RLS BAD

[Macram321]

In need of major help concerning my rls.Its driving me insane. I just joined today and thought well I'm not the only one. Really going crazy here. I can't stand it.

[Jelbea]

Hello Macram, you have come to the right place for help. There is so much to learn about this horrible condition. Many on this forum are much more knowledgeable than I and will help you. You need to tell us more about your journey through this-like what medications you have taken, how long you have it, etc. Many of the current drugs prescribed seem great for a time and then can really make your RLS much worse. While you are waiting for others to pick up your post please contact us with more info. Hang on in there - it does get better.

[Macram321 in reply to Jelbea]

Evening Jelbea. Well, long story short, I have cirossis and kidney failure. On list for transplants. All because I drank myself to almost death. Been sober for 14 months now. Huge wake up. The past year has been a extreme rollercoaster

Doctors have given me requip. Xanax and now muscle relaxer. I've tried Hylands restful legs. Oh yeah, I also get my gut drained once a week. Parasenthesis. That sucks to. Can t sit through dialysis because of the rls. I feel trapped. So I cut my session to get the hell out of there. I only get relief when standing and walking.

[Hidden in reply to Macram321]

That makes things clearer.

You are really in the hands of the docs I'm afraid.

There are a couple of things you could discuss with them about your RLS.

The Requip you're taking is possibly not that appropriate for you. Requip is prescribed for RLS, however it is probably better for "primary RLS" which, if you have it, you would have had before all this. I'm guessing you have "secondary RLS" as a result of your problems. In which case, a "gabapentinoid" might be better for you rather than Requip. Requip also is metabolised by the liver and that really doesn't help your liver failure. Gabapentinoids however are not metabolised by the liver.

Also because of your condition, low BP and possibly poor microcirculation, you may have some peripheral neuropathy, possibly "small fibre neuropathy" which can also cause RLS. A gabapentinoid will also help with that.

If you were prescribed the Xifaxin for your RLS, it is an antibiotic usually prescribed for intestinal bacterial infection and/or irritable bowel syndrome. If you don't have these, as diagnosed by a breath test, then Xifaxin doesn't seem to be helpful for your RLS.

I hope that within the vitamins you're taking there are B vitamins and vitamin B12, Deficiency in B vitamins is a consequence of an alcohol problem and can contribute to RLS.

Xanax is OK, but Clonazepam is more commonly used for RLS.

Otherwise, your electrolytes are probably disturbed because of your kidney failure, especially potassium which has an effect on RLS. If it's too high, dialysis will bring it down, but LOW potassium is more of a factor in RLS so I hope they are monitoring this. RLS is caused by kidney failure and is common with dialysis.

I'm not a doctor and it's not as if you're an otherwise healthy person with RLS, I think RLS is another consequence of your ill health. I can't really suggest any significant solution.

As you must realise, you cannot survive without dialysis so some solution must be found for you to be able to bear it. I really don't know, possibly sedation?

I do wonder how you are coping with this psychologically. I do hope you are getting some counselling at least. If not I suggest you request referral to a talking therapist or even pay for one privately if necessary. This obviously won't affect your physical condition but it may relieve some of the distress it's causing you.

You might also be helped by mindfulness CBT a more intense therapy, again you might have to pay for this. There are however self help books and online information about mindfulness you can access.

As you say you are lucky to be alive, and it may be upsetting for you that I write this but it might be a good idea to find a kidney failure charity or support group that can help you deal with your situation.

Upsetting as it might be, as I advise people I deal with who have "!ife !imiting" cancer, it might be a good idea for you to "put things in order" in case the worst happens. If you wish, I can offer more information on this

[Hidden]

Hi, no you're not the only one, there's lots of us.

Tell us your story, as Jelbea suggests and someone will get back to you.

It helps to give as much detail as possible. How long you've had RLS, who diagnosed you, what tests did they do, your medications (all of them, not just for RLS), past and present, how long you've taken them, doses, your symptoms, where do they affect you, when do they affect you, have you got any other medical conditions, can you sleep, what are your symptoms like - describe them, as much as you can.

[Macram321 in reply to Hidden]

Mainly on a lot of vitamins. Folic acid. B vit. Midadrine. Always had good BP until this all started. Lactose. Xifaxin. The doctors at UPMC call me a miracle. I was literally on my death bed Sep. 6th, 2018. They were ready to call Hospice. Said I had 3 weeks if that. My family is a HUGE support.

