RLS Hope

[Dougg]

Greetings, all. This is my first posting to this site, although I have been following it for some time. First, I want to thank everyone who has posted here – and particular thanks to Raffs and others with broad experience who have generously shared their knowledge. Although I wouldn't wish this condition on anybody, it's so validating and comforting to know that I'm not alone in my struggle with RLS.

My brief story: I started getting RLS intermittently in my mid-fifties, and by the time I reached early 60’s, it had become a full-blown and almost round-the-clock problem. Eventually I ended up on 25 milligrams of oxycodone daily, plus the maximum dose of pramipexole and gabapentin. Even with all of that, it was a frustrating existence. My heart goes out to Lonely7 and others. I really hear you and the hellish existence that this condition can cause.

Once I reached the max dose of gabapentin, I started to have disturbing side effects (including losing my physical balance and memory loss), so I started to titrate back down on that. It was then that I discovered what the doctor didn’t tell me when prescribing those meds – that they can be very difficult to get off of once you’re on them. I started with the gabapentin and eventually got off of that, with some difficulty. Then I started titrating back off the pramipexole, and that withdrawal was the worst I’ve ever experienced, including terrible insomnia every time I down-shifted the dose.

Then, I found this forum and read your many helpful posts, including quite a number of kratom recommendations. I found a trustworthy vendor (thanks in part to a recommendation posted here), and wow! What a difference! Within a few hours of my first kratom dose, all of my symptoms were gone. In addition, I was able to drop all of the meds I was taking – including the 25 mg. of oxycodone I had been taking daily for several years – in one day with no withdrawal effects. The transformation for me was, and continues to be, amazing. I got my life back. My wife noticed the difference instantly, as I had become pretty touchy and snippy over the years as a result of the constant RLS tension. I’m extremely grateful for both the recommendation and the availability of this amazing plant.

Of course, kratom isn’t a cure per se, but an effective way of controlling symptoms, and I’m still digging for the ultimate cause of my RLS and how to resolve it. I’ve come to believe that RLS is a symptom of something else amiss, rather than an end-thing in itself, which would help explain why what works for one won’t necessarily work for another, and I appreciate that there are lots of different solution possibilities posted on this forum for people to consider. I’d like to add two more that may be of benefit. First, I’m seeing a Chinese medical doctor for acupuncture for RLS. As you may know, Chinese medicine looks at health and the body very differently from western medicine, and she was able to explain the source of my condition from a Chinese medicine perspective. She commented that my RLS condition is a difficult one to alter, and she warned me that it would likely take a while. But I’m in this for the long-haul, and am hopeful that continued acupuncture treatments will re-balance the imbalance that she suggests is causing my RLS.

The second approach that I’m doing simultaneously is working with a doctor who is a specialist in bioenergetic medicine using electrodermal biofeedback – a methodology based on decades of German research in electrodermal screening. Using sophisticated measuring equipment, the doctor is able to zero in on what is causing the RLS and then prescribe a combination of supplements and homeopathy to bring one’s body back into a healthy state. This approach is little-known in the United States, but I understand that there are thousands of practitioners in Europe (and Germany in particular) and that this approach is widely accepted there. I understand they tried to introduce it in the US years ago, but got a lot of push-back from the medical establishment, so they finally more or less gave up. I have the good fortune of being within visiting distance of a doctor with over 25 years of experience and training in this field; perhaps one of the few left in the US. So, I’m following his protocol as well, and we’ll see how it goes. I’ll keep you posted.

Thanks again to everyone for all of the wonderful support on this site.

[involuntarydancer]

Hi Dougg, thanks for a very interesting post. I and I’m sure many others will await with interest updates on both your treatments.

Incidentally, I can verify what you say about Kratom being an extremely useful treatment for Rls. I am interested to hear that it was helpful in your withdrawal from pramipexole. I wasn’t sure how effective it would be against the severely intensified symptoms experienced while coming off pramipexole. Another bonus I have found is that it is much easier to discontinue Kratom than OxyContin should you want to stop it for a while. There are some mild withdrawals, particularly if your dose is relatively high and you remain on it for a while but nothing nearly so bad as coming off OxyContin and miles easier than pramipexole withdrawal.

[Dougg in reply to involuntarydancer]

Involuntarydancer -

Hi, and thanks for your kind comments above. To elaborate just a bit on my Kratom-pramipexole experience, I was taking four, 0.125 mg tablets of pramipexole each night at my peak usage. I slowly backed down, one tablet at a time, until I was at one tablet per night, supplemented by Oxycodone. I don't think I ever could have gotten down to that point without the Oxycodone to help me through the night. The down-shift from two tablets a night to one was the worst withdrawal/insomnia experience I've ever had, and I was dreading the shift from zero to none. It was at that point that I started the Kratom, and I literally stopped both the 25 mg. of Oxy and the last tablet of pramipexole the first day I started using Kratom, and I didn't feel a thing. I'm not sure what it would have been like if I was down-shifting from a larger dose of pramipexole, but wow was I grateful. And it's nice to know that the withdrawal from Kratom is mild. I'm switching strains regularly to hopefully avoid building up any tolerance.

