jimbourg8
@jimbourg8
@jimbourg8
Posts: 11
Joined: Oct 25, 2011
Restless Leg Syndrome
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.
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John, Volunteer Mentor
@johnbishop
@johnbishop
Posts: 4211
Joined: Mar 22, 2016
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, Connect Moderator, barbarn
JK, Volunteer Mentor
@contentandwell
@contentandwell
Posts: 3603
Joined: Feb 18, 2017
@lknightb I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.
@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
lknightb
@lknightb
@lknightb
Posts: 14
Joined: Oct 31, 2012
@lknightb I have it too. I take requip and sometime tramadol. If the legs get really bad I have to get on my exercise bike for at least 10 minutes. This really seems to help. The bike was the best thing I ever bought to help relieve the symptoms of this horrible syndrome.
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, Volunteer Mentor
lknightb
@lknightb
@lknightb
Posts: 14
Joined: Oct 31, 2012
@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)?
No thank goodness.
Liked by Lisa Lucier, Connect Moderator
lknightb
@lknightb
@lknightb
Posts: 14
Joined: Oct 31, 2012
barbarn
@barbarn
@barbarn
Posts: 121
Joined: Mar 25, 2018
@vickiekay Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!
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.!!!!!
REPLY
barbarn
@barbarn
@barbarn
Posts: 121
Joined: Mar 25, 2018
@briansr Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.
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, Connect Moderator
barbarn
@barbarn
@barbarn
Posts: 121
Joined: Mar 25, 2018
@jimbourg8 I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….
You know, Lynn, years ago I used to take sleep aids that contained benedryl – and finally decided the benedryl was actually "wiring" me! Learned to stay away from that stuff! We are all so different, my husbanc takes a benedryl at night for itching and sleeps like a baby!!!
barbarn
@barbarn
@barbarn
Posts: 121
Joined: Mar 25, 2018
@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)?
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, Connect Moderator
Gary, Alumna Mentor
@gman007
@gman007
Posts: 470
Joined: May 18, 2016
@vickiekay Try drinking Tonic Water….my Mayo doctor suggested a “gin and tonic
without the gin”! The quinine in the tonic water WILL take the jitters away
from the restless leg syndrome. I think that the tonic water tastes bitter,
so I mix it with crushed ice and a little fruit juice, such as cherry juice
or orange juice. It is AMAZING how much it helps after drinking a glass
every day. I use regular, not diet, tonic water. Best wishes!
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, Volunteer Mentor, barbarn
Gary, Alumna Mentor
@gman007
@gman007
Posts: 470
Joined: May 18, 2016
@briansr Hot baths, ice packs sometimes, but gabapentin works the best on nerve
pain, esp nuopathy, and non narcotic.
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
Gary, Alumna Mentor
@gman007
@gman007
Posts: 470
Joined: May 18, 2016
@jimbourg8 I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….
@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
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 2539
Joined: May 10, 2017
@jimbourg8 I’m really glad Gaba works for you. Yes it helps me alot especially in the evening while I am watching TV or ready and sitting still. I have to ususaly take 2 , 300 mg tabs to help calm the restless nerves……..doesnt completely go away but …sure does help tolerate it ! It does help with sleep but I still have to take at least a 5 mg ambien to get me to sleep. I also alternate the Ambien with Klonopen to help me sleep . I have to carefully “balance” the intake as side effects of those meds…make one dizzy or balance problems from time to time. Each person has to learn how to regulate their doses as we all respond a bit differenty……….
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
Treasure Ransom
@transom
@transom
Posts: 1
Joined: Oct 10, 2013
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