I had a question for everyone…. My RLS has the restlessness feeling but it also has the electric jolt feeling which is worse and it’s def more aggravating than the urge to move itself
as anyone who I have spoke to knows I am a difficult case and my doctor and I are trying everything.
I have recently been trying to pay attention to my symptoms. it seems the restlessness I used to have isn’t as bad at all it’s the crappy crawling Eletric feelings. I was also tested for neuropathy so I know it’s not that
I just took 4 mg of buprenorphine and all it did was make me loopy. It doesn’t touch my RLS which is mainly the electric shock feeling. So I guess buprenorphine won’t be for me lol. I also tried Kratom a decent amount and it made me a little loopy otherwise nothing. My doctor even wondered if I had RLS at this point or if it’s something else.. it does seem weird that some opiates don’t even touch the symptoms.
the restless feeling when u need to walk around to feel better is one thing but the electric shocks feeling is weird because moving doesn’t really help it.
does anyone have the electric shock feelings worse than actual restlessness?
Has anyone ever taken Buspar for anxiety? It is different than benzos and it is not addicting like benzos because it doesn’t bind to the gaba receptors. Has anyone used it and has it helped at all?
also, can anyone who takes a combination of meds for RLS that works tell me what they I’m just curious 🤨 I apologize for all the questions
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My guess if they are causing her many issues and she is taking both of them, is that she is augmenting. The signs of augmentation are when one have to keep increasing your dose to get relief, or when one's symptoms occur earlier in the day or when they move to other parts of one's body (arms, trunk or face) or when the intensity of one's symptoms worsen. Is this the case with your mother? If so, I can give her some advice.
I think it is sadly. Yesterday she was in a car on a longish journey and was in very bad pain in her legs that seemed to come from nowhere. I said to my Dad that this sounds very much like augmentation unfortunately. Would love any advice you can give, many thanks. She’s also nodding off all the time and sometimes gets confused too - all side effects of the pillsI think . The thing is I’m worried about my Dad going to the GP for fear of being given rubbish advice !
OK - unfortunately it will not be easy for her. Ropinirole and mirapex used to be the first line treatment for RLS which is why so many doctors prescribed it. The first line treatment now is gabapentin which has no danger of augmentation. First off, has she had her ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If she haven't had her ferritin checked, she should ask her doctor for a full iron panel. She should stop taking any iron supplements 48 hours before the test and fast after midnight. She should have her test in the morning when her ferritin is lowest. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 and her transferrin saturation to be between 20 and 45. If her transferrin saturation is OK, then if her ferritin is less than 75 she should take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If she takes magnesium she should take it at least 2 hours apart since it interferes with the absorption of iron. She should take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If she has problems with constipation switch to iron bisglycinate. If her ferritin is between 75 and 100 or if her transferrin saturation is below 20, she probably needs an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise one's ferritin. She should ask for a new blood test after 8 weeks if she has an iron infusion or after 3 months if she takes iron tablets. To come off ropinirole, reduce by .25 mg every 2 weeks or so. She will have increased symptoms. She may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. She will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as she nears the end. But in the long run, she will be glad you came off it. After she is off ropinirole, then she needs to start coming off the mirapex in the same manner reducing by .125 each time. On the gabapentin, beginning dose is usually 300 mg. gabapentin. She should start it 3 weeks before she is off both ropinirole and mirapex, although it won't be fully effective until she is off them for several weeks. After that increase it by 100 mg every couple of days until she finds the dose that works for her. She should take it 1-2 hours before bedtime. If she needs more than 600 mg she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If she takes magnesium she should take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything she and you want to know including about its treatment and refer her doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as hers obviously isn't or s/he would never have prescribed a dopamine agonist at
Sue this is fantastic and I am going to sit down and read it line by line tomorrow. Thank you so much. Can you just tell me one thing - has your quality of life improved by coming off the dopamine agonists ?
Thank you . Just one last thing - did you do all this with the aid of a doctor ? Or by yourself ? We are in th U.K. and I don’t think there are many specialists here, unfortunately.
Electric shock really sounds like nerve issues. I know you have been tested for neuropathy but I suspect that would be general test and I doubt that would pick up specific trapped nerves or local issues. I had nerve issues due to a back problem where my discs impacted on the nerve and for a few years I had a wide variety of weird electric stuff along with normal pain and aches. If you've had issues in the past they can also overexcite your nervous system for a long tim afterwards and it ends up overactive effectively and you feel a lot more than you used to as well as extra random electric feelings, feeling that things are touching your skin, feeling your socks are bunching in your shoes, fizzing, and tingling etc. I was initially sceptical that you could have overexcited nerves and felt it was the medical profession looking for an easy answer while not fixing or finding the "real" the issue but over a few years I came to realise they were probably right and after some careful management of activity and stuff like pregabalin and meditation the overstimulation reduced significantly.
Fuck!!! Excuse my language but why does so many things make RLS worse!!! HonestlyMy RLS is so bad caffeine and stuff like that doesn’t make it any better or worse for example. I was excited about Buspar because it’s not a typical addictive benzo. I’m going to take
It to see if it does anything for better or worse thank you for your response
I use cbd thc gummies for sleep… they do not help the RLS but they doHelp me pass out and I sleep pretty decent too. I never tried the cbd oil cream… what is the name
I also get the electric shock feeling but it sounds like yours is worse and/or more frequent. Mine doesn’t even happen every day. But it’s definitely weird and attention grabbing when it does, so I feel for you. I hope you find something that works to shut it down a bit.
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