Differentiating ME/CFS and FM re mitochondrial dysfunction

MeSci

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I don't have pain in general. However, if I stub my toe or something, I feel the pain 10 time worse than normal. Is this what you would call FM?
I am extremely sensitive to things like that. If I kneel down and there is something like a little bit of cat litter on the floor, it is agony. It seems to be an excessive amount of pain for such a minor thing!
 
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I seem to be in a small minority of ME sufferers who get very little pain. I mainly just get muscle aches and usually-mild occasional abdominal pain. I do also get mild but nagging head-, neck- and upper-mid-back pain when my symptoms worsen, but rarely anything severe.

This suggests to me that either I have something else altogether (although everything else fits) or there are significant sub-groups, for which several researchers have found evidence.
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I think it's a spectrum illness that is influenced by genetics, age and other factors. I am glad you don't have the pain I and many other people experience with ME.
 

Little Bluestem

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I am extremely sensitive to things like that. If I kneel down and there is something like a little bit of cat litter on the floor, it is agony. It seems to be an excessive amount of pain for such a minor thing!
I am one of the people with very little pain. Earlier this spring I was planting some tulip bulbs for my mom. When I would get up, one of my legs would be very painful and I could barely walk on it and would limp for several steps. Not agony, but an excessive amount of pain for what I had done. I wondered if I was developing arthritis, which would be unusual at my age. I am wondering now if I am developing more ME pain.
 

Shell

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My first dx was FMS because of the pain. Usually I have it under pretty good control these days. Never been pain free since I got ill but I cope ok with "normal pain".
When I'm crashed the pain can be unbelievable. At the moment, 'cuz I'm not doing so well it's above "Normal" but it's not at the point where I just need to knock myself out - because it's unbearable.
Really really bad pain triggers cyclical vomiting in me so I try not to let it get that bad.

I've been wondering about have the mito tests. Not sure at the moment as I'm having so much blood taken for other stuff.
 

HowToEscape?

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I seem to be in a small minority of ME sufferers who get very little pain. I mainly just get muscle aches and usually-mild occasional abdominal pain. I do also get mild but nagging head-, neck- and upper-mid-back pain when my symptoms worsen, but rarely anything severe.

This suggests to me that either I have something else altogether (although everything else fits) or there are significant sub-groups, for which several researchers have found evidence.
Not just you. I've had severe M.E (exhausted to the point where I had to consciously breathe) but pain consists of headaches, stomach issues, and muscle pains arising from lack of exercise. On the rare occasions when I can do something that looks like exercise my muscle aches start to ease. I don't have the systemic pain others describe.
 

MeSci

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Maybe different people are sensitive to different types of pain. I broke my wrist a few years ago and, whilst it was excruciating for about half an hour (which may have been because it was an impact pain), I then managed for 3 days with paracetamol and had very little pain by the time I had been persuaded to get it checked out (I had thought it was just a sprain and had carried on doing my normal things but just avoiding using the wrist). The nurse said "I don't understand why you have so little pain" as she was putting a cast on it.
 
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FM was never associated with ME. ME had a problem with exercise, what we would call PEM, as its cardinal symptom with pain a close second. I was told by a doctor that when he was at the Royal Free during the epidemic the patients would hit the roof when they were touched. A deep burning pain, presumably from lactic acid build up is common and indicates a problem with mitochondrial function which research was beginning to work out.

Then came CFS. The research money went to AIDS, and, especially in the UK, the psyches took over. When I first heard of FM, about then, very gentle exercise was seen as giving the best relief, though many people still needed strong pain killers.

However, as the confusion started, people with CFS but a lot of pain started being told they had FM as well. I believe that this was an artefact of the fact that CFS was so loosely defined and ME with its emphasis on exercise problems, was forgotten.

After decades of this diagnostic confusion, I do not think it is possible to do a meaningful study differentiating FM and CFS because there are no pure samples of patients. If PEM is not taken into consideration, patients with widespread pain are just as likely to have ME not FM and since ME does not need fatigue - I have never experienced 6 months of constant fatigue, rather I experience a collapse after effort, but that is not what the definition of CFS actually says - the CFS group may contain very few people with ME. This is especially insidious since neurological signs are exclusionary to CFS and in some studies this has included a positive Romberg sign which is almost diagnostic of ME!

