Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Hi Rogene,Can you tell us anything else about the infrared heating pads. What kinds of ailments does your daughter think they help? Does it really work better than a regular heating pad? They are pretty pricey, so I'm just checking before splurging.ThanksLaurieOn Nov 28, 2006, at 9:51 AM, Lea wrote: Thank you dear Rogene: We were looking for a new heating pad, and because of your advice, we will look for this type. has to go our later today and he will look for the infrared. I hope that we can find it in one of the stores. Honey, so happy that you have the cast off...stay well, love always.....Lea~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: CFS is real!>> Thank you for this, Kenda. We have a doctor here who won a case in court regarding CFS. I am not sure if I have CFS, but for me it is the pulling down pain in my back rib cage that destroys my life. I was up at 5AM, and now my day is over because I can no longer sit. It feels like something is pulling my upper back downward! The pain is so bad, and we are at a loss as to what is causing this...I have had this condition for so many years. The doctors have told me that I have chest wall damage from the ruptured implants. Do any of you have this condition?> > I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome at the same time as my fibromyalgia diagnosis -around age 24. Just like the prior post implied... people see you go from being a healthy, active person to being cripled. The fatigue is so great, it not only affects your physical capabilities, but you can't even TALK enough to maintain a social life. I can't even talk on the phone with my friends or family. I can become exhausted carrying on a conversation for more than 10 minutes. If I converse 30-60 minutes -I'm ready for bed. When you get tired, your throat gets sore and your eyes swell up. (I'm pretty sure that's in keeping with the CFS symptoms---but I know they are for sure my symptoms I notice.) I was recently diagnosed with malnurishment due to malabsorption in my stomach, and this on top of the CFS has caused me to keep a sore throat for months. It feels like strep, but isn't---it's from pure exhaustion.It's hard for people to understand. I have friends and family who think "OK, I understand you don't feel like going out and doing anything because you don't feel well ---so I'll just come visit you... or we can just go have dinner." They can't comprehend that even TALKING to them creates exhaustion.Life becomes a constant struggle for energy.I haven't posted for a while, but my other diagnosis are: Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, my ANA is negative. It goes back and forth about every year or two.) My rib cage stays swollen and inflamed with knots, by the way. (I saw this mentioned.) God bless you all... sorry I haven't kept up or posted in a while, but I've been miserable the past few months. You're all ALWAYS in my prayers though!!!!Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 My daughter uses infrared with Azheimer's patients. Sometimes it's tough to know when they have aproblem - but she's seen patients go from wheelchairs to walking around in as little as five treatments, . . no placebo effect there! A study showed improvement in peripheral neuropathy in as little as one treatment. What's sad is that, because infrared therapy was catching on so with the senior crown, they quit covering treatments under Medicad. Because they benefit the patients so much, my daughter uses it anyway. . . Long standing diabetic wounds, bed sores and peripheral neuropathy respond well also. What's nice is that there are no limitations on number of treatments, and it's passive so a patient doesn't need to be attended during treatment. That's not to say a pad can be put on and forgot though (as in sleeping on a pad) . . .Little red spots will start occuring if it's left on one spot too long. You'd do well to read up in the benefits of infrared therapy online. I love my FAR infrared sauna . . . Whole body treatments. - much more expensive than pads or lights. I'd recommend the sauna over the pads for anyone who can afford it and who doesn't get sick from heat. Since my cast is off, I'll be using it daily to speed the healing of my arm. Rogenejumpony <ltolkin@...> wrote: Hi Rogene, Can you tell us anything else about the infrared heating pads. What kinds of ailments does your daughter think they help? Does it really work better than a regular heating pad? They are pretty pricey, so I'm just checking before splurging. Thanks Laurie On Nov 28, 2006, at 9:51 AM, Lea wrote: Thank you dear Rogene: We were looking for a new heating pad, and because of your advice, we will look for this type. has to go our later today and he will look for the infrared. I hope that we can find it in one of the stores. Honey, so happy that you have the cast off...stay well, love always.....Lea ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: CFS is real! >> Thank you for this, Kenda. We have a doctor here who won a case in court regarding CFS. I am not sure if I have CFS, but for me it is the pulling down pain in my back rib cage that destroys my life. I was up at 5AM, and now my day is over because I can no longer sit. It feels like something is pulling my upper back downward! The pain is so bad, and we are at a loss as to what is causing this...I have had this condition for so many years. The doctors have told me that I have chest wall damage from the ruptured implants. Do any of you have this condition?