RLS rapid onset when comorbidity with neuropathy

[Matiss]

How many of you are out there?

I am a 66 year old male, retired and in generally good health. I take a vigorous hour-long hike on horse trails every day.

My RLS diagnosis came only a few months ago. I had been seeing a neurologist because of parasthesia side effects I had developed from antibiotics, when I started getting uncomfortable sensations in my legs in the evenings. The symptoms kept getting worse. I found myself getting up and moving around to lessen the discomfort. Mornings of course were great! no discomfort at all.

BTW, My Doctor had also previously diagnosed idiopathic peripheral neuropathy, which I did not realize I had been developing for a number of years.

For unrelated reasons I went on a keto diet, which unexpectedly had the effect of lessening the evening leg pain issues. I subsequently learned that a keto diet helps epileptics... and perhaps not coincidentally, Gabapentin, an anti-convulsive drug, has helped control my RLS symptoms.

My Doctor explained it is quite common for people suffering from neuropathy to develop RLS, and unfortunately when it is a comorbidity, the course of RLS progression can be quite rapid.

Initially, my Doctor prescribed 300 mg Gabapentin, to take in the early evenings before the usual onset of my symptoms. It worked miracles. I was able to sleep through the night with no discomfort.

This only lasted a few months. I started getting my symptoms earlier in the day, and with the doctor's permission, started taking 2 doses of 300 mg Gabapentin; once in the late afternoon/evening and then before sleep. Over the course of several more months, I found myself needing ever larger doses and now am on 1200 mg Gabapentin twice a day; early evening and at bedtime.

I realize this is a large dose and I probably can't take more if there is more progression. Is there a stopping point? Are there more of you out there? What is the long term outlook?

[Matiss]

I discovered a site that had posts addressing my symptoms. The URL is:
https://www.drugs.com/comments/gabapent ... pathy.html

There are a number of people who post about having RLS in addition to Peripheral Neuropathy (PN). And more to the point, how well Gabapentin works for them having both PN and RLS.

My takeaway is Gabapentin can work, but you and your Doctor won't know until you try it. It seems to work on something less than half of the people who try it. But if it does, Great! I am grateful it's working for me and hope it does for a good long while.

[ViewsAskew]

People who come here for an answer often get what they need then don't come back all that regularly. I likely recall about ten people who've mentioned both PN and having RLS/WED. That seems like a much better site for an answer to your question. Glad you found it!

[Polar Bear]

I have suffered with RLS for nearly 40 years. Some 20 years ago I began getting painful strange sensations on the top of my left foot but put it down to nerve damage following vein surgery a few months previously in the same leg. This settled a bit.
About eight years ago I developed burning in both feet and assumed it to be part of my RLS. This eventually settled but came back a couple of years ago. My GP prescribed pregabalin which helped but gradually needed increased. It also supported the codeine I take for my 24/7 rls.
About 3 years ago I was diagnosed with Diabetes Type 2. It started to seem that my burning feet and leg (and now also numbness and supersensitivity) were peripheral neuropathy as a side effect of my diabetes although the PN was apparent before the Diabetes.

[badnights]

How many of you are out there?

I am a 66 year old male, retired and in generally good health. I take a vigorous hour-long hike on horse trails every day.

My RLS diagnosis came only a few months ago. I had been seeing a neurologist because of parasthesia side effects I had developed from antibiotics, when I started getting uncomfortable sensations in my legs in the evenings. The symptoms kept getting worse. I found myself getting up and moving around to lessen the discomfort. Mornings of course were great! no discomfort at all.

BTW, My Doctor had also previously diagnosed idiopathic peripheral neuropathy, which I did not realize I had been developing for a number of years.

For unrelated reasons I went on a keto diet, which unexpectedly had the effect of lessening the evening leg pain issues. I subsequently learned that a keto diet helps epileptics... and perhaps not coincidentally, Gabapentin, an anti-convulsive drug, has helped control my RLS symptoms.

My Doctor explained it is quite common for people suffering from neuropathy to develop RLS, and unfortunately when it is a comorbidity, the course of RLS progression can be quite rapid.

Initially, my Doctor prescribed 300 mg Gabapentin, to take in the early evenings before the usual onset of my symptoms. It worked miracles. I was able to sleep through the night with no discomfort.

This only lasted a few months. I started getting my symptoms earlier in the day, and with the doctor's permission, started taking 2 doses of 300 mg Gabapentin; once in the late afternoon/evening and then before sleep. Over the course of several more months, I found myself needing ever larger doses and now am on 1200 mg Gabapentin twice a day; early evening and at bedtime.

I realize this is a large dose and I probably can't take more if there is more progression. Is there a stopping point? Are there more of you out there? What is the long term outlook?

Matiss,you probably need iron, and it's possible that iron alone will lessen your symptoms markedly. WED/RLS is essentially a brain iron deficiency. If you can print the 2021 Updated Algorithm (there's a link in my signature line), it is a valuable paper to show to your doctor. There are some things you should know, first.

Blood iron levels don't show the levels of iron in other organs, and the brain, especially, can be wildly different in iron stores than the blood, because it is protected from the rest of the body by specialized cells in the capillary walls called the blood-brain barrier. In WED/RLS, the iron transport mechanism in the bbb doesn't function properly.

Many (most?) doctors don't realize that brain iron can be so different from blood iron.

Read the paper. Make a copy and highlight the parts your doctor should know. Ask your doctor what he thinks of this publication. Highlight the part where tests are recommended for serum iron, TIBC, stauration index, and ferritin, and ask if you can get those tests.

When you get your results, if ferritin is below 100, and there is no indication that you're in danger of iron overload from a genetic condition, your doctor should suggest that you begin oral iron supplementation with vitamin C on an empty stomach in evenings or every second evening. If your ferritin is low enough, he should recommend an iron infusion. This is not likely , since it has only recenlty become front-line treatment for WED/RLS.

I am fading out here and I have not given you the detail you need -- but I will post this anyway so you have something at least. Someone else will hopefully take over. Long short : IRON might be the key for you.

You should also stay on the keto diet, and make sure to eat fermented foods if you can tolerate them, because the antibiotics may have hurt your gut microbiota, and enabled bad bugs to get a foothold. Bad bugs can cause neurological issues. (There's not a lot of solid sicence for that statement, but enough, I think; and loads of circumstantial evidence and indirect science.)