Fibromyalgia -- Need help on how to handle severe pain

Posted by ripley @ripley, Jun 14, 2023

I was told by a Rheumatologist last year that I have Fibromyalgia. She referred me to my GP for treatment, but he doesn't know anything about this disease. I need advice on how to handle the pain which is sometimes so severe and lasts all day. It usually eases some by bedtime, but lately I've been waking up about 3:00 AM with bad legs pains that keep me from falling back asleep. Since this started 18 months ago, the pain has gone into remission for a few months and flares up again for a couple months. The insomnia and other issues remain. My latest flare started about 5 weeks ago. The only meds I'm taking are Tylenol, which doesn't help, and sometimes Cyclobenzaprine at night. I am afraid of Cymbalta after hearing horror stories about terrible withdrawal issues when wanting to discontinue it due to it's side effects or when it stops working. It seems like all the drugs used for this disease have withdrawal problems. Any help would be appreciated.

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@ripley

I went to the Nura Pain Clinic in Coon Rapids MN for neck pain and headaches, before I got Fibro. I was not impressed. The room where I met the Dr was very dirty. The only thing they offered me was nerve ablation, which I thought was a severe first step in treating my pain. Maybe you have different issues and they can help you. Later, for Fibro, I went to Twin Cities Pain Clinic. They signed me up for medical marijuana and prescribed low dose naltrexone, both of which aren't helping me. Dr said they don't prescribe medications for pain or Fibro. They are more involved in "procedures", injections etc.

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That pretty much says it. Thanks for the info.

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@stephanieml

Hello and I'm sorry you've found so little help with the flares! My dosage of gabapentin is 1200 mg daily and I've never had any problems with side effects, other than sleepiness, but even that regulated pretty soon once I became used to the medication. Much better results with the pain without the dreadful side effects I had with Cymbalta. I'd say it cuts my pain on most days by about 75% but not always, especially during the Minnesota winter. But I've talked to plenty of people who had very little luck with gabapentin so if it doesn't work it would be one more disappointment for you to have to contend with, but I guess how do we know until we try. Oh, and the gabapentin really helped me to sleep better too, as I see you've mentioned sleep. What was your pain specialist willing to do for you to help address your pain?

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How long have you been taking gabapentin? Did you start at a low dose and slowly work up to 1200mg a day? Also, how many times a day do you take it? I don't like the side effects I've read about, but my fibro pain is severe and I need to try something.
The pain specialist signed me up for medical marijuana and low dose naltrexone, but of which aren't helping yet. I'm trying to find the right dose of MM and the LDN worsened my insomnia so I stopped taking it for now.

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I’ve tried Opioids and they don’t help with the back spasms. Takes 3 hours for the Nuycenta er 100 mg to get into my system. Then the pain relief lasts for about two hours. So since it’s a q 12 hour dose I go 7 hours before I take another. Plus the cost of this very expensive Med has recently dropped put me in the donut hole and my co pays are$250/ month. I can only afford to take 1/day now.

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@ripley

How long have you been taking gabapentin? Did you start at a low dose and slowly work up to 1200mg a day? Also, how many times a day do you take it? I don't like the side effects I've read about, but my fibro pain is severe and I need to try something.
The pain specialist signed me up for medical marijuana and low dose naltrexone, but of which aren't helping yet. I'm trying to find the right dose of MM and the LDN worsened my insomnia so I stopped taking it for now.

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I've been taking gabapentin for fibromyalgia pain since 2018. I started with 600 mg at first, and slept like a baby for the first time in years. I wouldn't say that the sleepiness increased with it, in fact it's been better probably because I can sleep through the night more often. It also helped tremendously with the awful restless leg syndrome that had me wanting to walk up the walls throughout the night. One thing: I did need an up in dosage two winters in, when we had a really bad winter and the pain heightened quite a bit. The doc right away upped my dosage to 1200 mg a day, half of it at night and the rest at 2 different times during the day, and the relief was impressive. I still have rough days about 2/3 of the year, mostly related to the weather, but I'll never go back on duloxetine after using gabapentin. With fibromyalgia, there's just no fixing this, and still trying to deal with the hand we've been dealt. But I've had virtually no side effects at all from the gab, for me it's been like a miracle drug at times.

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@ripley

How long have you been taking gabapentin? Did you start at a low dose and slowly work up to 1200mg a day? Also, how many times a day do you take it? I don't like the side effects I've read about, but my fibro pain is severe and I need to try something.
The pain specialist signed me up for medical marijuana and low dose naltrexone, but of which aren't helping yet. I'm trying to find the right dose of MM and the LDN worsened my insomnia so I stopped taking it for now.

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Also, I was a medical marijuana patient for one year before I discovered the gabapentin. I'd say it was somewhat helpful with the pain and sleep problems but it just wasn't affordable.

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@stephanieml

Also, I was a medical marijuana patient for one year before I discovered the gabapentin. I'd say it was somewhat helpful with the pain and sleep problems but it just wasn't affordable.

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Have you had good results from the medical marijuana? If so, can you share what works for you? I am in our state's MM program but haven't found what product and dose help for pain. Thanks.

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Massage always helps with fibro. Exercise, like yoga/pilates/isometric really helps fluids flow and muscles to relax. For leg pain, I take Magnesium. I notice my legs are better if I have been active during the day. I do edema massage (toes to torso), lean legs upright against the wall for 20 minutes, use heat and/or cold packs. If you stay in bed resting, you will definitely lose strength and feel worse. My pain clinic gives me Percoset (5 mg oxy; 325 Tylenol) and I take it at night. It usually helps me sleep longer. I did get a medical marijuana card and take 5mg of 1:1 Indica gummy--both help relax the "clenching" of muscles so I sleep better. I take it at 10pmish and it is usually gone by the time I awaken. If you do wake up, do not take more. Instead, chamomile tea and saltine crackers will be enough for you to become sleepy again. Do request PT and go to a sole proprietor who specializes in EDS/hypermobility and has you do exercises and then gives you an adjustment. I mean the hot towels and machines are nice in the other places, but one needs stretches for the future. Online, I look at Dr Jo for periodic aching areas. Make sure you stay hydrated, too.

