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I wasa diagnosed with Eosiniphilic Fasciitis, a rare auto immune disease, in Oct. of 2008. I've tried several other sites attempting to find others with this, but have had no luck. It would just be so nice to "talk" with someone who has or has had this disease. A friend with another rare disease told me about your site; I'm hoping this will lead to finding someone with EF. Thank you and blessings to all.
Plaquenil Diabetes Lasix Neurontin Prednisone Scleroderma Fibromyalgia Keppra Methotrexate
I was diagnosed with Eosinophilic Fasciitis in 2006 when I was in College. It is nice to finally find someone who I can talk to as well. I have had a good recovery but would love to know what you are still going through and I can share how long it took me to get back to " normal".
wow...can you feel a big hug coming thru this computer and tell that there is a huge smile on face! you are the first person that has ever replied to any searches I've been doing for the past year. It will be 2 years in February since the symptoms began. I have gone thru umpteen changes in the skin on my feet/legs, hands/arms. In early summer I had a sed rate of 121! and the neuropathy has been so debilitating. I still have the claw-like hands and my wrist bones are so swollen and the skin has broken open. I have been taking 400mg of Plaquenil daily along with 3600mg of Neurontin and 2500mg of Keppra a day for the neuropathy. In July I started Prednisone 20mg a day and that has been a big help. I also lost a lot of hair. My doctor said it would be 2-3 years for the symptoms to go away and that I should figure closer to 3. I initially thought I had a form of scleroderma as my legs/arms were hard as rocks. There has been improvement there which is good. It is not fun as you well know but I try to put it into perspectiive. I am upright, breathing, have all my parts, can walk/talk/drive a car! but that doesn't make it hurt any less. Thank you for responding and I look forward to hearing from you and what occurred during your EF years. Blessings to you
Like I mentioned before, I was in Collage and being 23 and having a disease like this was not easy for others to understand. I worked out daily and it took me awhile to realize my hands didn't have the strength to hold the weights. I went to every specialist under the sun and had the pleasure of being the live guinea pig for the Rheumatolgy Med Students. Finally was diagnosed after 8 months of symptoms and started a heavy regimine of Prednisone and Methotrexate. I went to PT to regain movement in my hands because of the claws they had become. Being 6'6" it get uncomforable in cars and other places as it is, you can imagine how difficult it can be with EF. My only lasting affects over the years has been reduced flexiblity in my wrists, fingers, and feet. Unless I show someone, no one would know the difference. I am glad to finally find someone that knows what I went through and hope your end result is similar to mine. It sounds like you had it worse than I did.
my smyptoms began in Feb 2008..legs/feet/arms/hands very swollen; but my concern was that they were red..sunburn red..I was given Lasix to treat the swelliing which helped some..my doc basically ignored everything else..a dermatologist diagnosed me with stasis dermatitis..my legs/arms looked like fish scales..those went away but underneath was what I would learn was called orange peel skin...I used an ocean of lotion believe me..finally 8 months later 2 tests were ordered and from there I went to the rheumatologist who diagnosed me with EF..I started on Plaquenil because I once had a bad time with Prednisone. did you have skin problems? my legs and feet are awful right now..the skin is raw and open and I am good for the Band-Aid company. the skin on my arms is now pretty clear..no more scales or lumps all over...but can't shower as the water hitting my legs keeps me in agony for a few days..so sponge baths it is..my upper arms are much more pliable now and not like stiff boards..the high doses of Neurontin and Keppra are keeping the neuropathy at bay...I do take Darvocet most every day, especially when I'm going out of the apartment and going to be doing a lot of walking...I now use a walker when going out (with wheels and a seat) as my balance is not good...I have no feeling from my toes to my knees but hopefully that will decrease with time...2 years ago I took the occasional Darvocet for my fibromyalgia but now, well, here I am taking all these meds. but I am looking forward to 2010 and hopefully the end of this crap..the scary thing is that on websites I have gone to it says that the symptoms can come back! no known cause, no prevention..see those words on every site..I have not yet had PT and right now I'm not planning on it. But it's frustrating to be always dropping things...I got rid of all my glass glasses as I was dropping them...plastic is good! sometimes I think I need one of those sippy cups like little kids use! but as I said before I'm doing ok...I do see changes and improvements and that keeps me going...am so glad you replied to my post...oh, what kinds of things did you do in PT and do you feel it was worth it? thanks again...Blessings to you
Like most who have been to PT, it is not fun. They did a lot with my hands because of the severe tightening of the tendons. My hand strength was very weak also so there was a lot of strengthening exercises. I went 3 days a week for a couple of months and responded well to the treatments. They were painfull at times because they stretch your hands to the point you think the tendons will snap but the end result far outweighs the temporary agony. I no longer have any of the claw like features but still have some limited hand flexibility. I have gotten to a point of where I can get by with what I have with no one knowing any different. I have read too about the possibility of it coming back but I feel better now knowing what to look for. It took me so long to realize something was wrong that had I known sooner, the symptoms and progression would have been far less. Just know that things will get better and you will be stronger for having gone through it.
I'm sorry that I did not push my doctor more...and I knew better..i worked in a medical clinic for years and before that was a Pharmacy Tech...but I would show the doc my arms/legs every time I went in and he would just say take more Lasix and that it was probably related to my diabetes. I even went to an Internist specializing in Endochronology and she did nothing...no one, no one even felt my arms or legs to see how hard they were! no labs were ordered and no specialist recommended...i should have taken control but didn't...a PA where I was being seen finally ordered 2 tests, an ANA and SED rate and it was the high sed rate that led me to the Rheumatologist and to the diagnosis...and you're right, if it does come back we at least know what it is and how to deal with it..I wonder if anyone has documented the rate of return of this stuff and that's what I call it, stuff, among other names on really bad days, of course!! the Prednisone has caused weight gain but I'll put up with it to be able to function...your words at the end of your last post give me hope...thank you again for posting...blessings to you
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