1. < Fibromyalgia

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.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

irr4et | @irr4et | Jun 28, 2023
In reply to @ripley "I'm afraid to take duloxetine (Cymbalta) because I've read it has terrible withdrawal issues if you..." + (show)
@ripley

I'm afraid to take duloxetine (Cymbalta) because I've read it has terrible withdrawal issues if you ever want to discontinue it. I've heard Lyrica has the same issues. I imagine my PC doctor, and other doctors in my area, won't prescribe Tramadol until I try other meds first. I might have to break down my fear of meds to get pain relief. Next week, I'm going to a pain clinic and another clinic that deals with fibro and will ask about low dose naltrexone and medical marijuana. I heard LDN might take a while to be effective.

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I too am struggling with pain control bc of Fibromyalgia, 22 Yrs.
I do well on Lyrica. The secret is to start with 25 mgs am and pm and stay on that dose as long as it helps. Then increase to 50 mgs and so forth. I am now at 100 mgs three times a day after being on Lyrica 11yrs. I am on 1:1 medical cannabis also at bedtime. For some reason pain goes up around 10 pm bc of the sun not shining then. I had neck surgery 15 Yrs ago so I have double pain sources. I have been unable to control pain well so it increased to a new worse condition called Central Pain Syndrome. I tried Ketamine IV’s for ten days a Yrs ago and now I may have terrible nerve damage from it causing extremely weak bowel motility. Laxatives do not wk. This is frightening. I have to take a supplement by Integrative Therapeutics called Motility Activator. It’s slow to wk and has weak effect. I ate two prunes this am and they did not help except for producing gas. I drink a lot of water but not half my wt in ounces. My dr doesn’t like stool softeners but he does recommend Miralax. I just started drinking it twice a day and yesterday I added 2/3 t mag citrate powder to it. I’ll let you all know if it wks.

REPLY
2 replies
irr4et | @irr4et | Jun 28, 2023
In reply to @irr4et "I too am struggling with pain control bc of Fibromyalgia, 22 Yrs. I do well on..." + (show)
@irr4et

I too am struggling with pain control bc of Fibromyalgia, 22 Yrs.
I do well on Lyrica. The secret is to start with 25 mgs am and pm and stay on that dose as long as it helps. Then increase to 50 mgs and so forth. I am now at 100 mgs three times a day after being on Lyrica 11yrs. I am on 1:1 medical cannabis also at bedtime. For some reason pain goes up around 10 pm bc of the sun not shining then. I had neck surgery 15 Yrs ago so I have double pain sources. I have been unable to control pain well so it increased to a new worse condition called Central Pain Syndrome. I tried Ketamine IV’s for ten days a Yrs ago and now I may have terrible nerve damage from it causing extremely weak bowel motility. Laxatives do not wk. This is frightening. I have to take a supplement by Integrative Therapeutics called Motility Activator. It’s slow to wk and has weak effect. I ate two prunes this am and they did not help except for producing gas. I drink a lot of water but not half my wt in ounces. My dr doesn’t like stool softeners but he does recommend Miralax. I just started drinking it twice a day and yesterday I added 2/3 t mag citrate powder to it. I’ll let you all know if it wks.

Jump to this post

It’s me again. One more thing - I never plan to stop taking Lyrica bc it does give me helpful pain control except Rt before weather system is coming into town and during. I’m also at level of pain and depression about this disease totally wrecking my life that I am going to try lowest dose of Cymbalta (duloxitine). I’m 72 so if it helps, I’ll prob stay on it rest of my life also.

REPLY
1 reply
dream1649 | @dream1649 | Jun 28, 2023
In reply to @irr4et "It’s me again. One more thing - I never plan to stop taking Lyrica bc it..." + (show)
@irr4et

It’s me again. One more thing - I never plan to stop taking Lyrica bc it does give me helpful pain control except Rt before weather system is coming into town and during. I’m also at level of pain and depression about this disease totally wrecking my life that I am going to try lowest dose of Cymbalta (duloxitine). I’m 72 so if it helps, I’ll prob stay on it rest of my life also.

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(duloxitine) is what I take. I take it at bedtime I'm 67 years old it seems to help with my pain but not my muscles. Good luck to you.

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ripley | @ripley | Jun 28, 2023

I'm glad Lyrica and Cymbalta are working for you as I've read they only work for 30-50% of people. From what I understand, a person will build up a tolerance and then have to keep increasing the dose, or the meds can stop working after a while, which is when a person might want to stop taking them. I'm going to a pain clinic next week and will ask about medical marijuana and low dose naltrexone. I don't know what else I'll do for the pain, as it's greatly interfering with my life.

REPLY
ripley | @ripley | Jun 28, 2023
In reply to @irr4et "I too am struggling with pain control bc of Fibromyalgia, 22 Yrs. I do well on..." + (show)
@irr4et

I too am struggling with pain control bc of Fibromyalgia, 22 Yrs.
I do well on Lyrica. The secret is to start with 25 mgs am and pm and stay on that dose as long as it helps. Then increase to 50 mgs and so forth. I am now at 100 mgs three times a day after being on Lyrica 11yrs. I am on 1:1 medical cannabis also at bedtime. For some reason pain goes up around 10 pm bc of the sun not shining then. I had neck surgery 15 Yrs ago so I have double pain sources. I have been unable to control pain well so it increased to a new worse condition called Central Pain Syndrome. I tried Ketamine IV’s for ten days a Yrs ago and now I may have terrible nerve damage from it causing extremely weak bowel motility. Laxatives do not wk. This is frightening. I have to take a supplement by Integrative Therapeutics called Motility Activator. It’s slow to wk and has weak effect. I ate two prunes this am and they did not help except for producing gas. I drink a lot of water but not half my wt in ounces. My dr doesn’t like stool softeners but he does recommend Miralax. I just started drinking it twice a day and yesterday I added 2/3 t mag citrate powder to it. I’ll let you all know if it wks.