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@ripley

Have you had good results from the medical marijuana? If so, can you share what works for you? I am in our state's MM program but haven't found what product and dose help for pain. Thanks.

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I would say the MM results were fair but it's been several years now since I've been with the program so my memory on what, how often etc may be a little foggy. I used to fill my prescription at the Rochester dispensary and as I recall I mostly used their green or yellow formula in capsules, or cartridges for vaporizing (the colors correspond to the level of THC, and the colors I was using were mid-level in the amount) they also had some with CBD but as I recall those were quite expensive. I know that none of my doctors at Mayo seemed to be supportive of it, but that never surprised me.

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@marye2

Massage always helps with fibro. Exercise, like yoga/pilates/isometric really helps fluids flow and muscles to relax. For leg pain, I take Magnesium. I notice my legs are better if I have been active during the day. I do edema massage (toes to torso), lean legs upright against the wall for 20 minutes, use heat and/or cold packs. If you stay in bed resting, you will definitely lose strength and feel worse. My pain clinic gives me Percoset (5 mg oxy; 325 Tylenol) and I take it at night. It usually helps me sleep longer. I did get a medical marijuana card and take 5mg of 1:1 Indica gummy--both help relax the "clenching" of muscles so I sleep better. I take it at 10pmish and it is usually gone by the time I awaken. If you do wake up, do not take more. Instead, chamomile tea and saltine crackers will be enough for you to become sleepy again. Do request PT and go to a sole proprietor who specializes in EDS/hypermobility and has you do exercises and then gives you an adjustment. I mean the hot towels and machines are nice in the other places, but one needs stretches for the future. Online, I look at Dr Jo for periodic aching areas. Make sure you stay hydrated, too.

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I get such release from intense pain by lying on the floor and scootching my tush up against the wall, with legs raised up and resting on wall. I stay like that for about 15 minutes, eyes closed, arms relaxed on the floor, and using imagery to envision pain being released from the toes traveling down the legs, into my pelvis/hips/lumbar spine, etc. all the way to my face and scalp. I'm a nice, melted and relaxed marshmallow, feeling great relief. Slowly scootch back away from wall, carefully get myself to a sitting position, from which I carefully get up. Legs feel so much better, although not all pain is gone. I have collapsed vein valves in my legs, which from time to time brings nasty pain from thighs down to feet. I've found that doing this helps with that type of pain. A killer when it strikes up the fibromyalgia pain along with it!
I do self-massage on legs/feet, and have a roller on which I roll each foot to feel awesome release on soles of each foot.
I agree with you about the magnesium supplement, which I take nightly along with extended-release alpha lipoic acid, prescribed cyclobenzeprine (10 mg), and 2 other prescribed meds (cardiac issues). Agree on the hydration also, as well as not being immobile. Stretching exercises in the evening greatly help, but I also engage in some daytime exercise/activity also even if for no more than 10 minutes (depends on how I'm feeling in general). I am kind to myself though, and if my body is indicating that I should lie down, I do so. The key is to find what works best for you, tweak the plan as needed, and allow yourself to rest if needed.
I taught for nearly 25 years, standing the majority of the day. One doctor told me that having done all that standing contributed to the collapsed vein valves and pain issues on the tops of my feet. Had I known back then🤔....oh well, it was my way of being able to navigate the entire classroom and see how my students were doing, and an essential component of my teaching style, so it is what it was😁....

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@delia74

I get such release from intense pain by lying on the floor and scootching my tush up against the wall, with legs raised up and resting on wall. I stay like that for about 15 minutes, eyes closed, arms relaxed on the floor, and using imagery to envision pain being released from the toes traveling down the legs, into my pelvis/hips/lumbar spine, etc. all the way to my face and scalp. I'm a nice, melted and relaxed marshmallow, feeling great relief. Slowly scootch back away from wall, carefully get myself to a sitting position, from which I carefully get up. Legs feel so much better, although not all pain is gone. I have collapsed vein valves in my legs, which from time to time brings nasty pain from thighs down to feet. I've found that doing this helps with that type of pain. A killer when it strikes up the fibromyalgia pain along with it!
I do self-massage on legs/feet, and have a roller on which I roll each foot to feel awesome release on soles of each foot.
I agree with you about the magnesium supplement, which I take nightly along with extended-release alpha lipoic acid, prescribed cyclobenzeprine (10 mg), and 2 other prescribed meds (cardiac issues). Agree on the hydration also, as well as not being immobile. Stretching exercises in the evening greatly help, but I also engage in some daytime exercise/activity also even if for no more than 10 minutes (depends on how I'm feeling in general). I am kind to myself though, and if my body is indicating that I should lie down, I do so. The key is to find what works best for you, tweak the plan as needed, and allow yourself to rest if needed.
I taught for nearly 25 years, standing the majority of the day. One doctor told me that having done all that standing contributed to the collapsed vein valves and pain issues on the tops of my feet. Had I known back then🤔....oh well, it was my way of being able to navigate the entire classroom and see how my students were doing, and an essential component of my teaching style, so it is what it was😁....

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Do you take the cyclobenzeprine every night? I read it should only be used for no longer than 3 weeks. My current PCP is reluctant to provide me enough pills to take every night even though I try to only take them when my night time pain is severe enough to interfere with my sleep. I also started a stretching routine in the mornings. Thanks.

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