I have a question (it will be at the bottom ) and i have a post . Sorry for the length . Please bare with me .
First I’m new to this group but I’m thankful that I found it . My name is Denise Tibbs . I’m 25, married , and have 2 kids . I’m the manager of a vet clinic and I am the boss and founder of my own dog training business . I get plenty of activity and am always on the move. ( though exercise is suppose to help RLS symptoms )
My RLS is terrible in my legs, almost every night but it evens worse in my arms lately . My arms will just twitch and cramp and shake without my control .the tingly crawling sensation feels like nails on a chalk board and it make me a so irritable. It’s 4am I also have PTSD and anxiety and panic disorder which worsens tremendously without sleep. However; Around 5am every night of RLS , it usually subsides and I’m able to fall asleep. The next day my body hurts . It’s sore, cramping , burning and aching from the RLS all night long. I have a routine . I only have one cup of coffee a day and it’s a small cup I’m caffeine sensitive . I drink plenty of liquids most days . I drink fruit and veggie smoothie drinks and beet root powder ( I find that helps with many things ) I take many supplements. Vitamin d . Magnesium, potassium, iron, and more . I do the RLS hylands melt tablets too. (Im desperate ) gabapentin neurotin did nothing for me . I’m on a dopamine prohibitor and nothing has helped tonight. Currently I have Dysphasia ( due to a auto immune disease) I can’t eat anything that requires a lot of chewing or has to be super soft and covered in a sauce. Like pasta. . Soup. Jello . Ect. A lot of Meat is out of the question . I eat potted meat to try to stop my cravings for real meat. ( it’s hard to get protein and and other nutrients needed to help me )
I have a routine .
When the RLS starts . I toss and turn forever before angrily getting out of bed. I always run a hot bath with epsom sAlt . I Sit in it for an hour just stretching and moving around. I’ll take more vitamins . ( I do some of them at night and morning )
I stretch and rub my legs and when I’m dry I even use icy hot ( that helps take the edge off )
May be TMI. But Sometimes Masturbation really helps for at least 15 mins .
As for the bath, the massage , the stretching and exercise they only works during that time as soon as you stop them the RLS is back .
Tonight I’ve taken 2mg of Xanax and I’m still wide awake .
So my last question. Do you think just one beer , would really make it worse ? Just one ? Usually I’ll drink one right before bed and I’ll fall asleep immediately. On purpose to try to surpass the RLS it does work until around 2am before the RLS starts. I’m so tired and just want to sleep . I’m really wanting to just down it . Get tired quickly . Fall asleep and hopefully not wake up until at least 7am . Since it already almost 4am.
I see a lot of post about beer being a trigger. (Sometimes it is for me )
But has anyone ever had just one drink and did it cause your RLS to worsen ?
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D_Tibbs211
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Oh my goodness I feel you!!! I have severe RLS as well. Since age 14. That’s when I first recall the pure agony. As I grew older pregnancies were always so crazy bad with the RLS. As I have grown even older, I too started having it in my arms and even felt like my right hip sometimes. There’s also something calledPLMD “periodic limb movement disorder”. Similar but one can cause the other and one can’t, I don’t remember full details but I could not get get the Dr I was a nurse for, any other physicians or even a neurologist to agree that I had it. Over the years I have had absolutely miserable times. I have tried mirapex , gabapentin, trazadone, those over the counter meds for “leg cramps”... couldn’t get anyone trying to tell me to just go buy those to understand I didn’t have “leg cramps”... RLS is so much more than that! It’s an extreme form of agitation that will drive you crazy... I mean mentally crazy because all you really want to do is just sleep?? It’s a vicious cycle though as the more tired you are, the worse it is, and the worse it is the more tired you are! I have never really been able to sit and watch a movie and I definitely don’t try to go to a theater. I cohld NEVER be expected to drive long distance.I could never even play board games because it was so miserable for me. My family understands though. My sister that’s just 18 months younger than I am also has it but not as bad. We both avoid Benadryl like the plague and I was advised to list all antihistamines as an “intolerance “ not an allergy. I was once given a cough medicine with codeine. I took it and about 15-20 min in I said, whoh... what’s in that? And sure enough it had an antihistamine in it! Benadryl is the devil. So I’m 46 now, I see a sleep dr (I also have Sleep apnea) but he prescribes my Horizant 600 mg, a long acting form of gabapentin, I take at night, mirapex. I take 0.5 twice