RLS Dead End?

I learned about using a shakti mat on You Tube from a Swedish nurse. You can get them at amazon. My partner calls it a bed of nails. I lay on it without a shirt at nite before bed. It only hurts for less than a minute and then it relaxes you. She thought it might take your mind off the RLS. I think it actually enables relaxation by forcing the nerves to "shape up".

Thanks. You should get the most issue of Nightwalkers, the Restless Leg Foundation publication. It has a 1/2 page listing of various types/classes of drugs that can trigger RLS. Benedryl, statins &certain anti-depressants are listed as potential triggers.

My husband drinks over 64 oz of water with electrolytes added & ferretin levels after infusion are over 100.

We’re still hoping that we’ve overlooked something or that something new has been discovered.

Thank you all for your helpful suggestions. Keep them coming.

I hope it helps you! Some sleep on it all night. I can only do about 30 mins, but it helps. Now I found another trick on Tube from a PT. Lay on a tennis ball that's on the 3 trigger points of the gluteus medius. Put your hand on the sacrum and then move to the side about 2 or 3 inches and put the ball right on the top of the pelvis. Roll around on the ball till the muscle unknots. Then move it to the right and repeat and then move more to right and do it again. Repeat on the other side. I'm convinced that we each have to find out own solutions because RLS seems to be a partial mystery to the medical community...but I know they are really trying.

Thanks. I ordered a shiatsu mat that’ll be here on Friday. Then we can fight over who gets to use it as I could use it to help with my own issues. I’ll report back on how his RLS responds to the mat.

@akhw, @tim1028, @cookierockwell, @colleenyoung and all...So many folks having RLS problems. I'm so sorry to see such suffering, as I'm one of you. I was diagnosed a couple of years ago with RLS during a sleep apnea overnight sleep test at Mayo Florida. I knew what was happening but didn't have a name for it. I suffered from every RLS symptom for years, day and night. The sleep doc ordered a ferritin test to test the level of the ferritin protein in my blood. Apparently, this protein is responsible for getting the iron we make to the intestines for use throughout the body. Ferritin levels are frequently low in RLS patients. They prefer the test to show 100+ levels to help reduce the symptoms.

That first ferritin test results were 25. Pretty low. Normal is up to 300. So, to have a 100 result seems simple. Nope. I've yet to go over 88, the highest result following 2 IV iron infusions 2 years ago. Wow! What an improvement. I could barely walk into the infusion room with my hot pink walker. Within a couple of weeks, I was able to walk up and down the stairs in my home, on my feet, still pulling myself up as I walk, but able to move. Those infusions were a life changer for me.

Since RLS improved greatly. It seems I don't absorb nutrients well, so I had more infusions last year in November. Now, my ferritin levels are down again, so I expect to have more infusions soon.

That's fine with me. If I have to have infusions several times annually I'm a happy girl as they really help. My hematocrit and hemoglobin are always at normal, good levels. The ferritin test and protein panel results tell the tale.

I also take magnesium supplements daily, D3, and B12 injections weekly, Super B supplements daily, and potassium and other supplements. I'm also using Probulin Colon Support Probiotics and Dr. Gundry, MD biome supplements to help my leaky gut and help with the intestine issues. I'm feeling better now than in many years since all these supplements are reaching my organs.

I also take 1-2 CBD gummies for women over 50 and some 1x1 tincture, CBDxTHC. These help with anxiety, insomnia, general relaxation, and of course the RLS. I also use Voltarin cream if I'm having more leg discomfort. If I don't drink enough water I will have issues. It's vital for us to hydrate well daily.

I hope this information helps some of you or leads you to find your solutions. Be blessed.
elizabeth

Reading your post made my day. So many people with RLS never get the medical help they need and end up going down countless rabbit holes to mitigate their RLS symptoms. I was diagnosed 13 years ago and getting my ferritin level raised from 19 to over 100 had a big effect. And you are lucky you saw a Mayo specialist rather than someone who isn't expert on RLS. Check out the RLS Foundation's website for further helpful information. http://www.rls.org

@tim1028 and all...Thank you, Tim, for the kind words. I pray my words help someone and truly make a difference in some lives. This help I received and am receiving was a long-time coming. I have fought all my adult life, fought to have someone hear me. It is amazing to me that as an older woman, finally I found help for so many life-changing issues I experienced for so many years. Mayo has saved my life. Saved my sanity and added years of a better life to my calendar. I'm so grateful.

RLS was a tough one. Thanks for the mention of the foundation. I'm heading there online now.
Be well, be blessed, Tim. elizabeth

@akhw, @tim1028, @cookierockwell, @colleenyoung and all...So many folks having RLS problems. I'm so sorry to see such suffering, as I'm one of you. I was diagnosed a couple of years ago with RLS during a sleep apnea overnight sleep test at Mayo Florida. I knew what was happening but didn't have a name for it. I suffered from every RLS symptom for years, day and night. The sleep doc ordered a ferritin test to test the level of the ferritin protein in my blood. Apparently, this protein is responsible for getting the iron we make to the intestines for use throughout the body. Ferritin levels are frequently low in RLS patients. They prefer the test to show 100+ levels to help reduce the symptoms.

That first ferritin test results were 25. Pretty low. Normal is up to 300. So, to have a 100 result seems simple. Nope. I've yet to go over 88, the highest result following 2 IV iron infusions 2 years ago. Wow! What an improvement. I could barely walk into the infusion room with my hot pink walker. Within a couple of weeks, I was able to walk up and down the stairs in my home, on my feet, still pulling myself up as I walk, but able to move. Those infusions were a life changer for me.

Since RLS improved greatly. It seems I don't absorb nutrients well, so I had more infusions last year in November. Now, my ferritin levels are down again, so I expect to have more infusions soon.

That's fine with me. If I have to have infusions several times annually I'm a happy girl as they really help. My hematocrit and hemoglobin are always at normal, good levels. The ferritin test and protein panel results tell the tale.

I also take magnesium supplements daily, D3, and B12 injections weekly, Super B supplements daily, and potassium and other supplements. I'm also using Probulin Colon Support Probiotics and Dr. Gundry, MD biome supplements to help my leaky gut and help with the intestine issues. I'm feeling better now than in many years since all these supplements are reaching my organs.

I also take 1-2 CBD gummies for women over 50 and some 1x1 tincture, CBDxTHC. These help with anxiety, insomnia, general relaxation, and of course the RLS. I also use Voltarin cream if I'm having more leg discomfort. If I don't drink enough water I will have issues. It's vital for us to hydrate well daily.

I hope this information helps some of you or leads you to find your solutions. Be blessed.
elizabeth