Saying hello!

[cravenmonket]

Hi everyone, thank you for reading my introduction!

I am around a year into symptoms which I think might be RLS. I go to bed each night, sleep reasonably well for a few hours, then wake up after midnight with the urge to wiggle my toes, cycle my legs, point and flex my feet over and over again to get some relief from the tense, twitchy, tight feeling in my legs. Ultimately I just give up trying to sleep and I get up, walk around, do squats, lie on my back with my legs inverted up the wall, do lunges, etc. Doing this, the symptoms vanish pretty much immediately, but they start up again when I go back to bed. Sleep is patchy, or often impossible until I get fed up and get up to start the day early...

I'm a fit, active 41 year old guy. I was a yoga teacher for years. I practice Ashtanga Yoga several times a week. I have a good diet and no other health problems besides fairly severe anxiety and depression, for which I do therapy but no pharmaceuticals.

I haven't talked to a doctor yet but I am considering it. I take kratom every day for anxiety, and I wondered whether it might have triggered the RLS? This is what scares me - that I did this to myself. Some nights when I really need to go back to sleep, I get up and take some kratom, and it helps a lot for a few hours, but I'm wary of developing higher tolerance to kratom. I haven't tried any other medication except cannabis, which helps me get to sleep but doesn't seem to have any impact on the RLS symptoms.

I fear that my doctor (whom I very rarely visit) will simply dismiss me. Doctors are getting very reluctant to prescribe meds, especially to men my age who might just be seeking drugs. I'm not really sure what to say to my physician if and when I go see her.

Thank you all for reading this far! Looking forward to hearing your stories.

[Rustsmith]

What you described certainly sounds a lot like RLS.

As for the kratom, you can probably dismiss that idea. Many of our members actually use kratom to help relieve their RLS symptoms. If you use our search function, you will finds page after page of discussion about kratom.

For the cannabis, you didn't say, but I am assuming that you are either smoking or vaping it. That provides an immediate impact, but the benefits wear off rather quickly. An edible taked longer to take effect, but will last longer. And as you say, most of us find that it helps with sleep but not the urge to move.

As for your doctor's reaction if you ask for help, that can vary all over the board because the only exposure to RLS that many doctors have had is via the pharmaceutical salesmen that call on them. So their knowledge can be limited, but then again you might be pleasantly surprised. If you doctor is familiar with RLS, she should order blood work to determine your iron levels, particularly your ferritin level. RLS is due to a deficiency of iron in a specific portion of the brain. If your total body iron levels are low, then this portion of the brain is also probably low. In that case, treating with iron might be enough to resolve your problems.

On the other hand, she may simply prescribe one of two meds, pramipexole (aka Mirapex) or ropinerole (aka Requip). These meds usually do a great job of providing relief for a time, but can make things worse in the long run.

As for your fitness level and diet, those probably have no direct relationship to your RLS. I was a competition class runner during the early years of my RLS. I was doing great as a runner, but after a while I quit for fear that my RLS meds would cause me to run afoul of the anti-doping rules.

[stjohnh]

Sounds like RLS to me. Kratom helps the urge-to-move symptom, and if still having sleep problems after controlling urge-to-move, then cannabis usually helps sleep (but not urge-to-move). Kratom is probably safer than the usual meds doctors prescribe for RLS (Requip or Mirapex), assuming you are not taking very large amounts. Most of the RLS patients taking Kratom use between 1 and 4 grams a day.

[cravenmonket]

Thank you so much for your kind responses!

I don't remember having symptoms of RLS before I started using kratom for anxiety. I honestly wish I had never started using kratom - it eliminated my anxiety immediately, and gave me a euphoric lift, so obviously I was drawn to it, but after a while I realised I was addicted to it, and also started developing the restless leg issue. That's why I wondered if I had caused this to happen to me.

Has anyone explored psilocybin as a solution for this?

[Polar Bear]

I had to google this and came up with:
Psilocybin is a naturally occurring psychedelic prodrug compound produced by more than 200 species of mushrooms, collectively known as psilocybin mushrooms.
I'm not aware of anyone here using it.
If you enter in the Search Box at the top right of this page you will find 2 links, one is your own, and one other.