> > I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome at the same time as my fibromyalgia diagnosis -around age 24. Just like the prior post implied... people see you go from being a healthy, active person to being cripled. The fatigue is so great, it not only affects your physical capabilities, but you can't even TALK enough to maintain a social life. I can't even talk on the phone with my friends or family. I can become exhausted carrying on a conversation for more than 10 minutes. If I converse 30-60 minutes -I'm ready for bed. When you get tired, your throat gets sore and your eyes swell up. (I'm pretty sure that's in keeping with the CFS symptoms---but I know they are for sure my symptoms I notice.) I was recently diagnosed with malnurishment due to malabsorption in my stomach, and this on top of the CFS has caused me to keep a sore throat for months. It feels like strep, but isn't---it's from pure exhaustion.It's hard for people to understand. I have friends and family who think "OK, I understand you don't feel like going out and doing anything because you don't feel well ---so I'll just come visit you... or we can just go have dinner." They can't comprehend that even TALKING to them creates exhaustion.Life becomes a constant struggle for energy.I haven't posted for a while, but my other diagnosis are: Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, my ANA is negative. It goes back and forth about every year or two.) My rib cage stays swollen and inflamed with knots, by the way. (I saw this mentioned.) God bless you all... sorry I haven't kept up or posted in a while, but I've been miserable the past few months. You're all ALWAYS in my prayers though!!!!Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Thanks so much Rogene. I'm wondering if it is would be helpful for raynaud's? Has your daughter ever used it to treat that?Thanks again.LaurieOn Nov 28, 2006, at 12:38 PM, Rogene S wrote:My daughter uses infrared with Azheimer's patients. Sometimes it's tough to know when they have aproblem - but she's seen patients go from wheelchairs to walking around in as little as five treatments, . . no placebo effect there! A study showed improvement in peripheral neuropathy in as little as one treatment. What's sad is that, because infrared therapy was catching on so with the senior crown, they quit covering treatments under Medicad. Because they benefit the patients so much, my daughter uses it anyway. . . Long standing diabetic wounds, bed sores and peripheral neuropathy respond well also. What's nice is that there are no limitations on number of treatments, and it's passive so a patient doesn't need to be attended during treatment. That's not to say a pad can be put on and forgot though (as in sleeping on a pad) . . .Little red spots will start occuring if it's left on one spot too long. You'd do well to read up in the benefits of infrared therapy online. I love my FAR infrared sauna . . . Whole body treatments. - much more expensive than pads or lights. I'd recommend the sauna over the pads for anyone who can afford it and who doesn't get sick from heat. Since my cast is off, I'll be using it daily to speed the healing of my arm. Rogenejumpony <ltolkincomcast (DOT) net> wrote:Hi Rogene,Can you tell us anything else about the infrared heating pads. What kinds of ailments does your daughter think they help? Does it really work better than a regular heating pad? They are pretty pricey, so I'm just checking before splurging.ThanksLaurieOn Nov 28, 2006, at 9:51 AM, Lea wrote: Thank you dear Rogene: We were looking for a new heating pad, and because of your advice, we will look for this type. has to go our later today and he will look for the infrared. I hope that we can find it in one of the stores. Honey, so happy that you have the cast off...stay well, love always.....Lea~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: CFS is real!>> Thank you for this, Kenda. We have a doctor here who won a case in court regarding CFS. I am not sure if I have CFS, but for me it is the pulling down pain in my back rib cage that destroys my life. I was up at 5AM, and now my day is over because I can no longer sit. It feels like something is pulling my upper back downward! The pain is so bad, and we are at a loss as to what is causing this...I have had this condition for so many years. The doctors have told me that I have chest wall damage from the ruptured implants. Do any of you have this condition?