Sarcoidosis Support Group

Hi, Donna
I have been having this problem all week. Feels like something is crawling on me but, nothing is there.
I am also having issues with my hands. They hurt so bad.....no swelling.

Apart from the swelling and red bumps, my initial problem was PAIN - pain in the ankles and wrists in particular. Also a complete lack of energy. I also understand the lack of connection between fluid retention and diuretics. But I have no answers - still looking!

Thank you ladies I appreciate your input and help.
Donna

I get the pain in my hands and ankles

People with Sarcoidosis often develop Fibro Myalgia and neuropothies that can lead to the feelings he is experiencing. I have a great deal of pain from time to time in my arms and legs I am told it is related nueropothy. It started as a creepy crawly feel on the skin and eventualy advanced to pain.
There are medications for treating Fibro Myalgia that may be helpfull to him if it gets worse but i doubt most doctors would subscribe them without some tests.
Lyrica has worked for my Dad's diabetic nueropothy and is reported to work well with Fibro Myalgia, I have yet to try it so can't say for sure if it would help sarcoid related nueropothy.

Good advice. Thanks Hawk. David also has diabetes and it is starting to bother his feet sometimes. It'll be worth mentioning to the doctor at his next visit. Thank you.
Donna

My swelling is very severe in my hands and arms,
Doctors have diagnosed it as lympedema. Does anyone else have this problem and if so how do you treat it? I tried the massage and wrapping therapy. Also, wrapping at home and wearing daily compression sleeves but the swelling continues to grow--especially if I am active. Sweeping, mopping, writing, picking up laundry baskets..etc.

Mindy

Hi Donna,
I have this creeping, crawling, pins,needle feel like they are coming out of my skin, I have it my hands,feet,legsand fingers Dr,says it is nerve ending.
Betty

Hi Donna,
I have this creeping, crawling, pins,needle feel like they are coming out of my skin, I have it my hands,feet,legsand fingers Dr,says it is nerve ending.
Betty

This is more a ?, I was wanting just this exact info about the pain in hands and feet ect. I have had sarcoid for 12 yrs, was treated for four months and was told that because it was a sudden on set that it would clear up on its own. Was told to get a chest x-ray once a year and to have my eyes ck once a year. No Dr has ever given me any other info and since then I have always had the same issues. Pain in my leg off and on and I get tired, as of late I have been getting a lot of pain on the sides of my legs, in my bones at the knees. I just feel like the Dr's don't know much and won't do much for me.