Have you found anything to successfully treat fibromyalgia pain?

Posted by gail4 @gail4, Sep 18, 2021

I am looking for answers to what anyone has found to successfully treat my pain from fibromyalgia. Getting desperate.

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

Savella worked very well for me but I couldn’t tolerate the side effects. (Racing heart type effects). Doesn’t happen to everyone so maybe worth a shot.

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I have lived with fibromyalgia and other chronic conditions for over 20 years now. I currently go to a rheumatologist that I've been going to the duration of that time. I am currently taking a regiment of gabapentin, duloxetine, muscle relaxers, antidepressants and sleeping pills. I am unable to take any kind of NSAIDs due to being a gastric bypass recipient. Therefore over-the-counter medications such as Tylenol do absolutely nothing for me. So I currently take a 30 mg slow release morphine in the morning and one in the evening. I also have 10 mg of hydrocodone pills that I can take for breakthrough pain. There's a lot of people that say that the narcotics do not work for fibromyalgia and I just wanted to stay here that for me they do. I have been off of them several times and tried other avenues in hopes I would find alternative relief and nothing worked for me. This current regiment that I'm on is the closest I'm going to get to being pain-free. I want to point out that I am not an addict I've been taking them for years. I cross all my "T's" and dot all my "I's" to make sure that I meet the states guidelines and regulations and see my doctor every 3 months. So I just wanted to state that it's very individualized it is a conversation between you and your doctor and what works for you. If you're not happy with your current regiment I would suggest finding a new doctor. But don't stop fighting for what works for you.

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@katesheart

I have lived with fibromyalgia and other chronic conditions for over 20 years now. I currently go to a rheumatologist that I've been going to the duration of that time. I am currently taking a regiment of gabapentin, duloxetine, muscle relaxers, antidepressants and sleeping pills. I am unable to take any kind of NSAIDs due to being a gastric bypass recipient. Therefore over-the-counter medications such as Tylenol do absolutely nothing for me. So I currently take a 30 mg slow release morphine in the morning and one in the evening. I also have 10 mg of hydrocodone pills that I can take for breakthrough pain. There's a lot of people that say that the narcotics do not work for fibromyalgia and I just wanted to stay here that for me they do. I have been off of them several times and tried other avenues in hopes I would find alternative relief and nothing worked for me. This current regiment that I'm on is the closest I'm going to get to being pain-free. I want to point out that I am not an addict I've been taking them for years. I cross all my "T's" and dot all my "I's" to make sure that I meet the states guidelines and regulations and see my doctor every 3 months. So I just wanted to state that it's very individualized it is a conversation between you and your doctor and what works for you. If you're not happy with your current regiment I would suggest finding a new doctor. But don't stop fighting for what works for you.

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Been tapering off of Lyrica. Gained A LOT of weight. After taper is completed in a couple of weeks - starting LDN (Low dose Naltrexone). Hoping it helps. Currently taking Cymbalta which helps a little. Also started Delta 8 a couple weeks ago, which actually has been helping with quality of sleep. Feeling more rested and pain went from an 8 out of 10 to a 7. Tried a bunch of others like Gabapentin, which caused a roller coaster of emotions. Two months of weekly acupuncture did not work - and made pain worse.

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@faithjc01

I had in 2019 woke up with a sore throat and then started having tightness of my neck head and shoulders along with bi lateral upper and lower extremity numbness I was getting daily cramping of my muscles.
Seen multiple doctors from neurologist, neuromuscular pain management the list goes on and on.
2020 developed Covid 19 and when on a ventilator . The pain went away because the Mayo Clinic said it shut down my pain centers under the coma and rebooted.
Well I get flare ups now. I am having a bad one which I am on a steroid take Valium and pain meds. I do Accupuncture physical therapy and a person trainer and I dont know what else to do.
The issue is I am preparing for knee surgery but now I dont know what to do. Just do it with al this other stuff going on.
No idea but this is truly hurting me

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Hello
Are you having knee replacement? If so know it is a lot of work and pain. BUT you are stronger than you know. I had it last Dec amid a long list of pain issues no one can seem to figure out after a bad Femural head break in 2007 . For me my knee pain was getting so severe and I had tried stem cell and everything else to mitigate it and replacement was the last straw. It was very rough. But now
My knee pain is one of
My minor issues.
I am on pain meds. Although I’ve detoxed off of them more than 10
Times in the last 151/2
Years my pain is too much to live with wo them. Good
Luck to you! It won’t be great but it could be better. It takes a year which is very hard to process , but just take it day to day.

