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.
Liked by Mamacita, Alumna Mentor
Hello @lknightb — I don't have restless leg syndrome but have had severe cramping in my legs with my small fiber peripheral neuropathy sometimes when I don't drink enough water. Staying hydrated is pretty important for most autoimmune type disorders and maybe a lot others. I did find a recent article on RLS that mentions hydration as one of the things that may help so it's something easy to try if you aren't already doing it.
Medical News Today Jan 2018 – Everything you need to know about restless legs syndrome:
— https://www.medicalnewstoday.com/articles/7882.php
John
Liked by lknightb, Lisa Lucier, barbarn
@lknightb I too love my recumbent bike. I generally do about 30 minutes, increasing the resistance and moving the seat closer, at the suggestion of my ortho after having my knee replaced. It has helped me so much.
JK
Liked by John, Volunteer Mentor, Lisa Lucier
I had my knees replaced too. That's why I originally bought the bike. I ride it for 30 minutes also but when the restless legs start up I get back on for about 10 minutes. What a blessing it is to have.
Liked by JK, Alumna Mentor
I've been doing tonic water (tho' I use the diet tonic) for years. Started it – well, started it because I like a vodka tonic in the evening – but the fact that it seemed to help leg and foot cramps was beneficial. Now, I include RLS in the benefits!!! it. does. seem. to . help.!!!!!
Liked by John, Volunteer Mentor, Lisa Lucier
well – a support group is for us to try to benefit from what someone else has found beneficial – what works for one may not always work for all!!!!
Liked by Lisa Lucier
Requip seems to make me sleepy – which is particularly nice at bedtime. I think it makes a huge difference in my RLS.
Liked by lknightb, Lisa Lucier
Hi @barbarn. I have always seen in research that quinine which is an ingredient in true tonic water is somehow beneficial to many with RLS and also may help some folks with leg cramps which I have every night for the first couple of hours after laying down. I used to enjoy it with gin, but now as a teetotaler, I have to be content with a twist of lime.
Liked by John, Volunteer Mentor, JK, Alumna Mentor, barbarn
Hi @stigmatized. I realize your post is nearly two years old and was just wondering if you are still visiting Connect and just not posting? Have you found anything that relieves your RLS? If so, there are many here who like you get no relief from gabapentin and would love to hear any ideas that have helped others. I have learned in my time here, that there is a tremendous knowledge base among the members and it is often far more valuable than a google search.
Gary
Liked by John, Volunteer Mentor, Lisa Lucier, barbarn
@barbarn, we learned the hard way that the wired effect was what happened with our oldest son. The only people needing sleep after giving it to him for allergy problems were me and my wife. He would have not been as hyper with a bag full of gummi bears! You are spot on about how everyone reacts differently to drugs and gene mapping is helping us understand exactly why.
Liked by barbarn
I have only taken Diphenhydramine Hcl (Benadryl) for allergy purposes, @barbarn — it's like my rescue medication if I have an allergy "attack" that goes above what my usual allergy medications can relieve. I have experienced the same thing as you — I've been wired and wide-eyed for hours after taking it, though many people report sleepiness.
Liked by barbarn
I have a relative that suffers from RLS. I am going to share the many tips I have read in this string with her, and suggest she join Connect. 🙂
Thanks, all!
Liked by John, Volunteer Mentor
@lisalucier
Hi, @lknightb — that is very interesting about your bike routine that helps with your restless legs syndrome (RLS). I thought you might like to meet some others who have talked about Ropinirole (Requip), like @peggyj4411 @kyjeanne @beho @painwarrior @emilyanne @rabbit10 and @lynsorensen, so you can compare notes on using this medication for RLS. @johnbishop may also have some thoughts.
@lknightb — have you experienced any side effects from the Ropinirole (Requip)?
Liked by lknightb, John, Volunteer Mentor