Until we have very strict research definitions (diagnostic definitions can be much looser) all the research is little better than astrology.

It makes me very angry.

I have not been posting to forums for a while and thought I was well enough to start again but it has not been as easy as I hoped. If I do not reply, it is simply my health and I wish you all well and still hope for a time when we are given the research, respect and consideration we deserve.

Good health to everyone

Mithriel

I agree. This is frustrating. I was first diagnosed with CFS because of the constant swollen lymph nodes. Next, I was told that I had fibromyalgia and not CFS. Recently, I was asked by another doctor why the clinic in Tacoma did not follow through with doing more testing for ME because I clearly had the symptoms (at the time I was actually thrilled that a doctor acknowledged CFS or ME). However, still frustrating no one can come to a consensus.

I have had fibromyalgia for a long time. It is more than being sensitive to pain. It is pretty much waking up with constant radiating pain from some point of your body. Rarely do you have a pain free day. So many doctors don't understand that.

It seems that they are doing what they did to ME/CFS to fibromyalgia--loosening up the definition and lumping people together that probably should not be in the same group. I think we are going to see scientific research on FMS becoming more and more difficult to prove because of it. Just like they did to ME/CFS.

This is only my opinion, but I think that for people who have both ME/CFS and FMS, ME/CFS is the disease (probably autoimmune, specifically an overreaction to herpes viruses) and FMS is the result of the inflammation and oxidative stress caused by the disease (the nerve pain and twitching of FMS may be caused by inflammation (cytokines) and lack of neuronal nitric oxide synthase). But, that is just one more guess.
 

Allyson

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I agree. This is frustrating. I was first diagnosed with CFS because of the constant swollen lymph nodes. Next, I was told that I had fibromyalgia and not CFS. Recently, I was asked by another doctor why the clinic in Tacoma did not follow through with doing more testing for ME because I clearly had the symptoms (at the time I was actually thrilled that a doctor acknowledged CFS or ME). However, still frustrating no one can come to a consensus.

I have had fibromyalgia for a long time. It is more than being sensitive to pain. It is pretty much waking up with constant radiating pain from some point of your body. Rarely do you have a pain free day. So many doctors don't understand that.

It seems that they are doing what they did to ME/CFS to fibromyalgia--loosening up the definition and lumping people together that probably should not be in the same group. I think we are going to see scientific research on FMS becoming more and more difficult to prove because of it. Just like they did to ME/CFS.

This is only my opinion, but I think that for people who have both ME/CFS and FMS, ME/CFS is the disease (probably autoimmune, specifically an overreaction to herpes viruses) and FMS is the result of the inflammation and oxidative stress caused by the disease (the nerve pain and twitching of FMS may be caused by inflammation (cytokines) and lack of neuronal nitric oxide synthase). But, that is just one more guess.
Mithriel

Iwas suprprised by this statement

ME does not need fatigue - I have never experienced 6 months of constant fatigue

firstly i dont think you need 6 months of constant for it to be "fatigue'

secondly what is Romberg's sign please
this is aninnteresting opinonn

This is only my opinion, but I think that for people who have both ME/CFS and FMS, ME/CFS is the disease (probably autoimmune, specifically an overreaction to herpes viruses)

but htat would be so hard to prove would it not or test as herpes virus si so prevalent?

best

Ally
 

Allyson

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Not just you. I've had severe M.E (exhausted to the point where I had to consciously breathe) but pain consists of headaches, stomach issues, and muscle pains arising from lack of exercise. On the rare occasions when I can do something that looks like exercise my muscle aches start to ease. I don't have the systemic pain others describe.

yes i have very little pain too but i get severe PEM
i had bad muscle aches constatnly for years but they go away when i take D- ribose regularly

i never get muscle pain from lack of exercise - did not knnow that was possible - how did you establish cause?
thanks


Ally
 

Allyson

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I am extremely sensitive to things like that. If I kneel down and there is something like a little bit of cat litter on the floor, it is agony. It seems to be an excessive amount of pain for such a minor thing!

mesci the only thig i have heard that is similar to that is skin sensitivity

i cannot bear to wear tight clothing or jewellery most the time

i know lots of people with ME/cfs have that

and you sound like you have a more sever verison of that

sympathies - ouch!