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@suzanne19

Been tapering off of Lyrica. Gained A LOT of weight. After taper is completed in a couple of weeks - starting LDN (Low dose Naltrexone). Hoping it helps. Currently taking Cymbalta which helps a little. Also started Delta 8 a couple weeks ago, which actually has been helping with quality of sleep. Feeling more rested and pain went from an 8 out of 10 to a 7. Tried a bunch of others like Gabapentin, which caused a roller coaster of emotions. Two months of weekly acupuncture did not work - and made pain worse.

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I also was on Lyrica for several years and I had terrible side effects as far as balancing problems by trying to walk memory issues so I got off of that real quick. I've been hearing a lot about Delta 8 and thinking about trying that. I haven't tried acupuncture but I tried dry needling and the release of pain is very short-lived. I would like to try some trigger point injections but we'll see. Thank you for your reply and I do hope you get to feeling better soon and find something that really works for you.

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I haven't been focusing of my FM other than identifying and avoiding triggers for the severe pain flares - been focusing on recovering from cancer/chemotherapy and getting diagnoses/treatment for neck, shoulder and hip pain. The chemo appears to have caused my arthritis to go crazy. Shoulder surgery is pending, had a cortisone injection in hip with possible replacement in the future. Tolerating the milder day to day pain of the FM until I can get connected with an expert. I see my neurologist next week and will ask about treating the FM, getting some images of the back and getting a referral to my PT guy to work on those fascial knots.

My point in posting is pain management. Acetaminophen hasn't been helpful for either the FM or arthritis. Naproxen helps a bit with the arthritis pain, but I'm not supposed to take NSAIDs per cardiology. Also have had some prescription pain meds in the past which weren't helpful. Short of going to opiates, nothing seems to work for the pain.

Lyrica gave me some wacky dreams, cyclobenzaprine wasn't helpful, am currently on Duloxetine - would have to withdraw from it to know how effective it is. Have had suggestions to increase the dose. Gabapetin and Savella are options to try.

To help with sleep issues due to pain and having to get up in the middle of the night because I'm colon-less, I use 3mg of melatonin to help get to sleep and 7.5 of mirtazapine at bedtime to get back to sleep. That helps with the sleep as long as the pain is mild.

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@rjjacobsen

I haven't been focusing of my FM other than identifying and avoiding triggers for the severe pain flares - been focusing on recovering from cancer/chemotherapy and getting diagnoses/treatment for neck, shoulder and hip pain. The chemo appears to have caused my arthritis to go crazy. Shoulder surgery is pending, had a cortisone injection in hip with possible replacement in the future. Tolerating the milder day to day pain of the FM until I can get connected with an expert. I see my neurologist next week and will ask about treating the FM, getting some images of the back and getting a referral to my PT guy to work on those fascial knots.

My point in posting is pain management. Acetaminophen hasn't been helpful for either the FM or arthritis. Naproxen helps a bit with the arthritis pain, but I'm not supposed to take NSAIDs per cardiology. Also have had some prescription pain meds in the past which weren't helpful. Short of going to opiates, nothing seems to work for the pain.

Lyrica gave me some wacky dreams, cyclobenzaprine wasn't helpful, am currently on Duloxetine - would have to withdraw from it to know how effective it is. Have had suggestions to increase the dose. Gabapetin and Savella are options to try.

To help with sleep issues due to pain and having to get up in the middle of the night because I'm colon-less, I use 3mg of melatonin to help get to sleep and 7.5 of mirtazapine at bedtime to get back to sleep. That helps with the sleep as long as the pain is mild.

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Hello @rjjacobsen. I see why you posted because of pain management, or lack thereof. How frustrating. I'm so sorry for what you've been through.