[Hidden in reply to Macram321]

Sorry to hear that, but what about your RLS?

You don't appear to be on anything for RLS, unless the Xifaxin was intended to help. Have you received a RLS diagnosis?

What caused your near critical illness?

[buffpoint]

Hello my RLS friend, I have had RLS for many years and the only thing that gives relief is "SIFROL". It is issued with a prescription and I find it really good. I have one in the middle of the day, and 2 at night. I hope that helps.

[Anon897373]

Hey there! One of the first threads I stumbled on a few months ago when I joined was about Kratom. I did a lot of research since it’s controversial, but in the end it seemed much less harmful then the prescriptions that are being used. I drink 1 level tablespoon in water every night and sleep like a baby. Personally, that’s all I need, but it works different with everyone. I could go on and on and am happy to answer any questions, but bottom line is, this is the first time in years I’ve felt normal. There are no side effects and I haven’t had to increase my dose. It’s working the same 3-4 months later as it did day 1. Good luck and I hope you find something soon!

[Twigee in reply to Anon897373]

I totally agree with you. I have suffered from RLS for 20 years now, and Kratom is the only thing that I have found to be helpful! It’s VERY obvious when I haven’t taken Kratom before bed, my arms and legs will not settle no matter what. 15 minutes after taking Kratom (I use the same dose as you do - 1 tablespoon) I sleep like a baby, not even a hint of RLS. Kratom is god sent

[ctgafford in reply to Twigee]

Which Keaton do you use? I see that there is green, red and white. Any particular brand that you have found better than another?

[Twigee in reply to ctgafford]

I have read that “Red for Bed” is a good rule of thumb. I use Red Borneo for my night time routine, but they suggest alternating between strains to avoid tolerance issues I take 1 level tablespoon right before bed. I hope this helps

[Casscass1]

Sorry to hear. I suggest iron supplements as well and eating as cleanly as you can. It has helped me, but I also use the neupro patch which has worked wonders. Good luck.

[dklohrey]

Have had RLS for about 30 years. The Requip was a life saver for me but the body adjusts to any medication over time and it is just not as effective as it once was. I accidently stumbled on something lately that has worked extremely well for me and that is compression socks. According to my doctors I do not have a circulation problem but there is something about the socks that greatly reduces the RLS sensation during the day so that I can sit for any length of time with little or no symptoms. They are only to be worn during the day but I have found that they have led to less RLS symptoms at night as well.

[ctgafford in reply to dklohrey]

Good to know. I may try that. I use 2 weighted blankets on my legs at night which has been my life saver. Can’t sleep without that pressure.

[txserenity]

That’s how i used to feel, my heart goes out to you- little sleep and very poor quality of life- night and day- only the left side of my body. Had doctor baffled. Suffered with the first few years thinking I was losing my mind.

Went through several medications and for the last 10 years or so, it’s been the Neupro patch. Occasional breakthroughs that are handled quickly. So for me it’s been the patch and identifying the medications that aggravate such as Benadryl, statins, and milk thistle. Keep going-it will get better...

[Wanman4]

Hello, I too have servere RLS , along with PLMD. My Doctors and I have tried all the traditional drugs for treating RLS. None of them worked for me, until we started the low dose Oxycodone 10 mg evening, 10 pm and 4 am. We have also addressed inflammation and have successfully used magnesium supplements to assist in controlling the symptoms. Here is a copy of the study, take a copy to your Doctor and hope they will really try to help you.

mayoclinicproceedings.org/a...

[Tamaroy]

My OLD stated whilst I was ptegnant, didn't have a clue what it was then. I hate to tell you this but 42 yrs on and I am still suffering.

As you have just had your baby try taking an iron supplement straight away with a multivitamin that contains magnesium, B6 and B12 this will give a little help and if you are breast feeding should not harm babbie, but check with Pharmacist first. Then I am afraid 😨it is possible you will have for a long time so become resigned to the fact that it is now a condition that you can only try and control.

You might end up going to Doc as I did for Post natal depression, this was due in my case to lack of natural sleep, I was not depressed, just knackered.I

Good luck.