Scleroderma Information » Scleroderma » I would like to join your group
Question:
Hi I am so glas you don’y mind if I vent cause I really need to. My G.I. doctor scoped me last m week {endoscopy} and found that my ulcers are worse than ever and are bleeding. I was in the er two weeks ago for a G.I. bleed. I am in so much pain from the FMS that I need to take the pain pills, i feel like i’m running around in circles. I did not receive any ifo from Sherry about meds. for the past week I can’t keep anything in my stomach other than rice cereal. I’m just soooo tired but I can’t sleep because of pain. Oh well enough complaining for now. Thanks for listening Janis
Response:
>Hi my name is Janis I have been diognosed with FMS,scleroderma and crest >syndrome. I would like to be able to talk to someone and get some answers to >a >whole lot of questions.
You’ve made an important first step by posting here. As an AOL subscriber, you also have access to two live chats each week and a scleroderma bulletin board. Scleroderma chat takes place every Monday at 10 p.m. ET and Friday at 2 p.m. ET. in the Health Conference room (Keyword Better Health). BHostRo…@aol.com and BHostKa…@aol.com host the Monday chats; BHostSh…@aol.com hosts on Friday. AOLers can email any of us and we’ll give you the links to click on to make it easy to get into the rooms. The bulletin board is also keyword Better Health, then the Allergies & Immune Disorders message board. On Monday nights on AOL, doctors and other healthcare specialists often are guests. We’ve had the very top scleroderma specialists on our chats, including Drs. Medsger, Furst, Seibold, Steen, Mayes, Friedman, Fritzler, Wallace, Silver, Lehman, etc. Hope to see you there so we can help you find answers. Ronni (aka BHostRonni)
Response:
Susan, thanks for writing back this computer brlongs to my kids so I’m still pretty siow. As far as the questions , I din’y know where to begin I can tell you I’ve been through hsll and back again with so many doctors. My biggest concern right now is I have multible stomach ulcers chronic kidney infections and fairly bad Raynauds. What meds. are used to treet these problems? I am limited in what I can take because of my ulcers. Janis
Response:
You’re here and you’re posting! Sachel5221 wrote in message
<19990330111441.22114.00000…@ng-fb1.aol.com>… – Hide quoted text — Show quoted text ->Hi my name is Janis I have been diognosed with FMS,scleroderma and crest >syndrome. I would like to be able to talk to someone and get some answers to a >whole lot of questions. i’m not sure how to sign up Please write back to me >and tell me how. My e-mail address is Sachel5…@aol.com
Response:
We are here to listen and help in away we can. Sometimes it is easier to vent with people who experiencing the same thing and truely can say " I understand"! My slogan is EDUCATE. Get on line w/the links Amie and Sherry have provided you with and eductae yourself about medications and scleroderma. Everytime I am handed a new prescription before I get it filled, I just type in the name of it and hit search. I am able to learn alot more than the pharmcies provide. Hang in there and remember everyone here cares. No one needs to suffer in silence. Love and Hugs Colleen – Hide quoted text — Show quoted text -Sachel5221 wrote: > Hi I am so glas you don’y mind if I vent cause I really need to. My G.I. > doctor scoped me last m week {endoscopy} and found that my ulcers are worse > than ever and are bleeding. I was in the er two weeks ago for a G.I. bleed. I > am in so much pain from the FMS that I need to take the pain pills, i feel like > i’m running around in circles. I did not receive any ifo from Sherry about > meds. for the past week I can’t keep anything in my stomach > other than rice cereal. I’m just soooo tired but I can’t sleep because of > pain. Oh well enough complaining for now. Thanks for listening Janis
Response:
The disease is rough because some of the meds cause other problems. I have been on two meds that are hurting my stomach really bad. I see a G.I. Dr. soon to see about something to help stomach. Sherry has given you some really good links for information on medications for specific problems. It is really important to have a Dr. you can talk to and feel comfortable with, I hope you do. Please write soon and let us know how you are doing. Venting is allowed and understood. Some days are worse than others so hold on. Susan – Hide quoted text — Show quoted text -Sachel5221 wrote: > Susan, thanks for writing back this computer brlongs to my kids so I’m still > pretty siow. As far as the questions , I din’y know where to begin I can tell > you I’ve been through hsll and back again with so many doctors. My biggest > concern right now is I have multible stomach ulcers chronic kidney infections > and fairly bad Raynauds. What meds. are used to treet these problems? I am > limited in what I can take because of my ulcers. Janis
Response:
If you have questions on specific medications you might want to do a search for them at a drug search engine. There is a list of those as well as some individual links for certain drugs we sometimes are prescribed at http://sclerodermasupport.com/med-medications.htm — Love and Hugs From Sherry ********************************************** You Are Never Alone, Find Support Online We Are sharing information, news and providing support Surviving Scleroderma, http://SclerodermaSupport.com ********************************************** "Together We Can Beat The Odds" Sachel5221 <sachel5…@aol.com> wrote in message
news:19990331121440.13460.00000224@ng-fw1.aol.com… – Hide quoted text — Show quoted text -> Hi I am so glas you don’y mind if I vent cause I really need to. My G.I. > doctor scoped me last m week {endoscopy} and found that my ulcers are worse > than ever and are bleeding. I was in the er two weeks ago for a G.I. bleed. I > am in so much pain from the FMS that I need to take the pain pills, i feel like > i’m running around in circles. I did not receive any ifo from Sherry about > meds. for the past week I can’t keep anything in my stomach > other than rice cereal. I’m just soooo tired but I can’t sleep because of > pain. Oh well enough complaining for now. Thanks for listening Janis
Response:
Hi Janis: Welcome, this is a nice bunch of people and they will help you to find lots of answers…..Gigi
Response:
Welcome to our family of friends Janis! Any way any of us can help, please let us know whether its information, or just to vent we are here for you. Lord knows I vent enough for everybody, but everyone is patient and caring. You joined us when you posted. Love and Hugs Colleen – Hide quoted text — Show quoted text -Amie Yaussy wrote: > You’re here and you’re posting! > Sachel5221 wrote in message > <19990330111441.22114.00000…@ng-fb1.aol.com>… > >Hi my name is Janis I have been diognosed with FMS,scleroderma and crest > >syndrome. I would like to be able to talk to someone and get some answers > to a > >whole lot of questions. i’m not sure how to sign up Please write back to > me > >and tell me how. My e-mail address is Sachel5…@aol.com
Response:
Sachel5221 <sachel5…@aol.com> wrote in message
news:19990331074735.18035.00000118@ng-fu1.aol.com… > HI I’v been trying to wriye back but could’t figyre out hoe Hopr this
works. Yep it worked and I wish to personally welcome you. You will find much support here. >I don’t know where to start with the questions, I quess my main concern at this > point is I have multible stomach ulcers so i can’t take a lot of meds.
