At Wits End
When I was really young, I got a batch of vaccines, got really sick (almost died) from that point on I started to wet the bed. I wetting the bed after going to sleep clinics trying all sorts of methods and didn't really outgrow it until puberty. I had a hard time sleeping. After puberty in my 20's Restless legs started to appear. Mainly in the summers for some reason. It came and went rarely but as I got near my 50's it became worse. It would come and go but it has been here to stay now for the past few years. I would test different changes in my life to see what my diet was at the time it would go away for weeks. It was so hit and miss I was unable to pin down exactly what would make it go away. Until it never went away. Now I'm like you who manages to get 2-3 hours of sleep a night. I can't continue like this for much longer. Here is a list of things I've tried over the years. If you have anything else to try and add.. I'm willing to try it. I know Opiods work because I had some when I was severely injured and it would cure it instantly but I didn't want any. I refuse and I will leave it as my last resort. Problem is I'm getting there. The antiparkinsons drugs would work but I'd wake up with augmentation at 4am worse than I'd regularly have. So if you have anything to add to this list! Please do! I'll give it a try!
Supplements
Multivitamins (daily)
All B variants
C (high doses)
Magnesium (4 different types)
Taurine
Choline
Iron Liquid / Pills
Quinine / Tonic Water
Omega 3.6.9
Melatonin
Magnesium sprays
Gaba
(many others I can't remember)
Homeopathic
Arsenicum album
Rhus toxicodendron
Zincum metallicum
Aconitum napellus
Causticum
Ignatia
Sulphur
Neurexan (sometimes helped)
Traumeel
Arnica
10 different
Pharma
Requip
Anti Parkinsons Drugs (forget names)
Gabapentin
Muscle relaxants
Anti Inflammatory
Codine
Sleeping Pills (Various over the years)
Lifestyle changes
Exercise
Walk before bed
Bath/shower before bed
Heating pads,
Tens machines
Massage Chair
Ice Packs on Head/knee etc.
No screens / mobile / books
Breathing exercises
Relaxation techniques
Diet Changes
No Dairy
More iron based foods
Limit Caffeine
Limit screen time (darkness)
Different types of teas
Ginger
Chai
Camomile
Night time type teas
Parasite cleanse
High fiber cleanses
Woo
Socks
Bar of soap in sheets / pillowcase
Meditation
Binaural Beats / brain entrainment
Awkward positions to sleep
Chiro
Cold Laser Therapy
Acupressure
Tapping (EFT)
I was a lot like you. I had a terrible childhood with regular beatings from my father. At 24 I noticed my knees were jerking and sleep was difficult. The only way to get sleep was to consume a lot of alcohol and pass out. I got married in my early 30's and my wife was the office manager for a neurologist. My knees were much worse by then and my wife was describing my knee problems with her boss. He told her to get me in to see him where he diagnosed me with RLS and after many medications I was given oxycontin and it worked.
I was on oxycontin for about 25 years and was caught up in the opioid crisis where my oxycontin was cut off and was given nothing for the pain.
Over about 5 years I've tried everything legal and got some relief from Kratom and Kratom extracts.
I never thought I actually had RLS but no doctor could or would diagnose me with anything else.
After a lot of research I read an article about "Toilet knees", look it up. A doctor coined the term and it kind of made sense to me although I wasn't having any difficulty using the bathroom,
It got me thinking and a month ago I went to a massage parlor and asked for a "deep tissue" massage on my leg muscles.
After 4 deep tissue massage sessions I think I have solved my knee pain.
I can't tell you the relief I currently have. After over 30 years of medical nonsense my knee pain is no longer.
Please go and get a few deep tissue massages, if the therapist notices your muscles are like concrete, you may have your answer to your problem.
Thanks for sharing your story so openly. You have been through so much for so long, I can only imagine the relief you finally feel after all these years. If you are comfortable sharing, how are you doing these days without the opioids? We know that so many people get stuck on them for all kinds of reasons, and we actually just started a site like this one for opioid struggles not too long ago. In case you want to take a look, the address is www.opioid-use-disorder.net.
Keep taking good care of yourself and enjoy those massages! Sending hugs your way. -Melissa, team memberAbsolutely
After being on Oxycontin 40 Mg twice a day for 25 years I didn't have any problems. I asked my psychologist why I didn't need a step program afterwards and she said that because I was taking Oxycontin during the day and methadone 10 mg three times at night, I didn't have any withdraw issues.
Why doctors do not prescribe methadone along with oxycontin is something I can't fathom. Many would benefit from it.
If you would like to post this, be my guest.
I'll do all I can for folks that could use my help.
If anyone wants to email me, my email address is: michaelkozlosky@gmail.com
Two things I noticed that weren't on your list: CBD (with or without THC, if it's legal in your area), and sexual activity. Also, did you experiment with a gluten free diet? I have no experience in this, but everyone is different and you could get lucky. Your mileage may vary, of course, just wanted to contribute what I could.
Glad to have you here with us! -Melissa, team memberYikes $7500 USD. As a Canadian even with insurance there is no way a regular person could afford it.
Hi
. I didn't realize you were in Canada. In the US, if insurance covers it, it might be afforable depending on the person's plan. Have you considered looking for clinical trials? There might be other devices under development that can help. - Lori (Team Member) I should inquire with them to see. I may. Though this product seems like just a glorified TENS machine which I have. I'd be interested in learning more though and to fork out that much it would need to have a money back guarantee! Though I'm so desperate if I had the money I'd spend it.
OOOhhh thanks! Much appreciated I'll start my research. I've read of even brain surgery for parkinsons that stimulate the dopamine production for people. I'm not that severe obviously but there also have been development in identifying the genome that may be involved. It is all different for people for sure. The maddening part is that sometimes it goes away and I try and figure out why and how!
