Fibro acts up whenever I lay down to rest, When I first wake up A.M.

Posted by healthybon @healthybon, Jul 4, 2023

My muscles get in excruciating pain lately if I lay down to take a nap…..or…when I awake in the morning. I have had it for 40 years and the pain level of my muscles is now a ten. I have been under enormous stress this past year. Diagnosed with a lung disease, MAC Lung and Bronchiestasis, my cat died, I had Covid, then pneumonia, developed burning mouth syndrome, developed an anxiety syndrome and had to go in a psyche hospital for a week for help. They put me on Lexapro. Now I am on a two week stay in Denver (very high altitude) at the National Jewish Hospital to get help for the lung disease. The high altitude is hard on me.
Does anyone experience absolutely excruciating pain and tight muscles….and I forgot, when that happens, costochondritis acts up when my muscles start up.
Would appreciate anyone who can relate to share info with me. Thks.

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@vellen

The pain waking you makes me wonder if you've been tested for PMR?

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I recently had a SED rate and CRP test, both normal. A year ago I was tested for other inflammatory markers and everything was normal. I asked my Dr about getting the blood tests done again this year, but she said they don't usually retest. I don't have any trouble lifting my arms or getting in/out of bed so don't think it's PRM.

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@vellen

Hi, yes, Tramadol and an occasional Tylenol. When I first began taking it (Tramadol 50mg with NO acetaminophen), 20 years ago, I realized it messed with my sleep, a side effect for me is a bit of welcome energy. I switched from two per day to just the one in the mornng. That worked well because of the heightened a.m. stiffness and pain. About four years ago, I went up to two in the morning. I now get a prescription that covers an extra one in the early afternoon if needed.
The other thing I take is 5mg Ambien right before bed.

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Did you ever take any other meds for Fibro, before the Tramadol? My PC Dr is very reluctant to prescribe any strong pain meds so would probably insist I try some of the other drugs first, such as Cymbalta, Lyrica etc. I know they have a lot of side effects and are very difficult to discontinue without long tapering. I'm having terrible muscle pain now, 24/7. I'm going to a pain clinic tomorrow to see what they suggest.

I also have bad insomnia. I usually can fall asleep but wake up many times during the night and have trouble falling back asleep. I had a sleep study done that ruled out apnea and restless legs. I'm seeing another sleep Dr soon. Have you always been on the same dose of Ambien? How much sleep do you usually get with it and are you tired the next day from it? I worry about the side effect of sleep walking.

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Tramadol is the weakest rx pain relief. Also as I mentioned . I can't take the ssri, though tramadol mimics some of that side effect, it helps make you feel better and why you need to taper off. I've heard Lyrica works well for fibro and I think I mentioned asking about Topamax if this new doctor is bound and determined to get me off Tramadol. I have read stories about it being addictive and I do feel effects if I wait too long to take it. (Thise rare tines I wake feeling good. Very rare.) I have a fear of addicton so really won't take more than prescribed.
I did try fentenyl patches and it took away ALL the pain. The problem I ran into was being backed up. I tend to have flares of diverticulitis and found myself in the hospital for 8 days.
I don't notice any day after tiredness from 5mg Ambien. I also wake during the might once or twice, it's more of a 'help go to sleep' medicine. I was first given 10mg but that was too strong.
And thjs is long. The kther med I tried and was great was Darvocet-100 bit they discontinued it. I took Soma prior to Ambien and it worked great, When I changed doctors, he didn't want to prescribe it. So it goes.
This is long, sorry!
Take care, hydrate, stretch and breathe.
~Vikki

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@ripley

Did you ever take any other meds for Fibro, before the Tramadol? My PC Dr is very reluctant to prescribe any strong pain meds so would probably insist I try some of the other drugs first, such as Cymbalta, Lyrica etc. I know they have a lot of side effects and are very difficult to discontinue without long tapering. I'm having terrible muscle pain now, 24/7. I'm going to a pain clinic tomorrow to see what they suggest.

