1. < Fibromyalgia

Fibromyalgia pain: Let's connect

Posted by clownscrytoo @clownscrytoo, Oct 22, 2016

Is there anyone here that suffers from fibro? I had the 'tender spot test' several years ago and I had 17 out of the 18. I try my hardest to get through the pain with my 4 hydrocodone/acetaminaphine pills a day, Tiger Balm rubbed into areas that are the worst, light exercises, and distracting myself with hobbies or chores, etc; but there are many occasions where none of that helps and I spend most of the day holding down the couch, getting up about 30-45 minutes after that, walking/standing around the house for 15-20 minutes, or sitting for about 15-30 min. I do not drive and my husband works 6 days a week, overtime almost every day, so I'm alone a lot. my wonderful husband is very supportive and I am very grateful for that, but my only other friends are online, out of state, and I will probably never even get to meet them. when extreme pain takes over, my depression takes over and it is so difficult to find hope. does anyone have tips for fibro, whether diet or over-the-counter meds (I've tried them all, I think), or anything, besides hobbies and such? I've tried every over-the-counter med, and the Tiger Balm does cover some of what the pain pill doesn't help, but I'm hoping one of our members might have some knowledge that could help. I'd really appreciate it.
hugz,
Clownscrytoo

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

steeldove | @steeldove | Aug 20, 2017

clownscrytoo, Here's something that you may find helpful:
Published 2 years ago by Jennifer Nejman Bohonak in Medical Research, Patient Care
Neurologist Anne Louise Oaklander, MD, PhD, of Massachusetts General Hospital, is devoting her career to helping patients who suffer from unexplained symptoms, including chronic pain and itch, and syndromes, like fibromyalgia, whose cause is unknown.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms.”
She has received national and international recognition for her research. In 2013, her MGH lab discovered nerve damage to cells outside the brain (small-fiber polyneuropathy) was a cause for almost half of fibromyalgia cases. This gave many patients reassurance that the pain they felt was real and had a medical source.

Diagnosing the underlying neurological causes of mysterious symptoms can be challenging because there is no tumor, broken bone, malfunctioning organ or obvious physical sign that something is awry. “These are problems in the invisible wiring that controls our body’s functions,” says Dr. Oaklander, founder and director of the Nerve Unit at Mass General’s Department of Neurology.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms,” says Dr. Oaklander. “It’s really only at places like Mass General that are used to rare, unexplained diseases that patients can get a fair shake and get all of the latest technology and knowledge applied to understand their condition.”

Dr. Oaklander’s research has received national and international attention.
Dr. Oaklander believes some mysterious symptoms including chronic pain, itch, low blood pressure and gastrointestinal disturbances such as irritable bowel are sometimes caused by nerve cells sending faulty messages. “Even though there is no actual damage, it hurts no less,” she explains.

Discovering New Causes of Chronic Pain

Dr. Oaklander and her husband, MGH researcher Max Klein, PhD, published a study discovering a new type of polyneuropathy that causes chronic pain, fatigue, fainting and gastrointestinal problems in children and young adults. In this new “early onset small-fiber polyneuropathy,” it appears that patients’ immune systems are attacking their own nerve cells to trigger their symptoms. Because she learned their neuropathy was caused by an autoimmune problem, Dr. Oaklander was able to identify new treatments that addressed the underlying cause of the symptoms—a cure for the neuropathy, rather than just managing symptoms with pain medications. Many of these patients improved dramatically. She developed a new Immunotherapy clinic to serve this population.

Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains.
Dr. Oaklander’s team was also one of the first in the world to look at the question of whether nerve damage might cause fibromyalgia. Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains. For this study, Dr. Oaklander’s group gave fibromyalgia patients nerve tests and she collected tiny skin biopsies under local anesthesia.

Her lab then counted the numbers of pain-signaling nerves in the skin biopsies under the microscope. This showed that almost half of the fibromyalgia patients studied had small-fiber polyneuropathy, a nerve disease. Patients’ damaged nerves were sending faulty signals to the brain, causing pain, sleep and digestive problems. This first evidence of an objective medical cause of fibromyalgia was widely covered in the media, including in “USA Today” and “Scientific American Mind.”

Investigating Noninvasive Treatments

Dr. Oaklander’s team is starting research on noninvasive brain stimulation. Since the brain operates using electrical signals, electricity, as well as medication, can be used to change its firing. Earlier brain-stimulation devices required surgical implantation into the brain, which, although effective, deterred many patients. Her lab is working to determine whether brain stimulation performed noninvasively, from outside the body, can effectively treat neuropathic pain. This requires neither surgery nor medications.

