Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 I've been having pain all over, can barely walk, get up out of my chair has this happened to anyone else, if so can you tell me what you found to help or what was causing it. Kimber, One of the biggest issues is wide spread body pain. A lot of it is the systemic inflammation, - aka sarcoid-induced arthritis. What I've had make a huge difference was when I started taking MSM powder. I get it from PUREMSM.COM. I use 1 heaping tsp in 1/4 c water, and will use it 2-3 x daily. The powder is immediately assimiliated, so within 10 mins my pain level has decreased. You can get capsules also-- it just takes longer for your body to break down the gel cap. The other issues with pain - for me-- was dehydration. Because of the systemic inflammation-- I run a fever daily. This was keeping me dehydrated, so I've had to really keep track of what I drink. Soda's, Coffee, and black tea all are high in caffeine. This actually dehydrates, which makes us hurt more. Herbal teas, green tea and water as well as juices- STAY AWAY FROM THOSE WITH HIGH FRUCTOSE CORN SYRUP-- are all good choices. The other pain inducer is sugar. Refined sugar products, cake, ice cream, cookies, candy-- make our blood sugar skyrocket, and the neuropathy that follows is hell. If you can SLOWLY eliminate these from your diet, you'll be so much more comfortable. Sadly, if you are unable to move and get your body to stretch out a bit-- that will help also. GENTLE yoga moves, Tai Chi, arm raises w/o weight, even while sitting in a chair will help with your pain. It's baby steps-- but at least your body is moving-- and you will get stronger. Some of the PBS (Public Broadcasting Stations) have a program that is SIT & BE FIT. This is such an excellent program for those of us that can't do more than that. It is all a start-- and when you do the simple exercises even 2 or 3x a week-- you do feel better. I've found that I didn't have to spend money on exercise equipment or hand weights, etc-- I just grab a 1 pound package of spaghetti, then graduate to a can of soup, etc-- it works well, and you're not out additional money. One word of caution-- if you have pulmonary sarcoidosis-- you want to remember that aerobics is not a good idea. To make your heart work harder is to make your lungs work harder and if you have advanced sarc (Stage 3 or 4)- you may fight a problem with becoming desaturated. This means that your body isn't getting enough oxygen- and will slow down getting the oxygen to your hands and feet- as it needs to save it for your organs. What you notice is that your hands and feet and legs- are becoming more numb. If this does happen-- just slow down, sit down and take some deep slow breathes. This will bring your oxygen levels in your bloodstream back up-- and the numbness goes away. You would want to tell your MD about this-- as you may need supplemental oxygen when you are doing something that takes extra energy. Take care, and Happy Thanksgiving, Tracie NS Co-owner/moderatorCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2007 Report Share Posted November 21, 2007 HI Kimber, Pain all over as in nerve or joints? I find that for the joint pain the MSM is a have to have, if I forget a dose I know it, I take the tablet but know you can get it in powder form too, as for the nerve pain, for me it’s heat and aspirin, mostly heat, I sit in my chair with a heating blanket on Hi, and a heating pad behind my back, when my husband sits with me, he gets so hot, then we are dog sitting, kind of, a cute little Dodson (? Spelling), and she sits on our laps, she like the heat and gives me even more heat, actually I think 3 of those little doggies would be perfect, one on each side and one In the lap, man I could generate the house in heat, of course then there’s the feeding, letting them outside or cleaning up L, there’s always a catch! Many blessings for a pain free Thanksgiving, and then you would have one more thing to be thankful about! Marla Marla Bramer Independent Beauty Consultant Kay cosmetics mbramer@... www.marykay.com From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of kimber31_1963 Sent: Wednesday, November 21, 2007 12:21 AM To: Neurosarcoidosis Subject: its been a while HI all, its been a while since I've posted in and out of hospital for various reasons, mostly mental health ones. Lately I've been having pain all over, can barely walk, get up out of my chair has this happened to anyone else, if so can you tell me what you found to help or what was causing it. Hope all are doing well and you all have a very happy Thanksgiving. I'm having one, my daughter who hasn't lived with me for the last 6 yrs is here for the holiday, so I have something to be thankful for. God Bless, Kimber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Hi Kimber, For the pain all over, my dr. prescribed a Duragesic Fentanyl Patch. It's a patch that stays on your arm for 72 hrs. to help control the pain. I have been on it for a couple of years now and have felt a lot of relief being on it. Just a thought.... Debbie Co-Moderatorkimber31_1963 wrote: HI all, its been a while since I've posted in and out of hospital for various reasons, mostly mental health ones.Lately I've been having pain all over, can barely walk, get up out of my chair has this happened to anyone else, if so can you tell me what you found to help or what was causing it.Hope all are doing