Reply To: Advice wanted
Hi I am Rose and I have Rheumatoid Arthritis, Osteo Arthritis and Opelna Arthritis for the past 14years. I was diagnosed with Gillian Barrs Syndrome about 2 years ago. I have monthly infusions for my RA. I have loads of pills which I take. I am also taking strong medication for PAIN. I have a good Rheumatoid Specialist who is very good. I have a lot of pain and my one leg from the knee down is dead and now it has started on my other foot. In fairness I must tell you that I have had two major back operations and a screw in my right hip. My right leg has become shorter and smaller than the left leg and my foot is smaller than the other which makes it difficult for shoes. I cannot wear a heel as my ankles are not strong. I can’t hold a big mug of coffee as it will fall straight through my fingers. I can’t make a fist in both hands due to my arthritis. When I complain about pain and things get worse or flare up my specialist says that he will talk to my Nureo as they work together and know each other very well. I like my Neuro Specialist who takes no nonsense which I like. I have full blood tests every month. But I think I will have to go back for more fluid drawn from my spine again to see how my GBS is doing? For my GBS I have had Polygam and dialysis Is there any other way to test again. I am so very very tired of hospitals. I have a port in my chest where the infusions are connected because my veins started to collapse. Its my second one. It has to be renewed every 2 to 3 years. Is there any one out there that can give me some advise, any advise. I am at my wits end. I get irritated very quickly and my temper is not that great either. I feel ashamed and I use a frame at home when I need it on a bad day but my balance is not good at all. When I go to the shops once a week I use a walker to get me around. When I get home I am so tired I fall asleep and I have hardly done nothing. My family are not really there for me for support. My husband has a short fuse and does not understand anything. He says I complain too much. TV is my life. Looks like I am not having a good day either as I am complaining again but better to you. Please can some one give me advise or any good ideas. Please remember my hands are buckle and bent. I can’t hold things as my fingers are not strong and I am only 62 years old. I feel helpless!!! I am on the group for RA as well. So I do chat there but I need to know about my GBS. What is going to happen to me. Its all quite scarey for me because I don’t know which parts belong to what or where. Very confused. Pleasse help!