Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

Interested in more discussions like this? Go to the Sleep Health Support Group.

I take 0.5MG pramipexole (prescribed) for my RLS
and it does enable me to get a good night's sleep.
Pramipexole is not a sleeping pill, but helps with
the misery of RLS.

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@rjjb

I take 0.5MG pramipexole (prescribed) for my RLS
and it does enable me to get a good night's sleep.
Pramipexole is not a sleeping pill, but helps with
the misery of RLS.

Jump to this post

Does it make you groggy?

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No, it is not a sleeping pill. It just eases the misery of Restless Legs Syndrome.

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@rjjb

I take 0.5MG pramipexole (prescribed) for my RLS
and it does enable me to get a good night's sleep.
Pramipexole is not a sleeping pill, but helps with
the misery of RLS.

Jump to this post

What does your physician say about the augmentation issue with the dopamine agonists?
I was on ropirinole (Requip). After 3 great years, symptoms worsened and spread, despite changes in dose. I consulted a renowned expert who diagnosed augmentation and recommended that we stop the med. They no longer prescribe this class of meds as they claim sometimes augmentation does not go away.

Symptoms improved to pre diagnosis baseline, but still severe.
Be careful and good luck.

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I take 0.5mg pramipexole (prescribed) for my RLS.
Ask your doctor about that.

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@jimbourg8

Thats interesting that it would work for you. But I highly doubt it. Is
there any scientific medical evidence in any journal to support this ? I
could try this but my problem is not “jitters”. It’s an actual burning
sensation on my pressure points from sitting in one place or pressure on my
elbows etc…only relieved by moving or getting up and mostly worse in the
evenings. It’s hard to believe it would be more effective than say
gabapentin……..but what the heck , anything is possible I suppose. It’s
worth a try….will comment when I have done this.

James G. Bourgeois

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Tonic has helped me too. And I did at one time find some research on it. Certainly worth a try!

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We take Hyland's Restful Legs PM on Amazon.com. We read that Melatonin can cause restless legs.

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@JustinMcClanahan

Hello @pcka,

Welcome to Connect. Battling restless leg syndrome for 30 years sounds really frustrating, I am sorry to hear that.

We have a lot of conversations here on Connect about Stem Cell therapy, but most are centered around joints or Bone Marrow Transplant for treating hematological diseases. However, as a result, I have done my own research in to what Mayo Clinic is doing with Stem Cells. The following information is what I found out regarding a consultation service number Mayo Clinic has as it pertains to Stem Cell therapies:

Regenerative Medicine Consult Service Process

Transplant Call-in Center
844-276-2003

What to expect when you call the number:

– An employee will answer and ask the nature of why you are calling
– Say you are interested to stem cells for osteoarthritis or whichever joint ails you
– The employee will funnel your call to the appropriate coordinators from there
– For joint issues, you will be transferred to PMR (Physical Medicine & Rehabilitation)
– Appointment coordinators will ask more specific questions (inclusion and exclusion criteria)
– If you meet the criteria:
– You will be asked to send in your records and a doctor will look at it in a case-by-case basis

Important Notes to be Aware of:
– PMR is a busy practice, so wait times may exist but answers will be given
– If a treatment exists in the clinic for a diagnosis (i.e. Leukemia) stem cells are not offered
– Price is out of pocket
– Types of stem cell treatments offered are Bone marrow aspirate concentrate (BMAC) injections and Platelet rich plasma (PRP) injections. You can find more specific information on these types of injections here, http://mayocl.in/2AUIoAn.

If you’d like, you can feel free to call the number above and ask them the specific questions you have and they will be much better suited to answer your questions than I ever could be. If you don’t mind me asking as my own knowledge is limited about restless leg syndrome, are Parkinson’s pills regularly prescribed for this condition? If it is not too personal, are you also battling Parkinson’s?

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I have had RLS for as long as I can remember. It increased in severity after I had children. The first medication the doctors put me on was Requip which is a dopamine agonist and was originally used to treat Parkinsons. It is commonly used for RLS. After about 4 years, I started rebounding on that medication. It started making my symptoms worse and they were occurring earlier in the evening. I was afraid to go anywhere because I could not sit still. I tried Gabapentin for a while but it did not work for me. A new sleep doctor discovered I have had a recurring issue with iron deficency. Iron infusions have been a very helpful therapeutic. The last ten years I have also been on varying doses of klonopin. In addition I work with a naturopath on nutraceuticals for my adrenal gland and other hormones. They are helpful but I have never been to completely wean off meds. I also avoid all antihistamines because the sleep doctor told me they would aggravate RLS symptoms. I would rather deal with being congested than not sleep. I think everyone's journey is a little different. Find a good sleep doctor who listens and then try different meds and therapies that work for you.

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