Here I go...

[debbluebird]

I spoke too soon. Going on 6 am and still awake. Arms

[ViewsAskew]

I finally got some sleep around 8 AM until around noon - four hours WOW! Lol. To be happy over 4 hours of sleep is just wrong....

[debbluebird]

Terrific !!

[ViewsAskew]

Well, spoke too soon. I slept an hour in the evening - fell asleep on the couch after dinner. Then a relatively quiet night in terms of symptoms, but I didn't try to sleep, either. So, I thought it might be OK when I tried to go to sleep around 10 AM. Woke at 11:15 in a deep sleep, fighting the movements. I've often said that I DO get RLS/WED in my sleep, and it's worse now. The sensations start bothering me during sleep and I squirm and move for awhile before I finally truly awaken. It's like when you are sleeping and your become nauseous - you keep going back to sleep each time you become slightly awake until finally your body makes you WAKE UP!

I tried sleeping a little later and got another hour but am giving up now. I know it's only day 13...maybe I'm rushing it. I wish I knew how long the opioid withdrawal would create the creepy arm sensations and possibly add to increased leg sensations, too. So, back to the opioid/drug forums to see what I can find.

Here is a quote that seems to represent many people's experience,

"Someone may certainly get away with bad withdrawal symptoms only lasting 1-2 weeks, but that appears to be somewhat rare. I can tell you after having just gotten off of methadone myself, that the worst symptoms lasted almost a month and after 5 weeks the restless legs and cramps finally disappeared. My experience seems to be more similar to others than just 1 to 2 weeks. Methadone withdrawal is wicked and you are one of the lucky ones if you get away with just a week or two."

So - I guess I really can't count on knowing anything for awhile. And that means I have to trust that I will not augment (scary!) by taking increased doses of pramipexole. I took a total of .375mg yesterday and only slept a bit. It's such a hard drug to use for this because it takes so long to work. The gabapentin doesn't help the sensations at all (up to 400 mg at this point), though still makes me very sleepy. I'm hesitant to increase it just because it's never really helped me, but it is an option. The only drugs that would likely help a lot are other opioids (and I really do not want to do that) or carbidopa/levadopa, and after my one time experience using that, I am not going to try. I know I'm not augmented now and my ferritin is much higher, but the 35-40 hours of intense PLMW and RLS/WED that I experienced taking it is too memorable to get past. No MM in my state at this time, so that is not an option, either.

That leaves me with more of the same for awhile.

Oh, if anyone else reads this in the future, the kratom is not helping the sensations, nor the PLMs, as far as I can tell. It DOES help with the opioid withdrawal symptoms - headache and weird body sensations. Highly recommend it for that alone, but not sure anyone would get much in terms of RLS/WED relief if symptoms are severe.

[ViewsAskew]

Update about the kratom. I realized last night that I've been sticking with 2 grams - it was keeping any withdrawal issues at bay, so I didn't think to increase it. When I read one of Holland's posts, I realized that I could easily go to 4 or 6 grams to see what would happen. I also chose to deal with mild symptoms in the afternoon/early evening instead of using some pramipexole then so that I'd have more of a dose to throw at it when I tried to sleep. Last, I did the same with the gabapentin.

I split .125 mg pramipexole between dinner time (who knows what time my body thought it was - I'd only slept 2 hours in the last 35-40 hours) and late evening. Then, about an 75 minutes before I planned to try to go to sleep, I took .25 mg. A half hour before, I took 300 mg gabapentin and 6 mg of kratom. I went to sleep around 2 AM - no symptoms.

I didn't need to get up until around 9:30 to 10 AM - close to 8 hours! I did have sensations at that time I couldn't deal with by acrobatics in bed, so I finally made myself get up. I was still very, very, very groggy and tired. I did eventually wake up some.

No idea how much of this was what - I clearly change three things. And, it's day 14, so some of it may be that the worst of the withdrawal is over. Or just change . I didn't take more kratom until around 3 PM - a daytime dose of green mixed with some white for some energy. I can slightly feel the weird arm sensations, but they are very, very mild and just started (it's 6 PM now).

