I have had I.C. for 2 years now and was a prisoner in my home and in my bed since laying down seemed to hurt less. I tried all the treatments out there after going to 8 differrent Dr. I now have had the Interstim implanted for 6 months now and it took away my bad pelvic pain and constant frequency. I still have to watch what I eat since some foods irritate my bladder wall. I have been on Elmiron for 8 months now and it seems to be helping but I am losing my hair. It was not too bad at first but now it is really getting thin. I just try and take one day at a time with this awful disease. There needs to be more research and awareness regarding this I.C.
I have spinal stenosis of the lumbar, sacral, coccyx and cervical among MANY other disabling conditions. I am wheelchair bound, due in part to the stenosis, but also to RA, OA, MS, etc.
I have Empty Sella Syndrome. fibromyalgia, arthritis, chronic pain. Am interested in a community of people with similar physical symptoms to learn about possible ways of coping.
Want to connect with others who are suffering. Am disgusted with medical community and others not understanding my situation at all. Need friends. i am happily married, 59 year old. Live in country in Finger Lakes area of N.Y. state.
Laura Ferguson is the founder of a spina bifida support group that she is shutting down. She’s asked all members of that group to join her here so that’s what I’m doing. I was born with SB so that makes me interested in it LOL! And I want to connect with others that live with it. Thanks~Angie~
I have problems with bladder pressure and frequency, could
be intersticial cystitis, doctors are unsure. At times, I feel exetremely weak. I want to connect with others who have similar problems and find out what has helped them.
Hi,my name is Rhonda.I am 38 and I have been happily married to Duane for over 20 yrs.I have 4 sons - Duane 20,Kevin 19,Andrew 17 & Cody 16.
I have been dx’ed with Fibromyalgia and OA and I am in the process of getting dx’ed with Lupus or MS.
Well first my name is Aubreon im 16yrs old
i was diagnoised with lupus when i was 11yrs old
im still tryin to understand what lupus really is
right now im not as sick as i was when i was diagnoised
but i have been in the hospital several times
ummm…sometimes i just feel really depressed to the point where i wanna die
i have really bad migranes
[i would like to learn more about why studies show lupus makes people like me so depressed]
This is a very rare condition. I don’t know anyone else who is afflicted with it. As doctors are even baffled by this disease, finding info about treatment is difficult. I was diagnosed 2 years ago, and already cryo has wreaked havoc on my body. I have tried several therapies, but any and all help is welcome!!
I’m a 38-year-old mother of two girls who was diagnosed with SLE in 2004. I would like to meet others with this same condition.
Need to find a physician to diagnosis my entire
body, decrease my severe pain and help me get
more functional, I also have RA, asthma, kidney
probloms, swollen feet, neuromas both feet. I need
positive support system and see if I can loose any weight or get approval from my insurance for banding since I am 100 pounds overweight. Thanks for your assistance. Suzie Q
I am interested in this condition because my son was born 27 years ago with severe club feet. He is now having major pain in both feet, along with arthritis in both, and we are not able to find a specialist that will help an adult still suffering with this condition.
I think I may have Dercum’s, but the Doctors won’t diagnose. I would like to know more about the desease and what it means to have it. I’d also like to talk to people who have similar issues.
Hi. I have fibromyalgia, chronic myofascial pain, chronic lumbar pain, chronic fatigue, etc. After a car accident two weeks ago, I feel like hard salt water taffy someone shook up in an empty coffee can.
After 9 years, my husband left me never believing that I had pain every day. I ended up gaining a lot of weight, too.
I would like to see if there others out therelike me
My daughter has been sufferring with chronic pancreatitis that had gone undiagnosed for five tears, and now that we know what it is, there doesn’t seem to be any way to help.
I have had Dercums 11 years I am 41 , I have 28 surgery within the 11 years… struggling ever day … Hopefully they will find something to help us soon…
Lyonzie
HEllo, I am 52 Female. I am now going through chemo FND/R for follicular Grade 1 stage 3-4. My lymphoma is in my abdomen & sm intestines now. I am going for a long remission. I am doing 6 treatments and have finished 3 of the cycles. I would like to find others going through this to see how you are dealing with it and any tips that I might learn from.
my name is brittany and im 17. i have been experiencing stomache pains for many years. it wasent until about 2 and a half years ago they found out i had endometriosis. i had a surgical procedure the day after christmas of last year and still have endrometriosis. im now recieving lupron depot shots and am hoping to get rid of this painful disorder. im hoping to find people with endometrisos like me to talk to about it with.
my name is brittany and im 17. i have been experiencing stomache pains for many years. it wasent until about 2 and a half years ago they found out i had endometriosis. i had a surgical procedure the day after christmas of last year and still have endrometriosis. im now recieving lupron depot shots and am hoping to get rid of this painful disorder. im hoping to find people with endometrisos like me to talk to about it with.