I also have bad insomnia. I usually can fall asleep but wake up many times during the night and have trouble falling back asleep. I had a sleep study done that ruled out apnea and restless legs. I'm seeing another sleep Dr soon. Have you always been on the same dose of Ambien? How much sleep do you usually get with it and are you tired the next day from it? I worry about the side effect of sleep walking.

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Oh my sister tried Ambien and did sleepwalk. Her husband would find her up looking for her car keys so he hid them every night until she stopped taking it. Eeks
I get uaually 7-8 hours sleep total. Any less and I rest or nap the next day.

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@ripley

I recently had a SED rate and CRP test, both normal. A year ago I was tested for other inflammatory markers and everything was normal. I asked my Dr about getting the blood tests done again this year, but she said they don't usually retest. I don't have any trouble lifting my arms or getting in/out of bed so don't think it's PRM.

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I was unable rto lift my legs while laying down but not my arms. I am glad you don't have PMR. And I hope your doctor or the pain clinic can help lower your pain. I'm never pain- free and don't expect to be but I am happy to be at a level I can deal with.

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@vellen

Tramadol is the weakest rx pain relief. Also as I mentioned . I can't take the ssri, though tramadol mimics some of that side effect, it helps make you feel better and why you need to taper off. I've heard Lyrica works well for fibro and I think I mentioned asking about Topamax if this new doctor is bound and determined to get me off Tramadol. I have read stories about it being addictive and I do feel effects if I wait too long to take it. (Thise rare tines I wake feeling good. Very rare.) I have a fear of addicton so really won't take more than prescribed.
I did try fentenyl patches and it took away ALL the pain. The problem I ran into was being backed up. I tend to have flares of diverticulitis and found myself in the hospital for 8 days.
I don't notice any day after tiredness from 5mg Ambien. I also wake during the might once or twice, it's more of a 'help go to sleep' medicine. I was first given 10mg but that was too strong.
And thjs is long. The kther med I tried and was great was Darvocet-100 bit they discontinued it. I took Soma prior to Ambien and it worked great, When I changed doctors, he didn't want to prescribe it. So it goes.
This is long, sorry!
Take care, hydrate, stretch and breathe.
~Vikki

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Thanks for sharing the medications you’ve tried. Have you ever tried Savella? It’s also a neuromodulator aka antidepressant (SNRI) like Cymbalta,

My rheumatologist mentioned it. I’m scared to try neuromodulators because of all the side effects and discontinuation/withdrawal symptoms. I have central sensitivity syndrome, so my nervous system is very sensitive to medication.

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@emo

Thanks for sharing the medications you’ve tried. Have you ever tried Savella? It’s also a neuromodulator aka antidepressant (SNRI) like Cymbalta,

My rheumatologist mentioned it. I’m scared to try neuromodulators because of all the side effects and discontinuation/withdrawal symptoms. I have central sensitivity syndrome, so my nervous system is very sensitive to medication.

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I tried two weeks of Lyrica then Cymbalta and both tines my chest felt heavy so none for me. I also really hated the cotton or dry mouth feeling.

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@vellen

I tried two weeks of Lyrica then Cymbalta and both tines my chest felt heavy so none for me. I also really hated the cotton or dry mouth feeling.

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Yikes. Thank you for the reply. I know it was only 2 weeks, but did you have any discontinuation symptoms when you stopped Lyrica and Cymbalta?

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@emo

Yikes. Thank you for the reply. I know it was only 2 weeks, but did you have any discontinuation symptoms when you stopped Lyrica and Cymbalta?

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I didn't notice any residual effects. I was very happy to get rid of the dry mouth though. I don't know if everyone gets that or if it's a random side effect but even chewing gum didn't help.
These two attempts were a few years apart.

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@vellen

I didn't notice any residual effects. I was very happy to get rid of the dry mouth though. I don't know if everyone gets that or if it's a random side effect but even chewing gum didn't help.
These two attempts were a few years apart.

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Thank you. I really appreciate you sharing your experience.

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