Oh how I wish I could go to sleep but burni... - PBC Foundation
Oh how I wish I could go to sleep but burning leg muscles painful knee ankle and feet bones restless legs won't let me help
Hi Oh how I sympathize with you!! I suffered from all these problems since last year, along with pins and needles and headaches at night. I couldnt sleep and for about 3 months I only got 2-3 hrs a night. I went to my GP and first of I was put on Amitriptyline which can help with these problems and things settled a little before getting bad again. My GP then sent me to see a neurologist (because of the associated headaches), he prescribed Trazodone. We have had to tinker a bit with the dose but eventually it is all sorted, I take 75mg a night and get a full nights sleep (7/8 hrs), and RLS is a thing of the past! I believe some people on here have been prescribed a "parkinsons Drug", Im sure someone will post.
So, there is treatment for this, you need to discuss with your GP.
Take Care
I suffer from restless legs and some nights I don't sleep well. Don't think it is related to my AIH/PBC overlap syndrome as my sister does not have AIH/PBC but has restless legs! Maybe connected to autoimmune conditions though as we both have underactive thyroids! X however my calf muscles can be very painful! X
I was prescribed Neurontin. It has really helped my legs to settle down making sleep so much better. I was only sleeping 2 to 3 hours, now I sleep 5 or 6 hours. If I take Hydrozine with it at night, I can sleep 7 to 8 hours. The Neurontin has helped with the restless leg, the burning, the itching and the pain. Hope you find the one that helps you. It is a miserable feeling to go through. If I forget to take my medicine, I can tell because the symptoms return. Good luck to you. hope this helps.
Hi, My heart went out to you when I saw this. I suffer terribly with this but the good news is that there is help available. I am new to the forum and have not posted before. I have read many of the other members' questions and answers with interest and have longed to see if there was someone else who may understand what this is like. I was referred to a sleep disorder specialist and a neurologist by my PBC consultant to investigate the symptoms you describe. I was to the point that it was uncomfortable to sit down because of the soreness in the back of my thighs as they touched the chair. It was a chore to watch even an hour's tv with my family. My arms and legs were restless and there was a constant burning sensation, particularly in my thigh muscles.
Firstly I was prescribed medication and patches for restless leg syndrome (they were from a group of medicines used to treat Parkinsons), but these had little effect. I had a muscle biopsy but, although the results showed some abnormality, they were inconclusive. I was then prescribed Gabapentin (which is another name for Neurotin as already mentioned by another member) and this is helping tremendously. At first I took one 200mg tablet at about 9 p.m. and a couple of co-codamol before bedtime and this made sure I had a good night's sleep. I built up to 3 x 200 mg a day and following my recent follow up appt with the neurologist, I am now taking 4 x 200mg daily.
I usually sleep like a log, much to the amusement of my family!! The sensations are still there, but this this really helps to 'keep a lid' on them. I really hope this might help x
Thankyou so much for. Your concern no one knows the pain and dreadful feelings until they've been there I go to see a neurologist in January just hope I can put up with it until then as my GP is useless x
It's awful to think you have to put up with this over the Christmas period until January! Could your GP not look into this and agree to give you some medication to help? It really does make a difference.
I also wanted to correct the dosage I stated. I'm now up to 4 x 300mg. I take these one at a time spread out throughout the day.
Good Luck x
