newly diagnosed

[marymac114]

Hello everyone,

I was diagnosed with IC this summer after 4 years of being misdiagnosed. My symptoms started when I had an allergic reaction to sulfer and suffered from Stevens Johnson Syndrome. Since this occurence 4 years ago, I was misdiagnosed with Lupus, kidney disease, every STD under the sun. After years of incredible pain, I had a retrograde and instillation that ultimately ruled out many other things and I was diagnosed with IC.

Life has become extremely hard for me. I managed to finish my last semester of college and graduate; but I had worked so much between school and my full time job that my body just crashed and I have been unemployed since. I feel as if my body is failing me and I dont know what to do. For me, it is not the urgency that bothers me so much. I do have nights where I have to get up 6 or 7 times a night- but since being put on amitriptyline I have been able to sleep through the night. What gets me the most is the constant pain in my flank and pelvic area. I swear it feels like I am about to give birth out of my back.

Along with the usual IC symptoms I experience other symptoms which, from what I understand are not usual of IC. There are days when I feel so weak that I can not move or lift my arms or legs. Along with that, I have days when I can not move my fingers- kind of like bad arthritis or something. Besides these symptoms, everyday I just feel exhausted and almost as if I am coming down with the flu.

I definitely am not trying to complain and I am sure most of you are going through the same thing I am going through. I can't explain how awesome it is to have a support site like this. Any advice would be appreciated.

[statesboro]

I thought I would start off by giving you a welcome first of all. I do know you have found a good place, the website, where we do understand. Many people don't seem to. I had never heard of Steven Johnson Syndrome before.(hmmm) We don't enjoy having IC, or any chronic illness, but it is still good to be properly diagnosed. Besides, I do think you did good by finishing school. Of course, we actually have had some college students come on here. Yep! It does seem like you are experiencing something else as well. I know I have been told IBS and CFS on top of IC. Also, many do get told fibromyalgia. Regardless, I don't know if you have got that or not. I would think you need to see a doctor about the symptoms that seem unrelated. Maybe someone else will be able to give more insight. Ok, then. I will let that be all now.

[maryla]

Mary,

I just wanted to say welcome. I too suffer from fatigue. I usually discribe it as being beyond fatigue. And was diagnoised with chronic fatigue. Several drs. explained it as my body is continually trying to fight off what it sees as an infection(my bladder)

And yes it does feel like I have the flu 99% of the time. Body aches also. Usually how I tell that' it is flu, is if, I have a really really really bad sore throat(sometimes when my cf is flaring bad, I get swollen glands, sore throat and headache) couching, I'm throwing up or have bad diarrhea and a high fever, which if my temp is 98, I have a fever, it usually runs around 95-96

I also have fibromyagia. Have you checked that out as a possiblility?

I also incourage you to check out the diet and print the IC handbook. It comes in handy quite a few times.

Again welcome, you will find tons of love and support here!!

hugs and blessings