Restless leg feeling all over.

[Ladyliegh]

Anyone else get a Restless leg syndrome all over? It is the only way I can describe the all over uncomfortable feeling I get sometimes when I try to go to bed.
I try to take potassium & magnesium daily, along with B12 & multi vitamins.
It has been almost daily lately, I take a Flexeril, sometimes it helps, but often it doesn't...
Is this just another strange symptom of ME/CFS?
(I am still trying to play catch up on info, plus my foggy brain forgets sooo much)

 

[Not dead yet!]

Yes I have this all the time. I'm thinking to up my baclofen amount per day because 70% of the time that helps, but only if I keep it going. Then baclofen makes me depressed and I have to take less. There was a time I had to take OTC valerian just to relax enough to sleep for a few days. But it makes me so fuzzy headed I can't function mentally. I have that in reserve for emergencies like I haven't slept during any night for more than 3 days. But thankfully it's not as often now.

I'm trying to get off of a beta blocker I don't need anymore but i've been on for years. I've been chalking up my current struggles to lie down and relax to the lack of that drug. I think I'm on too many things because I didn't realize it was CFS and not 10000 other things.

I have to swap two drugs to both sleep at night and not have either drug develop a tolerance and need increasing.

 

[Remy]

Anyone else get a Restless leg syndrome all over? It is the only way I can describe the all over uncomfortable feeling I get sometimes when I try to go to bed.
I try to take potassium & magnesium daily, along with B12 & multi vitamins.
It has been almost daily lately, I take a Flexeril, sometimes it helps, but often it doesn't...
Is this just another strange symptom of ME/CFS?
(I am still trying to play catch up on info, plus my foggy brain forgets sooo much)

Sometimes spray magnesium works better than oral for RLS.

You might also take potassium (check your level first!).

Spironolactone may also help by boosting GABA and dopamine.

It's the worst feeling, isn't it? I had it during a medication withdrawal once and it just about drove me nuts.

 

[Ladyliegh]

Sometimes spray magnesium works better than oral for RLS.

You might also take potassium (check your level first!).

Spironolactone may also help by boosting GABA and dopamine.

It's the worst feeling, isn't it? I had it during a medication withdrawal once and it just about drove me nuts.

Yep, that is very much how I felt at dawn, when I finally gave up & took a pain pill.
After days of this (actually Nights) I don't know how much more I can stand....
I will try to order some magnesium spray, thanks for the tip..

 

[Merida]

Yes, I have had this. The only thing that has helped me is opiates. Interesting that after even 1 day of Nuvigil I can get terrible restless legs or even restless body as the med wears off. Think this must be a central nervous system dopamine depletion for me. But, the restless legs literature also discusses low iron stores as a cause.

I have thought for many years that the restless legs stem from a neck problem that impinges blood flow or drainage to/ from the brain, or CSF drainage from the lower ventricles to the upper spinal canal. I have some evidence of this problem: I had a CINE CSF flow study with a neurosurgeon. This showed crowding and poor flow in the lower brain and CSF 'jets' in the cervical spinal canal. I also have a small skull space in the bottom of the skull. ( i.e. Posterior fossa).
Chiari and syringomyelia people also report restless legs. Been to several of those conferences. Sorry to say that our profile is indistinguishable from those folks.

 

[Paw]

I have thought for many years that the restless legs stem from a neck problem that impinges blood flow or drainage to/ from the brain

That's intriguing, as I've had neck issues for decades (including the fact that it sounds and feels like there's gravel in there every time I turn my head. I've been meaning to try an acupuncturist.

@Ladyliegh -- You've been trying all the right things, IMO. I could never tolerate Flexeril, or understand its purpose, since all stims noticeably aggravate my RLS (as Merida points out with Nuvigil).

The only thing that works really well for me is cannabis -- especially when that RLS feeling spreads to the whole body sensation. It's great for all my neurological symptoms, which all get worse at the end of the day. It also helps for sleep in general, so I only use it about a half hour before bed. I never have trouble falling asleep anymore, but I do still get sleep disturbances in those 3-6 AM hours -- though not with RLS usually.

TENS stimulation, also, I found is quite helpful for RLS. I use it every night for an hour while watching TV, and really notice when I don't. Takes the edge off "burning" feet too.

Finally, a long soak in an epsom bath is my best path to soothing magnesium infusion. I always start my evening with it, but if I didn't have the cannabis I'd try it right before bed, as it's very relaxing.

EDIT: I forget to mention that I like baclofen a lot too when I feel I need some extra help relaxing in the evening. Unfortunately my new PCP says baclofen is now in that category of drugs that require her to drug test me!

 

[Merida]

@Paw Thanks for the additional helpful comments. I tried an edible cannabis product and got very sick. Would love to try a different method of ingestion, but have such sensitive lungs
Unbelievable that Baclofen requires drug testing. I know many people having a hard time getting their regular opiate prescription filled. Very sad for all of us who are so responsible and having so much pain and crazy symptoms.
Yes, my restless legs tend to occur at a very specific time each night - about 2:00 am. Warm hair dryer blowing on legs help. Think there might be some circadian rhythm issue involved. Various circadian rhythms are controlled by a part of the hypothalamus, on the edge of the third ventricle. So, perhaps it is this lying down at night that affects the neck, CSF drainage from the brain, and adds pressure to that area around the third ventricle.
One more thing: I have done years of acupuncture, craniosacral, specific atlas adjustment ( NUCCA/ Atlas Orthogonal) with definite help, but still have incredible instability. Plus, I am sure my cervical thoracic junction is out, and my sacrum. Both affect the upper neck. Check out Jerry Hesch in Colorado. Think he is THE expert on this stuff. Heading there in May.

 

[Paw]

I look forward to hearing more about your visit with Hesch. You seem to be on to something. I have had some improvement since I started using a pressure-point pillow that kind of elongates the neck and puts the head in a very neutral position. Re cannabis, I only vape, and it seems to have no effect on the lungs. Have heard of many less-than positive experiences from people eating edibles. Maybe because the metabolism is so much slower?

 

[Merida]

@Paw Try to find the Hesch video on You Tube where a middle age man tells his Dad's ( now age 80 or 81) neck story. Dad injured his neck 60 years ago in some swimming accident. Went to Jerry Hesch at his son's suggestion. Dad called son every day for a week, " My neck is better." After 60 years. Sorry I can not seem to upload direct link on my iPad. No computer genius here!

 

[Ladyliegh]

I used to see a chiropractor, but he couldn't do anything to help me when I got a crick in my neck..all the muscles locked down.
I will try one pillow instead of two...see if it helps.
Re-edibles...when I would make edibles years ago, it was a very different high & usually just put me to sleep, after which I would wake up starving...
It was simple, put butter in a crock pot on low & add weed, let it simmer for a day or two, then use the butter to make whatever you wanted.
I am not sure the growers are being all natural with fertilizer... miracle grow was used in early growth, but never in later stages. I used to know a few growers...

 

[Rachellecooper]

The only thing that you can do to get rid of leg pain is to have good protein food and exercise. But never give strain for your leg.