Weak, trembly feeling, with twitches and shakes

[November Girl]

No idea if this is an autonomic issue or not. My first several years with CFS I always felt weak, insubstantial, and trembly on the inside. It feels the way Star Trek transporters shows a body in the first seconds - like tiny bits and pieces missing all over. I think the high levels of elecytrolytes combined with a beta-blocker control this fairly well.

Right now I'm feeling an extreme version of this. It does get worse with cold fronts, but usually not on the day after. The front passed through yesterday, but if anything I'm worse today. I also have the jumps and twitches that tend to follow overexertion for me. Come to think of it, it's been years since they've been this bad when I'm sitting in a chair. It's arms and legs both. When I was finally switched to a seizure med that worked, these mostly cleared up, so I assume they're electrical in nature.

Any thoughts or explanations? Among other things, I'd like some idea of the physical cause of this symptom. It's possible that I did too much while feeling so bad the last two days. I didn't do much but didn't spend the day in bed either. I was a better rester before FaceBook came along.

EDITED to add: The jerks and twitches I've been talking about are an aggravated Restless Leg Syndrome. Today was the first time I've had them in my arms, but the jerks have gone as high as my shoulders when lying down.

 

[Kati]

@November Girl it is probably best you discuss these concerns with your physician who can examine you and review your medical and med history.

Best wishes,
Kati

 

[November Girl]

Thanks Kati. I do have an appointment in a few days. I'm curious is this is something common to CFS patients.

 

[xchocoholic]

I get this if I've over done it or had too much caffeine, chocolate or gluten.

At one point drs were confusing restless legs and myoclonus saying they were the same. Twitching sounds more like myoclonus to me. The 1 time I saw restless legs the person felt the conscious need to keep moving their legs. Myoclonus isn't a conscious movement.

I have nocturnal myoclonus, jerking, and Klonopin, typically .125 mg or less, takes care of this.

Have you tried taking a little more of your seizure med ? My dr recommended it for me.

It's possible that homemade bone broths / stock help me a little with this too but it's more difficult to see the response. Broth always calms me down tho. If it's too severe tho, I know klonopin works for me.

Tc .. x

 

[Martial]

No idea if this is an autonomic issue or not. My first several years with CFS I always felt weak, insubstantial, and trembly on the inside. It feels the way Star Trek transporters shows a body in the first seconds - like tiny bits and pieces missing all over. I think the high levels of elecytrolytes combined with a beta-blocker control this fairly well.

Right now I'm feeling an extreme version of this. It does get worse with cold fronts, but usually not on the day after. The front passed through yesterday, but if anything I'm worse today. I also have the jumps and twitches that tend to follow overexertion for me. Come to think of it, it's been years since they've been this bad when I'm sitting in a chair. It's arms and legs both. When I was finally switched to a seizure med that worked, these mostly cleared up, so I assume they're electrical in nature.

Any thoughts or explanations? Among other things, I'd like some idea of the physical cause of this symptom. It's possible that I did too much while feeling so bad the last two days. I didn't do much but didn't spend the day in bed either. I was a better rester before FaceBook came along.

EDITED to add: The jerks and twitches I've been talking about are an aggravated Restless Leg Syndrome. Today was the first time I've had them in my arms, but the jerks have gone as high as my shoulders when lying down.

I had it on and off again, mine was some kind of weird issue due to chronic CNS infection of lyme and other bacterial pathogens, I believe it started in my brain though which interrupted other things through out the nervous sytem. It is a very on and off again thing to deal with in my case. Low blood sugar or reactive hypoglycemia caused another thing that also felt very similar. Do talk to your physician though because there can be a lot of causes.

 

[dan062]

I have exactly this and currently have no diagnosis (already seen by a neurologist). Like @Martial mine flares and remits.

I've had two flare-ups with these symptoms began (for me this is actually what started my journey with this illness). Both seem to have been triggered by a combination of cold exposure and alcohol (neither on its own seems to trigger it).

Chills, jerks, twitches, a strong feeling of shaking inside (the first time I actually did start shaking for a few minutes), flu-like feeling, etc. And then it gradually dies down over the course of a couple of weeks.

For me the symptoms start the day after the above -- ie there seems to be a delayed onset.

