New Member - Credibility Problem

[chuas2]

Hi all,
Thanks to everyone for making me feel welcome!

I began having traditional symptoms of RLS in my childhood. It was never addressed by doctors, or taken seriously by my family. Going to bed every night was a horror.

Then the symptoms sort of went into "remission." Recurred periodically, but in my left (always left) arm and torso. I'd have symptoms about once a month that were unbearable, and caused me to visit the emergency room one night. Triage nurse said "well, you're not having a heart attack, so go away and don't bother us."

In the past few years I've been on opiates for severe back pain; lo and behold, no WED symptoms. A few weeks ago, my pain medicine doc "weaned" me off the opiates and onto buprenorphine, and then off the buprenorphine. Violent resurgence of WED symptoms. Worse than before, I feel if I had to live with this, I'd end it, you know?

So I'm going to try to do low doses of what I was on before, which was MS Contin and hydromorphone, with the proviso that they will provide only marginal pain relief (due to tolerance), but will alleviate the WED. And I'm not a stranger to pain, I can deal with that; what I can't deal with is the WED symptoms. But just getting people to believe me is an uphill battle.
Very sad (and sleepy).
Kris

[debbluebird]

Welcome to the board. If it were me, I would try only one at a time, or maybe even something that is even less down the ladder of pain meds. You never know what will work. Also, there are a lot of other things to try and do. This site is full of information to help you. I'm sure the monitors will help you. Good luck.

[Rustsmith]

Kris, welcome to the board.

Unfortunately, our past experience is not as unusual as you might think. Many of us suffered for years prior to being diagnosed and/or have been through a number of doctors before we found one who "gets it" and is willing to help.

I am not the one to provide much guidance about opiates since that is something that is hopefully in my far future. Please understand that their are non-opiate medications that can be effective for treating WED. If you have not tried either the dopamine agonists (trade names Mirapex, Requip and Neupro) or the family of drugs that you will see described as alpha-2-deltas (trade names Neurontin (gabapentin), Horizant (gabapentin enacarbil) or Lyrica (pregabalin)) then you might want to discuss these options with your doctor.

Of course, if you have lost faith in your doctor's willingness to help you with this, you should also consider finding a new doctor. If that is the case, post a question about it as well as the region where you live and we will be happy to provide some suggestions about your options.

[ViewsAskew]

It's also extremely common to find out that opioids help when you're prescribed them for something else! Explaining that to a doc can be very difficult - they often thing we're drug seeking. I've been "fired" twice as a patient by doctors .

Do make sure you get your serum ferritin checked. Anything lower than 100 needs supplementation, potentially even an infusion. It doesn't always work, but up to 80% with infusion get at least some relief from symptoms - and can subsequently reduce medication.

[Polar Bear]

Welcome Kris, is your GP cooperative and willing to work with you on the treatment of WED/RLS.
If so, there are several publications on the Foundation main web site that would be useful for discussion and guidance with your doctor.
.
Views has mentioned your Ferritin serum levels, this is important. It is not normally done in routine blood work. Just in case your doctor or yourself would ever be considering trying one of the DAs i.e. ropinerole or mirapex which is considered the front line for starting treatment.

[chuas2]

Wow, thanks everyone for the responses. I'm also currently on Effexor and Mirtazapine for depression, so I am a little anxious about adding a dopamine agonist in the mix. I know I've done the opioids and they work, so I was thinking in that direction.

However, I will discuss these with my psychopharmacologist.

I'm also going to go through the articles on other non opiate and over the counter remedies.

Thank you! A cliché I know, but I feel better already, knowing there are other folks trying to make headway with this disease.
Kris

[ViewsAskew]

There's a book out (a bit old these days) about addiction and the brain. The author makes a point that the reason AA type groups work is because of the people and how our brain responds to people who care for us. It's extremely important to us and can heal us in many ways.

I'd love to know all of you in person, but I'll settle for knowing you here. It makes me feel better all the time.

[EeFall]

A few weeks ago, my pain medicine doc "weaned" me off the opiates and onto buprenorphine, and then off the buprenorphine. Violent resurgence of WED symptoms. Worse than before, I feel if I had to live with this, I'd end it, you know?

I have severe WED and eventually my doctor put me on buprenorphine (Suboxone) at 4mg a day to totally relieve the symptoms. I also have it in arms, torso, and legs too. Without meds I have to pace constantly for 16 hours a day and can't sleep for days. Suboxone (along with gabapentin which makes me sleepy because buprenorphine makes me a little hyper) has given me back my life and allowed me to continue working. If you can find a good sleep doctor in your area they know how serious your condition is, even if others don't.

Forgot to mention that withdrawal symptoms from opiates for me are just the same as RLS symptoms and can last for months after taking them.

