Hi everyone. I've had ME/CFS for 17 years, and am now severely affected. It tends to mean that doctors write off new symptoms as "just the ME", and it's very hard to get anything investigated. I'm in Scotland, so think NHS, and I'm too ill to travel (mostly housebound, sometimes bedbound). I also have a mast cell disorder, although it hasn't been properly diagnosed as there aren't any local specialists, and POTS or something similar going on (investigations there have been a mess, and the best I can say of the cardiologist was that he was good-looking).

Around the start of 2012, they tried me on gabapentin for vulvodynia pain. I ended up on a 3,000mg dose before they decided it wasn't doing anything useful, and then I was tapered off at the rate of 300mg a week, which I later found out was much too fast. It was horrible. Insomnia, jitteriness, anxiety, GI disturbance, temperature fluctuations (mostly icy) and sweating attacks, a few other things I can't remember offhand, and these horrible jerking movements started up. Most of the symptoms went away after a few months, but the jerking movements would turn up from time to time.

The next noticeable event was being put on metochlopramide, when I was still getting over the last of the gabapentin withdrawal. It took me three days to realise that it was causing the symptoms and that I should get off it, because I was too out of it to function. I also realised that the dose was much too high considering my weight at the time. Jittery, heart thudding, shaking/jerking fits, icy, diarrhoea (despite codeine on one day), unable to rest but unable to stay fully awake, sometimes unable to focus my eyes for hours on end, tried to watch TV and had to keep pausing to rest every few minutes. I've been through some rough stuff in my life but I've found a note from the time saying that if I'd been like that permanently, I'd have killed myself. That bad.

After that, I would notice occasional jerking fits when I was lying in bed at night. I'm going to ignore the other symptoms for the time being, as they're all things I can get to varying degrees anyway. The jerking fits were the ones that really stood out. I had a very bad time of it in summer 2012, when I was extremely ill and my partner suddenly left me, and I kept on collapsing and being taken to A&E [=ER to Americans]. I'd frequently end up in jerking fits that would last for twenty minutes or so at a time. It was exhausting, and that's starting from a base where I'd fallen to the floor and then been too weak to move or speak. The doctors were absolutely hopeless. I've mentioned it occasionally to my GP, but she's thoroughly uninterested, just as she's been telling me that it's "perfectly normal for ME/CFS" when I wake up in the middle of the night with total amnesia (no idea of who I am, and if I work out where the light switch is and notice that there's a man in the bed, complete panic ensues. My current partner is a sound sleeper, and incidentally a total darling and a massive improvement over my ex, so he's probably missing most of it, but he said I greeted him with, "Who the bloody hell are you?" the other night. No idea if this is related) because she asked a neurologist (I suspect this is the appalling-sounding functional neurologist she attempted to refer me to the other year - I looked him up, read his website which explains how ME isn't a physical illness, and how in general you just need to pat patients on the shoulder and tell them you believe them and then they magically get better) and that's what he said. I've been trying to get referred to a leading ME specialist in England for nearly two years now, but Scottish referral rules are that a specialist has to refer me, and have I mentioned that the cardiologist was crap and was telling me that a BP of 94/86 during the tilt table test was perfectly normal? So that's going to take a while longer.

Anyway, random occasional jerking fits after that, usually short, annoying when I'm trying to sleep. I've finally been put on meds for the mast cell stuff, and recently a doctor put me on 20mg promethazine at night (Phenergan/Sominex). It helped for about a week, then I started getting really bad jerking movements in my legs if I was lying down, including watching TV (the cat particularly appreciated my wriggling when she was commandeering my lap). This was, hmm, two weeks ago? I looked up promethazine side effects and stopped it, and also started to wonder if this was Restless Leg Syndrome. Stopping the promethazine helped a certain amount, but it's happening more and more again. It's not just my legs, it's often my buttock muscles or coming from the centre of my back (when I collapsed back in 2012, it was all from my back, so that my entire body was jerking). Lying on my front seems to feel necessary when it happens, for some reason. Recent medication changes: the ranitidine (Zantac) was doubled from 300mg daily to 600mg daily, that's apparently related to this sort of problem, and I also tried doubling the 20mg vitex agnus castus that I was trying for PMS, which can apparently affect dopamine levels.

This probably sounds rather anxious! I've just had such a bad night that even the cat is looking perturbed, and I'm short of sleep and freezing and generally feeling grotty, and thus writing ridiculously long sentences. Sorry, folks. I'll be clearer when my head's more together. I've taken 2mg valium, since that seems to help, although it's not one I want to be taking too often. My body temperature is all over the place right now, I'm nauseous but the only anti-emetic I have (prochlorperazine) will certainly make me a total zombie for today and tomorrow and may well set off the jerking problem again, and the diarrhoea isn't fun either.

Other random thing: I'm sleeping much longer than usual at the moment, probably about 11 hours or so.

I'm about to ring the UK RLS helpline, who can hopefully tell me something, but can anyone suggest anything at all? I'm really worried that my GP will try to ship me off to that functional neurologist, the really terrible one. Or that they will generally treat me as if I'm bonkers. Yes, I did report the side effects from the gabapentin withdrawal and the metochlopramide, but no one was interested at the time. How is this sort of thing diagnosed, particularly in the UK? Am I likely to get labelled with an inappropriate psychiatric diagnosis?

(And then I am going to buy a snazzy new walking stick online!)

Hi Batik,
I'm hoping that you were able to get some sleep and are feeling a little less anxious. I wonder if the jerking movements are related to one of the medications you were taking.

I have RLS and I actually don't get any jerking movements with mine but some people do.

Please let us know how you're doing.

We used to have a lot of Info. posts here on RLS and other things but I can't for the life of me find them this second.


http://www.tardivedyskinesia.com/com.../akathisia.php
Tardive Akathisia and tardive dyskinesia

http://www.helpguide.org/life/restle...ndrome_rls.htm
Helpguide RLS

http://www.mayoclinic.org/diseases-c...s/con-20027364
Myoclonic Jerks - Mayo Clinic

btw. Metoclopramide = Reglan

I too am trying to get a diagnosis with crazy jerking systems - I am SO Sorry to hear about your problems. The thing that is weird with my symptoms is that it too affects my head and torso, and is worse when I am relaxing/laying down. In fact, I was hoping you'd look at a video and tell me if this was similar to your symptoms.

http://www.youtube.com/watch?v=dQDsJkWR6pE

I'm going to talk to 2 different doctors about my condition this week, and if I get any info I will let you know.