Guest guest Posted August 22, 2001 Report Share Posted August 22, 2001 In a message dated 8/22/01 6:43:23 PM Eastern Daylight Time, jmbjmmiv@... writes: > but I wanted to be in touch with other diabetics who were not all > necessarily on the pump. Hi Welcome to the group. I have been with this group since around the first of the year, I believe. I am constantly learning something new. Eunice in VA Type 2 - Nutrition/exercise/positive attitude/Faith in God Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Hi, ; It doesn't hurt to belong to several groups. You never know what you might learn. This group is really for positive support. So let us know if there is anything we can do to help your life with diabetes be easier. We are good for stress reduction, or just having friends who are going through similar things! Welcome! -list owner > I belong to another support group on the web- > insulun pumpers- but I wanted to be in touch with > other diabetics who were not all necessarily on the > pump. I look forward to getting to know all of you. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2001 Report Share Posted August 23, 2001 Hi, ; It doesn't hurt to belong to several groups. You never know what you might learn. This group is really for positive support. So let us know if there is anything we can do to help your life with diabetes be easier. We are good for stress reduction, or just having friends who are going through similar things! Welcome! -list owner > I belong to another support group on the web- > insulun pumpers- but I wanted to be in touch with > other diabetics who were not all necessarily on the > pump. I look forward to getting to know all of you. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2001 Report Share Posted August 27, 2001 Welcome . So sorry to see another young person with PSC. I am 59 and was diagnosed in 1988, but I think I had it for many years prior to dx. Glad to see that you are still healthy enough to be working even though you have been listed for transplant. I too have been seeing doctors at Hopkins since 1995. Who is your doctor? Do you live in the Baltimore area? I was told also by my hep, that when the time came to be listed, that maybe I would want to go to FL since the waiting list is so much shorter than in this region. You have found a great place here to learn about this disease and get support. I have been a member of this group for 2 years now but don't post very often. I usually just lurk and learn, lol. Take care. Carol ___________________________________________ My name is and have been diagnosed with PSC since 1993(on my 21st birthday,no less) and IBD since 1999, which is kind of backwards .. I am on the transplant list at s Hopkins for 4 years. And I just got back from Miami to be listed at Memorial at the urging of my Hepatologist in Baltimore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2006 Report Share Posted June 24, 2006 Hi, I am new to the Chronic Pain group. I'm very pleased to be here and welcome any and all suggestions and comments. A little history; I was diagnosed with fibromyalgia about 8 years ago, after over 2 years of going through the normal routine, i.e. doctors, colleagues, friends thinking that it's all in your head. I'm sure 99.9% of you have been through the same pre-diagnosis nightmare. My fibro is kept somewhat at bay by taking Effexor-XR. After trying everything else, it was the only drug that really gave me any kind of relief. One year after diagnosis of fibro, I had an attack of acute back pain. It didn't last more than three weeks, but was a little scary. Four years ago, my back pain returned with a vengeance in the form of sciatic pain. CT's and MRI confirm mild scoliosis with an extremely large disc herniation. Pain has continued despite traditional therapy and I've been scheduled for discectomy surgery. At the moment, I am taking Oxycodone only once daily (at bedtime)for the pain and am just about at the end of the pain tolerance chart. Does anyone have any suggestions or comments regarding whether or not I should be pushing for more pain meds?, are there alternates to Oxycodone? AND any comments on the discectomy from those who have been there? Thanks everyone in advance. I truly appreciate you taking the time to read this post, Warmest Regards, Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I just wanted to add that you MUST get copies of every single medical test results. Since it may be that you'll see a number of doctors, having this information available can help them diagnose your illness and could save you money as well! I always suggest that you keep a 3-ring binder with copies of all