Kidney disease and RSL: Lately I’ve been... - Vasculitis UK

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Kidney disease and RSL

Lilatillar3333
Lilatillar3333

Lately I’ve been experiencing really bad RSL to the point I can miss 2-3 days of sleep. I live in Florida and the medical care outside of Tampa is horrid. There are so many drug addicted abusing the system coupled with the overwhelming amount of older folks that I think the doctors here are just exhausted and go with the status quo. The only thing they advised I do is take 800 milligrams of vitamin E. It’s not working!! Because of my kidney failure and dialysis I’m limited to some of what I can take and how much. However I recently tried a lidocaine back patch on my leg and BINGO I have success. I’ll ask the doctors tomorrow to make sure it’s safe to use.

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Dear Lilatillar3333,

I was on Haemodialysis, for four years, and any drugs that were required, Iron to name one, were simply 'added' whilst I dialysed. Can you not, just talk, to your Doctors/Consultants, about this possibility. As regards Vitamins, we were all Prescribed a Multi-Vitamin, specifically designed for Dialysis Patents. I can't unfortunately remember than name, of it, now. I am assuming that you HAVE got a Doctor, that you can 'Talk' to- I Do understand, just how, Pressurised these Doctors are but YOU are different- you have a genuine Medical Condition. I am sending you my Prayers Lilatillar3333, an 'odd' name that- well to an Englishman anyway.

Take care

AndrewT

Yes I am getting iron because I’m already in the make each dialysis treatment. I also have been taking vitamin E as directed by my nephrologist which I’m told takes a couple of weeks/months to start working. The only thing I found to help so far was the lidocaine patch. I got a number for a neurologist so I’m hoping to make an appointment as well

Hi Lilatillar,

I am in the US; My diagnosis has never been clear as to vasculitis, but one thing that I have had my whole life is an extremely severe scoliosis of the thoracic and lumbar spine. The pain is a moving target. Lidocaine Patches are wonderful! My family doctor prescribes 5% patches in a box of 30 with refills. You can cut them to fit wherever you need them.

They do solve a lot of problems.

They are available over the counter at 4%. They are an answer to a lot of problems.

But it is terrible what is happening regarding pain medication in the US for people with serious pain issues. I am allergic to NSAIDS causing serious blistering as well as causing gasrtitis, serious enough to require 2 emergency room visits.

There has been enough push back by chronic pain patient and some doctors that the FDA is revisiting the issue with a patient group to attend a hearing in September. I am not optimistic that things will return to how they were in the past.

But on a positive note, lidocaine does help. Good luck.

PS. They are completely safe. The prescribing information is not to use more than 3 full patches at a time; not to exceed 12 hours. So it is 12 hours on and 12 hours off. And they are expensive ; but to me they are worth it.

Hi if RSL is restless legs, I take .5 mg of Clonazepam (Klonopin) at bedtime and it’s helping me. I am blessed! I received a kidney on June 22, 2018. I’m really not feeling much better yet. I’m still in stage 3 kidney failure, but at least I am machine free. Sending healing prayers to you!

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