Philanthropy enabled Dr. Oaklander to purchase equipment for the noninvasive brain stimulation lab and to begin her research. The support of donors helps her push the field closer to finding answers for more patients with unexplained symptoms.

“We want to uncover the underlying causes of some of the chronic pain diseases.”
“Modern medicine has moved beyond merely symptom management to finding the cause of disease and eliminating it,” Dr. Oaklander says. “Our lab is trying to move the pain field in the same direction. We want to uncover the underlying causes of some of the chronic pain diseases because then, the causes can be treated and patients may be able to find relief for their chronic pain without relying on painkiller medications.”

REPLY
2 replies
momo6 | @momo6 | Aug 27, 2017

I have IBS and am presently undergoing tests for other auto immune diseases. My good friend has Fibromyalgia and has found relief and remission of symptoms with an alternative approach by Dr. R. Paul St. Amand MD. and Claudia Craig Marek. She takes a small dose of guafisen daily. I'm not sure how much. There was a time when she couldn't be touched, didn't want to get out of bed, or do anything. While she isn't healed 100%, she has a hard time in colder weather, but taking he guafisen she is able to hug, she exercises, does social activities and is living her life.

REPLY
jenapower | @jenapower | Aug 27, 2017

Momo, i'm very interested in hearing if this works for your friend. I tried taking the recommended dosages for a number of months, although I didn't actually go see Dr. Amand who I believe is here in So. California where I am. The problem that I had was that it requires taking absolutely no aspirin/salicylates. It cannot be in any other medication you take, it can't be in any pain rub you use, you have to read every label to make sure there are no salicylates in it. There were patches and rubs that I used that had it and if you read his methods, this is the one thing that can in activate the Guafisen. I'm curious if she is following that requirement and if she finds it doable. I found it very difficult to stay away from any aspirin because it's in so many medications and rubs and patches. I eventually gave up because I was getting any relief but I figured it was because I wasn't true to his protocol. Thank you for mentioning this, Jennifer

REPLY
no energy lady | @noenergylady | Aug 28, 2017
In reply to @steeldove "clownscrytoo, Here's something that you may find helpful: Published 2 years ago by Jennifer Nejman Bohonak..." + (show)
@steeldove

clownscrytoo, Here's something that you may find helpful:
Published 2 years ago by Jennifer Nejman Bohonak in Medical Research, Patient Care
Neurologist Anne Louise Oaklander, MD, PhD, of Massachusetts General Hospital, is devoting her career to helping patients who suffer from unexplained symptoms, including chronic pain and itch, and syndromes, like fibromyalgia, whose cause is unknown.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms.”
She has received national and international recognition for her research. In 2013, her MGH lab discovered nerve damage to cells outside the brain (small-fiber polyneuropathy) was a cause for almost half of fibromyalgia cases. This gave many patients reassurance that the pain they felt was real and had a medical source.

Diagnosing the underlying neurological causes of mysterious symptoms can be challenging because there is no tumor, broken bone, malfunctioning organ or obvious physical sign that something is awry. “These are problems in the invisible wiring that controls our body’s functions,” says Dr. Oaklander, founder and director of the Nerve Unit at Mass General’s Department of Neurology.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms,” says Dr. Oaklander. “It’s really only at places like Mass General that are used to rare, unexplained diseases that patients can get a fair shake and get all of the latest technology and knowledge applied to understand their condition.”

Dr. Oaklander’s research has received national and international attention.
Dr. Oaklander believes some mysterious symptoms including chronic pain, itch, low blood pressure and gastrointestinal disturbances such as irritable bowel are sometimes caused by nerve cells sending faulty messages. “Even though there is no actual damage, it hurts no less,” she explains.

Discovering New Causes of Chronic Pain

Dr. Oaklander and her husband, MGH researcher Max Klein, PhD, published a study discovering a new type of polyneuropathy that causes chronic pain, fatigue, fainting and gastrointestinal problems in children and young adults. In this new “early onset small-fiber polyneuropathy,” it appears that patients’ immune systems are attacking their own nerve cells to trigger their symptoms. Because she learned their neuropathy was caused by an autoimmune problem, Dr. Oaklander was able to identify new treatments that addressed the underlying cause of the symptoms—a cure for the neuropathy, rather than just managing symptoms with pain medications. Many of these patients improved dramatically. She developed a new Immunotherapy clinic to serve this population.

Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains.
Dr. Oaklander’s team was also one of the first in the world to look at the question of whether nerve damage might cause fibromyalgia. Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains. For this study, Dr. Oaklander’s group gave fibromyalgia patients nerve tests and she collected tiny skin biopsies under local anesthesia.

