Restless Leg Syndrome

@zalley, @pcka,and all...
Well, hello, fellow RLS folks. I've had RLS for many years with a lot of discomfort, pain, burning, constant movement, poor sleep, etc. I saw an advertisement on tv for some drug for RLS, and thought it sounded a lot like my life. Never rec'd diagnosis until I had an overnight sleep apnea test at Mayo Clinic Jacksonville a couple years ago. I rec'd a definitive diagnosis, as well as severe obstructive sleep apnea.

The doctor at Mayo sleep put me on Vitron-C, over-the-counter iron plus C. My Iron level was extremely low at that time. The doc almost started me on iron infusions, but began the OTC first. It's slow to improve, but I am finally seeing a rise in the ferrous level. It's still low normal, but going in the right direction.

After taking the iron supplement for several weeks, I began to see improvements, from a higher energy level, clearer thinking, more pleasant outlook, and yes, my legs calmed and slowed down at night with reduction in pain and discomfort. I thought this was miraculous. Iron has only recently, last few years, been associated with RLS and it does make a difference.

I also am taking Requip, 1 mg nightly before bed. Wow! That was a miracle. Requip gave my legs new life, helped me in so many ways day and night. I noticed within a few days of starting to take this med, I walked more easily, could life my legs and feet, legs didn't feel like 1000 lbs tree trunks, don't keep moving all the time, much less burning and other yucky stuff. What an amazing difference.

I contacted my neurologist who agreed this might actually indicate some of my symptoms are Parkinson's related. I was tested fully for MS and Parkinsons, but both were determined negative. Apparently, I don't have Parkinson's, but do have Parkinsonism symptoms that are helped by treating the dopamine in my brain with requip. I'm in love with that drug! And, since taking iron and requip, I no longer take Lyrica, Lamictal, Gabapantin, or other pain and nerve/brain medications. I'm a different and far better person today thanks to these changes. Gabapantin and Lyrica did help me some, but I'm better now w/o them and with requip.

I also take Medical Marijuana, a 1:1 CBD:Thc tincture at night, 1 dropper, for relief from insomnia, anxiety, RLS, fibro pain, arthritis pain all over my body, cervical and lumbar vertebrae pain, and I use a bi-pap nightly. This regime is very good for me. I've tweeked it at times and will as needed, but I sleep all night now, with potty breaks of course-I'm 74 years old. I don't have seizures anymore. I feel so much better in general now, almost as tho my body is finally, finally synchronized. I feel almost, not quite, almost as tho I'm working on all cylinders for the first time in so many years, 50-60.

What a change I see in me. And, I like me better In fact, I like the world better! Fewer chemicals in this body, walking and 'exercising' in a warm therapy pool 2X weekly when I'm able, walking inside at Mayo between the buildings when I'm there and I pray at the mall again after I'm over the recent sinus surgery and can be in public. I have lots of things going on in this body, including sarcoid and vasculitis and an auto-immune system that's confused, so infections are a serious issue for me. But, I do hope to get walking again, just must be inside in controlled temps.

So, there you go. There is hope for those of us with RLS and it can be a real bugger of a condition. I'm here to tell you there is hope. I found the correct doctors, at Mayo, who are on top of the latest and diagnosed my conditions, got the diagnosis and proper treatment and I'm an improved model.

Blessings to you. I hope you will find the doctors who can and will take an interest in finding out what's happening and get you going in the right direction. It's then up to you, to us, to be proactive about our health. We must continue to push and ask and research the best sources and then fight our battles. It's only when you become your best fighter, supporter and take on the challenge that you will see improvement.
elizabeth

I was diagnosed with RLS years ago. Have seen 3 neurologists regarding this and the below problems. All neurologists said "undiagnosable neurological muscle disorder. No help.

Unfortunately I can not upload a video showing many spasms running through my calves all the time.
It is very annoying but I have found the right dosage of CBD to be extremely helpful. About 150mg taken before bed and same dose when I wake up after it has worn off. But my difficulties don't end there!!!

What I can not find a solution to, is a sensation that runs the length of my muscle fibers, from legs to around eyes. Diazapam helped for a while. I dread going to bed.

Any suggestions?

Welcome @brett07281973, I can't imagine how frustrating it is to have seen mulitple neurologist and still not have a treatment that provides some relief. I'm hoping other members with similar symptoms can share their experience with you and what has helped.

You mentioned that the sensation runs from your legs to around your eyes. Does it feel like pins and needles or electric shocks?

It feels like electricity since it is all the time to say "shock" wouldn't capture the feeling. It impacts all my voluntary muscles.

@brett07281973 - There is another discussion that sounds similar to what you describe for symptoms -- Electrical shocks throughout my body: https://connect.mayoclinic.org/discussion/electrical-shocks-throughout-my-body/

I also found an article that sounds similar to what you describe:
-- Everything You Need to Know About Dysesthesia: https://www.healthline.com/health/dysesthesia

You mentioned that you have seen several neurologists but no other diagnosis for your symptoms. Have you thought about seeking help at a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@brett7281973, @zalley, and others...Have you had your ferrous levels tested? It's a specific blood test but once the doctor saw my very low ferrous levels she add the Vitron-C supplement, over the counter. It helps a lot. I take 1 a.m., 1 p.m. and have more energy, it calms my legs tremendously. I still move them a lot at night, and even when sitting in my recliner I stretch and move my feet and legs, but not like previously and the discomforts are reduced.

