Are burning legs a sympton of PBC along wit... - PBC Foundation
Are burning legs a sympton of PBC along with bad pain.in legs? Also little sleep at night but awful nightmares when I do manage a few hours.
I was diagnosed with PBC in Jan 2011. I was diagnosed following a referral by my GP to a rheumatologist and then to a gastroenterologist. When I explained to my GP the type of pain I was experiencing she looked at me as if I had 3 heads.
Whether they are symptoms I would not like to say for sure but it is interesting to hear that you have also referred to burning legs....I may be wrong but I have interperated this to mean you are experiencing a burning sensation not as in hot/warm legs....Please forgive me if I have missunderstood.
The pain I get feels as if my actual muscles are burning, my legs hurt when I sit down, they hurt if I stand up, doesn't matter what I do, I can't ease the pain. The only way I can really describe what its like is when you have had a really hard work out on an exercise bike and you get that lactic acid burn in your muscles because you haven't cooled down properly afterwards. The strange thing about it though is that the pain in my legs (arms too) is not always the same, sometimes its the burning sensation and other times its aching in the bones.
Fortunately the pain is under control most of the time with the use of regular pain killers. I do experience what I call 'episodes' when the pain is unbearable and can take a few days to settle down to a manageable level again.
I do not sleep very well either. I can't remember the last time I slept through the night. I can't say I have nightmares as such but they are very vivid and I can remember them when I wake up.
Unfortunately our condition is quite complex and with cross over conditions its not always easy to identify symptoms purely down to PBC only.
Best wishes
I feel as if my legs have had boiling water poured over them with thousands of pins being stuck in them. Rather like when I had scarlet fever as a child. Yet they are cool to touch. I have to keep them on top of the duvet. Have got an appointment to see a rheumatologist on 22nd Nov. after a 16 month wait. I hope that he will be understanding of all my wierd symptons. I do get relief when I can get a walk but have not felt well enough for a few days to have one. The tiredness is scary. Have got M.E. and Sjogrens as well. It is difficult to know what causes what! Thanks for your help
Ellanvannin
Burning legs are a symptom of pernicious anemia , as well as poor sleep ( i have just found out i am antibody positive for this condition and am having further tests) so its worthwhile getting your autoimmune blood tests done again to inc ANA and ENA, and also B12 levels. As you probably know you are more at risk of another autoimmune condition if you already have one.
I am having repeat blood tests tomorrow as the ones taken 2 weeks ago showed globulin increased and PV sl up. whatever that means. Already am ANA positive and AMA positive. Perhaps the readings have gone up .I try not to worry but it is not easy. Have a sore throat tonight so |I do not suppose that will help results. Seeing a rheumatologist on 22nd Nov for the 1st time since being diagnosed in 2005. will mention what you have said. Many thanks for answering
Ellanvannin
Ive had burning legs for a few of years just as you have described, in fact it was one of the first symptoms I developed along with a painful shoulder. I also get restless leg symdrome, cramp and terrible muscle pain. Been going to rheumy for 4 years without much success, as they cant find any antibodies except for AMA and ANA. My inflammatory markers are raised but not excessively. My feet became so bad this year I eventually got sent for a scan. It came back with torn spring tendons and degeneration of the ankle - still no diagnosis for why? But give them another year and they may have figured it out!
Be very interested if your rheumy can give you an explanation or even a theory.
Good Luck
It is reassuring to know other people have the same symptons.
I really must make the most of this appointment. I tend to get nervous and waste them but this time I am going to stand my ground and insist they take me seriously after all I have waited 16 months to get it.
Thanks
Make sure you take a list of questions to ask so that you don't forget and write the answers down as well in order to make the most of the appointment. Good luck. x
I also make some notes with my questions the day before, so at the doctor I take (if remember :D) and read it. Nerves can matter only in finding my notes! The legs are terrible. like if there was an iron shoe, which has moving nails inside. I've got electormagnetic therapy, nothing changed. when I get up from chair or bed = bad, hardly keeping on, and now for some months also my hips. Yes, terrifying, but there are better and worse days, and going with it, as we read from an extremly nice post, is a good method. We can think of the end, but much better to accept what the given moment can offer, if pain, then think of relief. Yoga, meditation, breathing exercises are very helpful, even if from youtube. Try to smile as much as possible. Don't forget, here we are to help!
I am paying for Lymph drainage at the moment. Expensive but I am willing to try anything. What I thought was a roll of fat turns out to be fluid. I believe that this is called ascites ( can't spell this) All my Lymph nodes were blocked so it has taken longer to feel any benefit. I have to do breathing exercises for the Lymph drainage. Breathing from the pit of my stomach, and not from the chest, which I find hard to do. I also find it hard to drink lots of water,
It is a good job I do not feel up to going out at night as most of my pension goes on the Lymph drainage.
Not only am I burning up at night but the sweat pours of me. I am well over the menopause so it is not that.
Good idea about writing down the answers.
Watched an old episode of the Rev Last night and had a really good laugh.
It is so good to have made so many new friends through this forum. It can be in a very lonely place when you have an illness like this.. When I joined the PBC group they only had 6 members from the isle of Man and 3 of them didn't want to be named.
Thanks for contacting me.
Ellanvannin
