meds all at once. Rather, I might try one or two at the most and take it slowly. Make sure that your doctor is aware of what you are doing. Some medication can be very challenging to eliminate.
Good luck to you and take care.
I agree a sleep study could be helpful.
For pain, have you tried the basics - heat, ice, muscle rubs, bath tub soaks with epsom salts, hot tubs, pacing activities, tens unit , gentle stretching etc. The best physical therapy for me has been warm pool therapy.
There are ways to cope other than meds, but... if you have no quality of life, what's the point? As above mentioned by others, there's ways to ease pain from heat to yoga to tai chi to meditation to pills, and you can try to increase some methods while decreasing meds with your docs' help. But, ultimately, if you want ot try it, hey, that's your choice. Just do it wisely.
I often have day dreams about what would happen if I stopped taking my medications ( and there's so many ). What would happen? Then I jump directly into reality. A possible huge flare that could take weeks to get under control again! And losing weeks of my life. I dont want to do that. Ultimately I don't like taking meds but I want to live life! Do some fun stuff. My husband and I are sitting on our porch right now. Drinking tea. And it's lovely with a little wind and coolness to the air.
Ps. I have tried cymbalta and I couldn't do it. Even in a small dose. It causes such a brain fog. I assume lyrica also does. We are already fatigued and then these meds cause more tiredness and brain fog. I don't get it.
But I take medication for diabetes and RA besides pain medication. Nerontin is good for pain at night. It helps me sleep and I feel like when I wake up the next day it has lasting effects. The pain is calmer throughout the morning. Feel better!
So in response to the sleep study and to me expressing I'd like to go off meds or at least stop being prescribed more and more, my doctor has referred me for medicinal marijuana. I've already been self medicating for pain which she knew, and for the first time since being diagnosed I'm excited about a new treatment. Hopefully it'll help weaning off some if the other stuff I've been taking for so long that I don't see results from but am scared to stop.
Im also going to try acupuncture later this week! Interested to see the results. I agree completely that I want to live life while also trying not to feel like a pharmacy! I too worry that if I change something things will fall to pieces so whatever I do decide to do about the meds I'll have to do it very gradually.
Thanks again for taking the time to share your experiences
On eof my fave fibro treatments is to lie in the sun, about five-ten minutes per side. That's all. It's like a head-to-toe heating pad, plus your body gets some natural Vitamin D going, I live in the US SOuth, so wintertime temps dont bug me much. (Summer is far worse.) I did yoga 15 years, huge help. ANd I *love* acupuncture. A good practitioner? Oh, priceless. Totally helpful for me.