Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Grace, my 18 yo is a swimmer. When the pool isnt available, the coach will have them do drylands Grace hates it. The authors name always reminds me of that
I have begun reading. I am about to start Ch 4. He has already referred to Dr. Martinez-Lavin and Dr. Wood on fight or flight and dopamine. . This is changing how I think about FM.
I want to copy out for you the In a Nutshell bordered block at the end of Ch. 1
Fibromyalgia isnt forever -- you can recover!
People with fibromyalgia have an overactive sympathetic nervous system, also known as the bodys fight or flight response. An overactive fight or flight response results in the continual release of adrenaline, dopamine, and other important stress related hormones. If this elevated fight or flight activity continues, dopamine will become depleted.
Disruptions in your sleep cycle (which you may or may not be aware of) prevent dopamine from being replenished at night
When your body experiences fight or flight fatigue, dopamine loses its effectiveness as a filter. Its like taking out earplugs at a rock concert and discovering that the music is so loud it hurts. Once you lose the protection of dopamine, a pain blockier, all of your sensations (pain or otherwise) are suddenly amplified.
The pain caused by depleted dopamine continues to trigger the fight or flight response, and fibromyalgia becomes a self-perpetuating illness.
There is a solution to fibromyalgia. With knowledge and an effective treatment plan, you can rebalance your nervous system and reverse the fibromyalgia cycle.
In subsequent chapters, he mentions triggers that can be primary or secondary, and includes such as hypermobility, sleep apnea, PTSD, restless legs syndrome, other physical pain and emotional stress such as depression and anxiety! As I said, I am only about to begin Ch. 4, but I would highly recommend you take a look at it.
I have begun reading. I am about to start Ch 4. He has already referred to Dr. Martinez-Lavin and Dr. Wood on fight or flight and dopamine. . This is changing how I think about FM.
I want to copy out for you the In a Nutshell bordered block at the end of Ch. 1
Fibromyalgia isnt forever -- you can recover!
People with fibromyalgia have an overactive sympathetic nervous system, also known as the bodys fight or flight response. An overactive fight or flight response results in the continual release of adrenaline, dopamine, and other important stress related hormones. If this elevated fight or flight activity continues, dopamine will become depleted.
Disruptions in your sleep cycle (which you may or may not be aware of) prevent dopamine from being replenished at night
When your body experiences fight or flight fatigue, dopamine loses its effectiveness as a filter. Its like taking out earplugs at a rock concert and discovering that the music is so loud it hurts. Once you lose the protection of dopamine, a pain blockier, all of your sensations (pain or otherwise) are suddenly amplified.
The pain caused by depleted dopamine continues to trigger the fight or flight response, and fibromyalgia becomes a self-perpetuating illness.
There is a solution to fibromyalgia. With knowledge and an effective treatment plan, you can rebalance your nervous system and reverse the fibromyalgia cycle.
In subsequent chapters, he mentions triggers that can be primary or secondary, and includes such as hypermobility, sleep apnea, PTSD, restless legs syndrome, other physical pain and emotional stress such as depression and anxiety! As I said, I am only about to begin Ch. 4, but I would highly recommend you take a look at it.
Personally, I find it frustrating reading all the ads on the internet, etc. that have "cures" for Fibro when we DON'T know the cause yet.
Just my humble opinion ~ Adrianne
Most meds used to treat fibro such as antidepressants, anti-seizure meds and anti-anxiety meds eventually deplete the brain of the various neurotransmitters. I think that is why they stop working. When that happens, instead of realizing the body isn't getting what it needs to function, the average doctor adds a second similar medication to the mix amplifying the problem. When serotonin is depleted, people's pain levels skyrocket and such minor things as wearing a bra become torture. What the person needs is to replace the serotonin through something like 5-htp so it can do it's job in blocking the pain neurotransmitter, Substance P.
This book happens to refer to several doctors' research projects which have been presented on these boards, such as Martinez-Lavin and Wood.
Narey, you had not even read the book before you were advocating that others should buy it. You hadn't even tried to put this theory into play in your own life before you were raving out it.
Read the book, then try it, then post YOUR opinion on the results.
As you said there are as many theories about the cause/treatment/cure of FMS as there are pharmaceutical companies and researchers out there. NO ONE knows what the cause is. There IS NO cure. There ARE treatments that help SOME of us with some of our symptoms. There is no ONE treatment that helps everyone. And, to imply there is is unethical and down right dishonest.
Adrianne
Your comment, "Those doing the research now know more than the average nurse or sufferer knows about FM" is laughable.
If that were true, then there would be a consensus in the fields of medicine and research on the causative factor of FMS. As it stands you can ask 10 researchers what causes FMS and get 10 different answers. Do they know more than Fibromites on what works and what doesn't to lessen some symptoms? I think not. We don't learn from them what works for us, THEY learn from us.
Enough said. I thought we were here to help one another. Not to sway others to our unfounded ways.