> > I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome at the same time as my fibromyalgia diagnosis -around age 24. Just like the prior post implied... people see you go from being a healthy, active person to being cripled. The fatigue is so great, it not only affects your physical capabilities, but you can't even TALK enough to maintain a social life. I can't even talk on the phone with my friends or family. I can become exhausted carrying on a conversation for more than 10 minutes. If I converse 30-60 minutes -I'm ready for bed. When you get tired, your throat gets sore and your eyes swell up. (I'm pretty sure that's in keeping with the CFS symptoms---but I know they are for sure my symptoms I notice.) I was recently diagnosed with malnurishment due to malabsorption in my stomach, and this on top of the CFS has caused me to keep a sore throat for months. It feels like strep, but isn't---it's from pure exhaustion.It's hard for people to understand. I have friends and family who think "OK, I understand you don't feel like going out and doing anything because you don't feel well ---so I'll just come visit you... or we can just go have dinner." They can't comprehend that even TALKING to them creates exhaustion.Life becomes a constant struggle for energy.I haven't posted for a while, but my other diagnosis are: Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, my ANA is negative. It goes back and forth about every year or two.) My rib cage stays swollen and inflamed with knots, by the way. (I saw this mentioned.) God bless you all... sorry I haven't kept up or posted in a while, but I've been miserable the past few months. You're all ALWAYS in my prayers though!!!!Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 She's never mentioned using infrared for Raynaud's. You might check www.magnesiumresearchlab.com . . . There appears to be a connection between Erythromelalgia (which I have if I don't get enough Magnesium) and Raynauds. This doctor saved me from becoming disabled! jumpony <ltolkin@...> wrote: Thanks so much Rogene. I'm wondering if it is would be helpful for raynaud's? Has your daughter ever used it to treat that? Thanks again. Laurie On Nov 28, 2006, at 12:38 PM, Rogene S wrote: My daughter uses infrared with Azheimer's patients. Sometimes it's tough to know when they have aproblem - but she's seen patients go from wheelchairs to walking around in as little as five treatments, . . no placebo effect there! A study showed improvement in peripheral neuropathy in as little as one treatment. What's sad is that, because infrared therapy was catching on so with the senior crown, they quit covering treatments under Medicad. Because they benefit the patients so much, my daughter uses it anyway. . . Long standing diabetic wounds, bed sores and peripheral neuropathy respond well also. What's nice is that there are no limitations on number of treatments, and it's passive so a patient doesn't need to be attended during treatment. That's not to say a pad can be put on and forgot though (as in sleeping on a pad) . . .Little red spots will start occuring if it's left on one spot too long. You'd do well to read up in the benefits of infrared therapy online. I love my FAR infrared sauna . . . Whole body treatments. - much more expensive than pads or lights. I'd recommend the sauna over the pads for anyone who can afford it and who doesn't get sick from heat. Since my cast is off, I'll be using it daily to speed the healing of my arm. Rogenejumpony <ltolkincomcast (DOT) net> wrote: Hi Rogene, Can you tell us anything else about the infrared heating pads. What kinds of ailments does your daughter think they help? Does it really work better than a regular heating pad? They are pretty pricey, so I'm just checking before splurging. Thanks Laurie On Nov 28, 2006, at 9:51 AM, Lea wrote: Thank you dear Rogene: We were looking for a new heating pad, and because of your advice, we will look for this type. has to go our later today and he will look for the infrared. I hope that we can find it in one of the stores. Honey, so happy that you have the cast off...stay well, love always.....Lea ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: CFS is real! >> Thank you for this, Kenda. We have a doctor here who won a case in court regarding CFS. I am not sure if I have CFS, but for me it is the pulling down pain in my back rib cage that destroys my life. I was up at 5AM, and now my day is over because I can no longer sit. It feels like something is pulling my upper back downward! The pain is so bad, and we are at a loss as to what is causing this...I have had this condition for so many years. The doctors have told me that I have chest wall damage from the ruptured implants. Do any of you have this condition?