Scleroderma Information » Scleroderma » Esophageal Dysfunction
Question:
Nitrogycerine tablets like they give for angina sometimes helps esophageal spasms I have very bad esophageal problems and have to get my esophagus stretched at least once a year. I take Prevacid and Propulsid in between dilations. I also take nitro when the pain gets too bad. ….Gigi
Response:
Thank you, everyone, for your suggestions and kind words. You all have no idea how much it means to have someone to talk to who actually knows what you’re feeling. Most people think we are hypocondriacs looking for attention so I don’t even bother discussing these things around other people. I just sit and suffer through whatever is happening at the moment. I wish I could send my love to all of you and comfort you when you are feeling bad. Know that I am here if anyone needs to vent or talk about things. Feel free to email me anytime and I will answer as quickly as possible. We all try to not feel sorry for ourselves, I’m sure, but some days are pretty rough getting the energy and mindset to go on. I am curious as to how many of you are immune to narcotic pain killers? I was wondering if I am the only strange person who gets no relief from narcotic painkillers (all they do is upset my stomach) and if it is some quirky thing associated with the Scleroderma. I lost a toe in January after a 6-month fight to save it (from Raynaud’s) and I never suffered so much pain in my life. The last few days before the surgery the docs even tried an enhanced form of Demerol and it did not touch the pain. I’ve never taken narcotics in my life nor even done any illegal drugs so it’s certainly not because I have built up a tolerance. Sooo many questions…but if we don’t ask each other no one else can tell us. I promise I won’t bother you with more questions for a while…. Remember I am here for all of you. Barb The doctor said today he is going to order an endoscopy to see what is going on in there. I can’t wait if there is some relief to be gained from this spasming. – Hide quoted text — Show quoted text -Richard Schiehl wrote: > Hey Barbara, > I am up to 40mgs of Bently daily now and 450mgs of Axid. I havent had to > have the dilation yet but others in the ng have and seem to have success. > You might want to talk to your doctor about this procedure after you check > out the others stories and experiences. There are some great links on > Sherrys/Amies/Shellys/Eds websites and information galore to be found there > also on this subject. Keep us posted!!! > Love and Hugs > Colleen > Barbara wrote: > > Hi: I was wondering if anyone knows of any drug or treatment that would > > help with the esophageal dysfunction I am having (and which is getting > > worse by the day) which causes severe spasmimg and eventually losing the > > contents of my stomach when I eat. I’ve read that this is caused by the > > Raynaud’s associated with the progressive systemic sclerosis > > (scleroderma) and can also cause coronary spasms (I guess I’ve not had > > any of those yet because I’m still here). > > My doctor has tried Bentyl, Donnatal, Prilosec to no avail. I’m > > miserable and almost afraid to eat. Sometimes, even after I’ve lost my > > dinner, the spasms last a half hour and it feels as though there is a > > piston punching me in the diaphragm. > > I would certainly appreciate any suggestions. > > Barbara
Response:
Hi: I was wondering if anyone knows of any drug or treatment that would help with the esophageal dysfunction I am having (and which is getting worse by the day) which causes severe spasmimg and eventually losing the contents of my stomach when I eat. I’ve read that this is caused by the Raynaud’s associated with the progressive systemic sclerosis (scleroderma) and can also cause coronary spasms (I guess I’ve not had any of those yet because I’m still here). My doctor has tried Bentyl, Donnatal, Prilosec to no avail. I’m miserable and almost afraid to eat. Sometimes, even after I’ve lost my dinner, the spasms last a half hour and it feels as though there is a piston punching me in the diaphragm. I would certainly appreciate any suggestions. Barbara
Response:
On Tue, 08 Jun 1999 23:44:56 -0400, Barbara <denl…@earthlink.net> wrote: >I am curious as to how many of you are immune to narcotic pain killers? I was >wondering if I am the only strange person who gets no relief from narcotic >painkillers (all they do is upset my stomach) and if it is some quirky thing >associated with the Scleroderma. I lost a toe in January after a 6-month fight >to save it (from Raynaud’s) and I never suffered so much pain in my life. The >last few days before the surgery the docs even tried an enhanced form of >Demerol and it did not touch the pain. I’ve never taken narcotics in my life >nor even done any illegal drugs so it’s certainly not because I have built up a >tolerance.