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I am so sorry! Now I understand why you don't intend to stop the medications you are on. Are you saying that the pain from Fibro eventually led to Central Pain Syndrome? What type of doctor do you have to help you through all of this and guide you as what meds to take, etc? Also, what type of medical cannabis do you use, as I am interested in trying it? Thank you.

REPLY
lindasmith1222 | @lindasmith1222 | Jun 29, 2023
In reply to @ripley "I'm afraid to take duloxetine (Cymbalta) because I've read it has terrible withdrawal issues if you..." + (show)
@ripley

I'm afraid to take duloxetine (Cymbalta) because I've read it has terrible withdrawal issues if you ever want to discontinue it. I've heard Lyrica has the same issues. I imagine my PC doctor, and other doctors in my area, won't prescribe Tramadol until I try other meds first. I might have to break down my fear of meds to get pain relief. Next week, I'm going to a pain clinic and another clinic that deals with fibro and will ask about low dose naltrexone and medical marijuana. I heard LDN might take a while to be effective.

Jump to this post

I have taken Tramadol and it was worthless. Absolutely did nothing for my pain but give me a stomach cramps. Does anyone 'out there' get relief from their pain with Tramadol?

REPLY
1 reply
vellen | @vellen | Jun 29, 2023
In reply to @lindasmith1222 "I have taken Tramadol and it was worthless. Absolutely did nothing for my pain but give..." + (show)
@lindasmith1222

I have taken Tramadol and it was worthless. Absolutely did nothing for my pain but give me a stomach cramps. Does anyone 'out there' get relief from their pain with Tramadol?

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I've been on Tramadol for over 20 years with only a couple short breaks. It works extremely well for me but for one mfr., "Dr" something. I can not take it past 2pm because of sleeplessness and I take a low dose Ambien for that.
My mother tried Tramadol as well and got zero benefit from it.
I am going to ask about Topamax (Topiramate) next dr visit. I wouldn't mind trying something different nd that's pescribed for nerve pain. I cannot take the usual SSRIs unfortunately.

REPLY
marye2 | @marye2 | Jun 29, 2023
In reply to @ripley "I've called several rheumatologists in my state and they all only diagnose fibro and don't treat..." + (show)
@ripley

I've called several rheumatologists in my state and they all only diagnose fibro and don't treat it. I am going to a pain clinic in two weeks hoping they can help me. I want to ask about low dose naltrexone, a newer treatment for chronic pain. It's supposed to have fewer side effects than the drugs now recommended for fibro and it doesn't have withdrawal issues. I tried acupuncture this week and it caused a flare up of my pain so I don't know if I should have another treatment.

Jump to this post

It is so important to keep muscles strong with fibro, plus I find that movement relieves tight muscles/tendons that cause referred pain. I am painfree moving in a pool. Your overall strength will make tasks easier. Avoid staying in bed with a heating pad for hours. Also, I found that a non-inflammatory diet helped immensely in reducing sleepiness/pain/achiness. Basically, avoid sugars, aspartame, dairy, nightshades (potatoes/tomatoes), processed foods. Keep a food diary for a few weeks, and note days where you do not feel well. There might be common foods that are causal. I am also sensitive to fluorescent lighting, high UVA days, and fragrances.

REPLY
1 reply
ripley | @ripley | Jun 29, 2023
In reply to @marye2 "It is so important to keep muscles strong with fibro, plus I find that movement relieves..." + (show)
@marye2

It is so important to keep muscles strong with fibro, plus I find that movement relieves tight muscles/tendons that cause referred pain. I am painfree moving in a pool. Your overall strength will make tasks easier. Avoid staying in bed with a heating pad for hours. Also, I found that a non-inflammatory diet helped immensely in reducing sleepiness/pain/achiness. Basically, avoid sugars, aspartame, dairy, nightshades (potatoes/tomatoes), processed foods. Keep a food diary for a few weeks, and note days where you do not feel well. There might be common foods that are causal. I am also sensitive to fluorescent lighting, high UVA days, and fragrances.

Jump to this post

Have you tried going gluten free? I do avoid staying in bed and try to keep moving during the day. Thanks.

REPLY
1 reply
marye2 | @marye2 | Jun 30, 2023
In reply to @ripley "Have you tried going gluten free? I do avoid staying in bed and try to keep..." + (show)
@ripley

Have you tried going gluten free? I do avoid staying in bed and try to keep moving during the day. Thanks.

Jump to this post

I don't eat much bread anymore; but have noticed that white potatoes have an achy effect if I have them several days in a row. Just go non-processed and track how you feel for a few weeks to hone in on what affects you. I have adapted recipes, but always looking for something new. Instapot chicken paprikash on noodles (you can get carb free or shred squash/zucchini. Roasted veg is great; look at the sheet pan roasting recipes.

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