Completely exhausted. I am slowly cutting out pramipexole, by half a tablet every 2 to 3 weeks.
I am exhausted, particularly in the mornings. Afternoons are a bit better.
Touchwood I seem to sleep, I’m not passing the house in the middle of the night with restless legs. Okay this in itself is a bonus!
Anyone else out there have been through this? Is this tiredness normal and will it improve?
I love this forum
It's great that you are slowly weaning yourself off the pramipexole. I have given you advice before on when to start gabapentin and how to take it, but if you want I can give it to you again.
Thank you Sue. I have kept that. What I want to do, silly or not, is to see how I am without any tablets whatsoever. I am looking into iron infusions, probably privately as the doctor might consider them
well, it is just great that you are sleeping but be prepared-this may not last as you taper down.
i wonder if you are waking more than you realize, which would cause the fatigue?I used an opioid to get off of the DA's completely and from there tried to see what natural solutions would work. it is trial and error. i had to resort to kratom, ultimately, and I am still struggling every night.
I would not do the iron infusion until you are done with the DA's. I wish I had waited myself.
Everyone is different but most can't get off the DA's without an opioid or THC or kratom. then gabapentin, horizant, or iron/magnesium might work.
Take Sue's advice on the gabapentin, if you decide to try it, as you need to start that weeks ahead.
Hang in-one step at a time!
I have been taking Sinemet and Mirapex for years now and was totally having augmentation. After resisting for more than two years I finally switched to a new neurologist and he convinced me to start taking Methadone so that I could wean off of the other two drugs, which he said are terrible treatment modalities for RLS. I started out with 5mg of Methadone every night for 2 weeks and then stopped the Sinemet tablet in the morning for 2 weeks. I then cut out the nighttime Sinemet for 2 weeks. I then stopped the morning dose of Mirapex and starting last night I have stopped the evening dose of Mirapex. I have had a few mild break thru episodes so I've increased my Gabapentin. I have been taking one 300mg Gabapentin every morning and night also, so if I feel a bit edgy in the evening I just take one or two more Gabapentin and until tonight I have tolerated the transition well. My neurologist said if 5mg of Methadone does not control my RLS he can increase the dosage and possible take one in the morning and one at night.
I am sleeping better most nights and taking less baths to get through the night. Since I use a BPAP machine and have sleep apnea, being able to stay in bed longer and on my machine is a plus for my lung specialist. I almost died from Covid Christmas Day in 2020 and added him to my list of specialists who work to keep me alive.
I did look into iron infusions but my iron levels are just not consistently low enough to merit taking that route.
I am just so excited to eliminate these two drugs from my daily diet and I have had no side effects from the Methadone. I am tired often during the day but I had that prior to this change in support meds. I can nod off most any time of the day - in the car (as a passenger), on the sofa, laying in bed, sitting at the computer, watching TV, etc.
My sympathies to everyone with RLS who has suffered the same or many even worse symptoms and the frustrations that go with them.
What was y our ferritin?
I had it checked in April and it was 122, so no worries there. I am currently seeing a hematologist who specializes in blood disorders (mainly due to high and low blood work results that might affect my liver and/or kidneys) and he did some extensive blood work two weeks ago looking at proteins on the outer edges of cells, etc. so I'm sure if there is yet one more thing wrong with me he will uncover it. I will tell you that I fought switching to Methadone for more than two years and I am now so glad I made that decision. As of last night I no longer am taking any Sinemet or Mirapex and, although it has not been perfect, I am getting more sleep than I was before and am keeping myself awake most of the day without having to constantly walk or do busy work to stay awake. I do have lots of episodes when I could easily nod off or fall completely asleep while sitting in the car, at the computer, while laying down watching TV, etc. but it is still so much better than it was previously.
That's great - I know it is hard coming off those DAs but I am sure you are glad you finally did it. The gabapentin you take in the morning will can certainly lead to tiredness during the day. If you still have problems at night, you could increase the gabapentin you take then as 300 mg is a very low dose.
I have done the same. Off Pramipexole for 4 months now. Sleeping is a luxury and yes, am pacing through the kitchen most nights. I was hoping to get by without meds, too. No such luck. Will have to wait until January till my neurologist appointment. Quality of life is very poor. Not even going on holiday now as I am super tired the next day. Hope and pray someone will find a cure and great medications for this awful, torturous disease! 🙏
Thanks for taking the time to reply good luck
Honey-you must order some kratom (and also try hirsuta) asap. Do not try to survive like this! We can all relate, especially me, because I am trying not to go back to opioids after getting off the DA's.
Kratom is not a perfect solution but it will stop the rls within MINUTES and allow you to SLEEP.
Order some red bali kratom powder to use until you see the doctor (and good luck with THAT), and go on that holiday and have some FUN.
Ps-did you talk to Joolsg about getting in to her doctors and not waiting so long?!
PS-I posted all this to you before when you asked for help and I don't think you checked the rest of your responses from the forum. Others weighed in on how you could order the kratom, etc.
Read all of your answers and don't suffer like this...
Great idea to try iron infusions as your next step and not immediately start taking gabapentin. Gabapentin is a BAD idea, especially if you are trying to reduce your tiredness. I tried it, and it gave me extreme daytime sleepiness in addition to dizziness and bumping into walls. That is some scary s***!! Plus, if your aim is to get off of all meds/tablets, then don't follow SueJohnson's advice. I would talk to your doctor about getting those iron infusions. There are lots of people on here who get control over their RLS by just getting their iron up. You can do this!!
Thanks for taking the time to reply
I am in the same place as you, except with Requip. I kept cutting the dose in half and am down to 1/8 of a one mg tablet. The only effect I’ve had so far is waking up at 3-4 am but I’ve managed to get back to sleep with a gabapentin. Can’t wait till I’m off completely.
Have had rls for years and am currently on pregabalin, having weaned myself from ropinirole. This might sound a bit too simple a reminder but remember that one of the best energy drinks is water. I am surprised how much better I feel after having a large glass of water first thing in the morning. Every little thing helps.
That’s such great advice. It’s such a simple thing to do but one I constantly forget
Free from RLS for one night
RESTLESS LEGS SYNDROME 
Fighting Exhaustion with RL
Magnesium Citrate - Nearly Completely Clears RLS Symptoms for us
