Chronic fatigue syndrome and co-morbid and consequent conditions...

[heapsreal]

61% of ME/CFS patients also have fibromyalgia?

What does this mean, in terms of symptoms and labs tests, to have both fibromyalgia and ME/CFS? Most of the symptoms of fibromyalgia are the same as those of ME/CFS.

The Canadian Consensus definition document for fibromyalgia says (on page 11):


So does this mean that if you have ME/CFS symptoms with no pain, then you just have ME/CFS? If you have pain as well, then you have ME/CFS + fibromyalgia? And if you have pain, but only mild fatigue, mild PEM, mild cognitive dysfunction, mild cardiac dysfunction, and mild immune dysfunction, then you have only fibromyalgia?

I have noticed of late that the diagnosis of fibromyalgia is thrown around alot more and many i didnt think fit what many of us would see as fibro. One example is a guy i know who has had neck pain for a long time and probably osteoarthritis, his doctor has diagosed him as having fibromyalgia. He doesnt have wide spread pain or bad sleep issues etc he just has ongoing neck pain. Its seems any ongoing pain syndrome is know being called fibro. I think its getting very blurry like chronic fatigue??

 

[alex3619]

I think its getting very blurry like chronic fatigue??

Idiopathic chronic muscle pain?

 

[Woolie]

It may also reflect on these patients knowing that their doctors / the people asking completely understand me/cfs so they felt comfortable saying how they really feel. So often we have to hide our true feelings about having this illness. Or at least I have.

@xchocoholic, I can totally relate to this. Although my doc seems pretty aware of MECFS, I am careful never to give him any reason to think I am mentally unstable. It might undermine his view of my illness and thus my treatment. This involves quite a bit of acting, to conceal my true feelings about being ill. I play the part of the calm, reasonable unflappable, positive and accepting patient. It is such a shame we have to do this, because many of us can use emotional support as much as physical treatment (okay not as much, but at least till there is physical treatment!).

Early in my illness I told a doctor, after two years of being largely bed-ridden, that I wasn't coping and would like some psychological/counselling support. Only psychiatry was covered by my health care at that time, so I went with that, rather than pay our of pocket. From one interview, where I told the psychiatrist how miserable I felt about see my twenties speed by while I languished in bed (I was 26 years old), I ended up with a diagnosis of depression. Its that easy.

 

[Sing]

Idiopathic chronic muscle pain?

Myofascial Pain Syndrome may be the better term for pain in the muscles and fascia. Osteoarthritis covers the joints. Does it cover the tendons and connective tissue too?

It seems to me that the term of FM is used too loosely when it is combined with ME. I feel they are essentially different illnesses though with some common overlapping symptoms.

IBS can also be too loosely applied to anyone with some gas and indigestion.

 

[alex3619]

Myofascial Pain Syndrome may be the better term for pain in the muscles and fascia

It was a satirical comment playing on a comparison with Idiopathic Chronic Fatigue, where ICF is mislabeled as CFS a lot (just as ME is mislabeled as CFS even if there is no chronic fatigue). As we know this is particularly prevalent in the UK.

There is a bias in the medical community to go for a poor simple diagnosis if the only alternatives are to admit ignorance or go for something complicated. Its not just doctors though, most people if not all people are subject to this kind of bias. Simple is good, complex bad. Doh. I just oversimplified.

 

[MeSci]

Same on the anhedonia and blunted affect. Did you find anything to lessen those?

I have found 5-HTP helpful for low mood following a sad event. The low mood may also have had something to do with (a phase of) my ME.

 

[MeSci]

Yes, if would be very strange if the brain dysfunctions and abnormalities that we know exist in ME/CFS did not frequently lead to other mental symptoms or conditions such as anxiety, depression, etc.

When I first caught the virus that precipitated my ME/CFS, the first mental symptoms it produced were not ME/CFS symptoms, but rather were: generalized anxiety disorder, anhedonia and blunted affect. These mental symptoms appeared very soon after contracting my virus (and not only in me, but also in others who caught the same virus). My ME/CFS symptoms only arrived later.

So it was clear to me that my virus is capable of causing anxiety, anhedonia and blunted affect, as well as ME/CFS.

My own anxiety was lifelong (for as long as I can remember), and I also had a couple of bouts of depression due to life situations before ME. I wish I'd known about diet and mood long ago - I might have avoided the plethora of drugs (legal and otherwise), self-harm, addiction and other adverse consequences that have dogged my life.