J'sMom, we just disagree. SOMEthing does cause it, research is getting closer, and I don't want to continue to just get help for some of my symptoms. And I want to share what I learn with others, and as Strohm says, just let everyone discern for themselves.
JJ'sMom, you believe these experts don't know more than we do.Narey is one of the foremost experts on this board and I think she must know that. She could blow out of the water 99.9% of anyone on the subject of Fibro. --- She got that way, by constant research. Just what she is doing now. So, you are in agreement. Narey said, the one
s doing the research know more than the docs. TRUE. JJ's Mom , you agree because you said we know more (meaning Narey too) than the docs. And again , Narey got that way because she took in all the info , sifted through it and came up with valid conclusions.
LOL --- See , we all agree!
That's one of the great things about this particular group. You can see the statistics and % of what has worked for people how have participated in the query. EX: On the treatment tab you can see that heat helps 94% of the 3,398 members that answered that questions. That's great! That's statistics that are useful for us to know. And the list goes on and on.
Read your book, try out what they are suggesting and give us feedback then. I don't think it's ethical to suggest someone buy a book or "check it out" when you haven't even started reading when you posted your first post. I don't see why that doesn't make sense.
AIthough some of Dr Dryland's theories are very interesting, I am not reccommending this book to my friends. Instead, I suggest reading "The complete Idiot's Guide to Fibromyalgia". Lots of handy references in an easy to read format.
Bottom line for me is this: Can we "recover" from something that so far doesn't have a known cause? We are learning what FMS does to our bodies, but those aren't causes. Those are reactions. And, until we know what is causing this we can only treat symptoms.
Personally, I have several things in my arsenal that I use to lessen my pain, fatigue and other symptoms. They all work, to a degree and for that I'm thankful. In the meanwhile, I keep reading and learning as much as possible.
I don't usually do this, but I'm asking for prayers for a very dear lady who is in Hospice at this moment. She is the creator of our ForMomsOnly support group here on DS and has helped so many of us who have lost children. She is an Angel and is losing her battle with cancer. Prayers, words of love or anything you can offer her is appreciated. Thank you.
Adrianne
Second I will point out that there have been innumerable times when someone posts a "has anyone heard of..." and there ensues a discussion on its merits as well as some deciding to try it out and compare notes.
I would find it unethical of myself if I believed I have something of value to offer, something worth exploring or trying and I kept it to myself for months while I tried it out, when it causes no harm whatsoever to put it out there and let others take what they want from it.
I'm not at all comprehending what you have against that, or is it just me, J'sMom?
There are researchers who DO believe they know what causes FM. It's not what they are saying that FM does TO our bodies, but HOW it comes about that we have it. And, no scootermom, it doesn't mean you are at fault if you were not able to bring about a remission. Have you actually done all that is suggested, though? There is a pretty explicit and complicated protocol and if you haven't addressed each and every on the chain, you might not be able to get the results that his patients and he are getting.
I will pray for your Angel, Adrianne, and for you too.
Isn't this the way scientific research has to play out? Thank god credible people have been peeling back the layers of the FM mystery.
I never thought I would see this much progress made in my lifetime.
Years ago I read through one of Devin Starlanyl's books and she on of the things she wrote about was the need investigate "fight or flight" dysfunction. Then I later came across the research of Martinez-Lavin and there were the heart rate variability studies confirming that autonomic dysfunction was real and explained some of our symptoms.
Now there are studies showing how microbes in our bodies use epinephrine and iron to promote their own agendas at the detriment of us.
My brother is a family counseler and he said to me the other day that I seem to be sicker than his clients who say they have fibromyalgia. I told him that I probably am and there are plenty of people sicker than me. It is a "syndrome" and people may have some symptoms and not others and different degrees of those symptoms.
Thanks for the post, Nary. You got a good discussion going. I am learning so much from this site.
I know a lot more about fibromyalgia, and maybe even about chronic pain and its treatment, than my PCP. He'll be the first one to tell you that. They still don't give it a lot of attention in medical school. It's my primary focus, while he treats hundreds of people with all kinds of illnesses and has to have a general knowledge of a lot of things.
I guess what I'm saying is that emotions are running a bit hot right now and we need to all take a step back and remember that this is a place of sharing and comfort where people come for support from people who "get it" because they share the same challenges.
I will also say that my blood pressure goes up a bit when I see the words "cure" and "fibromyalgia" in the same sentence. It's really hard to talk about a cure for something that doesn't have a defined cause yet. There is a lot of research - good research - and much of it is conflicting, and all of it at best has only a piece of the puzzle. Things we know for sure are limited - yes our CNS is running rampant - but the "why" of that is still very much up for debate, and other pieces that seem to be endocrine, and causes related to the immune system (don't confuse with auto-immune) are still very much part of the conversation.
Again, people are running a bit hot right now. Please can we dial it down a bit and remember that we're no less a community because we aren't face to face. If you wouldn't say the words to your neighbor over the fence, you shouldn't say them here.