My feeling is that it is dysautonomia / reactive hypoglycemia. I say this because I had my first bloods drawn while I was in the midst of this and nothing to suggest an infection showed up (ESR, CRP, WCC normal, etc).

My other question is if there's an endocrine cause.

I'd also love to know what this is.

 

[Forbin]

It sounds like one of the more mysterious symptoms I had during the first, and worst, several years of the illness.

I referred to it as "internal shakiness," which seemed distinct from external things like hand tremor (which I also had). Doctors suspected it was a low blood sugar thing, but my blood tests were normal.

Rather than "shakiness," though, it seemed more like a high frequency, low amplitude vibration throughout the body, almost a kind of subtle "buzzing" feeling. I could see it being described in terms of the Star Trek transporter effect you mentioned.

Frankly, I think it is pretty similar, if not the same, as one of the sensations one gets when coming down with the flu. Not the flu itself, but one of the sensations one gets during the "prodrome." That association is probably not generally made because the flu prodrome only lasts a matter of hours, whereas this can go on for years.

My hunch is that it is caused by cytokines effecting the brain and nervous system, but I don't know.

For me, it did gradually improve over the years, so I hope it improves for you, too.

 

[dan062]

Forgot that (for me) it can't be blood sugar as the first time it happened I went to the hospital it was so bad, and remember that my blood sugar was fine.

Interesting theory. Another one that I liked was the idea that in CFS/ME the neurological 'switch' for a sickness response gets stuck on. Thus, as you say, we seem to have a never ending prodrome.

I feel like mine is getting slowly better, too. Certainly, nothing has ever been as bad as the first time it struck, which was exactly a year ago, and when it does it's no longer terrifying as I'm pretty familiar with what I need to do (get warm and sleep!).

@Forbin, did you try and treatment / therapies that made a difference?

 

[Forbin]

@Forbin, did you try and treatment / therapies that made a difference?

I had just begun to take nystatin (for potential candida overgrowth) when some of my symptoms (mainly, lack of stamina and constant dizziness) began to improve (very, very slowly) at about 3.5 years into the illness. I used to be more confident that nystatin was responsible for this effect, but, in recent years I've become more agnostic about it.

Some people, apparently, just happen to experience spontaneous improvement in the first five years, so it's difficult to ascribe cause and effect when one sees improvement during this period while on some kind of treatment.

It's intriguing to me, however, that Dr. Lipkin reports a shift in the immune profile of ME patients at around three year mark. Exactly what that means is still unclear, however.

One other curious thing that MIGHT have been a factor in my case was that I was diagnosed with chronic ulcerative colitis at about the 3 year mark. I took the antibiotic azulfidine for only about a month and, on re-examination, the "chronic ulcerative colitis" had simply vanished (never to return). Apparently, the condition looked enough like chronic ulcerative colitis to fool a highly-respected gastroenterologist. Anyway, I wonder if the beginning of my slow improvement six months later might have been a delayed reaction to the resolution that "colitis" (I'd been having intestinal issues ever since the onset of ME three years earlier). I'm kind of reminded of the delayed response to rituximab and how it appears to take months after treatment for a possible quietening of the immune system to kick in.

Anyway, as I say, I can't be sure that any of these things were factors, but it is interesting to me that both candida overgrowth and some kind of oddball colitis could potentially come under the umbrella of the microbiome.

 

[Alexandru Matei]

I had just begun to take nystatin (for potential candida overgrowth) when some of my symptoms (mainly, lack of stamina and constant dizziness) began to improve (very, very slowly) at about 3.5 years into the illness. I used to be more confident that nystatin was responsible for this effect, but, in recent years I've become more agnostic about it.

Some people, apparently, just happen to experience spontaneous improvement in the first five years, so it's difficult to ascribe cause and effect when one sees improvement during this period while on some kind of treatment.

It's intriguing to me, however, that Dr. Lipkin reports a shift in the immune profile of ME patients at around three year mark. Exactly what that means is still unclear, however.

