Anyone else have severe tremors?

[Womble]

My illness started out as CFS and flu-like symptoms, rash, digestive problems, brain fog, etc.

This was fairly typical of the current CFS syndromes, except that now over the past year I have developed severe tremors as well. These tremors usually occur when I am resting after exertion. They are also usually accompanied by extremely frequent urination (every 10-15 minutes).

At this point, my head and arms are shaking so much that one neurologist suggested I go on some Parkinson drug.

Just wondering if anyone else out there has CFS that developed into tremors later on?

Any theories about this, or ideas for treatment?

Thanks

 

[Tito]

I have that. I tried anti-parkinson drugs a while ago but one of the side effects was to reduce blood pressure and make orthostatic intolerance worse. So I stopped. The tremors started about two years after the onset. The tremor is constant but gets worse after a physical effort.
My assumptions and observations are that in my case at least, the tremors are aggravated by low blood pressure, but there is something more. Even with a normal blood pressure, it does not subside entirely. I have always wondered whether the cause was not related to low blood volume.

 

[Valentijn]

Womble
Have you tried magnesium? That might help with muscle twitching/etc.

But moreover, it might be a really good sign that you need to avoid that level of exertion.

 

[Sparrowhawk]

I'm with Valentijn on this one, not sure if the high levels of exertion you are talking about are avoidable but I do everything really measured pace now. I've found if I overdo at all I get all sorts of downside / follow on effects that are not pleasant.

The magnesium may be tough to do if you are starting with low BP. Do you take salt? Salt, magnesium, and potassium are tough to balance as I am finding, but any or all of those may be part of the tremors issue.

I was also offered Celexa (parkinson's drug) for the muscle twitching I get, but since another side effect of it is increased dizzyness, and I've had that issue for 20 months off and on, I decided against it.

 

[Womble]

I was on Magnesium for a while back in the 90's, didn't really make a difference to my fatigue back then, but I didn't have severe tremors at the time.

This is definitely not an 'intentional tremor' or constant tremor, and I'm sorry some of you suffer from that.

This is actually a resting tremor that occurs almost simultaneously with the detox or recovery phase of a CFS bout.

So for instance, at night when I am resting or trying to sleep is when the tremors are worst, because my body is trying to rest and recover.

What is confusing to me is that although I've had CFS/ME for over 20 years, the tremors have really only gotten severe recently (while other symptoms have improved, in some cases).

How could neurological damage have gotten worse, if my overall health is better?

 

[Sparrowhawk]

I also have the worst tremors at night.

Dr. Kogelnik says the tremors are due to viruses taking up residence in and disrupting the nerve cells. But then he is a virologist.

Another possibility for neuronal damage could be high B6 (known in high doses to cause fasciculatoins for instance). I was on high B6 dose when I ran across the wikipedia article warning about side effects, and my tremors have greatly reduced since I quit B6.

 

[taniaaust1]

Hi, sorry to hear you suffer from this symptom.

I went throu a very bad period at one point (not bad for me ME/CFS wise as I wasnt bedbound like I'd been in the past with this illness but bad period as my symptoms switched and went very neurological. Ive gone throu several different symptom complexes with this illness).

I had fasculations happening, spasming (sometimes who body, I once got thrown on the floor on my face cause I had a huge body spasm) and tremoring ..sometimes together, sometimes separately, they were just all different symptoms I had when I go into a bout of neuro symptoms. My tremors were on and off things but for one period I had them for 3 weeks constantly. A doctor saw me during this time and freaked out at all my neuro symptoms even thou I told him they were normal symptoms for me (I also had hyperreflexia with my reflexes, dr nearly got kicked in the face when he tested my knee reflexes) and rang an ambulance. He also had seen me fall into a wall when I'd tried to turn the corner to his office.. my balance was so bad.

On the way to hospital in the ambulance, the ambulance officers noted that my eye pupils also were responding quite differently. (the dr cause he wasnt aware that CFS can cause severe symptoms, he thought I'd taken a drug overdose or that I had serotonin syndrome thou i wasnt even on any serotonin raising drugs at all but I assume cause I had CFS he must of thought I was on these). I was also very sensitive to light (it sent me into shaking and hurt my eyes).

At the hospital, a matron mistook me on seeing me as someone who had parkinsons disease. Two neurologists came and saw me and I hit the floor instantly when they had me do a Romberg's test (I went down so fast that they both missed catching me). Crazyily, they kicked me out of hospital the next day, not knowing what to do with a ME/CFS patient so I never was put onto meds when I had those severe symptoms.