[Rustsmith]

Interesting that you should ask because last night my wife asked me if I should try it. During the elections last month, the city of Denver had a ballot question of whether "Magic mushrooms" should be made legal. It didn't pass. This is important since the city was one of the first to legalize marijuana so many were hoping that mushrooms might follow suit.

[ViewsAskew]

Can you reduce the kratom slowly and see what happens? I know you don't want the anxiety to come back - we often are in tough spots when it comes to these decisions. I sometimes have wished I hadn't ever taken medication for the PLMS. Yet, without it, when I look back, I honestly don't know how I could have had ANY quality of life at all. I was in stage 1 and 2 sleep all night long, never getting to any 3-5 stage sleep. I felt horrible. I couldn't work, think, or be effective in any way. While that medication did send me down a particularly dark path, it also led me to a place where I can be productive.

[cravenmonket]

I could taper the kratom but it wouldn't be much fun! Whatever anyone says about it, I kind of wish I'd never started. It's not an opioid, but it might as well be - it produces very similar effects for me: euphoria, relaxation, confidence and wellbeing, and moderate analgesia. It reminded me at first of tramadol or percocet. Now the effects are too mild to feel, so I am basically on a maintenance dose to keep the withdrawal at bay, while helping my anxiety and depressive symptoms. Kratom withdrawal is no picnic - I've tried it. It's like having the 'flu with chronic insomnia.

I mentioned the psilocybin because the few times I've taken it for depression/anxiety, I have experienced a powerful sense of physical peace and relaxation. Far more effective than any opioid I've ever taken. Total physical calm. No sensation in my legs. Stillness and lightness at the same time. It feels wonderful if your "normal" is agitation, nervousness, and physical hypersensitivity.

[badnights]

I have split off some posts into a new topic called "Saying hello! - driven to distraction", in order to reduce confusion.

[badnights]

@cravenmonket
I don't know if kratom can cause WED/RLS. It would surprise me, since so many people on this board use it to relieve their symptoms, and it has opioid-like properties, and opioids are well known to relieve WED/RLS. Nevertheless, anything is possible.

Are there any other substances you began to use at the same time? Anti-histamines? Coffee? anything?

My personal feeling is that your RLS/WED is caused by something else - perhaps even the same thing that is elevating your anxiety - and that you are treating both the anxiety and the WED/RLS with kratom. I suspect that you can fall asleep because there is still kratom in your system, and you are woken up by symptoms when the kratom wears off.

I understand your reluctance to broach this subject with your doctor. When you do, it's important to tell her how this is affecting your life. Tell her how much sleep you're getting, how fractured it is, how you get up and do squats and lunges, and very importantly, how you feel in the morning. You never wake up feeling refreshed, your performance at work is not up to snuff, you can't make decisions quickly or you make poor ones - - whatever is true of your situation. Hearing that, she will have to dig into the causes and try to help. She won't dismiss you. If she does, then she didn't get the message, so try again. Say "I think I didn't explain this properly. It is ruining my life, and I need your help to fix it". And describe it again.

That might work, I think. But your next step is to arm yourself with information by reading up on WED/RLS. You need to know that dopamine agonists should not be the first line of attack, yet most doctors still think they are. The dopamine agonist dose should not be increased beyond 0.25 mg for pramipexole/Mirapex and 1 mg for ropinirole/Requip. Neither medication should be given to you without checking your iron status, including the protein called ferritin; and if your ferritin is under 100, you should start oral iron supplements (with vitamin C to maximize absorption). (If your ferritin is under 40 or 50, you are probably a prime candidate for iron infusions. ) Taking DAs usually helps initially but then causes a dramatic worsening, which many doctors attribute to "natural progression" but specialists and experienced doctors recognize as the dreaded augmentation, a worsening of the disease caused by the medication that was supposed to help it.

A good approach to your doctor is to learn all this yourself, including downloading a copy of the Foundation's Guide to Medical Professionals - - see the link in my signature block; it's the third red line on the page that opens == = ,highlighting the parts that are relevant to you. Then bring that printed copy with highlights to your appointment and tell her "I've been reading up on this, and I'd like your opinion on what I've learned".....