functional myoclonus

[Pavalova63]

hi

Just got my diagnosis today after suffering from ongoing jerking movements of both my upper arms and shoulder for two years. I have fibromyalgia. Seen a neurologist today and it would appear that these two are linked. After researching today I have seen that pain is related also. Now it’s a matter of managing my fibro symptoms and trying to use distraction methods to help with the jerking!!

I’ll continue to do some research and see what helps but I know that not stressing about the jerking helps me. I’m used to them now but it’s so debilitating when it’s at its worst. Fatigue and flare ups trigger it. Stress is a big one.

[Lady4]

Thanks, Education is key as not a lot of help out there for either. My cousin sufferers from Fibro and sometimes has to spend days in bed (I guess thats when she has tried to push herself a little too much).

[Pavalova63 in reply to Lady4]

My advice is to do plenty of research on fibromyalgia. Join a group or attend information seminars. Fibromyalgia is so debilitating. You need to learn to pace yourself and rest up when needed. Light exercise does help. Walking around the house is enough on bad days. Fibromyalgia has many symptoms that a lot of people would not be aware of. I paid privately to see a rheumatologist as our NHS waiting lists are a disaster. He was very supportive and fully understood my condition but was not aware of the myoclonus and its relationship with fibromyalgia. The neurologist spoke to me yesterday and I can see how it relates. Pain also plays a big part. Basically getting the right pain medication and managing your symptoms seems to be the way forward. Finding the right person who understands will help emotionally.

I do a lot of self care. I go for facials, physio, and tried reiki. All these help my mental health and wellbeing. Sometimes you just have to chase after what you need and fight for the answers. I hope this helps. It can be a very lonely place without help and support. Find local Fibromyalgia support groups. That is a good first step. If you’re not well enough to go out, go online. 😊

[Lady4 in reply to Pavalova63]

Thanks, I think thats what she does, pretty sure being living with it around 20+ years, sadly had to give up work years ago too but has a very supporting husband and family.

I did tell her recently about the connection with SFN which I don't think she was aware of.

[LifeDestroyed]

I know about the fatigue. I'm bedridden 90% of the day. That plus the constant pain and numbness... I hope you will get better and keep trying. Bless you.

[LilyMarshell]

Quite a lot of my seizures, including myoclonus are typically based on sensory, so don't beat yourself up too much if you try to distract yourself and it won't settle [I used to get frustrated when my body wouldn't do what I told it to].

The best way to tackle them is usually to address the core issue. Your pain from Fibro and FND can both trigger FSD [Functional Seizure Disorder - including Functional Myoclonus]. Has your neurologist got you in contact with pain management? Or are you able to go see a pain management specialist? The more you're able to limit your triggers, the more you're able to control how often it happens.

I know it's easier said than done, but it might be helpful.

[Pavalova63 in reply to LilyMarshell]

Good advice. Thank you .

[LilyMarshell in reply to Pavalova63]

No problem - let me know if you need to talk anything over, I'm happy to help where I can