One other curious thing that MIGHT have been a factor in my case was that I was diagnosed with chronic ulcerative colitis at about the 3 year mark. I took the antibiotic azulfidine for only about a month and, on re-examination, the "chronic ulcerative colitis" had simply vanished (never to return). Apparently, the condition looked enough like chronic ulcerative colitis to fool a highly-respected gastroenterologist. Anyway, I wonder if the beginning of my slow improvement six months later might have been a delayed reaction to the resolution that "colitis" (I'd been having intestinal issues ever since the onset of ME three years earlier). I'm kind of reminded of the delayed response to rituximab and how it appears to take months after treatment for a possible quietening of the immune system to kick in.

Anyway, as I say, I can't be sure that any of these things were factors, but it is interesting to me that both candida overgrowth and some kind of oddball colitis could potentially come under the umbrella of the microbiome.

Hi - Your case sounds like a complicated case of candidias all the way, I'm not a doctor but it does seem that you have candida overgrowth.

 

[dan062]

It is interesting to me that both candida overgrowth and some kind of oddball colitis could potentially come under the umbrella of the microbiome.

Yup. A personal theory is that IBD is probably the explanation behind a significant number of 'CSF' cases.

I've read stories of IBD being found when all bloods (including ESR, CRP) looked normal and it was only when a colonoscopy was performed for screening purposes that the colitis was discovered -- how many of us have had the luxury of a colonoscopy without major GI symptoms, particularly below the age of 50?

Have a read of Charles Darwin's mystery illness (I think they figured it was Crohn's using DNA analysis). So much of it sounds familiar to me.

In your case, I think it's also plausible that as disturbances to the microbiome are strongly implicated in the pathogenesis and maintenance of IBD, that your antibiotic treatment simply reset things and resolved the inflammatory response, which was manifesting as CFS, dysautonomia, etc.

Kind of like how some docs find that antibiotics help RA, MS, etc. The hypothesis that seemed to be going around was that the abx were directly eliminating stealth pathogens in joint, nervous tissue, etc, but I think that correcting some kind of a dysbiosis is just as plausible and explanation.

 

[Alexandru Matei]

IBD is linked to CFS/ME because both are just a name for a set of symptoms that are caused by infection (just my personal opinion) a bad gut flora, low immune system lets the bacteria strive and multiply. Most people with CFS ME have a chronic fungal or viral infection (can be bacterial as well).

 

[Forbin]

If gut flora is to blame, my guess is that there is some sort of disruption of the microbiome, that can be triggered by any number of acute infections or other bodily stresses. I'd also guess that it is not the infection, per se, but rather the immune response to a particular infection (or whatever other stressor) that alters the microbiome in such as way that the imbalance somehow becomes self perpetuating. Some people may simply respond more strongly to certain infections than others (and even common flu virus strains are not exactly the same each year). Perhaps there are other predispositions.

Ironically, I guess, I remain agnostic about candida. I became ill in classic sudden onset ME fashion following the worst flu of my life (no antibiotics taken). I also became ill in a known ME/CFS outbreak (though I didn't know that for years). I well-exceeded the minimum criteria for the much later developed CCC and ICC and continued to do so for 15 years after I began to improve (when I said my improvement was slow, I wasn't kidding - and the rate of improvement constantly got slower over time). I had multiple endoscopies, colonoscopies and sygmoidoscopies, all with biopsies and other samples examined at UCLA and elsewhere. No one ever reported anything about candida. My doctor agreed to try nystatin purely as an experiment. It was six weeks later that I noticed the first hints of change.

So, maybe my slow improvement to sub-CCC/ICC levels was due to nystatin and maybe it was not. If it were as simple as that, though, I would have expected to have heard a lot more success stories.

I do sometimes wonder, though, about things in the digestive tract that could be totally off the radar, the way H. pylori was for stomach ulcers... until it wasn't. Maybe there's more than one thing in the gut that doesn't like nystatin.

 

[Alexandru Matei]

If gut flora is to blame, my guess is that there is some sort of disruption of the microbiome, that can be triggered by any number of acute infections or other bodily stresses. I'd also guess that it is not the infection, per se, but rather the immune response to a particular infection (or whatever other stressor) that alters the microbiome in such as way that the imbalance somehow becomes self perpetuating. Some people may simply respond more strongly to certain infections than others (and even common flu virus strains are not exactly the same each year). Perhaps there are other predispositions.

