Tired

[Leelee49]

Well, it’s 5.45am here in sunny Sheffield, and I’ve been awake all night pacing back and forth, my legs are hurting like crazy, and all I can do is cry. I’ve massaged them, thumped them, put gel and magnesium spray on them, and nothing is helping, looks like another call to my gp on Monday, I cannot go on like this, there is only so much a person can take. Sorry for moaning again but as you all know, this can get seriously bad.

[Usasufferingattorney]

My RSL is hereditary and my whole family suffers. My sister has been taking repinoral for years and the augmentation is so bad she can't sit still past noon and is in bed by 7:30 as she is so tired from the medication. My job would not accommodate that as I sit all day so I have been suffering and avoiding the meds but I finally couldn't take it and I got gabapentin. It doesn't relieve my symptoms, just makes me tired so I end up like tonight walking around like a zombie at 3:30 am because my RSL is so bad my legs are jumping off the bed. The only thing that I ever tried that worked with no side effects was marijuana while visiting states where it is legal. Doesn't take much and medical grade shouldn't get you stoned or leave you groggy in the morning, it just gives immediate relief from the symptoms. Unfortunately it is illegal in my state and I don't want the stigma of a medical use card, so I continue to suffer.

[Madlegs1 in reply to Usasufferingattorney]

Unfortunately,opiates are the only real relief on a long term basis ,without bad side effects.

At doses under 30mg per day, these may be taken long term, as long as you are not from an addictive personality or history or associated within your family etc.

Again, unfortunately,opiates are getting a bad press because of misuse by medical professionals and junkies.

It's a bit like banning cars altogether because a minority kill themselves by speeding

There is a paper by Buchfurer et al on the long term use of opiates for relief of rls, specifically aimed at the treating professionals.

Otherwise, check any possible triggers and get ferritin level checked. Some people are getting dramatic results from going Vegan or elimination diets.

Good luck.

[beady3]

I am with you I am back on Tues god knows what I will come away with but I am looking forward to going because I think she is going to work a miracle for me , will let you know ,will you do the same x

[Leelee49 in reply to beady3]

All the best, I do hope you get your miracle, we could all do with 1. I just need a doctor who kind of understands and wants to help, they are hard to find. Will keep you informed, thankyou x

[BoldMove]

I'm also a walker. Usually 30 minutes eases me. Then I take 1/2 ice pack (has a jell inside that freezes) I put it in a pillow case and that helps a lot. Sometimes it helps for the rest of the night. I have a large electric massager and sometimes it helps, sometimes not. I take all the natural assists like magnesium. I also learned to use some of the night walks to do light chores, hang things up, put away dishes and I use amber bulbs which makes it seem like firelight to avoid waking up the brain too much. By doing several chores when I'[m forced to be awake, I can have extra time to catnap. Instead of the usual 7/8 hours normal people spend in be I have 9 to 91/2 scheduled though I'm up walking for about 4 to 5 hours out of it. This way I can cope with the daytime activities.

[Hidden]

I remember several months of watching the sun come up without having gone to bed yet. My favorite time of the night would be hearing the first trains (at 5:45am) pull in and out of the nearby train station. This was the highlight of my nights because it meant that my husband would be getting up soon, the sun would be getting up soon, and I would get a real chance at getting some sleep.

This syndrome is more torture than any human being should ever have to deal with, and your quote "there's only so much a person can take" really resonated with me. At one of my therapy sessions in 2016 the therapist told me that the body gets the sleep it needs -- that the body will not let you go without sleep. My reaction: "well...my body seems to have forgotten about that".

Please know that we can all empathize with you in a huge way.

Thinking of you and hoping you get relief soon!

Jessica

[Palamino]

Hi I have also tried everything going had to come off ropinerole because of augmentation. Now on gabapenton and pramiprexole working at the moment but like everything it doesn't last

[Hidden]

Remind me what you've tried and what you're now taking if anything. I take lots of night time hot baths, try to wake up enough to do some jobs or puzzles or knit or play the piano which works like some sort of 'off' switch for a while and avoid sugar like the plague if I can.

I also take 30mg codeine some time during the night at a time of my choosing when i can't stand it any more and try to get some sleep if possible say from 6 or 7 am or around lunch time.

[Eryl]

Did you eat or drink anything during all that time?

[Hidden]

Hi there, can I just say I have cut out biscuits since wanting to lose weight for my daughter's wedding in August and I am sooo much better. What also helps is to know my triggers and so I really need to watch what I am eating. With me it is grapes (and raisins and balsamic vinegar), strawberries, appels, banana's, peaches, a lot of processed food and margarine. Also no more wine, coffee and tea. I now love my turmeric tea. or drink redbush, which is caffeine-free. I am on the Neupropatch and take extra magnesium and B12. Most nights I am OK. However, I did have a glass of white wine last night and ended up pacing the floor. Taking 2 co-dydramol helped me to get back to sleep. It is a dreadful condition, so thinking of you. Good luck to you all and God bless.

[Graham3196]

Have you not had any relief by trying elimination of all food triggers? I am on a FODMAP diet with no lactose, caffiene, alcohol or gluten. It works most nights.

Graham

[Leelee49]

Well, went back to the doctors, yet another 1 I haven’t seen before, sooo pissed off, she didn’t listen to what I was saying, basically said because the advice I was given wasn’t from medical professionals then it isn’t worth listening to. Won’t give me sleeping tablets, told me to take 2 100mg pregabalin in a morning and 2 at night, and also low dose co codamol 2, 4 x day. Tearing my hair out here, in tears and desperate.

[LotteM in reply to Leelee49]

Well, she was wrong. Although most of us are not medical professionals, we are well able to relay information from medical professionals ( researchers and clinical practitioners) specialized in RLS. And, we have our own many years of specialized experience. Who is she to judge without knowing the facts? I am SO angry on your behalf. But, what now for you? I don’t know and I am really sorry for that.

[LotteM in reply to LotteM]

Maybe you can write Dr Buchfuhrer? See the email option on his site rlshelp.org.

[Leelee49 in reply to LotteM]

Thankyou lotte, I think I will, I might also change gp surgery’s, because they all seem to be very ignorant to the needs of rls patients.

[Retren]

it passes my comprehension howasininethe attitude to patient from their physicians can be They seem to think they are the Almighty.a little research would benefit them and their patients.I would be inclined to try and find another practice which can offer some relief.if one has not endured this dreadful scourge one simply should not hand down unhelpful treatment.I have found many foods trigger off the condition.but it is a drop in the bucket so to speak as to any relief which is lasting.Thank goodness there are far sighted physicians who are attempting to find a cure.A great deal of research is going on. and hopefully some time a cure will be developed. In the meantime opiates seem to be the answer at present for many.