Forums:
Dear all,
There's something that puzzles me and I hope that someone can perhaps suggest some reasons for this phenomenon. I read the other ic websites ICN, Cob foundation) and have noticed that the IC that people post with on these does not bear a close resemblance to the IC that people talk about here. For example, Aya's sesamoid problem or joint/muscle problems, extreme eye floaters (I have these), extreme head pain (ditto), severe constant nausea that I've read about, not being able to stand up, not being able to talk properly, heart attack symptoms, etc. etc. etc..do not get mentioned on the other boards. In fact, the only reason I know that I have IC is because I had previously some mild bladder only symptoms. If I were trying to get diagnosed now, I would not know which doctor to go to. Why do we have such extreme symptoms on these boards whereas people tend to post only bladder symptoms on these other boards (which are bad enough in themselves)? Is it entirely die-off? I started with all my symptoms at the same time, before I sought this treatment and my symptoms are constant so I have no idea what die-off is. I know that we are clearly a self-selected group of participants but the difference between the symptoms on these different boards is stark. I would be interested to hear your views.
Vin, medical doctors know
Vin, medical doctors know that once someone has one autoimmune disorder, the door is open for more. It is a fact that many people end up with more than one dis-ease. I had symptoms of fibro, which are gone now, but I was diagnosed with both IC and fibromyalgia. If I kept going to doctors, I might've been diagnosed with more?? who knows...for example, ringing in ear probably has a name, reflux, vertigo, anxiety, etc, etc...I think people on other sites view symptoms and conditions as unrelated issues, where here we do know that our bodies interconnected.
Then, some of the drugs they take help mask symptoms. Their secondary symptoms may be not as vivid as ours.
Hi Blondy, I do understand what you mean but...
I am still puzzled as to why the people writing on the other sites only talk about their bladders. I think the reason why I am puzzling over this is that my 'other' symptoms are more awful than my bladder symptoms, which are fairly low level, but I don't see many people writing on these other sites, "Hi, I am new to the site and I have excruciating head pain, vision problems and nausea", which would be what I would write if I were to go on them! Oh well, it's all part of the great, over-arching mystery of IC, I guess. On we go...
Vine- I think Blondy is
Vine- I think Blondy is totally on the mark. I remember reading on ICN that someone's IC was in remission- the were "totally better" Except now they have rheumatoid arthritis and chronic fatigue. SO I think Blondy is right- it is a matter of perception. They probably talk about their other symptoms on other boards.
((hug))
I think people may only talk
I think people may only talk about their IC on the other forums because it's their worst symptom - but it doesn't mean they don't have other issues.
Personally, my IC troubled me the most but I also had a ton of other issues including joint pain, IBS, sensitivity to bright lights, etc.