New relapse of ME after 15 years

[Woozy]

I have relapsed with ME after 15 years of remission and it has come back in the form of tremor and myoclonic jerks at night. It gets worse as I start to nod off to sleep. That is when the jerk happens and I wake up. I also can't get REM sleep as my sleep is out of whack. ANyone else get these symptoms? what meds do you take for them? I will see my GP next week about being referred to a neurologist.

 

[Kitty]

I'm really sorry to hear that, @Woozy, it sounds like a heck of a shock after all that time. It's good to hear you're seeing a doctor, though, as it can be easy to assume everything's down to ME. It might be, of course, but maybe just describe the symptoms and see what they say?

Good luck with your appointment.

 

[Ash]

Yes.
No medicine.
I have not told my Drs about this recently because they banned me from speaking to them about my long term health at all. Only allowing me to speak to them when I’d give up trying to talk about that and was telling them about all the acute urgent stuff that was going wrong, mostly because they were refusing to treat my main conditions.

For the short term stuff they see me same day usually within a couple of hours. So it seems not so much to be me they are trying to avoid as ME etc that they are refusing to manage.

Anyway strangely now they are all referring me off for tests here there and everywhere. I am going to see a neurologist at some point, very much not by choice, I guess I’ll ask them.

Mine is probably long Covid or spinal injury related.

I’ve heard many LC folks reporting this so Covid seems like a likely candidate?

 

[Woozy]

I'm really sorry to hear that, @Woozy, it sounds like a heck of a shock after all that time. It's good to hear you're seeing a doctor, though, as it can be easy to assume everything's down to ME. It might be, of course, but maybe just describe the symptoms and see what they say?

Good luck with your appointment.

thanks Kitty

 

[Woozy]

Yes.
Mine is probably long Covid or spinal injury related.

I’ve heard many LC folks reporting this so Covid seems like a likely candidate?

I didn't know LC could have these symptoms. Thanks for letting me know.

 

[jonathan_h]

I’m very sorry about your relapse.

I don’t have treatment suggestions, but I wanted to add that I’ve also experienced myoclonic jerks like what you’ve described. They started about 10 years into my ME and would happen just as I was falling asleep. I’d snap awake, limbs flailing, feeling extremely cognitively sluggish and out of it. Some nights, after this happened a couple times, I’d force myself to stay awake well into the morning hours to spare myself.

It was very distressing. I did an overnight sleep study at a clinic and didn’t experience any jerks during it, so it was unhelpful (and shattered me as I was severe by then). Thankfully, the jerks mostly went away after a few months and I’ve only rarely experienced them in the last several years. Hoping they similarly disappear on their own for you or are amenable to medication.

 

[Ash]

How long did you have them for @jonathan_h?

 

[jonathan_h]

How long did you have them for @jonathan_h?

A few months where, from what I remember, they’d happen around 2-3 nights per week

 

[MeSci]

Do you have enough salt, @Woozy?

 

[Woozy]

I’m very sorry about your relapse..

I am pleased to say that the relapse was short-lived. I had a great night's sleep and woke up this morning and guess what.....the tremors I had been having for the last few weeks have all gone! So this has now made me re-think what ME actually is and isn't. For one, it can't be organ pathology because the symptoms were transient. I have no idea what ME is that causes such a vast array of symptoms but I am wondering whether there is a mind-body connection somewhere. My glands did sting a bit during this tremor and jerking period so I wonder why they did that. It's all so bizarre.