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

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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Three weeks to 3 months is a guideline, with time off it for a few months, then resuming as needed. Those are what you are referring to. But I've been on it for many years, 10 mgs nightly seven days per week. I have regular checkups with rheumatologist and primary care physician, as well as periodic cardiology visits and full blood work.
No issues. It is a muscle relaxant, so the one concern is not taking more than what is prescribed because (as one doctor said) the heart is a muscle and you don't want to create issues with that organ in particular. I can't take amitriptilyne. Was on it and had to be "weaned" and released from it. Can't take other usually prescribed meds such as Lyrica, Cymbalta, etc. So cyclo it is for me.

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I would take Life Seasons Relieve-R PM and Arnica. I also have Aches and Pains from Newton Laboratories. Muscle Ease from Newton Laboratories helps take away my Charlie horses. I hope you find relief. Tumeric or Curcumin is also great for pain.

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@ripley

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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This is a very strong muscle relaxant. I passed out after the first pill.

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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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I do "edema massage" of legs also--from toes to torso, until legs are less sore. But the wall trick is superb, and really helps other systems. I agree with you; learned great stretches in PT, but Dr Jo on youtube is pretty good if you have other issues pop up. So glad to find another person with same issues.

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@popolopo

This is a very strong muscle relaxant. I passed out after the first pill.

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What dosage was prescribed? Mine has been 10 mg consistently. I take one along with other prescribed meds (for other medical issues) and supplements.

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@delia74

What dosage was prescribed? Mine has been 10 mg consistently. I take one along with other prescribed meds (for other medical issues) and supplements.

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How long have you been taking Cyclobenzaprine? Do you take it throughout the day? I take 5-10mg, 2-3 nights a week when I'm having a flare, only if the pain is bad enough at night to interfere with sleep. I haven't tried taking it during the day, but some days I really need something to curb the pain. My PC Dr is reluctant to keep prescribing this for me, so I'm going to see a new Dr soon and hoping she will prescribe this for me as needed. I think Drs today are afraid to prescribe the pain meds we need. Most of them do not understand Fibromyalgia and have no concept of how much pain it causes.

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@ripley

How long have you been taking Cyclobenzaprine? Do you take it throughout the day? I take 5-10mg, 2-3 nights a week when I'm having a flare, only if the pain is bad enough at night to interfere with sleep. I haven't tried taking it during the day, but some days I really need something to curb the pain. My PC Dr is reluctant to keep prescribing this for me, so I'm going to see a new Dr soon and hoping she will prescribe this for me as needed. I think Drs today are afraid to prescribe the pain meds we need. Most of them do not understand Fibromyalgia and have no concept of how much pain it causes.

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As in prior posts: 10 mgs nightly seven days per week. I take it along with other prescribed meds and supplements about 30 minutes after evening meal. We have dinner anywhere from 5:15 to 5:45. One of those supplements is magnesium, another is alpha lipoic acid.
No, I do not take it during daytime hours. I'd wind up sleepy and non-productive. I would never consider taking a daytime dose.

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@delia74

As in prior posts: 10 mgs nightly seven days per week. I take it along with other prescribed meds and supplements about 30 minutes after evening meal. We have dinner anywhere from 5:15 to 5:45. One of those supplements is magnesium, another is alpha lipoic acid.
No, I do not take it during daytime hours. I'd wind up sleepy and non-productive. I would never consider taking a daytime dose.

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Thank you. How long have you been taking this nightly, as I read it shouldn't be taken long term? Did you have any push-back from your Dr before they prescribed this?

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@ripley

Thank you. How long have you been taking this nightly, as I read it shouldn't be taken long term? Did you have any push-back from your Dr before they prescribed this?

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I'll repost what I wrote in a prior response: Three weeks to 3 months is a guideline for this medication, with time off it for a few months, then resuming as needed. I've been on it for many years (since 1990's), 10 mgs nightly seven days per week. I have regular checkups with rheumatologist and primary care physician, as well as periodic cardiology visits and full blood work.
No issues. It is a muscle relaxant, so the one concern is not taking more than what is prescribed and okayed because (as one doctor said) the heart is a muscle and you don't want to create issues with that organ in particular. You can't just self medicate with this muscle relaxant. I can't take amitriptilyne. Was on it and had to be "weaned" and released from it. Can't take other usually prescribed meds such as Lyrica, Cymbalta, etc. So cyclo it is for me. I didn't request it of the doctor that diagnosed the fibromyalgia, she prescribed it. I've had three rheumatologists since then (two retired) and each approved of the medication and dosage. One was in private practice, had been an internist as well as a degree in pharmacology, and absolutely knew his stuff. Incorporated specific supplements to ameliorate issues like inflammation, Raynaud's and neuropathy, and emphasized the important role that nutrition has. I was so sorry when he retired, but he went on to teach at a medical college in NYC, using his wealth of knowledge and experience to impart onto future rheumatologists. Two of my former rheumatologists okayed taking more than one does if in extremely painful flares, but I found that I became a drugged zombie with inability to focus and stay awake the following day. So that is not something that I'd do ever again. One dose of 10 mg nightly is all I need. I am baffled by your doctor's adamancy. Perhaps he/she is concerned about how the medication may impact aspects of your medical issues.

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@delia74

I'll repost what I wrote in a prior response: Three weeks to 3 months is a guideline for this medication, with time off it for a few months, then resuming as needed. I've been on it for many years (since 1990's), 10 mgs nightly seven days per week. I have regular checkups with rheumatologist and primary care physician, as well as periodic cardiology visits and full blood work.
No issues. It is a muscle relaxant, so the one concern is not taking more than what is prescribed and okayed because (as one doctor said) the heart is a muscle and you don't want to create issues with that organ in particular. You can't just self medicate with this muscle relaxant. I can't take amitriptilyne. Was on it and had to be "weaned" and released from it. Can't take other usually prescribed meds such as Lyrica, Cymbalta, etc. So cyclo it is for me. I didn't request it of the doctor that diagnosed the fibromyalgia, she prescribed it. I've had three rheumatologists since then (two retired) and each approved of the medication and dosage. One was in private practice, had been an internist as well as a degree in pharmacology, and absolutely knew his stuff. Incorporated specific supplements to ameliorate issues like inflammation, Raynaud's and neuropathy, and emphasized the important role that nutrition has. I was so sorry when he retired, but he went on to teach at a medical college in NYC, using his wealth of knowledge and experience to impart onto future rheumatologists. Two of my former rheumatologists okayed taking more than one does if in extremely painful flares, but I found that I became a drugged zombie with inability to focus and stay awake the following day. So that is not something that I'd do ever again. One dose of 10 mg nightly is all I need. I am baffled by your doctor's adamancy. Perhaps he/she is concerned about how the medication may impact aspects of your medical issues.

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Correction: "dose" not "does"
I located the "edit" on another post that needed a spelling correction but for whatever reason, that feature is not offered when I click on the three dots at bottom corner of my post...

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