Fibromyalgia: A Very Different Disease

What diseases do you think ME/CFS/FM is most like? ((Give top three answers)

  • Central nervous system autoimmune disorders such as multiple sclerosis

    Votes: 52 85.2%
  • Neurological disorders such as migraine and cluster headache

    Votes: 21 34.4%
  • Functional disorders like IBS, TMJ and interstitial cystitis

    Votes: 8 13.1%
  • Neurological Disorders affecting movement such as Parkinson's and Tourette's Syndrome

    Votes: 11 18.0%
  • Autoimmune disorders such as lupus and rheumatoid arthritis

    Votes: 24 39.3%
  • Mood disorders such as anxiety and depression

    Votes: 2 3.3%
  • Cardiovascular disorders such as heart disease, diabetes and peripheral artery disease

    Votes: 1 1.6%
  • Autonomic nervous system disorders such as orthostatic intolerance and POTS

    Votes: 36 59.0%
  • Endocrine disorders such as Addison's disease, thyroid and Cushing's disease

    Votes: 14 23.0%

  • Total voters
    61

Katie

Active Member
can it be that the pain with the intake of LDN increases at first and then, after some days or weeks does go down?
Hi, Yes, herxing happens with most of the meds I start but I started on a very small dose and worked up. I was on this med for 6 weeks between starting and stopping and although the pain was much improved I had nausea and vomiting and POTs so bad I was bed bound. This all went away until I tried methadone-same reaction. Finally I tried cymbalta which was like a dream-I had some s/e but mostly just mild nausea. Unfortunately it's not working as well after 2 years.
 

Katie

Active Member
Katie, I, also experienced astronomical pain (Good descriptor) with Ldn, went away right after I stopped. Have tried making thc and CBD oil from MJ for edibles but not able to get correct strains yet, not a smoker either. My pain has come down on Tramadol, with the general body pain and malaise being better but the more deep and specific pains and neuro feet are much less improved, though they have not been a pain level of 10 for a few weeks. I try every fibro potential gadget with a trial period and will report on one in a few months,

I recently had surgery on my eye muscle and tramadol was given post-op. It worked far better than morphine for me. The tramadol affected my body pain the best and the morphine affected my head but not as well with the body pain.
 

KweenPita

Active Member
You know Cort, they say us MFers, oh Freudian slip that's not what the Medical Community at large treats us FMers I meant to say still like this real life example. I go to VA in Carrollton Ga for Urinary Tract Infection. I wouldn't have gone except my real Dr, can't get me in and my son the PA is out of town. I bring in my dip stick to show blood and nitrates. So it's a no brained. UTI can be deadly to me if they go to my kidneys, because I have kidney disease, my kidneys shut. Last time this happened, I did get my shot at death, but my daughter was with me at the time and noticed I couldn't move my limbs or talk right and called ambulance. Anyways, I need Bactrim 2 weeks to get rid of. So Dumbass, I mean VA Dr says no take this other crapped, for 5 days and by the way I noticed you take muscle relaxer 3 times a day. I said yes for muscle spasms. She said but you only have Fibromyalgia, I have MS, and I don't take that many. I just looked at her, and said nothing. Because I had some very nasty retorts. Then 2 days later my little PMR Doctor looks at my back and says oh your muscles are so tense. And she tried to give me my acupuncture treatment, and no lie my muscles pushed the needles out. Hard to fake that. Dr "you only have Fibromyalgia DumbAss" And in my 23 years of this AFFLICTION that doesn't kill you but at times I wanted to die, I like many others have been insulted. So someone in the NIH needs to get off their ASSETS and CREDITIALS and come out in a big way and validate, it's not just effing FIBROMYALGIA! It is FIBROMYALGIA! It's REAL, not a Fignewton of my Imagination! And if we want to get in a pissing match on what sucks most Dr Dumbass, I know people who can beat you without unzipping their jeans and sorry by the Grace of God I am no longer one of them cause I love to do it just to piss you off. Smiley Face
 

Merida

Well-Known Member
Of all the disorders we are most alike are the Chiari/ tethered cord/and syringomyelia people. These issues are known to have some association with scoliosis, and may commonly co-occur. These patients commonly have dysautonomia. The late Bernard Williams ( neurosurgeon and syringomyelia expert) stated that a syrinx can cause any symptom except those related to the sense of smell.

I attended several Chiari conferences, met the patients and researchers. I joined CSF ( Chiari and Syringomyelia Foundation). At my FM / CFS support group I would sometimes read Chiari/ syringomyelia patient stories and symptoms, then ask what these patients were dx with. The answer was always Fibromyalgia. Nope! However, no one really wanted to know more because no one wanted these diagnoses.