And to top off being kicked out of the hospital the next day.. the dr I saw who had called the ambulance, refused to see me again due to this all being CFS caused (so many drs have refused to deal with my "CFS" or rather ME as I know it to be. "CFS" people arent meant to get symptoms like this, I even had a "CFS" specialist I see who believes that ME and CFS are the same thing, tell me due to my neuro symptoms that those couldnt have been CFS, yet he refuses to believe that ME is different).

Currently Im not into my neuro complex ME stuff pattern (I still cant walk a line like police make people do to test for drunkeness) but rather are now having things such as what appears to me to be maybe Narcolespy (I can suddenly fall asleep) and back to my old virally symptoms eg night fevers when I do too much, sore throat and some kind of viral outbreak

 

[SOC]

Dr. Kogelnik says the tremors are due to viruses taking up residence in and disrupting the nerve cells. But then he is a virologist.

This fits our experience here. Daughter and I both had bad tremors that very slowly reduced to almost (but not entirely) nothing during our time on Valcyte. Of course, that doesn't mean that it's true for PWME in general.

 

[MeSci]

My illness started out as CFS and flu-like symptoms, rash, digestive problems, brain fog, etc.

This was fairly typical of the current CFS syndromes, except that now over the past year I have developed severe tremors as well. These tremors usually occur when I am resting after exertion. They are also usually accompanied by extremely frequent urination (every 10-15 minutes).

At this point, my head and arms are shaking so much that one neurologist suggested I go on some Parkinson drug.

Just wondering if anyone else out there has CFS that developed into tremors later on?

Any theories about this, or ideas for treatment?

Thanks

I echo what some others have said about minerals/electrolytes. I had severe tremor twice, in which all my muscles were continually contracting and relaxing extremely fast - both skeletal muscles and internal muscles. After the first one was dismissed over the phone as a panic attack, I managed to get taken to hospital the second time, and turned out to have near-life-threateningly-low blood sodium. The tremor was indeed like Parkinson's.

It seems that after over-exertion, especially if repeated over a period of time, I start to pass large amounts of urine along with minerals (osmotic diuresis). I also suffered my only-ever fracture after the first episode, and a considerable amount of dental pain and damage - in my view almost certainly indicating demineralisation.

I would advise getting blood mineral levels checked asap. I have been a lot better since increasing salt intake and taking bone mineral supplements, as well as being more careful with exertion.

 

[chronix]

Yes, I've had this since about a year into my illness. Exactly like you described, usually worse at night or after some kind of exertion. Epsom salt baths before going to bed have helped a bit.

I think it's due to nerve impulses continuing to fire when the muscle should be relaxing instead. Seems to happen to finer nerves easier, such as those of your eyelids, fingers, lips etc., but have had virtually every muscle in my body twitch at some point or another.

Anyone had twitches of their gluteus maximus? That's your butt btw! hehe

 

[Sparrowhawk]

Have had them all over. Face tic, abdomen, legs, arms. One time it made me sit up in bed when my stomach muscles went all at once. I also scraped acupuncture needles off some belly points when my arm went once. Have you tried supplementing electrolytes?

 

[Shell]

I have severe tremor too. I have assumed it's about lack of dopamine or a busted uptake and reuptake as I have hyperPOTs and IST. They are much worse when I'm upright or when I'm trying to do something fine motor - buggered my writing and ability to draw; I do both like some old biddy now - but p'raps I am an old biddy.

 

[Olena]

I think that the tremor occurs because of a virus .
But I do not understand the exact scheme of development. As if there are 2 different versions of the tremor - at the beginning of the disease, when the nerve damage is very high and inflammation ( for example, I received VEB began with the zoster virus , which causes inflammation of the nerve ganglia )The second option - when the recovery is due to the treatment , and the damaged nerve cells die .
For example - I now accept monolaurin and feel better , but I had a strong aggravation at the beginning of the reception of treatment - joint pain, myalgia , nausea , headache , and tremor has now begun .

 

[PNR2008]

I also get tremor but it's more essential tremor, neck, head, hands sometimes legs when sitting. Got it in my 23yr of CFS/ME/FM. It comes on when I'm under pressure like getting ready for a lunch or drs appointment. Although I gave up on make-up years ago when I go out it's difficult to apply lipstick, just the upward position of my head shaking and shaking hands. If I don't calm down a luncheon is difficult because I take long to eat and can talk only when mouth is empty. I dread eating in front of other than very good friends. Klonopin helps, caffeine makes it worse.​

 

[Womble]

My concern is that treating the tremor is just treating a symptom.

If you treat the overall condition of CFS/ME, then the tremors should get less.

Has anyone found that to be true?