New to site Brief history Looking for advice

[fairlesstj]

Hello I am a 45 y.o. male I have been suffering from rls for some years now.
I have it in both arms and legs. I was in a extremely bad spot in my life from the rls until I pulled my achilles tendon and the doctor prescribed me hydrocodone.
It was like a miracle. Changed my life almost immediatly. I have only seen my doctor once about the rls he prescribed me clonazepam. It did not work only made me drowsy and same symptoms which was very agravating. for the past couple of years i have been taking hydrocodone that i buy from people i know. With my job i am required to travel and i am worried about traveling with medication not prescribed. I am worried about what doctor to see I dont think all doctors understand exactly how debilitating this can be. There is no way I can continue to due my job and live my life without my medication. with no meds i lay down at 8pm and dont actually sleep until nearly daylight 4 or 5 hot baths flip my pillow 300 times it seems in and out of bed . I get up for work at 5:30 am so you can see my problem. I have tried other meds such as ropinirole which my sister gets for her rls and gabapentin combining both seemed to give me some relief.. Idont like the fact that i take hydrocodone every night but I like the rls significantly less if you know what I mean.. Anyway I was hoping to get advice from others who suffer from severe rls.

Thanks Tim

[ViewsAskew]

Hi Tim,

Many of us found out that opioids work in a similar way - a surgery, and accident. It's well known that they work, but doctors are reluctant to use them because of the stigma. It's been shown, in a study, that we tend to have fewer problems with addiction than the non-WED population, but most doctors do not know that.

Most of us find that we have to educate our doctors and be willing to go through a period of trying other medications. You know that clonazepam doesn't work - and so should have your doctor, but that's also all too typical. It's not been suggested to be prescribed in 10-15 years - studies show it works for very few people. And talk about addicting! Too bad they don't know that, either.

The pamphlet by the WED Foundation on treating WED is very helpful. There is also an article written by Dr M Buchfuhrer that is wonderful to use with a doctor. Check out the links in all the moderators signatures to find these documents and others. If you have a GP, take it to him/her and say that you understand this is the protocol for treating WED these day and that you'd like to start with the first meds suggested. You may find that some of them work as well (such as the drugs you've tried of your sister's). If so, great! If not, cycle through them until you get to opioids, which you eventually will.

To take ropinerole or pramipexole, you MUST get your doctor to test your serum ferritin level and other blood levels. If your serum ferritin is below 100, you should NOT take any of this class of drugs until you increase it. It greatly increases your chance of making the symptoms worse - called augmentation.

There are several types of antiseizure drugs - gabapentin, pregabalin, and gabapentin encarbil are the most used. Some people LOVE these and if the serum ferritin is below 100, this would be the place to start. While these work well for many, there are some who find they do little or nothing. And, as with all drugs, there are side effects that you may or may not experience. Gabapentil encarbil is the most recently developed and some doctors say they're having good results. A lot of us who write here regularly haven't had luck with it - that's why we write here all the time - we don't have luck with much. Lots of people come here for a short period, find out about something, and never come back. Here's hoping you're in that category.

Once your ferritin is high enough (given it's not - it's not for many of us) and you've tried both of these classes and either side effects bothered you or they didn't resolve symptoms, it's on to opioids or a combination.

The good thing is that you know opioids work, so if you cannot tolerate any of the others or if they don't resolve it for you, you have a fall-back.

If you want to get really good and educated about this disease, I highly recommend "The Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen, and Hening. Some of us have even bought a second copy for our doctors. The second edition came out this summer, so make sure you get it and not the one published in 2008.

[Polar Bear]

Just to add that the book mentioned by Views is available on Amazon.
I had the first edition which someone 'borrowed'... and the second edition cost me around £19 (pounds sterling)
This book is excellent, easy to read, mine is full of Post-Its and notes in margins. You can mark anything relevant to show your doctor.

[fairlesstj]

Thanks guys for your advice I am glad I decided to join this site all ready.

[jul2873]

Tim, you may not want to try this, but it's been wonderful for me. There's a plant called Kratom, which apparently goes to the same receptors as morphine. You can check on Wiki. Essentially, it works as a mild opioid. It's called Kratom and is available on the Internet, even on Amazon, as it's completely legal. I take about one gram at a time, mixed in orange juice, and a total of 4 or 5 grams gets me through a night very well. I'm just very afraid of going down the dopamine agonist road.

Best to you,
Mary

[fairlesstj]

thanks mary I will try it
Could u give me more info
I found alot of different kinds and forms and places

[ViewsAskew]

As a moderator, I feel I need to remind everyone that kratom is unregulated. As such, batch to batch the amount of drug in it can be different. I am NOT saying not to use it - just exercise caution. We trust when we take a regulated pharma drug that it is what it is and that the active component is the same pill to pill, manufacturer to manufacturer. When we take anything unregulated, even vitamins, we can't count on that. Just be careful and remember that this is a bit different.

[jul2873]

Hi fairlesstj,

Unfortunately, most of the info out there is from people who are using kratom to get high, although occasionally I see something from someone using it for pain. There is another board member here who also uses it, and who I correspond with occasionally. Here is what she said in the last note I got from her:

"I just wanted to send a quick note to see how you are going and whether you noticed if you were building up any tolerance to the powder?
It really has made the most amazing difference and so far (six months or so) has been incredibly effective .. I am just really hoping it will continue!

I am still using the "Borneo Red Vein" powder from Bikhuk which I have found to be so much more effective than the capsules."

I haven't found the red vein powders to be as effective for me. I use a green vein one or, lately, Maeng Da. I have been getting it on Amazon but just checked and the supplier I used is no longer carried. However, if you search for "maeng da" other suppliers will come up. You can't search for "kratom" as Amazon doesn't let the suppliers use that, apparently. The supplier I use is Velvet Soul http://velvetsoulkratom.com/ and I don't know why Amazon doesn't seem to be carrying them anymore. But I like them very much and go right to their website now. My guess is so many people use it to try to get high (which is hard, as apparently you have to take a lot!) that Amazon doesn't want to be associated with it.

At this point, I've used it daily for over eight months with no problem at all, except for constipation, which is common with any opioid and easily managed. I understand that it isn't regulated, but, as far as I've been able to find out, the only deaths associated with it were when the person was taking other drugs along with it. I don't think there are any reported deaths from just kratom--which is more than you can say for any other opioid. For one thing, it doesn't depress breathing, and since I have asthma, this is a major plus.

I do understand Ann's reservations about it, but I was at the point where I didn't think I had any good choices--as I don't think the dopamine drugs are a good choice, and that's what my doctor wanted me to take. I don't sleep straight through the night with kratom, but at my age (almost 70) I probably wouldn't anyway. But twice in the night RLS symptoms wake me up. I get up, take a little more kratom and walk around for a few minutes, and then am able to go back to sleep. So no big deal, really.

I'm happy to answer any other questions. So far, I don't seem to be building any tolerance; so far, it's really working great.

[ViewsAskew]

Not reservations - just adding to the conversation about something that not everyone would think about it. No matter what we take, we have to look at it from all sides. . We each have different values about what's important. We have to know all the pieces of information so we can be consistent with those values.

[fairlesstj]

will be try kratom soon and will report how it works for me.

[jul2873]

Just a note: I've switched to red leaf Borneo, and like it better than the maeng da, as it doesn't cause as much constipation, and also helps with sleep. Good luck, Tim.

Mary