I am not implying that we all have classic Chiari/ SM/ tethered cord. However, I am suggesting that many, most, or all have altered spinal fluid flow / altered blood flow / and/or altered tension in the dural- meningeal system due to congenital or acquired structural issues. Fortunately some Chiari/ SM researchers are now focused on CSF flow and pressures.

I did have a CINE MRI flow study done in 2006 - with a neurosurgeon expert. It looked at spinal fluid flow in lower brain/ upper neck). Results: No true Chiari, very abnormal CSF flow, with diminished spinal fluid flow in some areas and "flow jets" in other areas. I have a small posterior fossa and short clivus - ie this translates to a small space where my cerebellum and brain stem are. Has anyone else had these studies???
 

KweenPita

Active Member
Of all the disorders we are most alike are the Chiari/ tethered cord/and syringomyelia people. These issues are known to have some association with scoliosis, and may commonly co-occur. These patients commonly have dysautonomia. The late Bernard Williams ( neurosurgeon and syringomyelia expert) stated that a syrinx can cause any symptom except those related to the sense of smell.

I attended several Chiari conferences, met the patients and researchers. I joined CSF ( Chiari and Syringomyelia Foundation). At my FM / CFS support group I would sometimes read Chiari/ syringomyelia patient stories and symptoms, then ask what these patients were dx with. The answer was always Fibromyalgia. Nope! However, no one really wanted to know more because no one wanted these diagnoses.

I am not implying that we all have classic Chiari/ SM/ tethered cord. However, I am suggesting that many, most, or all have altered spinal fluid flow / altered blood flow / and/or altered tension in the dural- meningeal system due to congenital or acquired structural issues. Fortunately some Chiari/ SM researchers are now focused on CSF flow and pressures.

I did have a CINE MRI flow study done in 2006 - with a neurosurgeon expert. It looked at spinal fluid flow in lower brain/ upper neck). Results: No true Chiari, very abnormal CSF flow, with diminished spinal fluid flow in some areas and "flow jets" in other areas. I have a small posterior fossa and short clivus - ie this translates to a small space where my cerebellum and brain stem are. Has anyone else had these studies???
Same here, my head sits 2 inches forward. So at times I feel like my head is too heavy for my neck. I get migraines at the back of my head, not the sides. No medication helps. They have tried everything. I have stopped having them with vagal nerve block. I used to have to pack my head in ice and stay in dark room.
 

Merida

Well-Known Member
Same here, my head sits 2 inches forward. So at times I feel like my head is too heavy for my neck. I get migraines at the back of my head, not the sides. No medication helps. They have tried everything. I have stopped having them with vagal nerve block. I used to have to pack my head in ice and stay in dark room.
My head is forward too, but so is my husband's, and he is fine. I get those heavy feelings when my neck ( especially my atlas) or pelvis is really 'out.' Oh, geez - what we go through. Migraines yes , me, my son, my Mom, my maternal grandmother. So glad the vagal nerve block helped you.
 

KweenPita

Active Member
My head is forward too, but so is my husband's, and he is fine. I get those heavy feelings when my neck ( especially my atlas) or pelvis is really 'out.' Oh, geez - what we go through. Migraines yes , me, my son, my Mom, my maternal grandmother. So glad the vagal nerve block helped you.
And here I thought I was the only weird one! Since I don't know any of my paternal side. You just maybe a long lost relative. Or just weird like me, with midline defects and probably MTHFR GENE Defects.
 

Merida

Well-Known Member
I did 23andMe, then gave up my results to geneticgenie who did a methylation analysis for free. I am okay on the MTHFR genes , but could have an issue with MAO-A R297R . Yes, I have midline defects - including a mild spina bifida occulta - as does my daughter. Also, small foramina in sacrum ( ie underdevelopment of sacrum), thoracic vertebral hemangiomas, cervical ribs, deviated septum, and more. I wonder how many of us have these little glitches ?

Cort posted on April 18, 2015, a research article , "Shortness of filum terminale represents an anatomical specific feature in fibromyalgia : a nuclear magnetic resonance and clinical study. ". The filum is non nerve tissue that connects to the end of the spinal cord then fuses with the lining of the tailbone. It is supposed to keep the spinal cord stable, and keep excess tension off the cord. Hansasuta, Tubbs,many Oakes (famous neurosurgeons at Univ. of Alabama) published that 3 out of 27 people (cadavers) studied had a filum fused off center in the spinal canal. So, a short filum fused off the center line could cause spinal cord torque and tension???? Also, is this the reason for idiopathic scoliosis? Big questions - not answered.
 