 

[xchocoholic]

@xchocoholic, I can totally relate to this. Although my doc seems pretty aware of MECFS, I am careful never to give him any reason to think I am mentally unstable. It might undermine his view of my illness and thus my treatment. This involves quite a bit of acting, to conceal my true feelings about being ill. I play the part of the calm, reasonable unflappable, positive and accepting patient. It is such a shame we have to do this, because many of us can use emotional support as much as physical treatment (okay not as much, but at least till there is physical treatment!).

Early in my illness I told a doctor, after two years of being largely bed-ridden, that I wasn't coping and would like some psychological/counselling support. Only psychiatry was covered by my health care at that time, so I went with that, rather than pay our of pocket. From one interview, where I told the psychiatrist how miserable I felt about see my twenties speed by while I languished in bed (I was 26 years old), I ended up with a diagnosis of depression. Its that easy.

Most of the time my hypoglycemia, oi, pem and cognitive problems were chalked up to anxiety or depression. Even my ataxia, falling into walls, etc was blamed on me by several people in the health field no less. Doh ! I was told to watch where I was walking.

I was embarrassed by my behavior until I learned the real medical reasons for why I was doing all this. I was shocked to learn how little medical professionals know about hypoglycemia, ataxia, low blood pressure, etc etc. I understand why the average person doesn't get it. Internet access to medical terminology is changing this tho. ☺

Now I'm quick to point out what's happening physically. Sadly, some people get it and some look at me like I'm making up medical terminology. Lol. In their defense most HEALTHY people have no idea what I'm saying. ☺

AND I'm finding that medical terminology changes or is inacurate. We see that all the time here just for ME alone. But back in 2006, I found myoclonus under the seizure category but now it isn't. Some actually link it to anxiety. Roflmao. Petite mals didn't always mean lack of consciousness. I'm not interested in keeping up with these changes because chances are they'll change again.

Funny story. In the last year, I've learned how much better I feel if I sit with my feet up. I know no one knows what dysautonomia is so I just say I have a circulation problem. On multiple occasions people looked at my ankles for swelling and since they weren't swollen they were convinced that I'm lying.

Logically why would a 59 year old woman want to put her feet up if it weren't medically necessary. Lol. These people crack me up.

I get so tickled about their close minded know-it-all view that at first I'm at a loss for words. Then I try to explain dysautonomia. So far the know-it-alls don't want to hear it.

tc ... x

 

[MeSci]

My first episode of severe, near-life-threatening hyponatraemia (low blood sodium) is recorded in my medical records as a panic attack. I won't report all the details here (I have posted them in several threads), but my second attack 3 years later was blamed on me overusing a drug and drinking too much fluid, despite my repeated denials of both.

I have now learned that the hyponatraemia was almost-certainly due to an ACE inhibitor in combination with overexertion whilst having ME. Not a single doctor made this connection. So I suffered on and off with this 'co-morbidity' for 7 years, with consequent damage to bones and teeth, until a comment on here made me question my prescription, and get the hell off it!

 

[Gijs]

Anxiety, panic attack etc.. are not due to psychological factors in patiënts with ME/CFS and POTS. There is a physical problem in the brain. I think the insula is the main problem in patiënts with these symptoms. ME, cfs and POTS are due to encephalitis wich attacks the white and grey matter in the brain. This is the cause of this disease.

 

[Hip]

ME, cfs and POTS are due to encephalitis wich attacks the white and grey matter in the brain. This is the cause of this disease.

You just made that up. Nobody knows the cause of ME/CFS.

 

[Gijs]

It is not fiction. After studying the current medical science, this "theory" is very plausible. Certain areas of the brains such as the insula ensuring homeostasis in the body. This is done through the autonomic nervous system. Also, the immune system has an interaction with this. All symptoms are explainable. The only question is what causes inflamation (microglia) in the brain ? Autoimmunity, infection, injury after high fever or neurotoxins from the intestine. I am very convinced of this.

 

[Hip]

@Gijs
Dr Byron Hyde has found small white matter lesions in his patients, but this is by no means always present.

Brain inflammation appears to be a more universal feature of ME/CFS, at least in this recent small study.

 

[alex3619]

So I suffered on and off with this 'co-morbidity' for 7 years, with consequent damage to bones and teeth, until a comment on here made me question my prescription, and get the hell off it!

