Discussion in 'Fibromyalgia Main Forum' started by charlie21, Oct 21, 2006.
Not sure if F.M. is the same as M.E. Can anyone enlighten me please. Many thanks Charlie
ME societies are very adament that ME and FM aren't the same, though FM symptoms can be part of the whole ME syndrome.
I think they are the same, but if you have mainly FM symptoms, you'd be considered to have a milder case of ME.
I have wondered the same thing. I find it all very confusing. Some doctors insist they are the same thing. Most support groups are for both FM and ME/CFS.
Other doctors insist that they are two entirely different conditions.
It seems to me that they are the same only some people have more fatigue while others have more pain.....
Maybe some other people on this site have opinions?????
Most of the medical profession considers them to be different illnesses, with pain the main symptom of fibro & fatigue the main symptom of M.E.
I think they're the same illness.
No. I've had FM for 20 yrs, and I'm sure it was caused by a stressful childhood, a stressful failed marriage, and a high stress job with a major world-wide computer firm (where I worked harder and longer hours than I should have...for the recognition I had always wanted, but could get here at my job). As a result, I had a complete physical and emotional breakdown.
CFS began after a medical mistake after a hysterectomy and I contracted a staph infection which worsened over a period of several days and ruptured internally. It resulted in emergency surgery, gangrene, peritonitis, septicemia, and finally septic shock and I almost died. I was in the hospital for 30 days and never recovered from the fatigue.
I have frequent flares where I cannot pick my head up from my pillow. These flares in bed can last up to a month. Yes, I have pain as well, but the pain is always with me. It is just exascerbated at times.
From this, my assumption is that they are two separate illnesses, they just have overlapping symptoms. I hope someone can find out the true answer soon.
Miriam-Webster Dictionary Definitions:
Myalgic: muscle pain
Encephalitis: inflammation of the brain
Based on this description, I think this is the stupidest name for this DD of all the names I've ever heard.
("Yuppie Flu" being the possible exception.)
No one has ever shown that inflammation of the brain exists in any sort of CFS (either the fibromyalgic kind or the non-fibromyalgic kind). Perhaps it was a very early hypothesis that just happened to stick in England. So keeping that as a designator of the disease just seems plain wrong.
("Agitated exhaustion"---a disruption of sleep, especially deep sleep---does not to my knowledge have anything to do with brain inflammation, or at least anything that has ever been shown to be the case. If anything, it seems like a mild case of temporal epilepsy, since it often helped by Klonopin and Xanax (tranquilizers with anti-convulsant qualities) and to a lesser extent by Lamictal (a pure anti-convulsant).)
"Myalgia" is certainly a major symptom for some people classified as having CFS/ME/DD/whatever it's called. I object strongly to that being in the name, however, since muscle pain is is a very minor problem for me.
"CFS", even though it trivializes the disease in many people's minds, seems far better. At least chronic severe fatigue is a major problem that is shared by all of us, which makes it descriptive if not ideal.
Personally, the best solution to me seems to be to use CFS as an overall name for the DD (since it's already in common usage in many countries). CFS then could be subdivided into two categories: fibromyalgia (the main symptom for some people) and non-fibromyalgia.
(Some people could be designated as having both, of course.)
The non-fibromyalgic kind obviously needs its own name. I myself have started using Neuroendocrineimmune Disorder on my own, since it seems to comprehensively and accurately describe my core problems (and sounds serious besides). People seem to take it seriously, whether or not they probe more deeply into what exactly it is. (And nobody thinks I'm "fooling" them when I give them the full explanation, either.)
Anyway, as far as I can see, the name "M.E." should be thrown out entirely. I don't see how anyone can make an argument otherwise.
However, to the extent that it is used, it certainly is far more applicable to people who have pain (fibromyalgia) as a core symptom. It has no relevance to the rest of us at all.
Whether the medical community in some countries (or any other community) disagrees seems wholly beside the point.
Names of diseases logically should either describe some universal symptom of the disease ("Yellow Fever"), cite the presumed cause ("Bird Flu" or "Acquired Immune Deficiency Syndrome), cite the person who "discovered it" ("Alzheimer's Disease") or perhaps a well-known person who had it ("Lou Gerhig's Disease").
Calling a disease by a non-descriptive name seems to me purely wrong, no matter how established it is or who believes the name should stay. And with this DD---which has another name attached to it already---it seems especially stupid and wrong.[This Message was Edited on 10/21/2006]
I'm not sure, but maybe they were looking at patients like me when they used the encephalitis in M.E. As that is exactly how my headaches and migraines feel. The name M.E has been around so long that they didn't have the technology to check these things back then but just had to go on peoples symptoms.
And if they were to ask me, I would have to say that my 2 worst symptoms are, headaches, migraines - which does feel as if the brain needs 'pressure' taken off. and 'bone pain' - which i keep getting told is in the muscles and tendons.... but it feels like the 'bones' to me!!
Over the years this disease has certainly outgrowen the name M.E and we want to change it too, but we have the same problem as you guy's, change to what.?? We havn't officially taken the 'cfs' term as we don't feel that is an accurate description either.
I think what ever symptoms we have, we all agree that a name change is needed, in both cases. But until they can come up with a unified agreement to what it actually is, only then can we get an accurate name for this awfull disease.
Well, maybe M.E. should be a third subcategory of the disease, if there are people with your set of problems. I almost never have headaches (unless I've inadvertently consumed something to which I have an allergy) and my bone/muscle pain is trivial.
Probably there are other subcategories as well.
Severe headaches and bone pain sound really horrible, btw. I hope you find a way to successfully address them.
I recognize the symptoms you describe. the headaches are more common in the summer, and the bone pain feel is less pronounced in the summer, more during the rest of the year. It is horrible, it feels like a bad case of the flu that never goes away!