Her lab then counted the numbers of pain-signaling nerves in the skin biopsies under the microscope. This showed that almost half of the fibromyalgia patients studied had small-fiber polyneuropathy, a nerve disease. Patients’ damaged nerves were sending faulty signals to the brain, causing pain, sleep and digestive problems. This first evidence of an objective medical cause of fibromyalgia was widely covered in the media, including in “USA Today” and “Scientific American Mind.”

Investigating Noninvasive Treatments

Dr. Oaklander’s team is starting research on noninvasive brain stimulation. Since the brain operates using electrical signals, electricity, as well as medication, can be used to change its firing. Earlier brain-stimulation devices required surgical implantation into the brain, which, although effective, deterred many patients. Her lab is working to determine whether brain stimulation performed noninvasively, from outside the body, can effectively treat neuropathic pain. This requires neither surgery nor medications.

Philanthropy enabled Dr. Oaklander to purchase equipment for the noninvasive brain stimulation lab and to begin her research. The support of donors helps her push the field closer to finding answers for more patients with unexplained symptoms.

“We want to uncover the underlying causes of some of the chronic pain diseases.”
“Modern medicine has moved beyond merely symptom management to finding the cause of disease and eliminating it,” Dr. Oaklander says. “Our lab is trying to move the pain field in the same direction. We want to uncover the underlying causes of some of the chronic pain diseases because then, the causes can be treated and patients may be able to find relief for their chronic pain without relying on painkiller medications.”

Jump to this post

Hallelujah! Hooray for Dr. Oaklander. I get so upset when a specialist says there is nothing wrong- all their tests came back normal- so they look at me like oh she's just a typical woman complaining about everything. I leave feeling worse than ever and cry all the way home. Sometimes I feel so worthless. The fatigue is almost worse than the pain. No one seems to really understand except my husband. I went to a Mayo Clinic pain management session and he attended with me. He heard from others and the medical people that were leading it and learned what I am going through.

REPLY
momo6 | @momo6 | Aug 28, 2017

I have auto immune disease and am presently testing. My friend has fibromyalgia and read a good by R. Paul St. Amand M.D. and Claudia Craig Marek. Before starting his alternative therapy she couldn't be touched, couldn't go outside in cold weather, she had bowel issues, didn't want to get out of bed. When she started this therapy (taking guafisen and many diet changes) it got worse before it got better, and now she claims her symptoms are in remission. She can hug, get about in cold weather(even though it is still hard for her), exercises, and does social activities. She seems her old self.

REPLY
steeldove | @steeldove | Aug 28, 2017
In reply to @steeldove "clownscrytoo, Here's something that you may find helpful: Published 2 years ago by Jennifer Nejman Bohonak..." + (show)
@steeldove

clownscrytoo, Here's something that you may find helpful:
Published 2 years ago by Jennifer Nejman Bohonak in Medical Research, Patient Care
Neurologist Anne Louise Oaklander, MD, PhD, of Massachusetts General Hospital, is devoting her career to helping patients who suffer from unexplained symptoms, including chronic pain and itch, and syndromes, like fibromyalgia, whose cause is unknown.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms.”
She has received national and international recognition for her research. In 2013, her MGH lab discovered nerve damage to cells outside the brain (small-fiber polyneuropathy) was a cause for almost half of fibromyalgia cases. This gave many patients reassurance that the pain they felt was real and had a medical source.

Diagnosing the underlying neurological causes of mysterious symptoms can be challenging because there is no tumor, broken bone, malfunctioning organ or obvious physical sign that something is awry. “These are problems in the invisible wiring that controls our body’s functions,” says Dr. Oaklander, founder and director of the Nerve Unit at Mass General’s Department of Neurology.

“Many of these patients are received with a lot of skepticism because most tests and doctors do not identify any cause for their symptoms,” says Dr. Oaklander. “It’s really only at places like Mass General that are used to rare, unexplained diseases that patients can get a fair shake and get all of the latest technology and knowledge applied to understand their condition.”

Dr. Oaklander’s research has received national and international attention.
Dr. Oaklander believes some mysterious symptoms including chronic pain, itch, low blood pressure and gastrointestinal disturbances such as irritable bowel are sometimes caused by nerve cells sending faulty messages. “Even though there is no actual damage, it hurts no less,” she explains.

Discovering New Causes of Chronic Pain

Dr. Oaklander and her husband, MGH researcher Max Klein, PhD, published a study discovering a new type of polyneuropathy that causes chronic pain, fatigue, fainting and gastrointestinal problems in children and young adults. In this new “early onset small-fiber polyneuropathy,” it appears that patients’ immune systems are attacking their own nerve cells to trigger their symptoms. Because she learned their neuropathy was caused by an autoimmune problem, Dr. Oaklander was able to identify new treatments that addressed the underlying cause of the symptoms—a cure for the neuropathy, rather than just managing symptoms with pain medications. Many of these patients improved dramatically. She developed a new Immunotherapy clinic to serve this population.

Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains.
Dr. Oaklander’s team was also one of the first in the world to look at the question of whether nerve damage might cause fibromyalgia. Fibromyalgia is a multi-symptom condition, affecting up to 5 percent of the population that causes fatigue and difficult-to-manage pains. For this study, Dr. Oaklander’s group gave fibromyalgia patients nerve tests and she collected tiny skin biopsies under local anesthesia.

Her lab then counted the numbers of pain-signaling nerves in the skin biopsies under the microscope. This showed that almost half of the fibromyalgia patients studied had small-fiber polyneuropathy, a nerve disease. Patients’ damaged nerves were sending faulty signals to the brain, causing pain, sleep and digestive problems. This first evidence of an objective medical cause of fibromyalgia was widely covered in the media, including in “USA Today” and “Scientific American Mind.”

Investigating Noninvasive Treatments

Dr. Oaklander’s team is starting research on noninvasive brain stimulation. Since the brain operates using electrical signals, electricity, as well as medication, can be used to change its firing. Earlier brain-stimulation devices required surgical implantation into the brain, which, although effective, deterred many patients. Her lab is working to determine whether brain stimulation performed noninvasively, from outside the body, can effectively treat neuropathic pain. This requires neither surgery nor medications.

Philanthropy enabled Dr. Oaklander to purchase equipment for the noninvasive brain stimulation lab and to begin her research. The support of donors helps her push the field closer to finding answers for more patients with unexplained symptoms.

“We want to uncover the underlying causes of some of the chronic pain diseases.”
“Modern medicine has moved beyond merely symptom management to finding the cause of disease and eliminating it,” Dr. Oaklander says. “Our lab is trying to move the pain field in the same direction. We want to uncover the underlying causes of some of the chronic pain diseases because then, the causes can be treated and patients may be able to find relief for their chronic pain without relying on painkiller medications.”

Jump to this post

@noenergylady Check on line for http://www.neuropathycommons.org and look for doctors around the U.S. and the world that are working with Dr. Oaklander's research and methods. I'm working on getting an appointment with a doc at Washington University School of Medicine who I found on that site. Good luck!

REPLY
Walkers56 | @walkers56 | Sep 21, 2017

Hi, I am also diagnosed with fibro. When my symptoms first appeared I could barely walk or leave my house. I had just graduated from nursing school and my family basically made me take a job i was offered because I was scared about not being able to function. Thankfully the job and new location afforded me the opportunity to be seen at Mayo's fibro clinic where I was started on effexor (I have not taken pain pills for my fibro to date) and attended a 3 day course on pain management. The medication massively increased my quality of life and I know I have the clinic here to support me should I have a set back. My life is not perfect, I'm fatigued most of the time and I still can't work out like I used to but it's better than it was in the beginning. I hope you find something that works for you. This is a syndrome than can be very isolating. Are you in any clubs like a reading group or the likes?

REPLY
1 reply
no energy lady | @noenergylady | Sep 21, 2017
In reply to @walkers56 "Hi, I am also diagnosed with fibro. When my symptoms first appeared I could barely walk..." + (show)
@walkers56

Hi, I am also diagnosed with fibro. When my symptoms first appeared I could barely walk or leave my house. I had just graduated from nursing school and my family basically made me take a job i was offered because I was scared about not being able to function. Thankfully the job and new location afforded me the opportunity to be seen at Mayo's fibro clinic where I was started on effexor (I have not taken pain pills for my fibro to date) and attended a 3 day course on pain management. The medication massively increased my quality of life and I know I have the clinic here to support me should I have a set back. My life is not perfect, I'm fatigued most of the time and I still can't work out like I used to but it's better than it was in the beginning. I hope you find something that works for you. This is a syndrome than can be very isolating. Are you in any clubs like a reading group or the likes?

Jump to this post

I appreciate your response. I also attended Mayo's pain management and it helped but the neurologist I saw was not helpful at all. Since I "passed" the tests she didn't know what to do. N, I am not in any reading groups.

REPLY
Parus | @parus | Jan 7, 2018

@clownscrytoo I am in one of my lows and lack energy to even think about doing something. Depression engulfs me when the pain gets worse. Loneliness takes any energy that may have hidden a way. Is what it is. In that dark chasm of not wanting to try. Any of the meds for fibro mess terribly with my mind and I become suicidal on most of them. The Cannabis thing is illegal where I reside and dubious about this as a solution. With the quirky reactions I have to medications I shudder at what this may do. Just because I can no longer work does not mean I am happy w/o a quality of life. I find some quality at times. Excuse please, head not thinking positive at this time.

REPLY
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