Having RLS that lasts all night
I have had RLS for 40 years. I have been on Mirapex for the entire time. As the years have gone by, the symptoms have become worse. I now have it in my upper arms and back. The symbol are now becoming painful. Many times I am up all night. Is there anyone with such advanced case as mine who can offer any information? Might this be related the spine?
Hi everyone, I’m so happy to have found this community. My rls started 20 years ago, but it only happened once in a while, not often at all. But the past month I’ve had it almost every night. And sometimes during the day too. It’s in my legs and arms and I feel fluttering in my chest and breathlessness too. I was anemic so I had 3 doses of iron ivy, thought that would make it better but it made it worse. I’m going crazy. I wish I could cut off my legs and arms!! I live in Turkey, but I’m in New York for the summer. Does anyone know any neurologist in turkey who knows about rls?! I’m feeling very hopeless. The only thing that sometimes helps is cannabis.
My heart goes out to you,
. I would suggest you see a neurologist here, but it can take months to get an appointment in the US. It would be wise though to at least see a doctor about the fluttering in your chest and the breathlessness. Those those symptoms might be related to your RLS, but they might also indicate a cardiac problem or issues with your thyroid. If any of your symptom scare you in any way, please go to the ER and get checked out. I am not familiar with any neurologists in Turkey, but maybe some one in the community will chime in. Keep us updated, if you don't mind. I will be thinking of you. Warm wishes. - Lori (Team Member)
I've also have been cursed for 40yrs with RLS been on Sinimet entire time, started out on half of 150/25 now up to 4 that does and 1 250/50 at night. They say augmentation.
I find that a little hard to believe. If have someone who can prescribe you Sinimet try that.
Does Mirapex work all night?The higher dose along with 4 lower doses over a period of 3 to 4 hrs as I prepare for bed each night. Normally start dosing 9:30ish every hr up to 1am. Then I will take a small dose should I need it at 5, or 6am. That will give me another 4hrs of sleep.
Retired so we normally get up around 10am.
The patient has to be the one in charge of the dose. The Drs should understand and allow and compensate the patient with how much they say they need.
It's one tricky screwed
Up condition that only the sufferers need to control.
Hope this helps someone out there. Mostly Doctor's.Thanks so much for sharing what helps,
. Warmly, Lori (Team Member)
Hi
. You must be exhausted and frustrated. How long has it been since you have been thoroughly re-evaluated by a neurologist? Symptoms of RLS can appear in the arms as well as the legs, but it is not as common. Here is an article from someone who had symptoms in both from a young age: https://restlesslegssyndrome.sleep-disorders.net/living/healthcare-team-diagnosis. Long-term use of Mirapex can also cause involuntary movements, or spasms, in the different parts of the body. You have been on it for far longer than the recommended time. These symptoms could be an effect of long-term use or it might have become less effective for you over time. It is also possible that this is a new health condition altogether. There is really no way to know for certain without seeing a neurologist. Do you have one you can see or can you get a referral from your primary care doctor? Keep us posted if you don't mind. I will be thinking of you. - Lori (Team Member)