I am currently trialing a calcium channel blocker instead of an ACE inhibitor to see how my symptoms change. This has been a rough week due to real life issues, and even after a day of rest I am still exhausted, but I am hoping this will reverse a bunch of my symptoms.

 

[alex3619]

I regard the chronic limbic encephalitis hypothesis (microglia), which @Gijs was referring to, as viable. However so is the enteroviral theory, Herpes viruses, Lyme, mycotoxins, NO/ONOO, and the new kid on the block, cortisol resistance.

Cortisol resistance needs more work, but if it is occurring then nearly everything can be explained by it. That's the thing with these models. They all have some viability. Its even possible that ME-like syndromes are caused by several different mechanisms, and more than one of these hypothesis, and maybe hypotheses yet to be formulated, explain what is going on.

I have already suggested that if cortisol resistance findings can be replicated then ME might be better called Type 2 Addisons Disease, where the problem is not lack of cortisol but the ineffectiveness of cortisol. Lack of cortisol response will crash our energy, increase inflammation in susceptible tissues, and disrupt brain function directly.

Of course the other hypotheses might be driving mechanisms for cortisol resistance. In fact we know so little about this issue that everyone is guessing about the cause of it. We know the gross mechanism, which is a bad ratio of alpha to beta glucocorticoid receptors, and in us this means a predominance of beta glucocorticoid receptors. I am waiting for this paper to be published so we can see if this really is a viable hypothesis.

We still don't know enough to isolate our attention to a single hypothesis.

 

[MeSci]

I am currently trialing a calcium channel blocker instead of an ACE inhibitor to see how my symptoms change. This has been a rough week due to real life issues, and even after a day of rest I am still exhausted, but I am hoping this will reverse a bunch of my symptoms.

Good luck. I seem to be doing better now with the beta blocker nebivolol, although systolic pressure is still high too often.

Rest well.

 

[Snowdrop]

With regard to glucocorticoid dysregulation I found this article:

http://emedicine.medscape.com/article/925564-overview#a0104

Seems like a promising line of inquiry.
I confess I'm not able to read through the whole thing and take it all in. I did skim it.

 

[alex3619]

With regard to glucocorticoid dysregulation I found this article:

http://emedicine.medscape.com/article/925564-overview#a0104

Seems like a promising line of inquiry.
I confess I'm not able to read through the whole thing and take it all in. I did skim it.

The thing about glucocorticoid resistance issues is that the only ones studied so far have been for major disorders in this area in which most tissues are affected. For all we know we have selective resistance, restricted to only some parts of the body. The alpha to beta ratio is, as I see it, modified by the body to alter our cortisol response on a cell by cell and tissue by tissue basis. So some tissues respond more, and some less. Its too early to tell if this is important in ME, but its intriguing to me.

PS The focus on glucocorticoid resistance syndromes has been genetic. In us, so far, it appears to be epigenetic or about functional expression of the gene. Its not a mutation, at least one has not been identified so far. Something is altering gene expression. Now that might be genetic and as yet unidentified, but I doubt it.

 

[Woolie]

It is not fiction. After studying the current medical science, this "theory" is very plausible. Certain areas of the brains such as the insula ensuring homeostasis in the body. This is done through the autonomic nervous system. Also, the immune system has an interaction with this. All symptoms are explainable. The only question is what causes inflamation (microglia) in the brain ? Autoimmunity, infection, injury after high fever or neurotoxins from the intestine. I am very convinced of this.

Just to add a bit of background here (this is my research specialty): The insula is a region of the cortex that has been shown to be activated in tasks involved in the processing of emotion, probably at a very high level. For example, it activates during the recall of past emotional experiences. It seems to be particularly important in situations where our body's emotional reaction might be different from what we expected it to be - like a signaller that behaviour change might be needed (deciding we're pissed off enough to quit, etc.). It appears to be important in empathy (integrating emotions with our knowledge of others' perspectives. Its role in "homeostatis" is not what you'd think. It detects situations where emotional reactions are out of line with expectations. It is very smart.

Hope that isn't too dense.

 

[jimells]

Not to mention the secondary, contingent, but often very high psychosocial burden due to misinterpretation and mistreatment by the medical profession and broader society.

Since being approved for disability benefits I no longer have suicidal ideation every day. I once told a therapist that the best antidepressant for me would be cash. That was the wrong answer, of course!