the reports - lab tests and narratives also. You are entitled to these so always ask after each test. It's better to get them as you go rather than wait till you need them and be in a rush to get them all. With my neuropathy, I started with a local neurologist, then went to a local, large teaching hospital and then to the Neurological Institute of New York at Columbia University...lots of tests!! Dorothy _____ From: Hugs-N-Pain [mailto:Hugs-N-Pain ] On Behalf Of aloha.monica Sent: Sunday, May 17, 2009 10:21 PM To: Hugs-N-Pain Subject: Re: New To The Group Sharleen, I have what is called Sjogren's Syndrome. Or since I have all the symtoms but my blood work is negative it's then called Sicca Complex or Sicca Disease. Sicca means dry. Sjogrens is sister/cousin to lupus. It causes VERY dry eyes, mouth, skin, nasal passages, etc. It causes internal dryness as well. And many more things. The problem with auto-immune illnesses are a person can have all the signs but still test negative. It's frustrating. That is why winter time is so hard for me. I need to live where there is plenty of moisture. SS also causes MAJOR fatigue. And now I have this ongoing burning pain in my neck, shoulders, and back. I sure do hope my neurologist gets to the bottom of what the problem is. All I can suggest is you see the BEST Drs. you can find to help you. Keep a daily dairy of what you feel. A good Dr. would run several bloog tests to rule in or out illnesses. BUT remember you can still test negative and have all the signs of something. Today was a HIGH pain day for me. Strange yesterday was much better. I wish you well in finding what the problem is. Hugs, From: Sharleen Rupp <sharleenrupp@ <mailto:sharleenrupp%40yahoo.com> yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ <mailto:Hugs-N-Pain%40yahoogroups.com> yahoogroups.com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ________________________________ From: Dorothy <dorvoptonline (DOT) <mailto:dorv%40optonline.net> net> To: Hugs-N-Pain@ <mailto:Hugs-N-Pain%40yahoogroups.com> yahoogroups.com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs-N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Thanks for the input. I have some of my records but not all, and never thought to ask after each test. i am gonna do that for now on. I really appreciate that input, something so simple, but one doesnt even think of it. I also was wondering what kind of neuropathy you have? Many times when I put in to webmd or others my symptoms, I get back that as one of the diagnosises. Also where do you live, since you go to New York for your tests? Sharleen ________________________________ To: Hugs-N-Pain Sent: Monday, May 18, 2009 10:30:43 AM Subject: RE: New To The Group I just wanted to add that you MUST get copies of every single medical test results. Since it may be that you'll see a number of doctors, having this information available can help them diagnose your illness and could save you money as well! I always suggest that you keep a 3-ring binder with copies of all the reports - lab tests and narratives also. You are entitled to these so always ask after each test. It's better to get them as you go rather than wait till you need them and be in a rush to get them all. With my neuropathy, I started with a local neurologist, then went to a local, large teaching hospital and then to the Neurological Institute of New York at Columbia University.. .lots of tests!! Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs-N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Sunday, May 17, 2009 10:21 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Sharleen, I have what is called Sjogren's Syndrome. Or since I have all the symtoms but my blood work is negative it's then called Sicca Complex or Sicca Disease. Sicca means dry. Sjogrens is sister/cousin to lupus. It causes VERY dry eyes, mouth, skin, nasal passages, etc. It causes internal dryness as well. And many more things. The problem with auto-immune illnesses are a person can have all the signs but still test negative. It's frustrating. That is why winter time is so hard for me. I need to live where there is plenty of moisture. SS also causes MAJOR fatigue. And now I have this ongoing burning pain in my neck, shoulders, and back. I sure do hope my neurologist gets to the bottom of what the problem is. All I can suggest is you see the BEST Drs. you can find to help you. Keep a daily dairy of what you feel. A good Dr. would run several bloog tests to rule in or out illnesses. BUT remember you can still test negative and have all the signs of something. Today was a HIGH pain day for me. Strange yesterday was much better. I wish you well in finding what the problem is. Hugs, From: Sharleen Rupp <sharleenrupp@ <mailto:sharleenrup p%40yahoo. com> yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ <mailto:Hugs- N-Pain%40yahoogr oups.com> yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) <mailto:dorv% 40optonline. net> net> To: Hugs-N-Pain@ <mailto:Hugs- N-Pain%40yahoogr oups.com> yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I don't have RSD but I have symptoms in my left leg.  