KweenPita

Active Member
I did 23andMe, then gave up my results to geneticgenie who did a methylation analysis for free. I am okay on the MTHFR genes , but could have an issue with MAO-A R297R . Yes, I have midline defects - including a mild spina bifida occulta - as does my daughter. Also, small foramina in sacrum ( ie underdevelopment of sacrum), thoracic vertebral hemangiomas, cervical ribs, deviated septum, and more. I wonder how many of us have these little glitches ?

Cort posted on April 18, 2015, a research article , "Shortness of filum terminale represents an anatomical specific feature in fibromyalgia : a nuclear magnetic resonance and clinical study. ". The filum is non nerve tissue that connects to the end of the spinal cord then fuses with the lining of the tailbone. It is supposed to keep the spinal cord stable, and keep excess tension off the cord. Hansasuta, Tubbs,many Oakes (famous neurosurgeons at Univ. of Alabama) published that 3 out of 27 people (cadavers) studied had a filum fused off center in the spinal canal. So, a short filum fused off the center line could cause spinal cord torque and tension???? Also, is this the reason for idiopathic scoliosis? Big questions - not answered.
I already know midline defects run in my family without the genetic testing. Mild things like tongue tied, eye brows a little off, crooked smiles, and with the Fibromyalgia.org just recommendations.of taking the MTHFR B12 Vitamins, I just started them without the DNA testing. But maybe now come spring in my husband's overtime season I will take it. Also, Dr Ben, the MTHFR GENE RESEARCH GO TO Doctor, says if you have auto immune diseases, Fibromyalgia, abnormal pap, cancer, midlines, blood clotting, and a whole plethora NIH and CDC, gloss over he says be tested. And guess what!?!? He is being proven right! People who get on his site whole have those things I listed above from memory, because I have them do have the gene. But I have not been tested yet, took the cheap cure, quit my B12 shots which my body was storing in high amounts not using and can turn into formaldehyde, and got the Active B12 with Folate. Also got the right kind of Magnesium with Malate, next the mixture for Ribose Aid Drink, off Dr Ben's MTHFR.org site which is supposed to help energy. I am about to go off the medication grid BABY! Deborah the 10 Percenter is rising from the ashes! God willing and getting off as much poison as possible down from 15 different daily meds to 5 !
 

KweenPita

Active Member
I already know midline defects run in my family without the genetic testing. Mild things like tongue tied, eye brows a little off, crooked smiles, and with the Fibromyalgia.org just recommendations.of taking the MTHFR B12 Vitamins, I just started them without the DNA testing. But maybe now come spring in my husband's overtime season I will take it. Also, Dr Ben, the MTHFR GENE RESEARCH GO TO Doctor, says if you have auto immune diseases, Fibromyalgia, abnormal pap, cancer, midlines, blood clotting, and a whole plethora NIH and CDC, gloss over he says be tested. And guess what!?!? He is being proven right! People who get on his site whole have those things I listed above from memory, because I have them do have the gene. But I have not been tested yet, took the cheap cure, quit my B12 shots which my body was storing in high amounts not using and can turn into formaldehyde, and got the Active B12 with Folate. Also got the right kind of Magnesium with Malate, next the mixture for Ribose Aid Drink, off Dr Ben's MTHFR.org site which is supposed to help energy. I am about to go off the medication grid BABY! Deborah the 10 Percenter is rising from the ashes! God willing and getting off as much poison as possible down from 15 different daily meds to 5 !
Correction MTHFR.net sorry! And vitamins are from Seeking Health, only $20 for 2 months, recommended that start with breaking and starting half dose, then working up. Are under tongue. Just repeating what read on Dr Ben site.
 

AliceE

New Member
I did 23andMe, then gave up my results to geneticgenie who did a methylation analysis for free. I am okay on the MTHFR genes , but could have an issue with MAO-A R297R . Yes, I have midline defects - including a mild spina bifida occulta - as does my daughter. Also, small foramina in sacrum ( ie underdevelopment of sacrum), thoracic vertebral hemangiomas, cervical ribs, deviated septum, and more. I wonder how many of us have these little glitches ?

