I just wanted to share with you guys about the severe neuropathy flare that I’ve been experiencing for the last 2 1/2 months. So severe that I have seen three doctors just to get some answers and some relief for my whole body swelling to the point it seeped fluid.
My legs and feet were so hard that they didn’t even pit. My husband and I didn’t think it was fluid at first. It literally felt like I had fifty pound weights attached to each leg. I have to be assisted with everything including washing and eating. This pain is extreme. My hands were the worst. They literally have no feeling in them. Typing this is very painful but I had to share my experience. My hands felt like they have frostbite and they are on fire at the same time. Rubbing them didn’t help. The only relief was to submerge them into scalding hot water. This kept me up all night. Each joint was so painful that I couldn’t even hold a fork or cup. The main problem was trying to get the doctors to understand what I was explaining to them.
So the final diagnosis was both a rheumatoid arthritis and neuropathy flare at the same time. The treatment was to put me back on 10 mg of Prednisone again. I had been weaned off of Prednisone 5 weeks before after have taken it for 20 years for my Chronic Sarcoidosis. I was also prescribed Baclofen, which is a muscle relaxer for the severe spasms that started with the flare.
The swelling has receded some and my mobility is very strained because of the trauma to my body. The doctors have all stated that is all they can do because my body is too sick. This all to say, please keep me in your prayers.
Marilyn’s Fight For Life Sarcoidosis Advocate/Warrior