Ouchie I know that must be difficult. Especially when we do need to take medications for so many of our symptoms. > This > conputer belongs to my kids so I’m real slow .
Don’t worry about speed here. You are among friends and many of us have challenges with our hands and are slow to. >Do any of you have problems when > swollowing your food? I need to take pain meds for the FMS
Ohhh Janis this is one of those questions if we all answered their would be a stampede of responses 
Yes many of us have this problem. If yours is severe please consult your physician and ask him if you may have a stricture. You can get a stricture (narrowing of the esophagus) and if this is found to be the situation with you they can do a procedure called dilitation. This procedure is where they use a scope go down your esophagus and stretch it. It sounds worse then it really is. You are under a sedation and it isn’t painful persay. A bit uncomfortable but in comparison to the pain of the stricture it isn’t anything and many get great relief from it. Much of this and more information on gastrointestinal involvement is discussed on my website. Here is that link. http://sclerodermasupport.com/med-gi.html You could also be having difficulty swallowing due to the motility of the esophagus and this can often be assisted by medication. Be sure you are seeing a rheumatologist that specializes in scleroderma and he may refer you to a gastroenterologist who specializes in care of the GI Tract. If you need a list of scleroderma treatment centers you may view a list off of my site at http://sclerodermasupport.com/clinics.html You may also want to contact The Scleroderma Foundation by phone at 1-800-722-HOPE or online at http://www.scleroderma.org and they can provide you with a referral in your locale. I hope this helps somewhat. Feel free to email any of us any time. If you have specific questions feel free to post them here on the newsgroup or to email any of us privately. Once again welcome. — Love and Hugs From Sherry ********************************************** You Are Never Alone, Find Support Online We Are sharing information, news and providing support Surviving Scleroderma, http://SclerodermaSupport.com ********************************************** "Together We Can Beat The Odds"
Response:
Welcome to the group. I’m glad we are here for you. Please send as many questions as you want. We’re ready! Susan – Hide quoted text — Show quoted text -Sachel5221 wrote: > Hi my name is Janis I have been diognosed with FMS,scleroderma and crest > syndrome. I would like to be able to talk to someone and get some answers to a > whole lot of questions. i’m not sure how to sign up Please write back to me > and tell me how. My e-mail address is Sachel5…@aol.com
Response:
HI I’v been trying to wriye back but could’t figyre out hoe Hopr this works. I don’t know where to start with the questions, I quess my main concern at this point is I have multible stomach ulcers so i can’t take a lot of meds. This conputer belongs to my kids so I’m real slow . Do any of you have problems when swollowing your food? I need to take pain meds for the FMS. thanks Janis
Response:
Janis – are you seeing a rheumatologist? There are new drugs on the market for arthritis that are less likely to irritate your stomach. I take Celebrex for joint pain myself. Check with your doctor. Sachel5221 wrote in message
<19990331121440.13460.00000…@ng-fw1.aol.com>… – Hide quoted text — Show quoted text ->Hi I am so glas you don’y mind if I vent cause I really need to. My G.I. >doctor scoped me last m week {endoscopy} and found that my ulcers are worse >than ever and are bleeding. I was in the er two weeks ago for a G.I. bleed. I >am in so much pain from the FMS that I need to take the pain pills, i feel like > i’m running around in circles. I did not receive any ifo from Sherry about >meds. for the past week I can’t keep anything in my stomach >other than rice cereal. I’m just soooo tired but I can’t sleep because of >pain. Oh well enough complaining for now. Thanks for listening Janis
Response:
Hi my name is Janis I have been diognosed with FMS,scleroderma and crest syndrome. I would like to be able to talk to someone and get some answers to a whole lot of questions. i’m not sure how to sign up Please write back to me and tell me how. My e-mail address is Sachel5…@aol.com
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