[debbluebird]

Sounds good, at least better. I'm constantly walking, pacing, on my bike, moving my legs. Got to be burning calories.
I decided a couple of days ago to just take one Mirapex .125 mg instead of two tabs. My thinking was that since this drug has shortens my hours of sleep, maybe it would be better if I went to one tab, especially since my legs are calm. So far it is working. I did experience leg jerks about 11 am, they woke me up. Will see how tonight goes. It was funny, last night my arm was just burning and hurting. Then that stopped, back to creepy crawlies.
This is an experience I don't want to repeat.

[ViewsAskew]

yeah, I am not enamored of it, either, lol. The arm burning and hurting is just so strange. Mine is really high and goes up into my shoulder/arm pit area. I try to rotate it and swing it to help, but without the kratom, I think I'd never sleep. Well, unlikely, but it feels that way!

My legs are calmer than they have been. I am very curious to see what happens by next week.

[ViewsAskew]

OK - not perfect, but what regarding RLS treatment is????

I accidentally cut back on the kratom (mismeasured my pre-made jelled goop) and took only 200 mg gabapentin. Was wide awake. Then the arm started. I watched Foyle's War from about 3 AM to 5:30 to 6 AM. Finally slept until around 11. Not bad. The sensations in my legs awakened me, but were pretty mild.

I've noticed that has changed a LOT. Through withdrawal, the sensations were so intense and strong. I couldn't even think about staying asleep or even relaxed - in my bleary state I knew I had to make myself be awake ASAP, not just walking, but alert. It was the only way to get them manageable. This seems to have stopped. I feel them and awaken, but they are milder, quieter. Looks like 14-16 days is a critical juncture for me, at least.

For what it's worth, I'm making a strange concoction that reminds me of something off a dim sum cart that would be called dessert, lol. I mix an equal number of grams orange flavored psylium and kratom, sprinkle with the juice of a lemon and then add juice. The juice/lemon is twice the grams of the psylium and kratom together. I mix and let it set up. It forms a jelled substance that I can cut into squares. I sometimes weigh it, but usually just cut it. If I want 6 gram servings, for example, I use 24 grams of kratom then cut it into 4 equal pieces. I keep it in the fridge and then munch on it as needed. I don't mind it

[Sojourner]

For what it's worth, I'm making a strange concoction that reminds me of something off a dim sum cart that would be called dessert, lol. I mix an equal number of grams orange flavored psylium and kratom, sprinkle with the juice of a lemon and then add juice. The juice/lemon is twice the grams of the psylium and kratom together. I mix and let it set up. It forms a jelled substance that I can cut into squares. I sometimes weigh it, but usually just cut it. If I want 6 gram servings, for example, I use 24 grams of kratom then cut it into 4 equal pieces. I keep it in the fridge and then munch on it as needed. I don't mind it

Nice work, Chef!

[badnights]

nice recipe. It's a keeper, I Think

[ViewsAskew]

nice recipe. It's a keeper, I Think

If you use a strong, tasty juice, it sort of overrides the kratom taste. Yum .

[ViewsAskew]

Last night was OK, not great. Still have the odd sensations in my arm/shoulder though they are milder. Everyone's results with kratom are different - many people here take just 1 gram (about a 1/2 teaspoon) but unless I take at least 6, it's not enough to keep me asleep and help the movements. But, I've been able to just take .25 mg pramipexole total using the 6 grams of kratom as well as 3oo gabapentin.

I was talking to Beth and realized that I really must have another iron infusion and soon. I was able to cut my meds by 45% for several weeks after the last infusion. This one might get me to the level I need and keep me there for long enough to really test how far I can cut meds and get back to a more normal life.

[debbluebird]

Good !

[Rustsmith]

It is really great to see that the two of you are both doing so much better this week. I don't know that I would be able to do what you have done, but fear that I may have to some day. Hopefully that will be MANY years from now.

[debbluebird]

I feel like it has got to get better. It's been about three weeks. I'd like to see how this all plays out, and what meds will work, after the withdrawal is over.