daily, along with trazadone 75 mg every night. I have discovered it’s the mirapex that I can’t go without, as if I’m having a bad night ( rare most of the time) I always realize I forgot my morning dose. If I do have a bad night I self medicate with another 0.5 of miralax and sometimes even half a normal gabapentin too. I went to a hem/onc dr for a genetic test ( not sure why him but it all came full circle and he was amazing and helped me) but upon taking my history. Looked at some things like my tongue, my hands, and my inner eyelids and said I think you are very anemic. We did labs and he said I might need iron infusions. I was very anemic based on all labs and a couple weeks later I had my first iron transfusion. I had one a week for a month and then monthly totaling 9 months. I ended up being b12 deficient as well due to autoimmune Atrophic gastritis ( My stomach does not absorb iron or b12) B12 shots were added. He also told me to stop taking regular iron and take chewable children’s vitamin like flintstones as they have a different type of iron absorbed differently. RLS is a brain iron defeciency so all of this did help with my RLS symptoms. I have “excessive daytime sleepiness” as well and they say it’s because I’m not compliant with my cpap machine... point is... when I’m sleepy and I fight it I have some RLS symptoms. When I do have it on a rare occasion now, it’s usually miserable but for the most part I’m symptom free. Just sharing my experience! I hope it can help. I do feel for the agony you’re suffering. I’ve been there, took the baths and showers, tried all the meds, saw all the drs and even tried to sleep standing up once because I was so desperate for some, any sleep at all.
Sorry to hear you have so many problems Milescircus. Just to mention one thing. You are taking too much Pramipexole. You are probably suffering from. "augmentation" because of this. In this case your RLS will improve if you stop taking the Pramipexole.
As you know, you can't just suddenly stop it, you have to gradually reduce it. In increments of 44 micrograms or less.
If one beer cured your RLS that would be fine but if you suspect the beer might be making it worse why would you drink the stuff? RLS is horrible A glass of beer is just water with alcohol and flavouring added! Is your coffee decaf?
Why not try to find all the triggers and stop eating or drinking them?
So sorry to hear that you are young yet have bad RLS...Mine is inherited from my mother but nobody else has it in my family. I'm 72 and I know that any alcohol triggers it plus low calorie fizzy drinks....Trying Balneum cream....probably not helping, magnesium, folic acid, slow release iron etc...but never prescribed anything as doctors in UK usually not that interested as it's not life threatening....or is it? The person who discovers a cure should be knighted or something!
I really feel like to those of us who suffer it can absolutely be considered life threatening. If each dr suffered from it they would understand. Since they have absolutely no idea unless they do, they will never understand how being sleep deprived, depressed and desperate can be harmful.
Hi. I, too, am so sorry to hear about your situation. I think if I was in your situation I would try to eliminate all the possible triggers. I acknowledge that you say that having one beer helps you to get some sleep, but, if I'm correct, it's not for long and I wonder about the quality of that sleep. To get to the bottom of the causes of your RLS, I would first eliminate all possible triggers (alcohol, caffeine, food preservatives and additives etc) and try to make sure your sleep routine is as healthy as possible. Things may get worse before they get better, but at least you will have given it a go. All the best.
If it really helps I would say enjoy your beer! I alternate between a strict caloric restriction without any alcohol (to loose some fat) for weeks then getting back to eating and drinking as hell just for fun of it (and pumping iron as hell too in a gym to grow some muscles in that period). Thanks God, I don't have alcoholism genes in me and such routine works for me easily for decades already and doesn't cause any augmentation in my RLS. Everybody is different though. And my RLS is pretty mild (maybe because of my overall more or less healthy lifestyle). Usually 3-6 minutes on a vibro plate machine is enough for me to get back to bed. Also a couple of guys here recently reported a great success using a trigger massager stick (Thera Cane originally). So I ordered a cheap chinese copy of the cane just to try it (people say the only drawback is it's more flexible than the original one).
Firstly welcome to this amazing site. We re always here for each other To help each other.
A good while ago I remember enjoying half a bottle of sweet red wine sometimes on a Friday nights & sometimes Saturday nights & whichever night I drunk it my RLS kicked off pardon the pun
I don't do that anymore I can't afford it I just watch the TV or do some sewing.