> > I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome at the same time as my fibromyalgia diagnosis -around age 24. Just like the prior post implied... people see you go from being a healthy, active person to being cripled. The fatigue is so great, it not only affects your physical capabilities, but you can't even TALK enough to maintain a social life. I can't even talk on the phone with my friends or family. I can become exhausted carrying on a conversation for more than 10 minutes. If I converse 30-60 minutes -I'm ready for bed. When you get tired, your throat gets sore and your eyes swell up. (I'm pretty sure that's in keeping with the CFS symptoms---but I know they are for sure my symptoms I notice.) I was recently diagnosed with malnurishment due to malabsorption in my stomach, and this on top of the CFS has caused me to keep a sore throat for months. It feels like strep, but isn't---it's from pure exhaustion.It's hard for people to understand. I have friends and family who think "OK, I understand you don't feel like going out and doing anything because you don't feel well ---so I'll just come visit you... or we can just go have dinner." They can't comprehend that even TALKING to them creates exhaustion.Life becomes a constant struggle for energy.I haven't posted for a while, but my other diagnosis are: Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, my ANA is negative. It goes back and forth about every year or two.) My rib cage stays swollen and inflamed with knots, by the way. (I saw this mentioned.) God bless you all... sorry I haven't kept up or posted in a while, but I've been miserable the past few months. You're all ALWAYS in my prayers though!!!!Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 thanks so much. I'll still see if i can find any info on using infrared for raynaud's.Thanks for the website.On Nov 28, 2006, at 6:43 PM, Rogene S wrote:She's never mentioned using infrared for Raynaud's. You might check www.magnesiumresearchlab.com . . . There appears to be a connection between Erythromelalgia (which I have if I don't get enough Magnesium) and Raynauds. This doctor saved me from becoming disabled! jumpony <ltolkincomcast (DOT) net> wrote:Thanks so much Rogene. I'm wondering if it is would be helpful for raynaud's? Has your daughter ever used it to treat that?Thanks again.LaurieOn Nov 28, 2006, at 12:38 PM, Rogene S wrote:My daughter uses infrared with Azheimer's patients. Sometimes it's tough to know when they have aproblem - but she's seen patients go from wheelchairs to walking around in as little as five treatments, . . no placebo effect there! A study showed improvement in peripheral neuropathy in as little as one treatment. What's sad is that, because infrared therapy was catching on so with the senior crown, they quit covering treatments under Medicad. Because they benefit the patients so much, my daughter uses it anyway. . . Long standing diabetic wounds, bed sores and peripheral neuropathy respond well also. What's nice is that there are no limitations on number of treatments, and it's passive so a patient doesn't need to be attended during treatment. That's not to say a pad can be put on and forgot though (as in sleeping on a pad) . . .Little red spots will start occuring if it's left on one spot too long. You'd do well to read up in the benefits of infrared therapy online. I love my FAR infrared sauna . . . Whole body treatments. - much more expensive than pads or lights. I'd recommend the sauna over the pads for anyone who can afford it and who doesn't get sick from heat. Since my cast is off, I'll be using it daily to speed the healing of my arm. Rogenejumpony <ltolkincomcast (DOT) net> wrote:Hi Rogene,Can you tell us anything else about the infrared heating pads. What kinds of ailments does your daughter think they help? Does it really work better than a regular heating pad? They are pretty pricey, so I'm just checking before splurging.ThanksLaurieOn Nov 28, 2006, at 9:51 AM, Lea wrote: Thank you dear Rogene: We were looking for a new heating pad, and because of your advice, we will look for this type. has to go our later today and he will look for the infrared. I hope that we can find it in one of the stores. Honey, so happy that you have the cast off...stay well, love always.....Lea~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` Re: CFS is real!>> Thank you for this, Kenda. We have a doctor here who won a case in court regarding CFS. I am not sure if I have CFS, but for me it is the pulling down pain in my back rib cage that destroys my life. I was up at 5AM, and now my day is over because I can no longer sit. It feels like something is pulling my upper back downward! The pain is so bad, and we are at a loss as to what is causing this...I have had this condition for so many years. The doctors have told me that I have chest wall damage from the ruptured implants. Do any of you have this condition?