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Bechets Disease

Cheryl Louise - posted on 02/26/2012 ( 2 moms have responded )

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Hi, im a mum of 4, i am 33 yrs old and after 3 yrs of tests was finally diagnosed with an illness named bechets disease. Originally i was tested for RA, Lupus, Sarcoidosis etc...... eventually i found a dermatologist that was able to come up with a diagnosis. my symptoms are joint and muscle pain, mainly legs, hands and lower back, ulcerations in the mouth, on the skin and in the genital areas, (can sometimes be mistaken for a sexually transmitted illness), it can also cause CNS problems, eye problems, gut problems. it is basically an auto-immune disease that travels through the blood vessels and causes ulcerations and inflammation in many perts of the body. I see that some of you are not completely satisfied with your diagnosis, i suggest maybe asking your Dr to check it out, although it is very rare and extremley hard to diagnose as there is not a sinlge test that can be done to diagnose this illness. Medication for this illness, so far, has been a high dose of cholchicine, (given for gout) which caused me servere stomach problems, i am now being tried on an immuno-suppressant steriod, with the view that it will be change to something with the same effects but without the steriod in the future. this illness is extremely difficult to live with as i am comstantly in some kind of pain and taken pain killers causes me stomach problems, i also suffer with IBS and acid reflux as well as a Vit D and Calcium deficiency. not sure if there is any1 else out there that may feel the same way as me. i find that i have nobody to talk to about it as nobody really understands it. i try to carry on with my eveyday life as best i can without complaining but it is sooo difficult. i am also a full time university student studying psychology and counselling.xxx

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Nicol Miller - posted on 08/28/2012

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I'm a RN and this has been very diffcult for me and I to have been diagnosed with Bechets disease three years ago. I' ve currently dont take any meds unless I feel, what I call a flare up, coming. Then and only then I take a steroid which seems to help with the ulcerations. I have recently been having increase muscle pain with alot of lower back pain. I feel I have been I'm a hyperchondriac and relieved to hear from other people diagnosed with this problem. Please any information would be appreciated.

Holly - posted on 03/03/2012

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Hello .. I am new to this forum. I am 36 and just diagnosed with fibro. Having a hard time w/ my kids b/c I am so fatigued w/ joint pain, body tingling, hard time sleeping. I have a 7 month old who does not yet sleep more than 4 hours at a time and needs a lot of care, and a 3 year old. My mom has had to take the baby for a bit so I can hopefully get it together enough to care for him w/o such horrible fatigue. I am reading a book I found on line called The Lupus Recovery Diet. It is a diet for people with any autoimmune disorder. The author has a video on her site and talks about how she overcame lupus. It is inspiring and has given me some hope, whereas before I found her I was so depressed all I was doing was crying and feeling like a victim. There are many testimonials in the first portion of the book of people who have beaten fibro, RA, etc., thru diet and nutrition. I can relate to your experience ... you start to feel like Debbie Downer b/c all you can do is think about your problems and people get sick of hearing them. I am going to really get on the plant based diet thing and work on trying to be active even tho I am tired. I think we need to heal our systems from the inside. Staying positive is difficult, but know you are not alone. We are all in this together! Feel free to email me any time you are having a hard day. I understand. Best of luck!

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