Chronic Flare-Up

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

Pain, Pain go away…

Pain, Pain go away…

Warning! Just Venting!!!

I listen to everyone talk about their various symptoms and how they are seeking help from doctors here and there. I need help here; in Delaware!
I am seeing a lot of specialist to treat my Sarcoidosis and I really only want to see one. Why is it so hard to have one Sarcoidosis Doctor in my State to treat me? None of my doctors seem to want to communicate with each other except my Rheumatologist who I adore. It’s going on 14 years and I am totally tired of being tired all the time. It seems like I am getting worse rather than getting better. Everything hurts! I don’t want any more pain meds! My hands, even as I am typing this, are swollen, painful and inflamed. When washing my body today, it hurt when the wash rag touched my skin.

Now I am faced with the care of my elderly 85 yr. old mother-in-law and I can’t even care for myself. She has Parkinson’s, but other than that, she gets around better then me. I have the support of my children who all live at home (25, 22 and 13) as well as my husband. Though very understanding of all of this, I feel for them.

Monitoring my numbers, all these meds; tired of it all.

Thanks for letting me vent.Image


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