> > I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome at the same time as my fibromyalgia diagnosis -around age 24. Just like the prior post implied... people see you go from being a healthy, active person to being cripled. The fatigue is so great, it not only affects your physical capabilities, but you can't even TALK enough to maintain a social life. I can't even talk on the phone with my friends or family. I can become exhausted carrying on a conversation for more than 10 minutes. If I converse 30-60 minutes -I'm ready for bed. When you get tired, your throat gets sore and your eyes swell up. (I'm pretty sure that's in keeping with the CFS symptoms---but I know they are for sure my symptoms I notice.) I was recently diagnosed with malnurishment due to malabsorption in my stomach, and this on top of the CFS has caused me to keep a sore throat for months. It feels like strep, but isn't---it's from pure exhaustion.It's hard for people to understand. I have friends and family who think "OK, I understand you don't feel like going out and doing anything because you don't feel well ---so I'll just come visit you... or we can just go have dinner." They can't comprehend that even TALKING to them creates exhaustion.Life becomes a constant struggle for energy.I haven't posted for a while, but my other diagnosis are: Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, my ANA is negative. It goes back and forth about every year or two.) My rib cage stays swollen and inflamed with knots, by the way. (I saw this mentioned.) God bless you all... sorry I haven't kept up or posted in a while, but I've been miserable the past few months. You're all ALWAYS in my prayers though!!!!Brigite Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Good question, I'd like to know that too. raynaud's runs in my family. > >> Dearest Brigite: > >> > >> I am so sorry that you have CFS. I used to be just like you. > >> Talking on the telephone was the most difficult task, and > >> had to take my calls. After so many years, I still do not have the > >> strength to talk for very long. When I finish a call, my face is > >> bright red and I feel stressed. Another thing that seems to take > >> my energy is talking to someone in our home. Having guests in our > >> home is lovely, but it always leaves me drained. 's boss and > >> his wife are coming on December 9, and I am getting stressed over > >> this. We love them, and they are special friends, but it still > >> kills me. > >> > >> Honey, what kind of breast implants do you have? We all hope that > >> you will find the strength to have them removed, because you are > >> so young. This is heartbreaking for me to hear that you are > >> suffering so much. The pain in my chest wall could be > >> costochondritis, which is inflammation. I cannot take anti- > >> inflammatory drugs because I am on Coumidan. The only way that I > >> get any relief is by going to bed and resting on a heating pad. > >> The other day, I did all the walks, and that is what made this > >> condition worse. We have so much snow this year, and I love > >> shovelling the walks. > >> > >> Please let us know when you decide to have your implants removed, > >> we will all be here for you. This is a difficult decision to make, > >> but just know that we are here for you...love always.....Lea > >> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~```` > >> Re: CFS is real! > >> > >> --- In , " Lea " <devans@> wrote: > >> > > >> > Thank you for this, Kenda. We have a doctor here who won a case > >> in court regarding CFS. I am not sure if I have CFS, but for me it is > >> the pulling down pain in my back rib cage that destroys my life. I > >> was up at 5AM, and now my day is over because I can no longer sit. It > >> feels like something is pulling my upper back downward! The pain is > >> so bad, and we are at a loss as to what is causing this...I have had > >> this condition for so many years. The doctors have told me that I > >> have chest wall damage from the ruptured implants. Do any of you have > >> this condition? > >> > > >> > > >> > >> I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome > >> at the same time as my fibromyalgia diagnosis -around age 24. Just > >> like the prior post implied... people see you go from being a > >> healthy, active person to being cripled. The fatigue is so great, it > >> not only affects your physical capabilities, but you can't even TALK > >> enough to maintain a social life. I can't even talk on the phone with > >> my friends or family. I can become exhausted carrying on a > >> conversation for more than 10 minutes. If I converse 30-60 minutes - > >> I'm ready for bed. When you get tired, your throat gets sore and your > >> eyes swell up. (I'm pretty sure that's in keeping with the CFS > >> symptoms---but I know they are for sure my symptoms I notice.) I was > >> recently diagnosed with malnurishment due to malabsorption in my > >> stomach, and this on top of the CFS has caused me to keep a sore > >> throat for months. It feels like strep, but isn't---it's from pure > >> exhaustion. > >> > >> It's hard for