Outside of the tradition meds that you've tried or are using that are no longer working, what self-care or self-help tools do you use? It's a sad space when you get to wanting pain relief that may not be able to be provided. Good for you for not going the opioid route. Unfortunately I did, and it back fired by actually intensifying symptoms. I know nothing of what you've been through with cancer, but I live with a chronic pain and sensory disorder and hit that dead end with traditional pain management myself.

Things like mindfulness, meditation, diaphragmatic breathing , gentle exercise and finding gratitude are tools I use to help me get through challenging days. Would you say you are an active participant in your pain-management care? Have you found any self- help tools that you can lean into?

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Good afternoon all -
Daily affirmations or mantras have been a source of positivity and encouragement in my journey and I hope they are helpful to you. Today is good.

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@rwinney

Hello @rjjacobsen. I see why you posted because of pain management, or lack thereof. How frustrating. I'm so sorry for what you've been through.

Outside of the tradition meds that you've tried or are using that are no longer working, what self-care or self-help tools do you use? It's a sad space when you get to wanting pain relief that may not be able to be provided. Good for you for not going the opioid route. Unfortunately I did, and it back fired by actually intensifying symptoms. I know nothing of what you've been through with cancer, but I live with a chronic pain and sensory disorder and hit that dead end with traditional pain management myself.

Things like mindfulness, meditation, diaphragmatic breathing , gentle exercise and finding gratitude are tools I use to help me get through challenging days. Would you say you are an active participant in your pain-management care? Have you found any self- help tools that you can lean into?

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Thanks for your reply.

What has helped for me is being a person of faith and thus knowing there is a higher purpose for what I've experienced. Second, recognizing my limitations so that I don't hit a trigger point. Third, doing what I can to ensure good quality/duration of sleep. Fourth, addressing the non-FM causes of pain - injury, arthritis, etc. Last - walking for exercise and daily stretching help as well.

I do not have anyone actively addressing my pain management at this time. FM is a recent diagnosis. I have a surgery coming to fix a torn labrum and clear out arthritis in one shoulder. Recently had a steroid injection in one hip - pain due to arthritis and a labrum tear.

The pain management for the FM has had to be a lower priority than getting those really painful "hot spots" handled since most of the time the pain is tolerable.

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@rjjacobsen

I haven't been focusing of my FM other than identifying and avoiding triggers for the severe pain flares - been focusing on recovering from cancer/chemotherapy and getting diagnoses/treatment for neck, shoulder and hip pain. The chemo appears to have caused my arthritis to go crazy. Shoulder surgery is pending, had a cortisone injection in hip with possible replacement in the future. Tolerating the milder day to day pain of the FM until I can get connected with an expert. I see my neurologist next week and will ask about treating the FM, getting some images of the back and getting a referral to my PT guy to work on those fascial knots.

My point in posting is pain management. Acetaminophen hasn't been helpful for either the FM or arthritis. Naproxen helps a bit with the arthritis pain, but I'm not supposed to take NSAIDs per cardiology. Also have had some prescription pain meds in the past which weren't helpful. Short of going to opiates, nothing seems to work for the pain.

Lyrica gave me some wacky dreams, cyclobenzaprine wasn't helpful, am currently on Duloxetine - would have to withdraw from it to know how effective it is. Have had suggestions to increase the dose. Gabapetin and Savella are options to try.

To help with sleep issues due to pain and having to get up in the middle of the night because I'm colon-less, I use 3mg of melatonin to help get to sleep and 7.5 of mirtazapine at bedtime to get back to sleep. That helps with the sleep as long as the pain is mild.

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I feel for you! I was going on 1 mile walks again after a laminectomy and then a couple months later they removed a tumor and hit me hard with chemotherapy. The side effects were expected but I did chair yoga in recovery.
5 years later I’m back to chair yoga because of the neuropathy, fibromyalgia and arthritis.
The only thing that makes me start moving is the lowest dosage of Oxycodone even though it seems like 90 mg Duloxetine, 200 mg Celecoxib, 600 mg Gabapentine and lots of lidocaine daily. I’ve tried CBD with THC for sleep but can’t handle THC. It works for a lot of people. The art of distraction/meditation is vital. Good luck with your journey 🫶🏻

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