Ally
 

Shell

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I have failed every Rombergs any doc has given me.
Ally - a Romberg test is the doc gets you to stand up with legs together. He then asks you to stretch hands out in front and close your eyes. A healthy person should be able to stand still. I always tip either forward to sideways.


This is a slightly different Romberg. I've had it done like this too but usually they ask me to stretch arms out straight in front.
 

MeSci

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mesci the only thig i have heard that is similar to that is skin sensitivity

i cannot bear to wear tight clothing or jewellery most the time

i know lots of people with ME/cfs have that

and you sound like you have a more sever verison of that

sympathies - ouch!

Ally
Thanks for the sympathy, but mine is with those who are in constant pain. At least I can avoid mine by being careful!

I too can't stand jewellery on my skin - not even a watch, and tight clothing digs into my skin, leaving deep furrows that last for some time. I first noticed something like this a very long time ago (pre-ME), when carrying a shopping bag on my arm. After quite a short time it left quite a deep, red dent which was a bit sore.

Shame about the jewellery, isn't it? I still have some nice stuff and hope that my skin will let me wear it again one day. But when considered alongside other issues it is pretty minor.
 

MeSci

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Mithriel

Iwas suprprised by this statement

ME does not need fatigue - I have never experienced 6 months of constant fatigue

firstly i dont think you need 6 months of constant for it to be "fatigue'

secondly what is Romberg's sign please
this is aninnteresting opinonn

This is only my opinion, but I think that for people who have both ME/CFS and FMS, ME/CFS is the disease (probably autoimmune, specifically an overreaction to herpes viruses)

but htat would be so hard to prove would it not or test as herpes virus si so prevalent?

best

Ally
Yes, I thought that PEM rather than constant fatigue was characteristic of ME. That's what I have too. Yesterday my legs were light and strong, and I went shopping. Today they are weak and I have to rest.

I do find it puzzling though that some people supposedly have both ME and FMS, when ME is improved by rest and FMS is supposedly improved by exercise. I don't know how good the evidence is for the latter, e.g. was it a representative group of sufferers with the 'right' condition, and was it followed up long-term and with objective measures?

If they really are different in this respect, then it is perhaps unlikely that there would be this overlap of conditions, and maybe people are just being misdiagosed due to a lack of reliable diagnostic tools. Some symptoms may well be the same, but this is the case for many illnesses, which must be treated differently.
 

Allyson

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I have failed every Rombergs any doc has given me.
Ally - a Romberg test is the doc gets you to stand up with legs together. He then asks you to stretch hands out in front and close your eyes. A healthy person should be able to stand still. I always tip either forward to sideways.


This is a slightly different Romberg. I've had it done like this too but usually they ask me to stretch arms out straight in front.
thankyou for that Shell

i wil try it - can one try it alone? i will not fall over

tried it - no problems i can stand still but i did get a bit dizzy.

one more test tick lol

cheers
Ally
 

Allyson

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Thanks for the sympathy, but mine is with those who are in constant pain. At least I can avoid mine by being careful!

I too can't stand jewellery on my skin - not even a watch, and tight clothing digs into my skin, leaving deep furrows that last for some time. I first noticed something like this a very long time ago (pre-ME), when carrying a shopping bag on my arm. After quite a short time it left quite a deep, red dent which was a bit sore.

Shame about the jewellery, isn't it? I still have some nice stuff and hope that my skin will let me wear it again one day. But when considered alongside other issues it is pretty minor.

he he yes me too with the jewellery Mesci...

but as you say others have much worse issues and yes, if i stay in bed all the time and take d- ribose i have no pain or discomfort or fog or crashes and actually feel quite well.... until i get up again - then, like you crash bang...exponentially

OT - but just got this post from a friend on another me/cfs forum and it is good new as as she is very young and treatable - reposted with permission. (I dont think i have Lyme but will do the testing now)

cheers

ally


quote

Just wanted to put the info out there that I am another CFS patient (of 3 years) who has just learned that I have Lyme Disease through positive test results from an overseas lab (and clinical diagnosis - what I thought were CFS symptoms all fit with the Lyme picture). I mention this so that others who may be wondering about Lyme consider getting tested or even just read up and learn more.
 