Cort posted on April 18, 2015, a research article , "Shortness of filum terminale represents an anatomical specific feature in fibromyalgia : a nuclear magnetic resonance and clinical study. ". The filum is non nerve tissue that connects to the end of the spinal cord then fuses with the lining of the tailbone. It is supposed to keep the spinal cord stable, and keep excess tension off the cord. Hansasuta, Tubbs,many Oakes (famous neurosurgeons at Univ. of Alabama) published that 3 out of 27 people (cadavers) studied had a filum fused off center in the spinal canal. So, a short filum fused off the center line could cause spinal cord torque and tension???? Also, is this the reason for idiopathic scoliosis? Big questions - not answered.
This (the shortness of filum terminal) struck a chord with me. I have no idea if I have it, but after reading this I looked it up, and it is apparently sometimes connected to the presence of a sacral dimple on the outside, just above the -well, I guess butt crack is the only way to say it. Now I don't have this either. But guess what? BOTH my daughters do! When my 6 yr old was born we freaked out because we'd never seen one before. They took her off for an ultrasound to check it wasn't a sign of something more worrying - it wasn't. Same exact thing with my now 2 yr old. The pediatrician said they were definitely genetic, so for a while my husband and I have been wondering who on earth in one of our families has an extra hole back there (cos that's exactly what it looks like!) and never told anyone. Now my mind is going nuts. Could my (hypothetic) tethered chord have led to their dimples? If so why don't I have a dimple? My mind does this constantly. My worst nightmare would be to have passed this unbearable thing down to them!
 
My 81 year old mother has lupus, Sjögren's, mild RA, and she had rheumatic fever as a teenager (all autoimmune diseases). I have ME+FM+sCRPSs3, Sjögren's, and maybe mild RA. Mom can run circles around me! She can sit down for 15 minutes, get rested and get back up again. She routinely gets 6 hours of sleep a night and she is perky and wide awake the next day. My sister and I are exhausted all the time, and I'm bedridden.

And, I'm sorry, but everybody says ME, ME+FM, ME+FM+CRPS isn't fatal, but we disagree. We think the reason cause of death is not attributed to ME is because there aren't any tests for it. It almost killed my sister when she was in her 20s. We found out later that our ME specialist really didn't think she was going to make it. He said he was really surprised when she pulled through. It's pushed me to the edge several times in the last couple of years, and we're convinced that's what killed our grandmother at the age of 69. They said she died of kidney failure, but we think that's because they simply didn't have the tests to see how bad her ME+FM+sCRPSs3-4 was. She was in a massive amount of pain and had been for 10 years. As I have mentioned before in other posts, she was 59 when she finally gave in and became bedridden, and the same has happened to me. (And before I'm accused of keeling over because of the power of suggestions, I didn't realize that it happened to us at the same age until a few months ago.) They blamed her pain on RA and of course she was never diagnosed with ME, FM or CRPS. (She died in 1979.) I recognize the symptoms now. I make exactly the same noise when my pain level goes past 10.

I wish they'd get a move on with the biomarker tests, and the tests for the pertinent autoimmune levels. That is why this disease is so invisible to doctors. We just don't have the test results to back us up. My ME specialist recently told me that ME patients frequently have white flecks in their lateral ventricles, which are visible on an MRI but are routinely ignored by radiologists as normal because "we don't know what they mean, so we just ignore them as being normal". Even when we show up on tests, we get ignored.
Kim D
 
Migraine Prevention - Neurologist approved
1. Feverfew capsules, 1 capsule twice a day
(Do not take within 2 hours of an iron supplement. It forms an insoluble, inert iron byproduct that just sits in the blood for the rest of your life. I take it during the night.)
Vitacost Feverfew - Standardized -- 650 mcg Parthenolides - 60 Capsules
2. Atenolol (prescription medication)
I take 50 mg about 5 pm and 50 mg at bedtime. My sister takes 50 mg about 7 pm and 25 mg at bedtime.
Kim D
 

Merida

Well-Known Member
This (the shortness of filum terminal) struck a chord with me. I have no idea if I have it, but after reading this I looked it up, and it is apparently sometimes connected to the presence of a sacral dimple on the outside, just above the -well, I guess butt crack is the only way to say it. Now I don't have this either. But guess what? BOTH my daughters do! When my 6 yr old was born we freaked out because we'd never seen one before. They took her off for an ultrasound to check it wasn't a sign of something more worrying - it wasn't. Same exact thing with my now 2 yr old. The pediatrician said they were definitely genetic, so for a while my husband and I have been wondering who on earth in one of our families has an extra hole back there (cos that's exactly what it looks like!) and never told anyone. Now my mind is going nuts. Could my (hypothetic) tethered chord have led to their dimples? If so why don't I have a dimple? My mind does this constantly. My worst nightmare would be to have passed this unbearable thing down to them!
Alice,
I have no unusual marks / dimples at all, yet was in fact dx with tethered cord by one of the few neurosurgeon experts ( former chief of Neurosurgery at Loma Linda hospital. ) If your kids are healthy and not complaining of symptoms, try not to worry. And, even though this short filum research has been published by one group, it has not been repeated. Nothing is 100 per cent, and this tethered cord thing is probably the most controversial subject in neurosurgeryz. I was told by one expert that patients suspected of having this must have urodynamic studies - that bladder symptoms are the hallmark of the disorder. So, I had that - yes , I have a lower motor neuron bladder . This translates as symptoms of leakage , hesitancy, frequency, sometimes difficulty emptying. But, I generally do okay.
 

