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RLS Dead End?

Sleep Health | Last Active: May 12 7:49am | Replies (53)

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@ess77

@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

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Replies to "@akhw, @tim1028, @cookierockwell, @colleenyoung and all...So many folks having RLS problems. I'm so sorry to see..."

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

God bless you. I just did a search of my labwork, and found in December of last year my ferritin level was only 16! I'll be calling my PCP in the morning. Thank you so much for posting about this. I never would have known otherwise.