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Mithriel
This is only my opinion, but I think that for people who have both ME/CFS and FMS, ME/CFS is the disease (probably autoimmune, specifically an overreaction to herpes viruses)

but htat would be so hard to prove would it not or test as herpes virus si so prevalent?

best

Ally
I am not sure. Somehow, I think, our immune systems act differently when they over react, maybe because of some defect. I don't think an antibody test would tell us much.
 

Shell

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On pain: I saw a rheumi last year who asked if I'd ever been referred to a Pain Clinic and I said no. As a sort of aside she admitted they were utterly crap anyway. I had been on codeine and paracetomol at the beginning which was barely touching the pain. Docs insisted it was quite safe and my (then) unborn son wouldn't be effected. He was.
Later a doc gave me Tramadol leaving me stoned, and still in loads of pain, in charge of two kids under the age of 4.
So I asked for amitrip and was told I couldn't have it as I was breastfeeding. As it happens I knew damn well bf didn't stop people have low dose Ami but would be an issue if it was prescribed at antidepressant therapeutic dose.
I begged and begged and finally got the GP I see now to prescribe it. Working with him we adjusted the dose to 50mg nocte and that has the balance between pain I can deal with and being out of my tree.
I then juggle migreleve when things hit a wall. If it wasn't happening to me I would be quite interested in trying to work out why a drug like Ami which is prescribed a lot for people with mirgraine, doesn't hold off migraine for me. Is this just me or is it an ME thing or something else?

On viruses. There are so many to be tested for and so little treatment that I have never requested virus tests. However, having learned about the ME cluster in Scotland that was a Coxsackie B outbreak I've looked at that, just out of interest and discovered it can cause fetal cataracts. My 10 year old is blind in one eye with a cataract that can't be removed. The Doc was surprised as apparently it's extremely rare for a child as young as R to have a cataract with no concurrant learning disability. He says the vast majority are in children with Downs.
So I do wonder.

The Herpes viruses could be there too, or even Hep B thanks to the bizarre experience I had with the vaccine.
i don't know. It's a bloomin' maze isn't it?
 

Allyson

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On pain: I saw a rheumi last year who asked if I'd ever been referred to a Pain Clinic and I said no. As a sort of aside she admitted they were utterly crap anyway. I had been on codeine and paracetomol at the beginning which was barely touching the pain. Docs insisted it was quite safe and my (then) unborn son wouldn't be effected. He was.
Later a doc gave me Tramadol leaving me stoned, and still in loads of pain, in charge of two kids under the age of 4.
So I asked for amitrip and was told I couldn't have it as I was breastfeeding. As it happens I knew damn well bf didn't stop people have low dose Ami but would be an issue if it was prescribed at antidepressant therapeutic dose.
I begged and begged and finally got the GP I see now to prescribe it. Working with him we adjusted the dose to 50mg nocte and that has the balance between pain I can deal with and being out of my tree.
I then juggle migreleve when things hit a wall. If it wasn't happening to me I would be quite interested in trying to work out why a drug like Ami which is prescribed a lot for people with mirgraine, doesn't hold off migraine for me. Is this just me or is it an ME thing or something else?

On viruses. There are so many to be tested for and so little treatment that I have never requested virus tests. However, having learned about the ME cluster in Scotland that was a Coxsackie B outbreak I've looked at that, just out of interest and discovered it can cause fetal cataracts. My 10 year old is blind in one eye with a cataract that can't be removed. The Doc was surprised as apparently it's extremely rare for a child as young as R to have a cataract with no concurrant learning disability. He says the vast majority are in children with Downs.
So I do wonder.

The Herpes viruses could be there too, or even Hep B thanks to the bizarre experience I had with the vaccine.
i don't know. It's a bloomin' maze isn't it?
yes

yes it is so complex; good point made above Mya Symons that we may react differently to herpes too.

So sorry to hear about your son Shell, and hope you got the pain sorted finally..


best wishes..

Ally