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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do You Have Fibromyalgia

Do You Have Fibromyalgia?

  • Yes

    Votes: 14 60.9%
  • No

    Votes: 6 26.1%
  • Not Sure

    Votes: 3 13.0%

  • Total voters
    23
Messages
75
I'm certain 99.9% of you know the definition of Fibromyalgia but just in case...
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

The pain associated with fibromyalgia often is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points.People with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms.

FM can not and will never be diagnosed by a blood test. Analysis of the brain and spinal fluid is the only certain way to have an absolute understanding of this illness. The technology is there, it's only a matter of time before the diagnostic tests reach the universal platform.
 

Tony Mach

Show me the evidence.
Messages
146
Location
Upper Palatinate, Bavaria
Fibromyalgia (FM) can not and will never be diagnosed by a blood test. Analysis of the brain and spinal fluid is the only certain way to have an absolute understanding of this illness. The technology is there, it's only a matter of time before the diagnostic tests reach the universal platform.

Alan Light has found gene-expression differences in blood cells between FM patients and controls, with regards to receptors that sense pain and fatigue. FM could be very well diagnosed by blood test. So it is not simply that "normal" levels of pain (and fatigue) are amplified in the brain of FM patients FM patients HAVE a higher level of pain, same as ME/CFS patients.

I would call the "central sensitization in FM patients" theory to be idealistic BS from scientists (and I am using the term very loosely) who have a hard time letting go of the "it is all in the brain" paradigm, just because they don't know what they should look for and how to do it.
 

Francelle

Senior Member
Messages
444
Location
Victoria, Australia
Alan Light has found gene-expression differences in blood cells between FM patients and controls, with regards to receptors that sense pain and fatigue. FM could be very well diagnosed by blood test. So it is not simply that "normal" levels of pain (and fatigue) are amplified in the brain of FM patients FM patients HAVE a higher level of pain, same as ME/CFS patients.

I would call the "central sensitization in FM patients" theory to be idealistic BS from scientists (and I am using the term very loosely) who have a hard time letting go of the "it is all in the brain" paradigm, just because they don't know what they should look for and how to do it.

I agree. I have always considered this pain sensitisation/amplification theory to be fanciful to say the least. As I see it the underlying premise of that theory then is that ALL people have pain ALL the time but they just don't feel it because they don't have this heightened pain sensitisation which we have. If that were true this must therefore mean that significant pain is generated during NORMAL functioning of the human body. Additionally if ALL people have this awful pain all the time but don't feel it, then what makes them feel it when something does go wrong in their body, like an injury or infection? It doesn't seem like a feasible argument to me.

I would say that I have about four or five types of pain most of the time. There is neuropathic pain (24/7 burning pain), muscle pain/constant aching, stiffness of muscles (like I have climbed a mountain even after minimal walking), stabbing joint pain. I don't believe I have the tender points to the degree that is talked about - although they are NOT now meant to be used for diagnostic purposes.
 
Messages
75
Is this what you are referring to? http://www.offerutah.org/Alanlight2011.htm
Central sensitization is the fundamental argument for supporting the mechanism behind migraine headaches, and I'm sure you wouldn't call that idealistic BS. Drugs have been developed that counteract this phenomenon. http://www.youtube.com/watch?v=f3qFJNRuOVU
And I still feel strongly that FM won't be diagnosed by a blood test any time soon (10 years at least) but rather by f-mri and spinal taps. Based on personal experience, I've had tons of bloodwork, ranging from basic to very specific, and all have failed to find anything. My blood is clean and my muscle tissue is fine. The problem lies in the brain. A lot of solid research focuses around brain chemicals and hormones.

Changes in brain chemicals -- Some people with fibromyalgia have abnormal levels of brain chemicals called neurotransmitters. Specifically, they have low levels of serotonin, which affects mood, promotes sleep, and helps reduce the perception of pain. They often have high levels of substance P, which transmits the "pain message" to the brain.
Disregulation of the autonomic nervous system -- The autonomic nervous system releases hormones that affect how you react to stress. Some doctors think people with fibromyalgia release these hormones differently when they experience stress, and the hormones affect the perception of pain.
Sleep problems -- The majority of people with fibromyalgia report sleep problems, and especially have trouble with stage 4 sleep, the most restful stage in which the body repairs itself. Some doctors believe that the lack of restful sleep means that the muscles of people with fibromyalgia are not able to repair the tiny tears and trauma that occur everyday, leading to muscle pain and fatigue. Other doctors believe that sleep problems are a result, not a cause, of fibromyalgia.
 

mellster

Marco
Messages
805
Location
San Francisco
I agree with livingwithcfids here, and not just regarding FM, for the reason that serology is fairly advanced now and has been the main focus of researchers trying to find a distinguished marker for CFS/FM/ME for so many years now with little success. It could very well be that the majority of these conditions plays out in tissue anywhere in the body rather than on the blood. Just a hypothesis, but I don't think it's BS. It would be nice to have a simple blood test detect it, but that begs the question why it has not been discovered yet, given the amount of blood drawn from patients. Now if you ask how many tissue samples have been taken so far, I think the answer would be few and far between, just because it is far more inconvenient, invasive and expensive. cheers
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I can't vote in this poll cause there isn't a category that fits.

I had fibro, but after some treatment with an autonomic specialist it went away.:thumbsup:

Sushi
 

hensue

Senior Member
Messages
269
your fibro went totally away??? no pain? That is awesome as I sit here now freaking hurting all over. Is your main symptom now severe fatigue?? Who was the autonomic specialist?

Thanks
Susie
 

SaraM

Senior Member
Messages
526
I can't vote in this poll cause there isn't a category that fits.

I had fibro, but after some treatment with an autonomic specialist it went away.:thumbsup:

Sushi

May I ask what the treatment was, and if you can give me the name of this doc?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
your fibro went totally away??? no pain? That is awesome as I sit here now freaking hurting all over. Is your main symptom now severe fatigue?? Who was the autonomic specialist?

Thanks
Susie

Yeah, it all went away. I don't know which part of the treatment did it, but it seemed like it was medication that raised the level of norepinephrine in the synapses--i.e. SNRI's.

My autonomic specialist is in North Florida. He "lost" his position as a hospital internist due to having ME/CFS himself, with the main symptoms being autonomic. He went back to medical school to study the autonomic system and began treating patients a couple of days a week. His own health prevents him seeing a lot of patients though, so he might not be a good option as a doctor.

However, you might look into the type of meds I mentioned. The one I noticed the big difference with was strattera. Again, some things work for some and not for others.

Good luck,
Sushi