Could do with wheelchair can't walk the pai... - PBC Foundation
Could do with wheelchair can't walk the pain is so bad roll on 15th jan see my nuro then had enough pain pain pain that's life I guess xx
Im currently having to use a walking stick and a wheelchair sometimes, hopefully they will find something to help us control the pain, hope you feel better soon
Life should not be like this...
Just to say that I am sorry to hear that you are such pain. I have been driven to taking pain killers the last two days. Knees, back, arms shoulders. Perhaps it is the stress of Christmas that makes things worse and the frustration of not being able to do what we want to do. Made an apple pie this afternoon then had to lie down.
Hey! I was supposed to be supporting you not moaning about myself. Sorry. I really do send you my love and best wishes.
I use a wheelchair if we go out for the day - otherwise I wouldnt get to go as my feet and legs wouldnt cope. I am waiting for steriod injections into ankles hoping that will help. Just been diagnosed with Imflammatory Osteoarthritis so at least they are taking me more seriously now. Just wish there was something for the pain....
Val02-how did you get diagnosed with osteoarthritis. I tested positive for RA in blood tests, but my GP & rheumatologist just say it was a false positive & all the pain is due to PBC.
hi I was diagnosed for Osteoarthritis after a bone scan over a year ago but I dont have the RA antibody. When i went to rheumy in november he changed the diagnosis from osteoarthritis to Imflammatory Osteoarthritis which means the damage is driven by an autoimmune response as opposed to old age, (it was my 50th birthday the day i saw him). He warned me that it could be very aggressive and at long last took my predictament more seriously. I am having some treatment for my bones by intraveneous drip in January, I am seeing an occupational therapist for my hands, still waiting for my treatment for my feet/ankles, said he was reluctant to put me on Arthritis Drugs (same as RA drugs) because he thougth it was contraindicated by me having PBC. Got an appointment with Gastro in the new year and Im going to ask his opinion as to whether it is Ok for me to take or not. As i dont trust the NHS anymore to prescribe as they are always trying to save money during the last year and I know in rheumy treatment it is rationed.
Incidently i started with arthritis the year i was diagnosed with PBC so Im convinced one caused he other. I take tramadol for the pain, I have orthotics for supporting my ankles and I take Trazadone at night for the RLS and limb jerking which defo help me sleep.
Ditto the "hate using a wheelchair".
Thanks Val02. That's good to know. My bone density scan a couple of yrs ago was fine, although so were most things back then!!
For RLS & jerking I've been prescribed iron as it can be caused by anaemia or low ferritin levels. I'm not anaemic, but my ferritin levels were on the low side. I thought it was helping but a few months on I'm not so sure. I've also taken a magnesium supplement for a yr or so for RLS.
I've done some research & there looks to be a particular form of degenerative arthritis that is particular to PBC. My GP is reluctant to refer me back to the rheumatologist. I wasn't very impressed with the rheumatologist the last time as she literally did a 30sec exam of my hands, wrists & knees & then said about the RA antibody false +ive. My GP has said that the medication for all arthritis is very toxic for the liver so she's not sure what I could have anyway.
I take 20mg amitriptyline at night which is supposed to help me sleep & relieve pain but doesn't work anymore either.
I'll have a look at trazadone & see if its worth recommending to my doctor. Thank you!!!! A x
I live on codeine & paracetamol for pain relief.
I have a wheelchair that I use if I go out for any length of time. I hate using it but the funniest thing to do is to watch all the little kids in pushchairs coming towards you-they all stare like "How come that grown-up gets pushed around?"
