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Odd new symptom - unsure if connected to fibromyalgia

2 replies

Ouchymother · 20/12/2018 18:11

Hi all,
I was diagnosed with fibromyalgia about 8 years ago. I'm on 12 hour slow release painkillers and nothing else. Tried all the antidepressants, various other painkillers, supplements etc. Nothing seems to work other than old fashioned opiates and ongoing physio exercises. I work in a musculoskeletal department for the NHS so I'm always asking advice there. However this has been met with confused looks.
In the last 2 weeks or so I have been having very random jerks. All 4 limbs and in my trunk. Quite violent jerks. When googling it matches a myoclonic jerk which I have always done when falling asleep. Occasionally it causes a pain reaction and I end up getting up out of bed for a stretch and try to sleep again.
Now I will say that I have been sleeping really badly recently. I just can't get to sleep, or stay asleep. It's always been a bit crap but recently it's loads worse. Fitbit tells me I average half an hour deep sleep a night. And wake up breifly maybe 20 times but significant waking for more than a few mins half a dozen times. My son wakes once generally so I can't even blame him. And it was bad before he was even conceived so again, not his fault.
Could my lack of sleep be causing these jerks? I had one at an IUD fitting and nearly kicked the Dr in the face. I get them when driving, sitting, standing. No particular pattern. I sometimes feel very dazed, but not sure if that's due to the jerking or coincidence.
I will also mention work has been unbearably stressful this last 12 months. I was transferred under TUPE to a new provider and I absolutely despise the whole process. It feels alien still and I am on the phone to patients, being called vile names, accused of not doing my job well or properly. I don't care etc. That could be causing a stress related reaction I guess.
Any other fibromyalgia peeps have these jerky movements? I do have some nerve damage down my right arm. But this happens all over.
Any ideas?

OP posts:
lyrebird1 · 21/12/2018 20:03

Hi, I don't have fibromyalgia, but I do have chronic pain and fatigue relating to nerve damage. I get the exact same kind of jerks, though starting in my left side, which is where the nerve damage is. Mine is worse when I am either very tired or in more pain than usual, so it could be due to that. My neurologist and pain management consultant have put it down to me having slightly dodgy signals as a result of the pain - basically they are myoclonic jerks, but the threshold for the muscles to be activated is lowered, (if that makes sense), so they are more frequent and stronger.

I find that stretching muscles before bed helps, and I also take Clonazepam at a very small dose, which is a muscle relaxant. As a bonus, it helps me sleep. I did try baclofen too, but it gave me headaches, and I had to take it 3 times a day.

I have found that reducing stress in general helps - maybe because I get to sleep quicker. I like to do mindfulness breathing exercises before I go to sleep, which stops my mind wandering. Are you under a pain management team? I have also been able to access health psychology through mine, as well as some none-medication treatments (lidocaine infusions/ trigger point injections etc).

Ouchymother · 21/12/2018 21:13

Thank you for the info lyrebird. I'm not under pain management. I did ask to be but my GP surgery is in special measures. So unless your almost at death's door they are reluctant to do anything more than give me my usual meds.
Next review I will ask about a muscle relaxant to see if that helps. Trouble is when I get a bad jerk happen a couple of times that limb then hurts more than normal.
I forgot to mention in the first post (useless fibro brain. Memory like a goldfish) that I am due to have a steroid injection to my right shoulder in a week. I have tendinopathy. Dislocation 15 years ago and had recurring dislocations for 2 years. Fixed at 17 but I have arthritis already and now the tendinopathy. If it was just that arm I could understand the connection with the jerks but it's all over.
I'm almost certain it's the sleep issues. But while I have a dependent child I don't feel it's appropriate to go on sleeping tablets. My husband works away a lot so it's usually just me watching DS. Doesn't seem worth the hassle of medication if it's stopping and starting.
Thanks again. Glad I'm not a complete enigma with all these issues, being a mum, and a working one at that and also having fibromyalgia. Feels like I'm swimming against the tide most of the time!

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