PamJ

Active Member
I also suspect that many who are diagnosed with Fibro also have ME-CFS. It would be good to have a study of how many people with Fibro have post-exertional fatigue.
 

Merida

Well-Known Member
Yes, I am totally in the FM/CFS group and my main doc is a CFS/ME doc - an infectious disease/ immunologist. I have immune irregularities - like high tumor necrosis alpha. I ran a large FM/CFS group for 13 years. I can only recall a very few people who did not have profound fatigue. Plus, my son developed CFS/ME after Epstein-Barr infection in 1985 - age 4 ! He had multiple neurological issues for many years.

So, I have come to think that these disorders are very complex, with possible several factors leading to a symptomatic state: a structure issue that stresses the blood/brain barrier? Then a virus or other organism that takes advantage of this?

I led a large support group for 13 years. Interesting, however, that only 2 people ( out of hundreds) all those years got really, really well. The first one was a younger man who had 2 pages of symptoms that started with back pain following a move. He did the John Sarno program and got well. Another group member ( a young woman) with Raynauds and disabled student status listened to Mike's story ( not real name), read Sarno's books and got totally well. She began to relapse when she took a stressful job, quit the job, got better.

I asked a gifted Native American medicine man/ healer/ naturopath about the cause of CFS. He said he most always sees an emotional cause.

So, at the end of the day, I am left dazed, confused, and not sure of anything. But, I continue to search( sometimes in unusual places) hoping to find an answer.
 

Sally

New Member
I did 23andMe, then gave up my results to geneticgenie who did a methylation analysis for free. I am okay on the MTHFR genes , but could have an issue with MAO-A R297R . Yes, I have midline defects - including a mild spina bifida occulta - as does my daughter. Also, small foramina in sacrum ( ie underdevelopment of sacrum), thoracic vertebral hemangiomas, cervical ribs, deviated septum, and more. I wonder how many of us have these little glitches ?

Cort posted on April 18, 2015, a research article , "Shortness of filum terminale represents an anatomical specific feature in fibromyalgia : a nuclear magnetic resonance and clinical study. ". The filum is non nerve tissue that connects to the end of the spinal cord then fuses with the lining of the tailbone. It is supposed to keep the spinal cord stable, and keep excess tension off the cord. Hansasuta, Tubbs,many Oakes (famous neurosurgeons at Univ. of Alabama) published that 3 out of 27 people (cadavers) studied had a filum fused off center in the spinal canal. So, a short filum fused off the center line could cause spinal cord torque and tension???? Also, is this the reason for idiopathic scoliosis? Big questions - not answered.[/QUOTE[/QUOTE
 

Sally

New Member
You know Cort, they say us MFers, oh Freudian slip that's not what the Medical Community at large treats us FMers I meant to say still like this real life example. I go to VA in Carrollton Ga for Urinary Tract Infection. I wouldn't have gone except my real Dr, can't get me in and my son the PA is out of town. I bring in my dip stick to show blood and nitrates. So it's a no brained. UTI can be deadly to me if they go to my kidneys, because I have kidney disease, my kidneys shut. Last time this happened, I did get my shot at death, but my daughter was with me at the time and noticed I couldn't move my limbs or talk right and called ambulance. Anyways, I need Bactrim 2 weeks to get rid of. So Dumbass, I mean VA Dr says no take this other crapped, for 5 days and by the way I noticed you take muscle relaxer 3 times a day. I said yes for muscle spasms. She said but you only have Fibromyalgia, I have MS, and I don't take that many. I just looked at her, and said nothing. Because I had some very nasty retorts. Then 2 days later my little PMR Doctor looks at my back and says oh your muscles are so tense. And she tried to give me my acupuncture treatment, and no lie my muscles pushed the needles out. Hard to fake that. Dr "you only have Fibromyalgia DumbAss" And in my 23 years of this AFFLICTION that doesn't kill you but at times I wanted to die, I like many others have been insulted. So someone in the NIH needs to get off their ASSETS and CREDITIALS and come out in a big way and validate, it's not just effing FIBROMYALGIA! It is FIBROMYALGIA! It's REAL, not a Fignewton of my Imagination! And if we want to get in a pissing match on what sucks most Dr Dumbass, I know people who can beat you without unzipping their jeans and sorry by the Grace of God I am no longer one of them cause I love to do it just to piss you off. Smiley Face
Both my rheumatologist (who has thrown every pain reliever he's licensed to heave at me with little success) and the surgeon who replaced my left hip 18 months ago agree that lumbar scoliosis is the source of my back pain, they sent me back to the surgeon who performed L-4/5 fusion 10 years ago. I asked them if I should mention the 'F' word (fibro)--reply was NO. Rheumy insists my fibro is secondary to OA PAIN (just about every joint in my 4'8" body --was 4'11" ten years ago--is affected. Surgeon plans a probable nerve block after an MRI next month. If that doesn't help, I'll probably go outside and spend the night in the snow bank recently deposited outside my house. But I have a question for any/all: I thought the FDA cracked down on genetic analysis, particularly 23&me, except for ancestry purposes? I really appreciate all the info this blog has presented, but I have to admit a lot of it is confusing: I'm getting too fatigued to research much more. Rheumy has had me on minocycline for months now (at my request), & switched me from Nucynta (totally useless) back to OxyContin, the only thing that seems to help, along with oxy breakthrus. I had been asking to try LDN but he said he wasn't knowledgeable enough. Now I hear from some of you that it isn't foolproof. Like I said, I'm stuck, don't know which way to go.....?
 