well and you all have a very happy Thanksgiving. I'm having one, my daughter who hasn't lived with me for the last 6 yrs is here for the holiday, so I have something to be thankful for.God Bless, Kimber~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2007 Report Share Posted November 25, 2007 Hi Kimber, For the pain all over, my dr. prescribed a Duragesic Fentanyl Patch. It's a patch that stays on your arm for 72 hrs. to help control the pain. I have been on it for a couple of years now and have felt a lot of relief being on it. Just a thought.... Debbie Co-Moderatorkimber31_1963 wrote: HI all, its been a while since I've posted in and out of hospital for various reasons, mostly mental health ones.Lately I've been having pain all over, can barely walk, get up out of my chair has this happened to anyone else, if so can you tell me what you found to help or what was causing it.Hope all are doing well and you all have a very happy Thanksgiving. I'm having one, my daughter who hasn't lived with me for the last 6 yrs is here for the holiday, so I have something to be thankful for.God Bless, Kimber~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME CHATROOM LINK: http://www.emxpc.net/chat/index.php Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2007 Report Share Posted November 26, 2007 Thanks for the thought have tried the fentanyl patches they actually made my pain worse. One month had to go in and get 15 demerol injections to try to help control the pain more. Am on oxcontin now with oxycodone for breakthrough pain. Again thanks for the tip. Kimber > HI all, its been a while since I've posted in and out of hospital for > various reasons, mostly mental health ones. > > Lately I've been having pain all over, can barely walk, get up out of > my chair has this happened to anyone else, if so can you tell me what > you found to help or what was causing it. > > Hope all are doing well and you all have a very happy Thanksgiving. I'm > having one, my daughter who hasn't lived with me for the last 6 yrs is > here for the holiday, so I have something to be thankful for. > > God Bless, > > Kimber > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2007 Report Share Posted November 26, 2007 Thanks for the thought have tried the fentanyl patches they actually made my pain worse. One month had to go in and get 15 demerol injections to try to help control the pain more. Am on oxcontin now with oxycodone for breakthrough pain. Again thanks for the tip. Kimber > HI all, its been a while since I've posted in and out of hospital for > various reasons, mostly mental health ones. > > Lately I've been having pain all over, can barely walk, get up out of > my chair has this happened to anyone else, if so can you tell me what > you found to help or what was causing it. > > Hope all are doing well and you all have a very happy Thanksgiving. I'm > having one, my daughter who hasn't lived with me for the last 6 yrs is > here for the holiday, so I have something to be thankful for. > > God Bless, > > Kimber > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Kimber, I'm sorry to hear the fentanyl patches didn't work for you. I hope the oxycontin works for you. It's terrible to be in so much pain you can't get up. Take care, Debbie T. Co-Moderator Re: its been a whileThanks for the thought have tried the fentanyl patches they actually made my pain worse. One month had to go in and get 15 demerol injections to try to help control the pain more. Am on oxcontin now with oxycodone for breakthrough pain.Again thanks for the tip.Kimber> HI all, its been a while since I've posted in and out of hospital for > various reasons, mostly mental health ones.> > Lately I've been having pain all over, can barely walk, get up out of > my chair has this happened to anyone else, if so can you tell me what > you found to help or what was causing it.> > Hope all are doing well and you all have a very happy Thanksgiving. I'm > having one, my daughter who hasn't lived with me for the last 6 yrs is > here for the holiday, so I have something to be thankful for.> > God Bless, > > Kimber> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2007 Report Share Posted December 2, 2007 Kimber, I'm sorry to hear the fentanyl patches didn't work for you. I hope the oxycontin works for you. It's terrible to be in so much pain you can't get up. Take care, Debbie T. Co-Moderator Re: its been a whileThanks for the thought have tried the fentanyl patches they actually made my pain worse. One month had to go in and get 15 demerol injections to try to help control the pain more. Am on oxcontin now with oxycodone for breakthrough pain.Again thanks for the tip.Kimber> HI all, its been a while since I've posted in and out of hospital for > various reasons, mostly mental health ones.> > Lately I've been having pain all over, can barely walk, get up out of > my chair has this happened to anyone else, if so can you tell me what > you found to help or what was causing it.> > Hope all are doing well and you all have a very happy Thanksgiving. I'm > having one, my daughter who hasn't lived with me for the last 6 yrs is > here for the holiday, so I have something to be thankful for.> > God Bless, > > Kimber> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME > CHATROOM LINK: http://www.emxpc.net/chat/index.php > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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