Ironically, I guess, I remain agnostic about candida. I became ill in classic sudden onset ME fashion following the worst flu of my life (no antibiotics taken). I also became ill in a known ME/CFS outbreak (though I didn't know that for years). I well-exceeded the minimum criteria for the much later developed CCC and ICC and continued to do so for 15 years after I began to improve (when I said my improvement was slow, I wasn't kidding - and the rate of improvement constantly got slower over time). I had multiple endoscopies, colonoscopies and sygmoidoscopies, all with biopsies and other samples examined at UCLA and elsewhere. No one ever reported anything about candida. My doctor agreed to try nystatin purely as an experiment. It was six weeks later that I noticed the first hints of change.

So, maybe my slow improvement to sub-CCC/ICC levels was due to nystatin and maybe it was not. If it were as simple as that, though, I would have expected to have heard a lot more success stories.
MI do sometimes wonder, though, about things in the digestive tract that could be totally off the radar, the way H. pylori was for stomach ulcers... until it wasn't. Maybe there's more than one thing in the gut that doesn't like nystatin.

I believe most people with ME have a microbial load in their organism and that will be proved if it hasn't been already.

My symptoms began back in 2004 and persisted till now in dozens of relapses, things got worse since 2002 after contracting chicken pox. I have been bed ridden for months on 3 separate flares.

In your case if you do not have oral trush, esophagus candidias, skin manifestation of a fungal infection it is most likely you do not have candida, that does not mean you don't have a chronic fungal infections (can be babesia, just an example) which is quite serious.

To be on the safe side, you can get tested for candida in your blood stream at your local lab, if it's in your blood stream, it has gotten there through a tiny or larger lesion anywhere in your body, even from your skin from a banal cut.

Regarding viral chronic infections with EBV, Herpes viruses, (HPV) etc. I would look into those as well.

I have done recently an upper endoscopy and esophagus candida came up, have have oral trush for 12 years along with many other bacterial and viral infections since childhood.

It's so complex what is happening that it makes you cry.

 

[dan062]

If gut flora is to blame, my guess is that there is some sort of disruption of the microbiome, that can be triggered by any number of acute infections or other bodily stresses. I'd also guess that it is not the infection, per se, but rather the immune response to a particular infection (or whatever other stressor) that alters the microbiome in such as way that the imbalance somehow becomes self perpetuating.

Your first point there is interesting. I'll have to look into it (just starting to get into the microbiome; it's a fascinating field, and although in its infancy, there's still much for us to learn).

On the second point, I think any derangement to the microbiome takes a long time to fix no matter what its cause (illness, antibiotics). Estimates seem to vary from days to months to years depending on the level of dysbiosis and the type of antibiotic implicated. We're trying to work out ways to make that process happen faster.

Some people may simply respond more strongly to certain infections than others (and even common flu virus strains are not exactly the same each year). Perhaps there are other predispositions.

I think for any illness that might be autoimmune in nature, the need for a genetic disposition is a given (along with a triggering infection and the right environment, which many think refers to the state of the microbiome).

Ironically, I guess, I remain agnostic about candida. I became ill in classic sudden onset ME fashion following the worst flu of my life (no antibiotics taken). I also became ill in a known ME/CFS outbreak (though I didn't know that for years). I well-exceeded the minimum criteria for the much later developed CCC and ICC and continued to do so for 15 years after I began to improve (when I said my improvement was slow, I wasn't kidding - and the rate of improvement constantly got slower over time).

I had multiple endoscopies, colonoscopies and sygmoidoscopies, all with biopsies and other samples examined at UCLA and elsewhere. No one ever reported anything about candida. My doctor agreed to try nystatin purely as an experiment. It was six weeks later that I noticed the first hints of change.

Unless you're immunocompromised in an intensive care unit (which I hope and imagine you're not), you don't have a systemic candida infection. The idea is ridiculous. What I don't think is ridiculous is that: a) you may have had a yeast in your colon with transplanted to other tissues, causing pathology (this is definitely not the same as a systemic infection); b) a yeast(s) may have overgrown in your intestine causing an inflammatory response.

Both are purely speculative theories, but at least in your case, I don't think anything of this nature would show up in a biopsy (as we'd be talking about a small imbalance in the microbiome rather than a classic infection). I also think, however, that blaming 'candida' is purely picking a random culprit. Your problem may not be candida; it may not even be a yeast.

