Hi! Yall

[sharber63]

I am new to the ICA and this is my story. I am 48 now and have had IC since I was 25. I had only been married a year when all hell broke loose! I thought I must have a bladder infection,which I had never had before. So I went to the doctor and several antibiotics later I was at the Urologist office being told that I probably had IC. He did a cystoscopy and told me my bladder was terrible. Within about a 3-4month timespan I developed IC, endometriosis, chronic severe migraines, and chronic fatigue symtoms. I believe my IC started at least 1-2yrs before my bladder symtoms. I ran several high fevers that could not be explained, a first in my young, otherwise healthy life. With the last fever, there was a little cramp in my bladder when I sat down to pee. I did not have to go alot, nor was it painfull. I was running 103 degree fever and that was the only symtom????? By my late 20's I had fibromyalgia too. Now at 48 I am symtoms that sound alot like lupus, I have not seen a rheumatologist yet. My Husband of 18yrs left me in 2004, he runs a bank, and wiped me out financialy. I had to quit work when I was 27, due to having two or three hydrodistentions with chlorpactin, being tired all the time, and having horrible headaches. I also have cluster headaches, but I don't know if they are connected. In my mid-thirties the docs could do nothing more for me and I got sent to a pain specialist. He put me on methadone and it was blessed relief, however after 3 yrs it kinda quit working and I took fiorinal for breakthrough pain. I was going thru a tuff time emotionaly too. My dad died of cancer and my mom was sinking fast due to diabetes. I got to where I was taking too much fiorinal, just trying to keep up. I then got off all medication until I found suboxone, it helps you cope, I'll say that, but now with the "lupus" type pain and the desperate need to get back to work I Know I'm going to have to have some pain relief, and help with energy. DOES ANYONE have trouble waking up in the morning? MY pain is worse in the morning also. There is more too my story that I probably forgot, but if this sounds familiar I would love to talk to someone.

[Julie B]

to ICN!!!

I have trouble waking up in the morning also, but I have a routine that helps. I just get myself out of bed, do some stretching, drink a glass of water, and take a shower. Once I get moving I am fine, but it is mind over pillow, that is for sure!

What other treatments have you tried?

I am sorry to hear about your husband. Unfortunately, your story is all too common with people who have chronic disease.

Sending you understanding hugs..

Julie B

[sharber63]

Thank you so much! I live out on a ranch in South Tx and I am totally isullated, there is not another person for 10 miles. I appreciate your kindness so much, you just can not know. I had 22 hydrodistentions with chlorpactin. Those were so painfull, but they did seem to help. I probably owe the fact that I still have a bladder to those distentions. Also tried DMSO and elmiron, not in an instillation, but by pill form. In about 1996 they sid there was nothing more they could do. Until I get back to work and get insurance there is not much I can do but control the pain. I have used methadone before with great success, at least for the bladder pain. any suggestions on pain control? Vicodin, lortab etc. did'nt do much and I don't think they are meant for everyday pain control.

thank you again

[Julie B]

You are very very welcome!!!