Do you get tremors?

[MEguy]

I have had a relapse of ME and I am getting tremors. It is like being attached to the main electricity.

They get worse at night when I go to sleep for some reason. I also am getting air hunger or breathing deeply as if I don't have enough oxygen to breathe in. Does anyone get these symptoms? How do you cope with them?

[ButterflyPrincess1]

Hello,

I can only speak from my own experience and I'm afraid I can't comment on the air hunger issue.

However, I do have a permanent tremor.

My tremor has been around for over a decade, so I'm not sure it has anything to do with my CFS/M.E, as those symptoms developed a few years after the tremor.

Have you had any recent blood tests, for things like vitamin or mineral deficiencies?

Have you considered medication side-effects (if you take any?)

I've tried a few things to help myself (cutting out caffeinated drinks, for example, eating and drinking regularly, resting when needed, reducing stress and stopping a particular migraine medication- under medical supervision, of course.)

I mentioned the issue to the neurologist I was seeing, early on (for chronic migraines) and they seemed very dismissive of it.

Sadly, I haven't found any of the strategies I've tried helpful and none of the medical professionals I've spoken to seem bothered, so I stopped bringing it up.

I should mention that I have regular bloods done and I'm already being treated for separate autoimmune issues (just in case anyone's wondering ).

If you've tried any or all of the suggestions above, I'd encourage you to speak to your GP.

I hope you find something that helps

[Beefull8]

I haven’t been dx with ME but I think it’s what I have. I also was told I have lung issues but wonder if it’s more related to ME than asthma. Do you notice it comes on during certain times? For me, traveling on an airplane or doing too much causes exhaustion to the point of breathlessness and even trouble sitting up. I’ve found that lactoferrin helps in the morning. By night, I just have to lie down.

[Patdoyle]

yes I’ve been getting tremors for about 3 years. My GP put me on a beta blocker called propranolol which does help. I also get the lack of oxygen feeling and that comes and goes. Have had that since first diagnosed with ME 12 years ago

[MEguy]

Ok I will ask my GP about a beta blocker maybe. Doesn't it slow down the heart though?

[MEguy]

It's amazing but I managed to sleep like a baby after not being able to sleep for a whole week and my tremors have all gone as have my jerking awake at night. This illness is so strange. It comes and goes.

[MEguy]

Actually forget my last post, the tremors haven't stopped, they happen at night or when I am trying to sleep. I get a jerk when I am about to fall asleep too which wakes me up.

[klr31]

Have you had your thyroid checked and got the numbers yourself? Air hunger can be a hypothyroid symptom. Also, low iron can be a cause. Best to check all vitamins and minerals if possible. Karen

[MEguy in reply to klr31]

Hi yes I have had my thyroid checked and it is working fine. The last TSH was 2.75 (up to 4.2)

and FT3 was about 50% through the range or so if I remember right. B12 is pretty high too. Folate was low as was vit D but I have been supplementing so they are now in range. I went through the "is ME hypothyroidism" once or twice but I can't seem t o find anything wrong with my thyroid numbers so I guess ME must be a distinct illness (A neurological dysfunction somewhere). If it were as simple as the thyroid, many people with ME would be able to get better on thyroid meds I guess. Unfortunately it isn't so simple. Maybe I could have a trial of thyroxine again to see if it works but I am skeptical at this point.

[klr31 in reply to MEguy]

You really need your T4 and T3 tested, plus do you have antibodies? If you have thyroid problems then 2.7 is quite high as it's best around 1. I have both Hashimoto's and M.E and thought sorting out the thyroid would make me well. Unfortunately, it didn't but I am more stable thankfully and have a little more of a life than I had.

Karen

[MEguy in reply to klr31]

I have tested my FT3 and FT4 about one month ago and the FT3 was about 50% through the range and the FT4 was 75% through. So, it can't be my thyroid unfortunately but thanks a lot for the tips. I will certainly bear this in mind. what's your ME symptoms? do y ou get tremor?

[klr31 in reply to MEguy]

I don't get tremors. B12 deficiency can cause tremors.

Karen