With all of the press around addictions, it seems ironic that physicians freely prescribe pramipexole for RLS, with its significant withdrawal effects, while Kratom doesn't appear to be pharmaceutically recognized at all, even thought it's more effective and has notably lower withdrawal effects.

[DicCarlson]

Kind of bad press for kratom in the US. en.wikipedia.org/wiki/Mitra...

[Dougg in reply to DicCarlson]

DicCarlson –

Yes, sadly so. Much of the press I’ve read these days around kratom appears to be written from a pro-FDA and pro-DEA point of view. I couldn’t help but notice the DEA’s interesting statement, “We can’t rely upon public opinion and anecdotal evidence. We have to rely upon science.” So if thousands of people report that a particular substance helps them with chronic pain or other conditions, that’s apparently all considered “anecdotal”, which implies it holds no weight. I fear that the only thing that counts as “science” by the FDA and DEA is a multi-million-dollar double-blind study which can only be afforded by large organizations like big pharma companies. And since kratom is a naturally occurring plant that can’t be patented, I doubt such a study will be undertaken any time soon.

The salmonella contamination is unfortunate, but I see that it was traced to a single manufacturer. I remember decades ago when there was a contamination case around the amino acid tryptophan. The wife of a friend was affected, and so he was very closely involved with the case. He pointed out that, despite the fact that everyone knew that the case was caused by the tainting of a single batch by a single manufacturer, the FDA banned tryptophan for ten years. I have been very concerned that the FDA might do the same thing here, using the salmonella incident as an excuse to ban kratom entirely.

It would be wonderful if governments would transform the rush to ban substances into a rush to study them. Like cannabis, it appears that kratom has tremendous potential in the treatment of a variety of conditions, as witnessed in part just by the reports on this forum. Yet governments seem bent on suppressing or banning such things rather than studying them; the history of cannabis being a poster-child example. I just don’t get the idea of making naturally occurring plants “illegal.” Will mother nature obey and stop producing seeds?

I wish that the press around kratom were more balanced, informing people of both potential risks and the benefits of kratom in dealing with chronic pain, RLS, and opiod addictions. Perhaps if enough of us write to our respective government representatives and in other venues where it’s appropriate, we can have an impact.

[Arsenal4ever]

Have been in them for some time but I am finding that I have to increase the dose as it’s not working as well as it used to do and will be asking if I can try something else as sleeping is becoming mor3 and more difficult

[Phogan]

I wonder if kratom is available in Oz. Must Google it. You have given me some hope my new friend.. Thanks

[Phogan in reply to Phogan]

Damn ... it's banned

[Dougg in reply to Phogan]

I'm so sorry, Phogan. Hopefully some of the other options posted on this site can help.

[Spudellen in reply to Phogan]

I have heard of Kratom before on this forum and I really hope it is available in Oz. I am desperate for some hope. Last night was a 5 shower night plus exercises and hot milk. I am at my wits end..although I have had RLS since I was 14, the last 5 years it has been non stop torture but has greatly worsened since a recent total hip replacement. I am trying to get off Targin and have successfully weaned off Madopar. I need help.

[Dougg in reply to Spudellen]

Thinking of you, Spudellen, and hoping that you find relief.

[Spudellen in reply to Dougg]

Thank you Dough. I feel as though I have jet lag most days because of RLS and little sleep.

[Spudellen in reply to Spudellen]

Dougg, sorry about spelling error.

[involuntarydancer in reply to Spudellen]

I don’t think it’s legal in Oz but could you get it posted in from abroad? I get mine posted from Holland even though it’s not legal here. The packages are pretty anonymous (unlike cannabis, there’s no smell) and I’ve never had any problems. I hate having to be so lawless but Kratom has helped to make my life manageable. It got me through some really bad times. I don’t know what I would have done without it.

[Amrob]

Hi Dougg, I realise this post is from a while back but am interested to hear how you went with electrodermal biofeedback?

[Dougg in reply to Amrob]

Hi Amrob.

I continue to be treated for my general health using this method, and both my wife and I seem to have benefited from it. My RLS is still hanging around, so I can't say that I've been successful on that front, although that doesn't negate my sense that electrodermal biofeedback can be very helpful in diagnosing and treating a wide variety of other imbalances and conditions.