Merida

Well-Known Member
Sally, thank you for sharing your important experiences. I have been writing that scoliosis may be an important pre- disposing factor to the development of FM/CFS/ME, as scoliosis predisposes to a twist in the sacrum ( which supports the lumbar spine) and in the neck vertebrae - pinching nerves, blood vessels, and restricting CSF flow and blood drainage from the brain. ( read Michael Flanagan - The Downside of Upright Posture.) The real scholarly work on scoliosis is by orthopedic surgeon And prof. At Odessa Univ., Dr. Valentine Serdyuk. I bought the book he wrote. He gives a specific, simple treatment protocol to take the torque out of the pelvis and spine.

The FDA did crack down on 23andme, but there was a recent agreement that 23andme could give certain medical results. Call them, or write to them. I did 23andme 3 or 4 years ago and got the full medical enchilada. I have nothing unusual that they tested for, except an acquired gene (!!!!!) that puts me at substantial risk for myeloproliferative disorders. ( ie lymphoma, leukemia, and such) I got my BRCA results - negative, other risks. My husband was told he had a high risk for macular degeneration. True, he was already diagnosed. They acurately predicted my blood genotype!! ( I knew my parents blood types). So, I think they are right on, and helpful.

Sally, I am also confused, exhausted by all of the possibilities of what might be wrong. I too find great help from the opiate meds - helps with pain and gives me some energy. Figure that? Everyone else that had these meds post surgery gets sleepy !!! Also, Nuvigil on occasion helps with energy and motivation. Xanax or Benadryl for sleep. Magnesium for GI function boost. It was really trial and error for me to find helpful meds.

What a journey.
 

fibroite

Member
Rheumatologists, the specialists many people with fibromyalgia see, treat people with diseases of the joints and muscles and immune problems. These diseases run the gamut from many types of arthritic disorders to autoimmune diseases such as lupus and Sjogren's syndrome to gout and hard to classify disorders such as fibromyalgia (FM).

[fright]View attachment 879 [/fright]A recent survey of symptom patterns in rheumatological patients seen over a year at an Israeli hospital provided an opportunity to see where FM patients fit into this mix.

Visual Analogue Scales of Pain, Fatigue and Function in Patients with Various Rheumatic Disorders Receiving Standard Care. Ofer Levy MD, Mirit Amit-Vazina MD, Refael Segal MD and Moshe Tishler MD. Department of Medicine B, Rheumatology Unit, Assaf Harofeh Medical Center. IMAJ • VOL 17 • November 2015

The mixture included some heavy duty illnesses - some of which can kill and many of which are painful, as well as"little" fibromyalgia - a disease that still gets little respect from the NIH and many rheumatologists. Let's see how FM stacked up against some heavyweights.

The Study

First, the patients were broken up into 10 categories: polymyalgia rheumatic, psoriatic arthritis, gout, systemic lupus erythematosus, rheumatoid arthritis, the spondyloarothopies, the inflammatory rheumatic disorders, the non-inflammatory rheumatic disorders, osteoarthritis, and fibromyalgia.

Then age, gender, disease duration, location of pain, pain level (VAS), fatigue level (VAS), and functional level (VAS) were measured.

Results

Female Dominance Again

With regard to age the survey revealed two subsets of patients; a middle-aged subset encompassing most of the disorders, and an older subset consisting of people with gout, polymyalgia rheumatica, and osteoarthritis.

With the exception of gout, psoriatic arthritis and the spondlyloarthropathies, females dominated the rheumatic diseases. The highest percentage of females occurred in fibromyalgia (86%) and polymyalgia rheumatic (94%).



