Is this familiar to anyone here?

I occasionally have weird things happen to my body, usually related to nerve issues. Last night, I woke up and had been sleeping on my back (I normally don't sleep on my back, as it seems I get more stiff. I generally start sleeping on my side, with a smalll pillow between my knees).

Evidently, my ankles had been flexed, pointing straight. Right away I noticed they felt odd. They felt like they were stretched as tight as rubber bands--it pulled and pulled. I got out of bed, and all of a sudden, it was like I had a 'nerve storm' in both ankles. The nerves must have been sort of shut off, I think? It was creepy. I "lumbered" out to the living room and sat on the couch and massaged both ankle fronts. It helped pretty quickly. I had taken a muscle relaxer before bedtime.

I suspect this had more to do with my nonspecific neuro condition than with my fibro(??) Can anyone relate?
This morning, I phoned my neurologist's office. I was a bit disappointed in their reply, yet I do see where they are coming from, too.

The nurse said I should start by seeing my primary doctor. I told her it does seem like there are nerve issues involved in this (I've had a few somewhat similar experiences), so wouldn't it make more sense to see a neurologist? She had talked to the doctor (neurologist) and he had said since my condition is so strange, he doesn't know if it can be helped by a neurologist. I was quite surprised by that! He had also sent me to a rheumatologist last Fall. None of the doctors seem to know what to do with me, I guess. The nurse did say after I see my primary doctor, I could always go back to the neurologist.

The original neurologist I had around 2003 was considered one of the top neuros in 5 states, according to my previous primary doctor (now both are retired). I feel I did have a very thorough examination and tests by him, yet they were inconclusive. They still don't know what I have, though he thinks it could be related to a severe flu I had as an infant, where I was near death.
As I'd mentioned here before, he said his best guess is something similar to cerebral palsy. He told me he had initially thought I either had MS or ALS. I guess I'm kind of a mystery.

In the past year, things do seem somewhat worse, yet I'm nearing my mid-60s and am no kid anymore. I also wonder if I take too FEW meds? I can sometimes get by with very little. I find they are very drying, and with being at risk for glaucoma and also UTIs because of bladder prolapse, it's a concern of mine (though I do drink lots of water!)

Sorry for the long ramble. I do have an appointment next week with my primary doctor and will likely get some labs done. But I still have a hard time thinking a primary doctor would be very familiar with neuro issues, or am I wrong? It almost seems like the neurologist doesn't know what to do, but as I said to the nurse, couldn't they check for pinched nerves, disc issues, etc.? But--they want me to see my primary doctor.

Thanks for any thoughts.

All good, sound advice as always, Sherrine. Thank you!

I am going to look into finding an internist. I still miss my 'old' doctor who retired 2 years ago. He knew my medical history practically by heart! My "new" doctor is okay, but I can certainly see the advantage of going to an internist, rather than a general practitioner.
And, though I thought both doctors were good, I felt a little bounced around when I saw the neurologist and rheumatologist, but I don't think either of them knew what to do with me!

It would be good to sit down with an internist and just go over everything. Hopefully I can find a good one who is willing to do that.

I am taking a little more of the meds now, and yes, it is helpful. I think I'm sensitive to most meds; a little bit can go a long way. But it's sure helpful to take a muscle relaxer BEFORE I get involved in any active project. Great advice, again, Sherrine! You're a real blessing to this forum!

I thought you were taking a muscle relaxer...just not Robaxin. They usually prescribe two 500 mg tabs every six hours but the tablets are scored so you can easily cut it down to 250 mg. That’s hardly nothing. I wish you could do that. It’s helpful.

Try to eat a more alkaline diet. That helps reduce inflammation.

Also, ibuprofen really helps inflammation. When I started taking it, I took two tablets every six hours and barely anything happened. My internist said some need to take three tablets at a time...not to exceed 12 tablets in a 24 hour period. That made all the difference in that medication. I do that twice a day.

Sherrine

Ah yes a spirited round of doctor ping pong. I know how you feel. When I first started having symptoms I got bounced from Neuro to Rheumy to you name it. I saw so many doctors I lost track. Eventually I ended up at the Mayo Clinic in Jacksonville and even they were scratching their heads. The slapped me with the Fibro diagnosis
and called it a day. It can frustrating when you have so many weird symptoms that cross different areas of medicine. The system just isn't set up for it. You either have a good primary or you see a bunch of specialists. At least that was my experience anyway.

I've not had the exact issue you described but I often have limbs that sort of just do whatever they want. Interestingly enough it most often happens when I'm lying on my back in bed. Almost exclusively now that I think about it. Sometimes my legs will straighten out and sort of lock up all on their own. I also have a similar issue with my core where I'll sort of fold up like I'm doing a sit up. Good times. At this point it's been so long that stuff like this has been happening I barely pay it any attention anymore. I will say though that over the past month I have been eating a very low carb diet with almost no sugar, a lot of my more whacky symptoms have either stopped or slowed. I know personally avoiding anything that causes inflammation helps me, hence the diet.

Not sure I said anything helpful there but I wish you the best of luck!

Hi Akkami: That's interesting that you have similar things happen, especially while lying on your back in bed. I can sure relate to that! I wonder if it's because the body is attempting to rest and calm down, while the nerves are still ....well, partying!
It's also helpful that you mentioned diet. I've gotten rid of caffeine (yes, even chocolate ). And, I eat very little sugar. I'm also focusing more on vegetables and fruits. Since I love carbs (bread, macaroni, etc.), it isn't easy, but I think it's making a difference. I'm glad it's apple season here, along with "clean out the garden" time. Good, fresh foods.

Snow Green: Good catch--the rheumatologist also mentioned RLS! But wow--I never heard of Restless Body syndrome at all. That's interesting, but sure doesn't sound fun. My legs/feet seem to be my biggest enemies.
I will check that out on the Mayo Clinic site.

Thanks much to both of you! Hope you're doing okay.