This supplement and Requip for dopamine function have made a huge difference, improvement. I suggest if possible you ck into these areas that help me so much.

I also use CBD: THC tincture, 1 dropper, nightly and during the day I take CBD tincture as needed. I love what medical marijuana has done to help with RLS, insomnia, body pain, cramping, foot pain/cramps, etc.

I wrote a full book you can read above...I hope this helps you through this journey. It's so debilitating and frustrating
Blessings as you move forward. elizabeth

Thank you for your kind reply.
Yes I have had my ferrous levels tested and that is not a source of my problem. I believe I was born with this as early childhood memories of waking at night with pain in my calves. Over the years it has gotten worst.
For years I lived on 3-4 hours of sleep a night. Had blood pressure and cholesterol that was uncontrollable, which is one of the reasons the first work up I had at 35 at Northwestern they said I would be lucky to live to be 45.
Between 2005-2008 we lived in Savannah, for end-of-life assistance for our parents. The pain got so bad I could not sleep for 3 days and then fell asleep from exhastion. Then I couldn't fall asleep after 3 days. The neurologist in Savannah wanted me to take opioids for the pain, which I wouldn't do. Did some research and found Marijuania helped the pain and I was able to sleep. For a number of years I had normal blood pressure and cholesterol.

I think it is unusual today to find a doctor that is big picture and connects dots. The reason for my high blood pressure and cholesterol was sleep deprevation.

I have tried many drugs, including the ones you mentioned. CBD helped and does help significantly with the muscle spasms. I take about 150mg by capsules (I make my own from hemp) before bed and then about four hours later when it wears off and my muscles are experiencing multiple small spasms.

My other pain which was under decent control until I got COVID (didn't take the jab and wouldn't). Post covid the nerve pain is worse and I have yet to find something that lets me sleep. Prior to COVID I was sleeping well for me and some nights only waking once. I take potassium and magnesium capsules, but can not say they help, but take them anyway. Also made THC cream with DMSO but it only lasted a few hours and does not address the nerve part.

I am taking a capsule at night that my wife found that helps develop the synapses in the brain. It does help me when I am sleeping to get to a rem sleep as I have an iPhone app that measures my sleeping cycle.

I have found Dead Sea Salt that also contains magnesium on the lower half of my body, including the arches in my feet as they are active and hurt. This does help a good deal, but it only lasts 2 hours or so and I have to say that the swing from feeling relaxed to hurting is much more noticable. So on bad nights I am applying it just about every 2 hours but getting some good sleep in between.

It is obvious that COVID has had a meaningful impact on my pain, sleep problems, muscles, even concentration and memory.

So as is the case for the past 15-20 years (I am now 71) I trust God to lead and provide what I should be doing,

Breathing well is important and I use an oxygen machine at night. Navage treatment with eucalyptus has been very helpful with breathing, In addition to diazapam I take baclofen and St. Johns wart, but like nearly everything in the past it works for a while.

So right now, I am working on my additude before going to bed, taking the prescription drugs and supplements, but I have to say the pain level at night is at a level that I pray doesn't increasd. When I wake up and the pain level is so high, I do find moving and stretching helpful along with some more CBD and maybe the Dead Sea Salt and can get a great relaxation feeling in my muscles so I can fall back to sleep for a few hours.

The EMG of my muscles from the Neurologists shows the contractions to be very similar to ALS, but much less frequent and it isn't ALS because of the pain.

Greater pain is also associated with more muscle use than normal, wheter it be going to church, bible study or work around the house. Legs the most obvious but, it can also be any muscle group that is used more than normal.

I am trying my best to keep this in mind as I go through my day.

@brett07281973, @johnbishop, @colleenyoung, @artscaping, and others....I'm so sorry you've been through this horror for so long. I've found a couple of other things to help.

You're already doing the potassium and magnesium that I recommend for myself. I'm now using a frankincense and myrrh and coconut oil balm from Wise Men, at Walmart online. It has a relaxing and healing effect for a time. The fragrance adds a bit of aromatherapy that helps me, too. I've also found using the 1:1 CBD/THC lotion on my arthritis, hands/feet/wrist/arms/legs is helpful. It has helped me in several different areas, to my surprise. I will use it if my legs get worse, but that rarely happens now thanks to the Requip, iron and MM.

I added several Connect folks who will surely have additional ideas for you that will help. I trust them totally after reading and sharing with them for several years. They all helped me get the healing I'm getting now.

I wish you blessings and healing. elizabeth

Two other things to stir into the mix.
1. I was born with double fast-twitch muscles. There are two types, IIa and IIx. I have the later. Double fast-twitch muscles burn glucose and then recover later with oxygen. Many professional basketball players and football players have them.
2. My symptoms are quite a bit worse after recovering from COVID. I might have stated this before. And I want to thank The Mayo Clinic for their article "COVID-18: Long Term effects which is what led me to this group.

Thank you amiga