I still have the RLS . I use a cream that is suitable for my skin called Balneum Cream & that helps
Gosh we all feel for you and know how awful it is to go without sleep & the awful physical pain & mental anguish it brings! You sound as if you are augmenting on that pramipexole & need to come off that slowly as advised in an earlier post.
I personally wouldn’t touch the beer as it is one of your triggers. It certainly won’t help you in any way. Rather try a painkiller such as Codeine or Tramadol 4 hourly starting BEFORE the RLS kicks in & while you are reducing your pramipexole! Don’t wait for the RLS to build up.
Try not to do vigorous exercise late in the day (am if at all possible). Use your mornings when there is little or no RLS to catch up on quiet relaxing things that you would normally like to do early evening but can’t!
I find I am better off doing either the ironing, cooking ahead, gardening (summer) cleaning, stretching exercise etc late afternoon early evening than sitting. If you do sit, KNIT ( distracts the brain) & sit on a hard chair. Soft comfy sofas are for the morning when you don’t have RLS. The minute it starts get up (or out of bed) DONT let it build up!! Have your Epsom salts bath early evening BEFORE it gets worse. When you go to bed listen to music with earphones (brain distraction)
Your biggest weapon is water!! Drink it all day, at least 4 glasses besides your other hot drinks. It will help your inflamed body as well as the RLS.
These are ways that I cope when its really bad. I have learned the hard way not to ignore the early twitches and letting it build up!
You have other complex needs. Hopefully you can be referred to an understanding neurologist who specialises in movement disorder.
My restless leg syndrome was due to withdrawal from Methadone. I had an addiction to opiate painkillers and the withdrawal caused severe restless leg syndrome so I understand your frustration. It is terrible, just like you said it feels like nails on a chalkboard inside your body and you have to keep getting up out of bed and walking around to lay with 10 minutes relief and laying down sets it off again after another 10. It's a vicious cycle, repeating this over and over all night until eventually you're so over tired you finally fall asleep. I couldn't sleep until the sun started to rise each day then I was in bed all day. I was tried on gabapentin and all it did was make me drowsy but it did nothing for the restless legs. Then my doctor added diazepam into the mix and I would take two 10 mg tablets bedtime. Usually Valium would make someone relax and fall asleep but not me because the restless legs we're so terrible that these meds didn't even begin to help the situation in the slightest. All I can suggest that worked for me was a TENS machine. One of those things where you put sticky patches on your body and they pulse electricity into your muscles making them tingle on low to full on flexing on high level. You just need to find the right setting where they make your leg muscles pulsate your legs but don't turn it up to the point where you cannot fall asleep. It's a machine like the one you see on tv called Dr hos. They are not the cheapest of fixes for the problems but they worked for me and about two months after stopping the methadone I finally did not need the tens anymore. I think this was the best solution because you were not messing around with addictive benzodiazepines and Gabapentin. I wish you all the best in finding some sleep and getting rid of the restless legs. The only other thing that worked for me was to take Tylenol number ones and I would take three at bedtime, this would keep my dopamine levels High Enough that it gave me time to fall asleep flat then you're playing with fire because as everyone knows opiates are very addictive. I wish you the best of luck in finding some cure or a really good Band-Aid and I would recommend borrowing or buying a TENS machine because that seemed to work the best and has the least chance of addiction and you could use it anytime and anywhere when you are home, and if you go travelling you can bring it with you. It's funny because out of everything all the doctors prescribed my girlfriend's mom was the one who came up with the fix. Doctors think they know a lot and don't get me wrong they do, but when it comes to certain things they really don't know the solution.
Wow..I never even thought of using my tens to help with my RLS! Im def going to try it. My doctor just put me on mirapex, she prescribed up to 6 pills a day, I took 1 and was sleeping within 20 minutes. Worked like that for 2 days, then I went to 1.5 a day and I was so wired I was up all night. Went back to 1 and still the same. I have been on Requip for 17 years, same dose, 1mg., anymore and I throw up. I've had RLS for 17 years and I can feel it getting worse all the time. If I drank alcohol Id never get sleep, it makes my legs so much worse.
The gabapentin seems to kick any other drugs in the rear giving it a big boost. One day I'm hoping to get this figured out
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