http://www.fightingfatigue.org/?p=8184 Wed, 08 Sep 2010 07:55:27 +0000 hourly 1 http://wordpress.org/?v=3.0 http://www.fightingfatigue.org/?p=8184&cpage=1#comment-181104 Julie Osenton Tue, 23 Feb 2010 17:57:58 +0000 http://www.fightingfatigue.org/?p=8184#comment-181104 I totally disagree with you. I have had IC and Pelvic floor dysfunction since I had a hysterectomy and a burch procedure. My muscles used to urinate do not work in the normal fashion as you relax and you urinate. I have to use my muscles to urinate and thus a viscous cycle started. I then had a very bad UTI that took two rounds of antibiotics to treat it and it still didn't go away and that is when I was diagnosed with IC. I never had pain or took pain meds. In 1999 they didn't give you pain meds they gave you DMSO treatments once a week. That in no way touched the pain. The pain is real and to say the IC patients are sensitive to pain is ridiculous it obviously comes from someone who has never suffered from the terrible pain of IC. I see a pelvic floor physical therapist and she says I am the worst patient she has ever seen, all my muscles are spasming. I cannot invent that pain in my head. I have rectal and vaginal spasms. The burning in the urethrae is the worst thing I have ever dealt with. It is like you are on fire after you pee. The only relief you get is uristat and prelief and morphine and ice paks and taking muscle relaxants to break the spasms. I also had a interstim implanted to help with the frequency and urgency, which it does as long as you don't have a UTI. For anyone to say that IC patients are more sensitive to pain yeah they are sensitive to pain because they are in so much pain and no one understands not even the medical establishment. I am a RN and they don't understand that when they put you NPO they are sentencing you to a pain you can't get away from until they put you to sleep or do the test and you can get to your meds. I self cath and use sodium bicarb/lidocaine/heparin and put it in my bladder and pray I can hold it and the spasms won't make me lose it. I use suppositories from a compounding pharmacy in North Carolina and doing all this I still have pain on a scale of 1-10 I am a 8 or 9 until my meds kick in. IC is acid in your bladder leaking thru the walls of the bladder, IC is what causes you to be sensitive to pain the disease not something wrong with the person in their mind or if your trying to say they are an addict you are so off. I wish you could spend one day in my shoes. I can only drink water, can't eat hardly anything I like if it has acid in it, no nutrisweet or artificial sweetners, no colas, no coffee, nothing with caffiene, no alcohol, certain medications for colds and flu the list goes on. Have you ever studied pain? I go to a pain management Dr and he has done blocks on me, I have had botox put into all the muscles to keep them from spasms. I feel like I can't go anywhere or I can't cath if I need to and I need that medicine to deaden the area. It really hurts when studies come out and make bold statements blaming the IC sufferer to being more sensitive to pain than the regular person. I never took pain medicine or was overly sensitive to pain until I have suffered so much pain and the DR looks at you and says there is nothing more we can do for you. I was just at the Cleveland Clinic in Ohio last week and that is exactly what happened. He rammed his hand up inside of me and felt the muscles and said there is nothing more we can do for you. Well you knew that before you rammed your hand up me. We are human beings, that feel, love, hurt, and want to be treated like a person and not some disease. If it weren't for my pelvic floor physical therapist no one would care. She is the only one that tries to help and really knows what is going on with the patients because she feels their insides everyday and knows. But I bet nobody has thought to interview people like her. It is a disease that causes terrible pain and they don't know why. It is not people with IC are sensitive to pain. There is a huge difference. I know I live it everyday. I totally disagree with you. I have had IC and Pelvic floor dysfunction since I had a hysterectomy and a burch procedure. My muscles used to urinate do not work in the normal fashion as you relax and you urinate. I have to use my muscles to urinate and thus a viscous cycle started. I then had a very bad UTI that took two rounds of antibiotics to treat it and it still didn’t go away and that is when I was diagnosed with IC. I never had pain or took pain meds. In 1999 they didn’t give you pain meds they gave you DMSO treatments once a week. That in no way touched the pain. The pain is real and to say the IC patients are sensitive to pain is ridiculous it obviously comes from someone who has never suffered from the terrible pain of IC. I see a pelvic floor physical therapist and she says I am the worst patient she has ever seen, all my muscles are spasming. I cannot invent that pain in my head. I have rectal and vaginal spasms. The burning in the urethrae is the worst thing I have ever dealt with. It is like you are on fire after you pee. The only relief you get is uristat and prelief and morphine and ice paks and taking muscle relaxants to break the spasms. I also had a interstim implanted to help with the frequency and urgency, which it does as long as you don’t have a UTI. For anyone to say that IC patients are more sensitive to pain yeah they are sensitive to pain because they are in so much pain and no one understands not even the medical establishment. I am a RN and they don’t understand that when they put you NPO they are sentencing you to a pain you can’t get away from until