My Story: Spinal Stenosis and RLS

By jedsonrn

1 min read

Here is my story. I am 74 years young. I must have had RLS in college since I remember my father, a physician, giving me quinine tablets without much luck. I guess they continued on and off but got especially bad after I graduated nursing school and started working.

Trying Vitamin E

I met my future wife in 1977 and I can remember having a discussion with her mother, a very wise lady of Irish descent about RLS. Vitamin E she said. Take Vitamin E and so I did. I think I probably started taking about 800 iu at bedtime. That was my routine for over 40 years. If I missed a dose, I paid for it.

Spinal stenosis and RLS

Fast forward to about 2 months ago. I have spinal stenosis that has gone from moderate to severe. Suddenly, my RLS is back at night and when I sit too long. Nothing is helping it except just letting run its course. I am sleep-deprived and there is no rhyme or reason for which nights it appears. I have read that my spinal stenosis affects the nerves in my legs and the worsening of the stenosis could cause the RLS. I am awaiting surgery on my back and hopefully, that will not only fix my back but also help my RLS. Stay tuned.

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Lori.Foster Community Admin
Hi <inline-mention username="jedsonrn" user-id="4503535"/>. I assume you have had your surgery by now since you posted this story more than a year ago. I wanted to check in and see whether it helped. I hope your surgery was successful and that you have gotten relief from both spinal stenosis and RLS. Sending the best of all wishes your way. - Lori (Team Member)
1. jedsonrn Member
 Thank you for asking. Yes my surgery was a complete success. I have not taken a Vit E in a year now and have not had any of the horrible symptoms that I had before Vit E or if I stopped taking Vit E. I have to wonder if I had spinal stenosis all along and that was the cause of my symptoms all along. I think I would recommend lumbar spine MRI to rule stenosis out. The surgery took one hour, I woke up they had me get up and use the bathroom and sent me home. No pain and no symptoms. If you are suffering from RLS I feel for you and all the other suffering from this horrible disease. Good luck and again thank you for asking
2. Lori.Foster Community Admin
 How awesome, <inline-mention username="jedsonrn" user-id="4503535"/>! I am thrilled to hear that you no longer have symptoms of RLS and that your pain is gone. Researchers still don't know the causes of RLS, but it is always possible that some cases, like yours, are caused by pinched or irritated nerves. It is so important to explore every avenue on that path to diagnosis. I am so very happy for you. Thanks for coming back and providing this update. Warmest of wishes. - Lori (Team Member)
Psupoppy1953 Member
Hello, Restless legs have been bothering me for over 20 years,15 years ago I started taking ropinirole.I started out with .5mg per day Increasing over the years to .5mg up to 5 times per day. Then I heard there was a 24 hour extended relief.Started with 2 mg per day now I’m taking 4mg per day,it's working very well.I told my neighbor ( who is in the medical field)about my RLS and I would like to either stop taking ropinirole or cut back.He told me I need to raise the dopamine levels.To do this start listening to calming music while exercising walking ETC.Also try meditation (not good at it). I forgot to mention I also have restless arms.The other week before taking ropinirole I stared to get RLS, so I took his advice, I put my air pods in and listened to ocean waves, within 3 minutes the urges stopped.I’m experimenting with this and getting good results but still taking ropinirole.
1. Ray Li Member
 <inline-mention username="Psupoppy1953" user-id="4567883"/> Thank you for reaching out. I am happy to hear that relaxing was able to get the RLS attack to stop. Increasing dopamine levels can be helpful for some with RLS but not everyone has the same reason for their RLS. Also, everyone's chemistry is different so what works for some may not work for others, unfortunately. If you don't mind, can you keep us updated on your experiment? 🥄🦄 Ray (Team member)
jedsonrn Member
Here is an interesting follow up. When I the new restless leg started, several months ago, I had become, for a variety of reasons, very anemic. My doc put me on iron and as my H&H has improved, my symptoms have lessen. I am also drinking 8 oz of Gatorade before I go to bed. I am also reducing my Vit E intake before my surgery since Vit e can increase risk of bleeding. I know I wasn't anemic for 40 years but as some have suggested RLS may be caused by a decrease in body iron. So bottom line is who knows the rhythm or reason for RLS. Medical marijuana is not legal in NH and when I lived in MA, where it is legal, none of my docs could tell me how it might affect my asymptomatic AFib. Surgery two weeks from today. Will be glad to get it over with 
1. Simone Yemm Member
 <inline-mention username="jedsonrn" user-id="4503535"/> You’re right in that low iron is a common trigger for RLS. I’m glad they’ve identified the problem to alleviate your symptoms a little. Good luck with your surgery. Please let us know how it goes! Cheers. Simone (Team Member)
2. Ray Li Member
 <inline-mention username="jedsonrn" user-id="4503535"/> Thank you so much for the follow up, again, I'm sorry I am late responding. I don't know how I missed seeing this update. I am glad to hear that your symptoms have lessened now that you are taking iron. It's good to keep your electrolytes up, not everyone knows to watch out for that. I, too, like drinking Gatorade or Powerade for boosting electrolytes. It is hard to say how medical marijuana might affect your asymptomatic AFib. For some, it in can cause a problem, for others it doesn't. I'm lucky that it doesn't affect my heart but again, that's not always the case for everyone. I think consumption methods may also play a roll in if it could affect you. It's hard to find honest studies being done with medical marijuana. I hope your surgery went well and that you are recovering smoothly. 🥄🦄 Ray (Team member)
Ray Li Member
<inline-mention username="jedsonrn" user-id="4503535"/> I am sorry for being late in responding to this. Thank you for sharing your story with us! I had to google spinal stenosis because I haven't heard of it. I am sorry to hear that you are experiencing that, I can't even imagine what that must be like. I am glad to hear that at one point Vitamin E worked for you. I'm not sure where you live, but is medical marijuana an option for you to try for some pain relief and potentially help with sleep? I hope your surgery is soon and brings you some relief. 🥄🦄 Ray (Team member)