Conclusions

In the end survey suggested that compared to fibromyalgia, some pretty serious illnesses are relative walks in the park symptom wise. Take lupus. Lupus is a serious disease which can kill you. For me, lupus would be pretty high on my list of diseases I really would rather not have, yet the lupus patients at this hospital rarely experienced widespread pain and reported about half the pain, fatigue and problems with functioning that fibromyalgia patients did.

The findings were reminiscent of a study Health Rising reported on recently where people with chronic fatigue syndrome (ME/CFS) essentially trounced people with major chronic illnesses when it came to quality of life and functionality.

These are not races anyone wants to win but they are races the medical community should pay attention to.

A Different Type of Disease

The findings help us understand why rheumatologists have had such difficulty embracing fibromyalgia. FM doesn't look like most of the diseases they deal with. It doesn't produce the deformed knuckles found in rheumatoid arthritis, the swollen toes seen in gout, the eerie looking blood vessels that occur in vasculitis or the altered x-rays of osteoarthritis patients. It's basically invisiible to all but those who suffer from it.

[fright]View attachment 882 [/fright]FM, however, produces more intense symptoms that any other rheumatological disease. It's much harder on people than the other diseases rheumatologists treat.

The widespread nature of the pain in FM suggests that it's being produced differently than other rheumatological disorders. The evidence suggests that it alone is a central nervous system disorder.

It's possible that a widespread disturbance, say, in the ion channels that transmit pain signals or some other systemic feature in the body is whacking the brain with pain signals in fibromyalgia. Given the widespread nature of the pain in FM, though, and the many other symptoms found in the disease, the focus at this point has to be the central nervous system (CNS). The is CNS one of the few organs able to cause such widespread symptoms and distress.

Even lupus, known as the great mimic for all the different organs it can attack, doesn't begin to produce the kind of widespread distress seen in FM.

Wrong Home

These findings suggest fibromyalgia never really belonged in the rheumatological camp or in NIAMS (The National Institute of Allergy and Musculoskeletal Disorders) - which is essentially ignoring it - anyway. Where it and chronic fatigue syndrome (ME/CFS) belong and which diseases they are most closely allied is an important question.

ME/CFS and FM have traditionally been allied with diseases like IBS, GWS, TMJ, interstitial cystitis and mood disorders. We have to be wary of the fact, though, that symptoms can be generated in a plethora of ways. The so-called functional disorders mentioned above may not in the end be as closely aligned as we think.

[fleft]View attachment 883 [/fleft]The ability to do genetic analyses on plants has, for instance, in some cases upended hundreds of years of classification efforts based on plant morphology. It turned out that some plants that looked quite different ended up being close relatives. It's possible that a tweak in the nervous system one way or the other could manifest itself as multiple sclerosis, ME/CFS/FM, Parkinson's disease or some other disorder.

More recent studies suggesting that migraine may occur with greater frequency in ME/CFS and FM than any other diseases casts a new light on them. (Could migraine with its pain, stimuli problems, strange triggers and fatigue could be construed as a different kind of fast-moving and very intense FM flare?)

ME/CFS and FM's place in the medical universe will ultimately be determined by research that uncovers the molecular roots of the diseases.

Fibromyalgia's big problem right now in the research world is that it's not clear where it fits. Studies into better funded pain causing diseases such as osteoarthritis, rheumatoid arthritis, lupus or low back pain may not tell us much about fibromyalgia. With FM funding in the dumps FM patients will probably have to hope that basic research efforts uncover something of value to them.

There may be some light at the end of the tunnel, though. The National Institutes of Health (NIH) rather begrudgingly recently stated that it will give "burden of illness" more priority in its funding decisions. If that's so then FM with it's high prevalence (11 million - U.S.) and very high rates of pain and fatigue and reduced functioning should be at the top of the list.
Rheumatologists, the specialists many people with fibromyalgia see, treat people with diseases of the joints and muscles and immune problems. These diseases run the gamut from many types of arthritic disorders to autoimmune diseases such as lupus and Sjogren's syndrome to gout and hard to classify disorders such as fibromyalgia (FM).

[fright]View attachment 879 [/fright]A recent survey of symptom patterns in rheumatological patients seen over a year at an Israeli hospital provided an opportunity to see where FM patients fit into this mix.

Visual Analogue Scales of Pain, Fatigue and Function in Patients with Various Rheumatic Disorders Receiving Standard Care. Ofer Levy MD, Mirit Amit-Vazina MD, Refael Segal MD and Moshe Tishler MD. Department of Medicine B, Rheumatology Unit, Assaf Harofeh Medical Center. IMAJ • VOL 17 • November 2015

The mixture included some heavy duty illnesses - some of which can kill and many of which are painful, as well as"little" fibromyalgia - a disease that still gets little respect from the NIH and many rheumatologists. Let's see how FM stacked up against some heavyweights.

