Hiya, cynglassey, and welcome!
But I have Epilepsy and the doctors think it is genetic or a birth injury. I attributed the jerks and problems coming up with words, no balance and eye problems to Epilepsy. Now, I think it might be fibromyalgia. I currently take 3 types of Epilepsy medications one of which I take triple the recommended dose to keep my seizures under control. I think that has masked my pain for a while.
Yeah, "funny" how the gabapentoid fibro/pain meds gabapentin and pregabalin are originally anticonvulsants. GABA itself works differently, but is still effective for both for me.
Seven years ago, I had a genetic panel done looking for colon cancer risk and found a rare defective gene which causes stomach cancer, but they never find it until stage 4. The doctors told me they were 99.99% sure I already had stomach cancer and they needed to remove my stomach...I didn't have cancer.
That's a bummer. Only slight comfort would be the thought that you might have got it unknowingly. Strange that they couldn't check without removing it?
Since then, my health has never been the same. I take double bariatric vitamins and still have to take potassium, iron, magnesium, D-3 and injectable B-12 monthly (which I've learned to give myself).
Well, despite me having that'd actually be similar to me and I need to take lots more too, some of them far above the double dose that vitamins & minerals need to be after gastrectomy. Mine are partly for fibro, but also for MCAS, lipids, inflammation and more.
And I'm practically awake all night. Once morning comes, I can roll over and finally get sleep.
Sleep experts say not to stay in bed awake longer than "10 minutes", which is one of a lot of things they say that is helping me, like especially looking into the early morning sunlight at around 6am to get the cortisol up and the melatonin back up during the day, so it's enough at night, and quite a bit more. Quite different to what I thought I need to do before. May seem similiar to things we used to know as "sleep hygiene", but these are specifically for people like us. What experts like Selsick say is to slowly pull sleep forward by getting up earlier and earlier.
Plus, I bought one of those massage guns and use it on my feet and legs it seems to help some tool.
Ah, great, that's a big tool of mine too, but stretches help even more. I identify exactly where the pain is coming from and do stretches, massage (sometimes together) and acupressure and see what works best.
Some of you are going to probably yell when I say this but I have never researched Fybromyalgia until I needed the narcotic at night. It just seemed like I had too many other health problems to worry about another one. When I started researching it sort of blew my mind. The jerks which I thought were a type a seizure. Not being able to find words, can happen in epilepsy no balance and eye crossing thought it was all epilepsy.
Had really only talked to my primary doctor about the pain. Didn't know how to really explain the leg weakness.
Why you never got round to researching fibro is easy to get. Some people never get round to that even if they have just that.
Jerks do sound like a neuropathic kind of fibro, if that's what you mean, not really a type of seizure, I'd have thought.
Not being able to find words sounds like brain fog, but it depends how you mean it. Brain/fibro fog is when our brain is dull and we forget and can't think well, it's the amount. When I get my focal seizures (mainly speech centre) however, my head is "clear", but totally wonky, my "thoughts" and my "words" are different to what I "intend", they come out wrong in the main part of the seizure and before and after they come out fairly right, but slurred as if I were drunk. That could be called "not being able to find words" too, but it wouldn't be a correct description, so I guess you do mean fibro fog.
No balance and esp. eye crossing said like that I'd've thought is more seizure, isn't it?
When I struggle to keep my balance it's a combination of brain fog with the fatigue and stiffness, but I think I have heard of other ways, esp. people who have more neuropathic symptoms.
But eye crossing? Spose it depends how regularly it happens: If a lot of the time, more fibro, if only in bouts then more seizure-type??
Leg and arm weakness definitely are tough to explain to anyone, even others with fibro. Mine are weak although they are strong, cos I can only use the strength with my short-term energy, 1-3 mins. Docs can't help with this. Manual therapists like osteopaths only if it's from posture, muscles, tendons, bones, fasciae. Mine appears to me to be something at a cellular, mitochondrial level, and the supps I'm taking are doing a lot, but not getting there, still searching.
Hope we can help each other.