they put you to sleep or do the test and you can get to your meds. I self cath and use sodium bicarb/lidocaine/heparin and put it in my bladder and pray I can hold it and the spasms won’t make me lose it. I use suppositories from a compounding pharmacy in North Carolina and doing all this I still have pain on a scale of 1-10 I am a 8 or 9 until my meds kick in. IC is acid in your bladder leaking thru the walls of the bladder, IC is what causes you to be sensitive to pain the disease not something wrong with the person in their mind or if your trying to say they are an addict you are so off. I wish you could spend one day in my shoes. I can only drink water, can’t eat hardly anything I like if it has acid in it, no nutrisweet or artificial sweetners, no colas, no coffee, nothing with caffiene, no alcohol, certain medications for colds and flu the list goes on. Have you ever studied pain? I go to a pain management Dr and he has done blocks on me, I have had botox put into all the muscles to keep them from spasms. I feel like I can’t go anywhere or I can’t cath if I need to and I need that medicine to deaden the area. It really hurts when studies come out and make bold statements blaming the IC sufferer to being more sensitive to pain than the regular person. I never took pain medicine or was overly sensitive to pain until I have suffered so much pain and the DR looks at you and says there is nothing more we can do for you. I was just at the Cleveland Clinic in Ohio last week and that is exactly what happened. He rammed his hand up inside of me and felt the muscles and said there is nothing more we can do for you. Well you knew that before you rammed your hand up me. We are human beings, that feel, love, hurt, and want to be treated like a person and not some disease. If it weren’t for my pelvic floor physical therapist no one would care. She is the only one that tries to help and really knows what is going on with the patients because she feels their insides everyday and knows. But I bet nobody has thought to interview people like her. It is a disease that causes terrible pain and they don’t know why. It is not people with IC are sensitive to pain. There is a huge difference. I know I live it everyday.

]]> http://www.fightingfatigue.org/?p=8184&cpage=1#comment-180881 m masterson Tue, 23 Feb 2010 05:34:35 +0000 http://www.fightingfatigue.org/?p=8184#comment-180881 Central sensitization research is popping up all over the place. Since there are medicines on the horizon that appear promising we will likely continue to see more research results. I am however concerned about the big switch from the thinking that fibromyalgia is an auto immune disease to thinking it a Central sernsitization issue. When I was diagnosed in 2002 with fibromyalgia, the condition had an official disease number and was considered one of the "fibro" five. Lupus was one of the other maladies in the group. I have done extensive research on the issue. Some of the better research, I have seen was done on dna . Auto immune disease was shown to have its own marker, including such maladies as diabetes 1 and psoriatic arthritis. I would welcome help for this stupid malady. It's embarassing when you are asked, what is it you have. Then you get this glazed over look and professionals tell you, well you are a very sensitive person. Even in the Ciba-Geigy medical manual, it is concluded that fibromyalgia patients, all seem to have a specific type of sensitive personality . Much ado is given to the depression that patients suffer. What is it going to take in order for the medical community to understand. This is an incredibly obnoxious tyrant we have on our hands. Tailoring what medicines can do, then arranging and reorganizing symptoms to fit, is not the kind of help I am looking for. It will make anyone connected with the "new miracle " drug better off. I am concerned, because we are not getting to the core of what causes these maladies. Medicine needs to re-think the current direction. We need real help. Central sensitization research is popping up all over the place. Since there are medicines on the horizon that appear promising we will likely continue to see more research results.
I am however concerned about the big switch from the thinking that fibromyalgia is an auto immune disease to thinking it a Central sernsitization issue.
When I was diagnosed in 2002 with fibromyalgia, the condition had an official disease number and was considered one of the “fibro” five. Lupus was one of the other maladies in the group.
I have done extensive research on the issue. Some of the better research, I have seen was done on dna . Auto immune disease was shown to have its own marker, including such maladies as diabetes 1 and psoriatic arthritis.
I would welcome help for this stupid malady. It’s embarassing when you are asked, what is it you have. Then you get this glazed over look and professionals tell you, well you are a very sensitive person. Even in the Ciba-Geigy medical manual, it is concluded that fibromyalgia patients, all seem to have a specific type of sensitive personality . Much ado is given to the depression that patients suffer. What is it going to take in order for the medical community to understand. This is an incredibly obnoxious tyrant we have on our hands. Tailoring what medicines can do, then arranging and reorganizing symptoms to fit, is not the kind of help I am looking for. It will make anyone connected with the “new miracle ” drug better off. I am concerned, because we are not getting to the core of what causes these maladies.
Medicine needs to re-think the current direction. We need real help.

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