[chuas2]

EeFall, I actually have read that withdrawal symptoms can either bring on, exacerbate, mimic WED. I live in California, and I don't know if the laws are the same all over, but the Pain Medicine clinic I go to cannot have more than 40 patients at a time on buprenorphine, which is why they told me to "stop it." Of course, there was no follow up, no additional advice, and they wouldn't return my phone calls. That said, it may be time to look for a new pain medicine doctor.

I am going to see my psychopharm next week (been going to him for years, he's very sympathetic), and talk to him about dopamine agonists. Has anyone taken Wellbutrin and had any relief from it?

Also going to see my GP Monday (I'm determined to get someone to help me!!) and ask her about Lyrica or Gapapentin. My husband took Gabapentin for a while for peripheral neuropathy (for his MS), but didn't have much luck for it. However, he doesn't have "case book" WED.

I've been under a tremendous amount of stress, job hunting, but it's also a "good" time to try to find WED relief without going back on 18 MG Morphine Sulfate!
Thank you very much all, for the support and advice!
Kris

[Rustsmith]

Kris, interesting to hear about another MS spouse with WED. My wife also did not get much relief from MS related neuropathy from gabapentin, but it seems to be helping me. I am one of the group who does not experience pain via WED, but my doctor is using it to help me sleep. I also occasionally suffer from migraines and so far, the gapabentin appears to be the best thing I have ever taken to prevent them.

[EeFall]

EeFall, I actually have read that withdrawal symptoms can either bring on, exacerbate, mimic WED. I live in California, and I don't know if the laws are the same all over, but the Pain Medicine clinic I go to cannot have more than 40 patients at a time on buprenorphine, which is why they told me to "stop it." Of course, there was no follow up, no additional advice, and they wouldn't return my phone calls. That said, it may be time to look for a new pain medicine doctor.
Kris

I go to a doctor that specializes in sleep medicine. He put me on buprenorphine specifically to relieve RLS and is on the east coast. I live on the west coast of USA. Methadone works too, at least it did for me for some time. Sleep doctors are under different restrictions since it has nothing to do with getting someone off of an addiction.

[chuas2]

Back from the pain doc, and they decided to keep me on buprenorphine (low dose, 2 MG whenever possible).

Changing medications can be a b*&%%$, but I'd still be open to DA.

Weird though, I get really scared. Anticipatory anxiety I think, when I'm changing drugs...especially if you're not sure it's going to work.

I'm learning so much from this site, and didn't think one even existed! I'm over fifty, and have spent that many years being told "it's all in your head" "just relax"(like, the worst thing you can do lol)! This site, everyone here...I am so, so grateful!
Kris

[ViewsAskew]

Kris, for what it's worth, one of the best WED/RLS docs, Dr Mark Buchfuhrer, in the world is in California. Of course, it's a big state, lol, so you may not be close. He's in Downey, to the southeast of LA. I fly from Chicago to see him.

[chuas2]

Great information, suggestions, experiences from all. I can't express how grateful I am. I'm making my way through various topics in the forums. I feel awful that there are so many of us who experience this, but am very grateful that a number of treatments actually help, and are available! It's like the relatively new interferon beta 1-alpha that my husband uses for MS. We are both hopeful for advances in both diseases, and I'm so glad I can get up to the minute news here!

Wish I could see Dr. Buchfuhrer! I'm in San Francisco, so a bit of a trek, but another possibility is UCSF, which has a cutting edge biomedical research facility. There's sure to be someone there with knowledge of WED.

Interesting re the gabapentin, Rustmith. I also don't have "pain" with my symptoms, but the crawling, "itchy bones" sensation is so intense it's almost pain.

[ViewsAskew]

Great information, suggestions, experiences from all. I can't express how grateful I am. I'm making my way through various topics in the forums. I feel awful that there are so many of us who experience this, but am very grateful that a number of treatments actually help, and are available! It's like the relatively new interferon beta 1-alpha that my husband uses for MS. We are both hopeful for advances in both diseases, and I'm so glad I can get up to the minute news here!

Wish I could see Dr. Buchfuhrer! I'm in San Francisco, so a bit of a trek, but another possibility is UCSF, which has a cutting edge biomedical research facility. There's sure to be someone there with knowledge of WED.

Interesting re the gabapentin, Rustmith. I also don't have "pain" with my symptoms, but the crawling, "itchy bones" sensation is so intense it's almost pain.

He teaches at one of the California hospitals. It's very likely that some of his students have moved to various parts of the state and would totally be up on treatment.

Oh! Just write him. He almost always writes back - somno@verizon.net. He'll know, most likely, if there is someone SF way who's well versed.