So, maybe my slow improvement to sub-CCC/ICC levels was due to nystatin and maybe it was not. If it were as simple as that, though, I would have expected to have heard a lot more success stories.

I do sometimes wonder, though, about things in the digestive tract that could be totally off the radar, the way H. pylori was for stomach ulcers... until it wasn't. Maybe there's more than one thing in the gut that doesn't like nystatin.

If it's an antifungal, any yeast won't like it. Saccharomyces cerevisiae is implicated in Crohn's disease, and antibodies to it are actually used as a biomarker in the pediatric population. Not UC, though.

I think until such time as people's microbiomes can be sequences in vivo and in real-time it will all be educated guesswork. But I don't think that day is massively long off (lots of great research being done about this at present).

 

[ktred]

If it's an antifungal, any yeast won't like it. Saccharomyces cerevisiae is implicated in Crohn's disease, and antibodies to it are actually used as a biomarker in the pediatric population. Not UC, though.

I think until such time as people's microbiomes can be sequences in vivo and in real-time it will all be educated guesswork. But I don't think that day is massively long off (lots of great research being done about this at present).

My 11 year old son was diagnosed with ulcerative colitis today, so I am finding this thread quite fascinating. His doctor did not request any tests to support this diagnosis and it has me concerned. All the doctor told us was that the UC would go away eventually, and that was it. I would like to request they do some tests, but I'm not sure what to suggest. Does anyone have any recommendations on which tests might be helpful in determining the etiology of his UC?

 

[November Girl]

ktred Have you seen a gastroenterologist about this? There is a lot that can be done with diet; fermented foods, bone broth, etc. I would definitely eliminate any gluten if it were me.

 

[CharlotteLucy]

Hello all, I suffer with severe restless leg syndrome which earlier this year I started getting in my arms too. Apparently if it affects both sides of the body and the upper half as well as the lower half of the body then it is classed as being Finromyalgia. My sleep has been greatly affected as it is at it's worst at night. I have discovered something of a 'miracle cure' for this - MAGNESIUM! I found a thread online some months ago where someone had posted "restless leg syndrome = magnesium deficiency". I was staying at a friend's house at the time and they happened to have a bottle of magnesium with B6. I took the recommended dose that night and my restless leg syndrome was 90% improved. The next night, the same. The third night I forgot and wow the else came back with a vengeance. I will never go to bed without taking my magnesium now! Taking Epsom Salt baths is a fantastic way of getting magnesium through transdermal absorption and is very relaxing too. Epsom Salt is magnesium sulphate and is very cheap. Adding a cup to a bath will do the trick.

I feel I may have a big magnesium deficiency but I also feel my problems go deeper. Forbin mentions the microbiome in his post and I am sure this is what we really need to be looking at. I am currently researching the microbiome and I feel strong that our various problems and symptoms, both psychological and physiological are almost all a result of an imbalance in the gut flora and from pathogenic bacteria and leaky gut syndrome. The microbiome is the future of medicine! I encourage you all to do your own research on this topic. There is so much we ourselves can do to address the health of our gut through diet and consuming fermented foods and probiotics. Certainly food for thought!

I am currently looking into having my gut bacteria analysed. Can anyone recommend a laboratory they have used? Also looking into having tests for leaky gut syndrome. Any recommendations would be greatly appreciated! I am particularly keen to discover if I have a streptococcus overgrowth as I suffer from very severe Obsessive Compulsive Disorder (OCD) and have found information linking streptococcus infection to OCD.

Wishing you all the best on your journey to wellness.

 

[Alexandru Matei]

These symptoms scream Celiac. A lot of people are suffering from Celiac disease and they tend to believe they have chronic lyme or other viral infections. All of my symptoms scream Celiac too, I just cannot get tested since I gave up gluten for 2 days and will not ever ingest gluten again.

I got to the point where I get gluten ataxia, and serious neurological involvement such as arms, hands, legs, feet and head jerking severely when I'm trying to fall asleep.

Everyone that has been diagnosed with fibromyalgia should be tested for Celiac disease.

 

[Clerner]

to add: The jerks and twitches I've been talking about are an aggravated Restless Leg Syndrome. Today was the first time I've had them in my arms, but the jerks have gone as high as my shoulders when lying down.