I have an appointment with my pcp today. My rls is awful plus i have pins and needles in two toes and more recently a spot on the side of my.foot. All on the left side.
I know i need to advocate for myself. What meds should i ask about?
I'm on 2400mg of gabapentin a day already. Have tried requip in the past with zero results.
I live near Boston where we are having an "opioid crisis" which means those are out of the question even though they work.
I'm taking iron daily, trying at home solutions to no avail.
Thoughts??
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Dogdoo
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Switch to ferrous bisglycinate every other day. The brain puts up a defence ( English spelling!) to stop too much iron getting in - studies have shown more iron is absorbed by taking every other day. I’ve raised mine to 175-200 over 2 years using this method.
2400 mg of Gabapentin should work but it depends how long you’ve been taking it. If longer than 6 weeks and it’s still not helping, try Gabapentin enacarbil (Horizant) which is far superior or pregabalin (Lyrica).
Gabapentin didn’t help me but changing to pregabalin and OxyContin really helped.
I understand USA is clamping down on opioids but they are incredibly effective for RLS and there are doctors over there willing to prescribe them.
I’m in a study run by Massachusetts General university hospital in Boston on opioid use so there will be doctors who will prescribe in Boston. Try calling the sleep or psychiatry dept of the hospital and ask if they know of any RLS friendly neurologists.
Not reacting at all to a dopamine agonist is quite strange. Are you absolutely sure of the diagnosis?
I suffer from both RLS/WED and a damaged lower spine and sacro-iliac joint, and it is the latter that causes pins and needles and other unpleasant feelings in one leg, not the former.
Perhaps you may be dealing with more than one cause?
Hello again. I am a bit confused about the supplementary iron business. I have inherited RLS and I have a serum ferritin of 175. Would some more iron help or does it only help secondary RLS sufferers. You are very knowledgeable on these matters and I would be pleased to hear from you. Thanks
The iron problem is fundamental to familial RLS, we have a glitch in the system, and the horrible cascade starts from there. It seems we are unable to 'hang on' to iron, so it needs to be assessed every few months.
So, we may have an IV iron infusion, the ferritin shoots up to a few hundred, then a couple of months later we have lost half of it. In people without RLS, this does not happen. levels stay up or go down very, very slowly if they have no new iron sources in the diet.
I think there is no harm in trying oral iron for a while, to see/'feel' what happens.
If a 'normal' level for a man can be 500, then you certainly could go higher.
I think I read somewhere that you get worried when you go above 600 or more. But even if you shoot up to that level, it will come down with this condition.
When did you last test? Remember, we are all unique, so what is right for one may not be right for another.
(I had an iron infusion because my ferritin level was 20 - it shot up above 300, but in eight weeks it was down to 150. All gone, and they don't know where it goes - probably into the bones).
Thank you so much for your reply. It is a few months since I had ferritin checked but due to go to docs next month. I have had an epidural spinal injection two weeks ago for spinal stenosis and sciatica and due to having suffered the sciatica now for a year I have developed some neuropathy in my left foot. I see you have spinal issues as well. I think my RLS got even worse during the last year so maybe two are connected. Injection has helped up to a point - at least severe constant pain has now become bearable intermittent pain!!! I am female by the way and I shall maybe try some additional iron to see the effect. Thanks again
My sciatic nerve problems are usually sorted out by a physiotherapist and a chiropractor - and me.
The 500 level for men is opposed to a high normal of 250 or so for women, but that lower level would be because of menstruation, not because of any possible harm
Numbers of sufferers have said that they felt at their best at around 350. That is not a dangerous level for anybody.
If you go to your doc for the next blood test on iron, make sure you get the blood drawn in the morning and don’t eat before: “fasting” levels. Not many docs will know. Check out the IRLSSG paper on iron sciencedirect.com/science/a...
The requip was a very long time ago and to be honest, was during a time when i was coming off long term opiate use for multiple back surgeries. So that probably isn't a fair assessment.
My pcp took some blood and we will talk next week. I've been taking the ferrous bisglycinate every other day.
Since my gabapentin is prescribed by my pain management dr so i have to go that route to get that dosage. Will definitely ask about lyrica or horizant.
I've been on opiates in the recent past, and my rls was infinitely better. Recently I've been experiencing a mental health crisis and weaned off ms contin 15mg, twice a day. Trying out different psych meds has also been a factor and wanted my system to be clean going in.
Kratom has helped in the past but financially is not possible right now.
As far as the psych meds go, its such a balance between maintaining my physical safety and sanity with relief from the rls.
A complicated presentation at the moment i suppose. I'm thankful i found this board and rhe help and HOPE it provides.
If your mental health crisis was depressive then you should consider another medication.
My own doctor refused point blank to prescribe this med, although I was having a hellish time with augmentation on DAs, because he knows I am inclined to depression.
The only solution left for me was opioids, and now I take low-dose methadone - with great success.
Sorry to hear that. Many meds for anxiety & depression can cause or exacerbate RLS, especially SSRIs so research meds that will not make it worse- Trazodone and Wellbutrin for example.
Hello. Here's a thought, for what it's worth. You live "close" (well, not really, but compared to me!) to Baltimore, where Dr. Christopher Earley works. He's at Johns Hopkins. You might look him up on the internet. He is one of the leading proponents of using low dose opiates to treat RLS. It might be worth a trip. Good luck!
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Do you just see a neurologist for meds?