The Study

First, the patients were broken up into 10 categories: polymyalgia rheumatic, psoriatic arthritis, gout, systemic lupus erythematosus, rheumatoid arthritis, the spondyloarothopies, the inflammatory rheumatic disorders, the non-inflammatory rheumatic disorders, osteoarthritis, and fibromyalgia.

Then age, gender, disease duration, location of pain, pain level (VAS), fatigue level (VAS), and functional level (VAS) were measured.

Results

Female Dominance Again

With regard to age the survey revealed two subsets of patients; a middle-aged subset encompassing most of the disorders, and an older subset consisting of people with gout, polymyalgia rheumatica, and osteoarthritis.

With the exception of gout, psoriatic arthritis and the spondlyloarthropathies, females dominated the rheumatic diseases. The highest percentage of females occurred in fibromyalgia (86%) and polymyalgia rheumatic (94%).



Conclusions

In the end survey suggested that compared to fibromyalgia, some pretty serious illnesses are relative walks in the park symptom wise. Take lupus. Lupus is a serious disease which can kill you. For me, lupus would be pretty high on my list of diseases I really would rather not have, yet the lupus patients at this hospital rarely experienced widespread pain and reported about half the pain, fatigue and problems with functioning that fibromyalgia patients did.

The findings were reminiscent of a study Health Rising reported on recently where people with chronic fatigue syndrome (ME/CFS) essentially trounced people with major chronic illnesses when it came to quality of life and functionality.

These are not races anyone wants to win but they are races the medical community should pay attention to.

A Different Type of Disease

The findings help us understand why rheumatologists have had such difficulty embracing fibromyalgia. FM doesn't look like most of the diseases they deal with. It doesn't produce the deformed knuckles found in rheumatoid arthritis, the swollen toes seen in gout, the eerie looking blood vessels that occur in vasculitis or the altered x-rays of osteoarthritis patients. It's basically invisiible to all but those who suffer from it.

[fright]View attachment 882 [/fright]FM, however, produces more intense symptoms that any other rheumatological disease. It's much harder on people than the other diseases rheumatologists treat.

The widespread nature of the pain in FM suggests that it's being produced differently than other rheumatological disorders. The evidence suggests that it alone is a central nervous system disorder.

It's possible that a widespread disturbance, say, in the ion channels that transmit pain signals or some other systemic feature in the body is whacking the brain with pain signals in fibromyalgia. Given the widespread nature of the pain in FM, though, and the many other symptoms found in the disease, the focus at this point has to be the central nervous system (CNS). The is CNS one of the few organs able to cause such widespread symptoms and distress.

Even lupus, known as the great mimic for all the different organs it can attack, doesn't begin to produce the kind of widespread distress seen in FM.

Wrong Home

These findings suggest fibromyalgia never really belonged in the rheumatological camp or in NIAMS (The National Institute of Allergy and Musculoskeletal Disorders) - which is essentially ignoring it - anyway. Where it and chronic fatigue syndrome (ME/CFS) belong and which diseases they are most closely allied is an important question.

ME/CFS and FM have traditionally been allied with diseases like IBS, GWS, TMJ, interstitial cystitis and mood disorders. We have to be wary of the fact, though, that symptoms can be generated in a plethora of ways. The so-called functional disorders mentioned above may not in the end be as closely aligned as we think.

[fleft]View attachment 883 [/fleft]The ability to do genetic analyses on plants has, for instance, in some cases upended hundreds of years of classification efforts based on plant morphology. It turned out that some plants that looked quite different ended up being close relatives. It's possible that a tweak in the nervous system one way or the other could manifest itself as multiple sclerosis, ME/CFS/FM, Parkinson's disease or some other disorder.

More recent studies suggesting that migraine may occur with greater frequency in ME/CFS and FM than any other diseases casts a new light on them. (Could migraine with its pain, stimuli problems, strange triggers and fatigue could be construed as a different kind of fast-moving and very intense FM flare?)

ME/CFS and FM's place in the medical universe will ultimately be determined by research that uncovers the molecular roots of the diseases.

Fibromyalgia's big problem right now in the research world is that it's not clear where it fits. Studies into better funded pain causing diseases such as osteoarthritis, rheumatoid arthritis, lupus or low back pain may not tell us much about fibromyalgia. With FM funding in the dumps FM patients will probably have to hope that basic research efforts uncover something of value to them.

There may be some light at the end of the tunnel, though. The National Institutes of Health (NIH) rather begrudgingly recently stated that it will give "burden of illness" more priority in its funding decisions. If that's so then FM with it's high prevalence (11 million - U.S.) and very high rates of pain and fatigue and reduced functioning should be at the top of the list.
 

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