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.

@sueinmn

Massage therapy helps me, especially myofascial release and trigger point pressure on the worst joints. Also, daily stretching and walking.
I get out of bed every morning, no matter how awful I feel. Eat breakfast, shower, get dressed. By that time my body wakes up a little and I do some chores or take a walk. Certainly I will stop and rest when I feel the need, but I find sitting and/or lying down too much seems to "feed the pain" whereas mild activity can make me not notice it so much. Regular bedtime, no TV in the room, just read for a bit. Also, I get higher quality sleep if I stay up as much as possible every day. I would characterize my fibro as sort of mild, with exacerbations from time to time. I have lived with it, with varying levels of severity for over 35 years, even before most doctors believed it existed.
Sue

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Sue, I noticed you are also a member of the MAC group. Do you think there is any correlation between MAC and fibromyalgia. I also have both.

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In reply to @sueinmn …. The "central sensitization” label was quoted by the doctors nurse as highlighted in the clinical notes when my fibro diagnosis was determined in 2017. I attended a 1 1/2 day course;got lots of materials; followed up with various specialists locally and I feel like I’ve been coping pretty adequately ever since, my question was not related to fibro but the answer to my question from the spine specialist was my body’s response probably was fibro related, which I considered not related to my question. Frustrating. I reframed my question and then there was no response at all.

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@rwinney

@marye2 and @migizii Hi folks. After reading posts regarding "chasing symptoms", I cant help but let you know how much I relate and understand, having had my own path of symptom chasing.

On one hand we know our bodies best and should listen to them. We should advocate for ourselves and feel confident that we have had all tests, been seen by the best doctors, try the top meds, and not leave any stone unturned. On the other hand, we also can find ourselves in a hamster wheel, doctor hopping, experimenting with medications, surgeries, and procedures, antagonizing our emotions from the stress and anxiety which in turn antagonizes our physical state creating more symptoms, pain, and trauma.

Each person's health experience and journey is unique to them. Only they know when they are willing to step back, examine the facts, conclude whether they have acute pain or chronic pain, and then address... "what now"?

I have been on both sides and do understand how disheartening and confusing the journey of knowing when to accept and manage chronic conditions versus continuing to search for a fix, a cure, or a bigger picture, can be.

I live with CSS and have posted quite a bit about it around these woods, as well as Mayo's Pain Rehab Center. If you have any questions about CSS , I am here for you.

@migizii You say your doctor brushed off your symptoms as central sensitization. Do you not believe or trust your doctor to make this diagnoses?

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In reply to @rwinney…. The doctor did not brush aside the central sensitation but used it to brush off a question I had related to developing arthritis symptoms and a possible referral to rheumatology (question was to my spine specialist). Instead of processing the issue, his response was that my concerns are most likely central sensitization and to see my PCP with concerns. He already has knowledge of DDD in my spine. Sorry for the confusion. Your feedback was valuable and I understand the fine line we have to walk on…

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@truebeliever

Sue, I noticed you are also a member of the MAC group. Do you think there is any correlation between MAC and fibromyalgia. I also have both.

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Hmmm, I never thought about it. I believe i know the reasons for my Bronchiectasis and MAC, which are largely environmental and hereditary. I don't know if the cause of fibro is yet known or understood, so I have no way to guess if there is a relationship. But it is not uncommon to find people here on Connect that share up to several conditions in common. Maybe it goes with the territory of being more "body aware" when dealing with several conditions?

Sue

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@sueinmn

Hmmm, I never thought about it. I believe i know the reasons for my Bronchiectasis and MAC, which are largely environmental and hereditary. I don't know if the cause of fibro is yet known or understood, so I have no way to guess if there is a relationship. But it is not uncommon to find people here on Connect that share up to several conditions in common. Maybe it goes with the territory of being more "body aware" when dealing with several conditions?

Sue

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Thank you Sue.

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@migizii

In reply to @sueinmn …. The "central sensitization” label was quoted by the doctors nurse as highlighted in the clinical notes when my fibro diagnosis was determined in 2017. I attended a 1 1/2 day course;got lots of materials; followed up with various specialists locally and I feel like I’ve been coping pretty adequately ever since, my question was not related to fibro but the answer to my question from the spine specialist was my body’s response probably was fibro related, which I considered not related to my question. Frustrating. I reframed my question and then there was no response at all.

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I have been recently diagnosed with small fiber poly neuropathy and CSS. Is CSS real? I have never heard of it.

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@rwinney

@marye2 and @migizii Hi folks. After reading posts regarding "chasing symptoms", I cant help but let you know how much I relate and understand, having had my own path of symptom chasing.

On one hand we know our bodies best and should listen to them. We should advocate for ourselves and feel confident that we have had all tests, been seen by the best doctors, try the top meds, and not leave any stone unturned. On the other hand, we also can find ourselves in a hamster wheel, doctor hopping, experimenting with medications, surgeries, and procedures, antagonizing our emotions from the stress and anxiety which in turn antagonizes our physical state creating more symptoms, pain, and trauma.

Each person's health experience and journey is unique to them. Only they know when they are willing to step back, examine the facts, conclude whether they have acute pain or chronic pain, and then address... "what now"?

I have been on both sides and do understand how disheartening and confusing the journey of knowing when to accept and manage chronic conditions versus continuing to search for a fix, a cure, or a bigger picture, can be.

I live with CSS and have posted quite a bit about it around these woods, as well as Mayo's Pain Rehab Center. If you have any questions about CSS , I am here for you.

@migizii You say your doctor brushed off your symptoms as central sensitization. Do you not believe or trust your doctor to make this diagnoses?

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In reply to @rwinney….I am not sure if I trust him in this situation as my symptoms have stayed specific to specific areas consistently and although I mentioned this, it didn’t seem to matter.

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@obackus

I have been recently diagnosed with small fiber poly neuropathy and CSS. Is CSS real? I have never heard of it.

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@obackus Hello. Yes, Central Sensitization Syndrome is very real, yet not very understood by many doctors who stay in their lane and don't know how to treat it properly. Here is an educational video on CSS presented by Mayo Clinic's Dr. Sletten:


Please let me know if you have any questions about the video. Do you mind sharing how you are presently managing your symptoms?

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@migizii

In reply to @rwinney…. The doctor did not brush aside the central sensitation but used it to brush off a question I had related to developing arthritis symptoms and a possible referral to rheumatology (question was to my spine specialist). Instead of processing the issue, his response was that my concerns are most likely central sensitization and to see my PCP with concerns. He already has knowledge of DDD in my spine. Sorry for the confusion. Your feedback was valuable and I understand the fine line we have to walk on…

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@migizii I understand. Perhaps your spine doctor feels there is nothing more he can do for you. You can always get a 2nd opinion regarding your DDD. Why do wish to see a rheumatologist?

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@rwinney

@migizii I understand. Perhaps your spine doctor feels there is nothing more he can do for you. You can always get a 2nd opinion regarding your DDD. Why do wish to see a rheumatologist?

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In reply to @rwinney…. Thx again for responding. This is what I asked my spine specialist for- a referral to rheumatology. He brushed the referral aside as well. There is not reliable rheumatology where I live, so I thought I might be able to go to Mayo. I guess not. I will continue my search.

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