Restless Legs Syndrome (RLS) Discussion Board

Hi all- LTNS. I just wanted to pop in and let you know my latest treatment method that seems to be working pretty well. After years of being on oxycontin, my RLS symptoms were still constantly present (though MUCH better than taking nothing). I finally ended up at a pain clinic a few months ago because I had reached the end of my rope.

The pain specialist said he'd like to try an epidural steroid. Even though my back MRI looked pretty normal, he said he'd had success with this before. So I went in and had betamethasone injected in between L5 and S1 last Thursday-- and I have to say, my legs haven't felt this good in almost 10 years. I don't know how much longer it will last-- but it kind of makes me wonder if some of us have some type of undiagnosed spinal involvement? At any rate- I've been able to cut my meds in half and am no longer struggling going up and down stairs as before. I'll let everyone know how long it lasts....

Its great to hear good news.
Long may it last.

Wow that sounds pretty interesting. I hope it continues to work for you, man.

Josh, please let us know about how it develops.

I have to wonder if there is spinal involvement there is, too. Interesting to follow the research related to dopamine in the spinal cord....

I hope your pain clinic doc writes this up for the journals. Hint, hint...

Perhaps just a coincidence, but several days ago I also had an ESI as well as a right lumbar facet injection. Since those injections my RLS and PLMD have been extremely benign. However, it has been only several days. However, and a bit of bad news perhaps, I also had just and ESI about 6 weeks ago prior to returning for the one(s) I just had. While I do recall my legs seeming somewhat better following that first ESI I do know that for about 10 days or so prior to my returning for the second ESI my RLS/PLMD went off the scale. So, I'm wondering if there is some type of cause and effect with the ESI and the ESI wearing off. Have to monitor the results of these second injections more carefully but hope the increased symptoms was just the random fluctuation in intensity that I, and others, experience.

Sojourner-- I have somewhat started experiencing what you described... the further I get from my injection date, the more my RLS seems to be returning. But it is overall better than before.

I think what I was most impressed within the first few weeks was the remarkable affect this procedure had on my leg movement at night. I used to literally kick the crap out of my wife every night and after the spinal steroid, this has completely stopped.

Ann-- this doctor I'm seeing said he has seen many RLS patients get better with steroid injections in the spine-- but his practice also focuses on folks with spinal stenosis/herniations, etc. He said it doesn't tend to last longer than 4-8 weeks. : ( Kind of makes you wonder if spinal stimulation or implantable spinal pumps would be a viable alternative for really nasty RLS (like what I have).

Being a pharmacist I would imagine you might carry a little more weight if you tried to open a dialogue with some of the various RLS experts about this. Because I wonder if they have had any experience with it, or might be willing to look into trying it for really difficult cases as well.

I'm still doing "better" after almost 6 days but I suspect Josh may be right in that, like lots of other treatments, it may be a temporary improvement but welcomed. I just hope I don't get ramped up symptoms like before and, if I do, I hope it is temporary and not a permanent increase. I suspect it would take lots of research before anyone would do the ESI just for RLS but I do see how it might be helpful in cases of extreme augmentation etc. Something, to help get through the bad times. Lots more expensive than adding a narcotic, however.

FWIW, It has been about 2 weeks since my ESI and I am beginning to feel it effect wearing off as relates to my rls/plm. Interestingly, it also appears to be wearing off with respects to any benefits for my back. Mmmm. For me anyway, I definitely feel there is some very noticeable benefit of the ESI for my rls/plmd. The fact that my rls symptoms are reappearing about the same time as my back pain perhaps suggest to me that maybe I am not idiopathic (careful now!) but have secondary rls due to back problems. Only thing about that is my rls dates back to early adulthood, if not sooner, and decades before I began to experience any back problems. Another mystery.

Another FWIW, It has been approximately 3 weeks since my last ESI. I can definitely state my evening RLS/PLMD has geeked up enormously on both the intensity and frequency scale (9 on the stimpmeter) to the point that my current med regimen is relatively useless and I have had to schedule with my doc in this regards. This is similar to what happened after my first ESI. So, don't know what to make of it and seems too much of a coincidence for me to feel that there is not a cause/effect relationship. Almost feels like some type of augmentation effect similar to what I experienced with Sinemet. Probably will post to Dr. B. more as an FWIW. Best wishes to all. M.

Oh, that sounds miserable! So sorry you are going through that.

I'm about 4.5 weeks post ESI and it has just wore off... my legs are awful again. I wish someone would do a study on the whole spine- RLS connection. I can't do ESI the rest of my life--- but I would be willing to do traction or perhaps some back stretches, etc- to lesson my symptoms.

Josh, I know one group is studying the relationship, but that's all I know about. Sure seems that there is a connection there...