I only had one instance of intolerance when some nine years ago, I felt EXCRUCIATING pain in the fingers. What’s strange is that the pain was not limited to one finger at one time. The pain would ‘migrate’ from one finger to another at irregular intervals. Usually, I had attacks starting at 2 in the morning and the pain (imagine having a car door slam on your fingers) was so unbearable that I couldn’t sleep. Not even Percocet would cut it! I downed that stuff like it was M&Ms! This situation continued for about three months and vanished as suddenly as it appeared. Since my wife was terminally ill with cancer, I attributed it to stress. During that time, my fingers were beginning to ulcerate as well. The year 1990 was very bad! A couple of years later, I had the misfortune of having an infection on my right index finger. From February until June, I took antibiotics, but to no avail. Finally, I woke up one morning to find it swollen up like a balloon. Needless to say, I rushed to emergency and was told that gangrene set in and the finger had to go. The surgeon suspected it was caused by Raynaud’s. At the time, I didn’t even know what Raynauds’s was, no less CREST – which I later on was diagnosed as having. Somehow, I managed to survive. Little by little I’m getting back on my feet. I don’t suffer any pain to speak of, and thanks to Procardia XL, the numbness of my fingertips has all but vanished. The numbness was most severe, especially in view of the fact that I was a mailman working in very cold Massachusetts winter weather. Since gloves are a hindrance when handling mail, I was really behind the eight ball! It’s ironic that you mention ‘hypochondriac’, because when I began to have this trouble, it had a negative effect on my work. One boss accused me of being a malingerer. So I know how you must feel. Hopefully, as time goes on, the public will become more aware of SD, Raynaud’s, CREST and the rest of allied diseases. I guess the best way to start this trend is to do enlighten those around us. Best wishes and good health and happiness, Bob – alle…@tiac.net ICQ 6418621
Response:
Hey Barbara, I am up to 40mgs of Bently daily now and 450mgs of Axid. I havent had to have the dilation yet but others in the ng have and seem to have success. You might want to talk to your doctor about this procedure after you check out the others stories and experiences. There are some great links on Sherrys/Amies/Shellys/Eds websites and information galore to be found there also on this subject. Keep us posted!!! Love and Hugs Colleen – Hide quoted text — Show quoted text -Barbara wrote: > Hi: I was wondering if anyone knows of any drug or treatment that would > help with the esophageal dysfunction I am having (and which is getting > worse by the day) which causes severe spasmimg and eventually losing the > contents of my stomach when I eat. I’ve read that this is caused by the > Raynaud’s associated with the progressive systemic sclerosis > (scleroderma) and can also cause coronary spasms (I guess I’ve not had > any of those yet because I’m still here). > My doctor has tried Bentyl, Donnatal, Prilosec to no avail. I’m > miserable and almost afraid to eat. Sometimes, even after I’ve lost my > dinner, the spasms last a half hour and it feels as though there is a > piston punching me in the diaphragm. > I would certainly appreciate any suggestions. > Barbara
Response:
On Tue, 08 Jun 1999 01:21:43 -0400, Barbara <denl…@earthlink.net> wrote: – Hide quoted text — Show quoted text ->Hi: I was wondering if anyone knows of any drug or treatment that would >help with the esophageal dysfunction I am having (and which is getting >worse by the day) which causes severe spasmimg and eventually losing the >contents of my stomach when I eat. I’ve read that this is caused by the >Raynaud’s associated with the progressive systemic sclerosis >(scleroderma) and can also cause coronary spasms (I guess I’ve not had >any of those yet because I’m still here). >My doctor has tried Bentyl, Donnatal, Prilosec to no avail. I’m >miserable and almost afraid to eat. Sometimes, even after I’ve lost my >dinner, the spasms last a half hour and it feels as though there is a >piston punching me in the diaphragm. >I would certainly appreciate any suggestions. >Barbara
We’re in the same club. Up until December, I had the same problem. This is common with Raynaud’s victims. I underwent a simple dilation of the esophagus and put on Prevacid to control the acid. The acid caused an inflammation in the esophagus, not unlike an ulcer. In fact Prevacid is sometimes prescribed to people with ulcers. Three hours after my esophagus was dilated (stretched), I was in a restaurant eating a sirloin steak. It went down like silk! The procedure is a piece of cake, as they put you under. But you’re ‘outta there’ in a couple of hours. The doc also told me to raise the head of the bed, so as the acid will not roll back. Basically, he said it was Reflux disorder. To this day, I’m doing well. There are days that I have a little difficulty, especially when I get tense. This causes more stricture. Try it, you’ll like it! 
Bob – alle…@tiac.net ICQ 6418621
Response:
Hi Barbara! Have you had an endoscopy of your esophagus? Susan – Hide quoted text — Show quoted text -Barbara wrote: > Hi: I was wondering if anyone knows of any drug or treatment that would > help with the esophageal dysfunction I am having (and which is getting > worse by the day) which causes severe spasmimg and eventually losing the > contents of my stomach when I eat. I’ve read that this is caused by the > Raynaud’s associated with the progressive systemic sclerosis > (scleroderma) and can also cause coronary spasms (I guess I’ve not had > any of those yet because I’m still here). > My doctor has tried Bentyl, Donnatal, Prilosec to no avail. I’m > miserable and almost afraid to eat. Sometimes, even after I’ve lost my > dinner, the spasms last a half hour and it feels as though there is a > piston punching me in the diaphragm. > I would certainly appreciate any suggestions. > Barbara
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