people to understand. I have friends and family who > >> think " OK, I understand you don't feel like going out and doing > >> anything because you don't feel well ---so I'll just come visit > >> you... or we can just go have dinner. " They can't comprehend that > >> even TALKING to them creates exhaustion. > >> > >> Life becomes a constant struggle for energy. > >> > >> I haven't posted for a while, but my other diagnosis are: > >> Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, > >> Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my > >> labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, > >> my ANA is negative. It goes back and forth about every year or two.) > >> > >> My rib cage stays swollen and inflamed with knots, by the way. (I saw > >> this mentioned.) > >> > >> God bless you all... sorry I haven't kept up or posted in a while, > >> but I've been miserable the past few months. You're all ALWAYS in my > >> prayers though!!!! > >> > >> Brigite > >> > >> > >> > >> > >> > >> > >> > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 Brig! I wondered where you were. It is good to hear from you. I am so sorry you have had a terrible time lately. --- In , Crocker <dwcrn@...> wrote: > > Brigitte, do I understand you still have implants? And that there are > issues about a decision to have them out? What is your thinking about > the cause of your illness? The AI disorders, Lupus and Sjogren's are > not the usual ones where the cause isn't known, because the fact that > you have implants means that that is the cause of the auto- immunity that > has shown in your symptoms and in your positive lab work. Many of the > symptoms of AI conditions are like those of fibromyalgia and/or CFS, and > so I don't know how you regard your symptoms, as due to Fibro or CFS, or > Lupus or Sjogren's? Are you being treated for fibromyalgia? Or, are > they treating your Lupus/Sjogren's? The treatments are quite > different. That's the reason I ask. You sound as if you are absolutely > miserable. So, I'm wondering about treatment, not to be nosy, but only > because I think there should be something that would help with some of > your symptoms. 'Though I must say when I was at my sickest, it seemed > as if medication was pretty limited in its ability to help me feel much > better, but it did keep me from having damage done to my connective > tissues, organs, etc., while my body was detoxing and healing from > having had my implants removed. I don't mean to be intrusive, > Brigitte...you say you don't feel much like posting right now. But let > us know how you are when you can. Keeping you in my thoughts, ~~ > > > >>> > > >>> I do... I am 31 now, but was diagnosed with Chronic Fatigue Syndrome > > >>> at the same time as my fibromyalgia diagnosis -around age 24. Just > > >>> like the prior post implied... people see you go from being a > > >>> healthy, active person to being cripled. The fatigue is so great, it > > >>> not only affects your physical capabilities, but you can't even TALK > > >>> enough to maintain a social life. I can't even talk on the phone > > >>> with > > >>> my friends or family. I can become exhausted carrying on a > > >>> conversation for more than 10 minutes. If I converse 30-60 minutes - > > >>> I'm ready for bed. When you get tired, your throat gets sore and > > >>> your > > >>> eyes swell up. (I'm pretty sure that's in keeping with the CFS > > >>> symptoms---but I know they are for sure my symptoms I notice.) I was > > >>> recently diagnosed with malnurishment due to malabsorption in my > > >>> stomach, and this on top of the CFS has caused me to keep a sore > > >>> throat for months. It feels like strep, but isn't---it's from pure > > >>> exhaustion. > > >>> > > >>> It's hard for people to understand. I have friends and family who > > >>> think " OK, I understand you don't feel like going out and doing > > >>> anything because you don't feel well ---so I'll just come visit > > >>> you... or we can just go have dinner. " They can't comprehend that > > >>> even TALKING to them creates exhaustion. > > >>> > > >>> Life becomes a constant struggle for energy. > > >>> > > >>> I haven't posted for a while, but my other diagnosis are: > > >>> Fibromyalgia, Pseudotumor Cerebri, Cluster Headaches, Migraines, > > >>> Hashimoto's Disease, Hypothyroidism, PID, Polycystic Ovaries, and my > > >>> labs go back and forth for Lupus and Sjogren's Syndrome. (Currenly, > > >>> my ANA is negative. It goes back and forth about every year or two.) > > >>> > > >>> My rib cage stays swollen and inflamed with knots, by the way. (I > > >>> saw > > >>> this mentioned.) > > >>> > > >>> God bless you all... sorry I haven't kept up or posted in a while, > > >>> but I've been miserable the past few months. You're all ALWAYS in my > > >>> prayers though!!!! > > >>> > > >>> Brigite > > >>> > Quote Link to comment Share on other sites More sharing options...
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