My doctor and I call my RSD leg because the symptoms are the same.  The L3 and L4 that damaged the nerves there cause my my left thigh to burn, itch, and go crazy sometimes...like in the morning when I first attempt to move my leg...it's like getting hit with a blow torch.  The skin just burns...really, really burns with the slightest attempt to move a muscle.  It takes about 20 minutes or more to finally move it so it stops the blow torch burning.  But the parathesia and itching....and you can't scratch the itch because it's too numb.  Numb but painful as hell.  It changes symptoms over and over.  It has a closet full of symptoms....different types of pain.  Just when you think you know enough about pain a new one pops up. I cannot imagine what is must be like to have that all over.  My doc says it would be the same as the RSD because we're looking at nerve damage. Lotacats Twitter_follow me http://twitter.com/LotacatsFunPix Express Chronic Pain Awareness http://www.cafepress.com/lotacatspix/5815010 Lotacatsfunpix.com http://www.lotacatsfunpix.com/ Deviantart http://lotacats05.deviantart.com/ From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Well...it's what my doc says.... " nerve damage " so it would cause similar symptoms without actually being RSD.  Lotacats Twitter_follow me http://twitter.com/LotacatsFunPix Express Chronic Pain Awareness http://www.cafepress.com/lotacatspix/5815010 Lotacatsfunpix.com http://www.lotacatsfunpix.com/ Deviantart http://lotacats05.deviantart.com/ From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I have looked up RSD at many sites. Still confused on the causes and from what I have been reading hard to DX at times.  I start PT next week. I'm nervous about starting without a DX. I sure don't want to get worse and don't need any more pain. Pain sure does exhaust physically and wears on me mentally too.  From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 that is so true. I have been having some major pain the last week and it is wearing on me emotionally and physically.   That's what is hard to explain to people who don't suffer with chronic pain. Im and I am Blessed Mom to 7 beautiful children Kayla, , , Kristan, , Sadaya and , Nana to Elijah Proud Daughter to Emma and our new family member CupCake the Cat From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 awww cupcake is such a cute name for a cat :] how are you today lisa? ________________________________ To: Hugs-N-Pain Sent: Monday, May 18, 2009 6:54:07 PM Subject: RE: New To The Group that is so true. I have been having some major pain the last week and it is wearing on me emotionally and physically. That's what is hard to explain to people who don't suffer with chronic pain. Im and I am Blessed Mom to 7 beautiful children Kayla, , , Kristan, , Sadaya and , Nana to Elijah Proud Daughter to Emma and our new family member CupCake the Cat From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 I looked it up to and was kind of confused myself. for me it could be a possibility cause most of my symptoms started after I had gall bladder surgery. what I read said surgery could bring it on. for a year and a half I could not exercise cause I would get pains in my sides of my lower legs like someone was stabbing me. as soon as I stopped it would go away as quickly as it came on. I finally started again in Jan. and I was doing okay. Then one day in late Feb. I worked on the elliptical machine, which I hadnt done yet but had been doing the treadmill and then those circuit machines, so it wasnt like I never worked my arms before. still during the work out I felt great and about 3 hours after I had an episode as I call it and I got so bad and still havent really recovered from it. Maybe it was exercising or maybe not, but it scares the hell out of me. Maybe the elliptical wasnt the right choice but I was in no pain during and I only did it for a half an hour, but now I hurt to bad to exercise and the sweating as gotten much worse which then brings on the burning on my face ten fold. what also started happening after that, which I never had happen before is, when and if I have any alcohol, my face starts to burn instantly