I think every patient present in their own individual way. No one have the same set of symptoms as another.
I don't think that one can compete with another in severity. One FM case can be worse than one CFS case, vice versa. I still believe they are two different ends of the same stick. I think so because my mom, brother and sister have FM, my brother with a touch of CFS.
I seem to be pure CFS. But- we're all ill with the same seemingly hereditary defect that is triggered by stress (physical, mental, or both) on the immune system which never seem to recover after that.
One thing though- we all got the pooped brain,,,LOL!
They keep telling me that my MRIs show DDD and OA, yet my Rheumy says if he had an MRI, his would look the same way. (We're the same age...60). I asked if his hurt all the time, and his answer was, "No, but I don't have Fibromyalgia."
I'm so confused I could cry. I KNOW my bones are hurting. But FM is supposedly in the muscles. I know my body. The FM clinic took my walker away from me, all the while I was protesting that my bones would not support me. Sure enough, I stepped off a curb, shattered my leg, broke the tibia into 20 pieces, crushed the ankle, and also crushed the fibia. After the surgery, I was in a wheelchair and could not put my foot down for 3 months.
I don't know what is wrong with me. I'm not sure if I have been properly diagnosed or what???? Does anyone else have these doubts?
I feel like I'm going going to be an invalid the rest of my life, however long..or short that may be. Only God knows that.
I've been suffering for over 20 years and no improvement...it only gets worse. What can I do?
Just because some symptoms are shared doesn't mean the diseases are the same, though. Multiple Schlerosis is also characterized by severe fatigue, but those patients aren't lumped in with CFS.
That's because CFS was originally a disease of exclusion---e.g. patients didn't have any other known disease.
Since people on this board have markedly different symptoms (some with pain, some with headaches, some with neither), a reasonable hypothesis is that they are wholly different diseases caused by different underlying factors.
Even if they're all caused by immune problems doesn't mean they're caused by the _same_ immune problems, for instance.
It could be that this is one disease with one underlying cause that manifests itself in radically different ways. This seems unlike almost unlike any other disease that I've ever heard of, but it's possible.
What I do know is that I have neither myalgia nor encephalitis. Some people may, and I have lots of sympathy for them.
But being labeled with a name that is wholly undescriptive of any of my symptoms or (laboratory tested) underlying conditions seems absolutely unacceptable.
Sorry to put you wrong back there.. a couple of yrs ago there was a vote for a name change in NZ.. cfs was one that was put forward and voted down. What was voted in was to get rid of encephalitis bit..
The E in M.E now stands for Encephalopathy!! (I had forgotton all about this) So i looked it up on the net.... this is what it stands for..
What is Encephalopathy?
Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure.
Encephalopathy may be caused by infectious agent (bacteria, virus, or prion), metabolic or mitochondrial dysfunction, brain tumor or increased pressure in the skull, prolonged exposure to toxic elements (including solvents, drugs, radiation, paints, industrial chemicals, and certain metals), chronic progressive trauma, poor nutrition, or lack of oxygen or blood flow to the brain.
The hallmark of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak.
Blood tests, spinal fluid examination, imaging studies, electroencephalograms, and similar diagnostic studies may be used to differentiate the various causes of encephalopathy.
Majority voted for encephalopathy as it "more" describes what the illness is, and we are also 'under' the nurological umbrella here as far as funding etc goes.
But my head still feels like encephalitis!! wish that changed with the name change!!
lenasvn: i am the same as you - summers are just awfull for my head but in winter when my head calms down to a dull roar my body really acts up in the cold... we need to go to a country that is 'inbetween' all the time!!
and i agree lisa this could be all stains of one disease with diff reactions on peoples systems...
and ladykew,, i am sure mines in the bones too!
[This Message was Edited on 10/21/2006]
My I have started something here havan't I. I think this is going to be one of those things that will take a long time to get to the bottom of. I was initially diagnosed with fibro 7 years ago. Got worst last year after upset tummy and went to post viral fatigue syndrome, which then went back to fibro because it did not go away for a year so my doc said it wasn't viral, so fibro it is again now. My doctor says M.E. is a terrible name, and does not want to call it that, because I don't have inflammation of the brain. I am going to tell you what my symptoms were, because I am newly on Mirapex, and near enough at the moment feeling normal.
Often woke up with flares, ached all over, especially rib cage, and very stiff. The stiffness stayed, but to a lesser degree during the day, but if I sat down for more than 15 minutes I was really stiff and hobbled like an old lady for a while. Post exertional milaise, heavy legs, and muscle spasms in upper and lower body. Average 3 hours of sleep a night. IBS, dizziness, sensitive to loud noises, aches that constantly move around Drowsy during the day.
Now with these symptoms, what would you put my condition under please.
Getting back to the Mirapex, I have been on it for 3 weeks, they use it in Parkinson Disease, and I am having fantastic results from it. If you want to know more, please go see my other posts or haleycoles. Thank you all so much for your input on this subject. Charlie
That's a terrible story about how the doctors told you not to use the walker and then you fell and broke your leg. I'm so sorry.
One thing we all should learn is to trust ourselves infinitely more than we do our doctors, and never to let them override what we think is best for us.
Someday maybe the medical community will understand this disease (or these diseases) and we can start to trust doctors.
Until then, we're on our own.
It's horrible to think that there's no one out there who we can really trust, but it's better than trusting people and being burned in the process.
Sometimes doctors do have good ideas. But no matter what, I think we have to learn that by and large, they're far more in the dark than we are.
At least we know our bodies. With very few exceptions, they're just walking blindfolded.
Encephalopathy makes alot of sense. I really like that!
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