Pain Management

For everything and anything else not covered in the other RLS sections.
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barbeegee
Posts: 36
Joined: Thu Apr 26, 2018 1:29 am

Pain Management

Post by barbeegee »

I've had RLS for about 10 years and I've had back aches for about the same. The RLS was only at night and made sleeping hard. Any medications I took orally made them worse. It was a living hell. My doctor put me on all the drugs you people are talking about but I can't spell. LOL and some made me sick, one that started with an R caused my throat to swell.

Then in 2018 I had spinal surgery.... biggest mistake in my life. My left leg is half numb and I fell twice. I have more back pain now because I have more bulging disks and my RLS was not just at night after the surgery but 24/7. I was going crazy. I needed a new mouthpiece for my sleep apnea so I went to a sleep study doctor. I passed the sleep study and she oked me for a new mouthpiece. Then she gave me Alprazolam and I not only got a good night's sleep but even the daytime RLS stopped. But that's not all.

I'd been going to pain management for my back and had so many different procedures that only worked for a few days. But one of them that I got on March 4th of this year stopped the back pain and the RLS completely enabling me to stop taking the Alprazolam. I was in heaven. The shot was called a Caudal given right into the base of my spine (coccyx). But it only lasted a month and the pain came back twice as bad and RLS, too. I called them and asked for another Caudal and they said I'd have to wait until mid June. So I'm in horrible pain and the RLS is back. I went back on the Alprazolam which I tolerate well. I started with 1/2 of a .25, but soon they returned so I got permission to take the full .25. Now I'm on an oral steroid for pain and Ihope it works.

So my theory is that RLS is caused by nerves around the spine.... maybe pinched or otherwise irritated. Can anyone else relate to that?

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Pain Management

Post by stjohnh »

RLS is generally thought to be due to BID, Brain Iron Deficiency, caused by inadequate transport of iron across the blood brain barrier, which in turn is caused by genetic abnormalities... HOWEVER... There is much more research to be done to clarify how sure scientists are of this explanation. There is substantial evidence of spinal nerve involvement and numerous other bits of scientific information that are not completely explained by the BID theory.

That said, about 10 years ago I developed progressive hip pain after a minor fall while jogging. After 18 months or so of misery, 1 year on potent opioids, numerous xrays, ct scans, 2 MRI scans, an epidural steroid injection, and numerous visits to several specialists, I was diagnosed with a pinched spinal nerve due to a spinal cyst. Surgery cured the severe hip and leg pain. Now where was my RLS in all this?? I developed RLS in my 30's (I'm 72 now) and it was mildly annoying until my spinal radiculopathy started, and completely disappeared while I was taking the opioids for hip and leg pain (started in my left hip and as the months progressed, increased to include all my left leg). After my spine surgery I got off the opioids and, unsurprisingly, my RLS started back up, not especially worse than before the whole spine incident. Over the next year or so my RLS worsened to the point of interrupting my sleep, and my living with RLS and the side effects of RLS meds started. Eventually I got IV Iron infusions which took away all my RLS symptoms.

Anyway, that is my story with RLS and spine problems. Have you had IV Iron infusions?
Blessings,
Holland

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Pain Management

Post by badnights »

There seems to be a lot of anecdotal evidence of WED/RLS starting up or getting worse after back injuries, or after surgeries on the back or legs. (I have such a story, too: my WED went into overdrive after my first knee surgery, almost thirteen years ago now.) There's even quite a bit of evidence that suggests some sort of involvement of peripheral or spinal neurons, but it doesn't lend itself to clear interpretation.

Was the R medication you were on ropinirole, by any chance? Requip is the brand name in the U.S. It's one of the ones that cause augmentation, so it's probably good that you weren't on it for long.

Did any of your doctors order iron blood work? Did any of them discuss supplementing with iron? For some people, increasing the internal stores of iron can reduce or eliminate their need for medication. I keep my hydromorphone dose low with oral iron, and had just had my first iron infusion last fall. I felt almost normal last winter, and reduced my opioid dose even more (but it has worn off now and I can't get back for another one because of the pandemic :( ).So it's quite possible that iron (especially an infusion) could help you reduce your dose of Alprazolam. You'll need to get your ferritin number, and other things that should be in a normal iron panel. The ferritin is not normally done. Don't let them tell you "it's normal". Anything under 100 is bad for us with WED/RLS.

It's funny how I grew up assuming that doctors always knew better than I did about anything that went wrong with me. That's just laughable, now, after what I've been thru the last 13 years; but I have to feel sorry for the doctors who face those thoughtlessly high expectations every day. We really have to step up and start learning about our disease, to be sure our doctors have all the information they need.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Pain Management

Post by badnights »

P.S. I've moved your Topic to the General WED/RLS forum, since you touch on a range of things, mostly prescription related but your main point is the cause of WED/RLS, so I think it fits well in General. I will leave a "shadow topic" behind so you can still see it in the Physical forum, but it will link to the new location.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Pain Management

Post by debbluebird »

When I was in my 30's my back pain started. I have severe osteoarthritis which also started in my 30's along with the RLS and leg spasms. I do believe it's all related. Arthritis, back pain, RLS and my leg spasms. I have too much iron, so I can not get infusions. It is what it is.

legsbestill
Posts: 561
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Pain Management

Post by legsbestill »

badnights wrote:
Fri Apr 17, 2020 9:17 am
I have to feel sorry for the doctors who face those thoughtlessly high expectations every day. We really have to step up and start learning about our disease, to be sure our doctors have all the information they need.
This is so true but it would be easier to empathise with doctors if they sometimes gave us credit for knowing something about our own conditions. There is a marked tendency within the medical profession to dismiss the view of the patient as being at best of peripheral significance and at worst totally irrelevant.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Pain Management

Post by badnights »

it would be easier to empathise with doctors if they sometimes gave us credit for knowing something about our own conditions. There is a marked tendency within the medical profession to dismiss the view of the patient as being at best of peripheral significance and at worst totally irrelevant.
True. I am very lucky that I have mostly had good doctors who are willing to listen to me.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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