and I begin sweating, and I mean my hair on the back of my hair is soaked, and thats with 1 glass of a malibu bay breeze. but as soon as I stop drinking it stops. Now too me thats weird, and I tried to look it up and I couldnt find anything on that. But all this rambling is trying to say that I am with you being uncomfortable cause you dont have a dx. Its scary. You dont know if youll do more harm than good. I would think that they will be gentle and not push too hard, especially not knowing what exactly wrong. They're probably just gonna feel you out and see where your pain tolerance is and how tight you are. I went years and years ago, when I had a herniated disc, which technically wasnt dx because the insurance wouldnt allow me to have a MRI and just kept giving me meds and told me to go to physical therapy. so thats what they did with me. Good luck and you never know maybe they might know what wrong with you with there experience. let me know what happens, cause I was thinking of pushing my doctor to get physical therapy for me, cause Im afraid that my muscles are getting too weak and would eventually like to get back to the gym to try to workout to try to loose weight and Im afraid Ill do the wrong thing on my own. Sharleen ________________________________ To: Hugs-N-Pain Sent: Monday, May 18, 2009 7:16:10 PM Subject: RE: New To The Group I have looked up RSD at many sites. Still confused on the causes and from what I have been reading hard to DX at times.  I start PT next week. I'm nervous about starting without a DX. I sure don't want to get worse and don't need any more pain. Pain sure does exhaust physically and wears on me mentally too.  From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2009 Report Share Posted May 18, 2009 Sharleen, Don't know where all you have gone to find out what is wrong. But s Hopkinks is in Baltimore and is rated very highly. I would say if they can't find the problem no one could.  The problem you are having with alcohol is s SURE sign of what is wrong.  Like I said Sharleen keep a very detailed diary. You just need to get to the right source and you will have your answer/answers.  Good Luck and Hugs, From: Sharleen Rupp <sharleenrupp@ yahoo.com> Subject: Re: New To The Group To: Hugs-N-Pain@ yahoogroups. com Date: Sunday, May 17, 2009, 3:14 PM Hi , was reading the blogs and Im fairly new to this whole thing. I saw that you said you dont tolerate the winter well due to your type of lupus. I was just wondering if you could ellaborate on that. I am trying to get a diagnosis and since getting ill, I can not handle the heat or humidity. i also now have been having a hard time with the cold. I too have a hard time just being in the frozen food isle. Starting to think there isnt a place on earth that I would be able to tolerate. Hope you are feeling okay! Thanks for help, Sharleen ____________ _________ _________ __ From: Dorothy <dorvoptonline (DOT) net> To: Hugs-N-Pain@ yahoogroups. com Sent: Sunday, May 17, 2009 3:06:44 PM Subject: RE: New To The Group Aloha, !! I don't tolerate winter well either and suffer from cryoglobulenemia and Reynaud's... among other things, but those are the two that are subject to changes in temperature. I have problems just being in the frozen food aisle in the supermarket! ! Wish I could join you. I DO live on an island: Long Island! Very close to NY City so honking horns is something we are just used to. You may have heard that the definition of a " New York Minute " is the time it takes for the light to turn green and the guy behind you to honk his horn.LOL Just the thought of Hawaii is relaxing me :-) Dorothy _____ From: Hugs-N-Pain@ yahoogroups. com [mailto:Hugs- N-Pain@ yahoogroups. com] On Behalf Of aloha.monica Sent: Saturday, May 16, 2009 5:47 PM To: Hugs-N-Pain@ yahoogroups. com Subject: Re: New To The Group Donnie, The skin is normal in color. Living on a Island you either love it or some people do get cabin fever. Hawaii is warm all year round and is a beautiful place. Each Island has it's own flavor so to speak. I moved here mainly for health reasons. Also Hawaii has very low crime and the people are very friendly. For examle honking your car horn is considered very rude here.I cannot tolerate winter time due to the form of lupus I have. Dang! I don't know what I will do for pain when my body develops tolerance. Hopefully I will get a DX and there will be a medication to treat it that doesn't have a tolerance. Sorry you are in so much pain Donnie. It helps to know we are not alone. Hugs, _,_._,___ Quote Link to comment Share on other sites More sharing options...
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