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@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
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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.