Guest guest Posted March 30, 1999 Report Share Posted March 30, 1999 You're welcome, Stania. Hope some of it is helpful. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 Hello Gail, today I went throug the papers you have sent and they are very useful (all of them). I decided to get in touch with a company that would print such leaflets and booklets out for us and distribute them together with magazines for health professionals they produce. If it does not work we would ask for a grant for 2000. There is not any National foundation and I and the head of our support group seem to be the only ones in my country who try to educate people. I have found there the " change the name " form, would it help if I send some from CFS sufferers from my country? Bye, Stania -----Pùvodní zpráva----- Od: GAILRONDA@... <GAILRONDA@...> Komu: onelist <onelist> Datum: 30. bøezna 1999 20:25 Pøedmìt: Re: thanks for info >From: GAILRONDA@... > >You're welcome, Stania. Hope some of it is helpful. >Gail > >------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 We can't use the name change forms from other countries since it's our own that we're trying to address and who's turned it into such a trivial name. But feel free to copy all the information and distribute it wherever you can. That's how education gets done and progress will result! Also go to our website: http://www.cfidsfoundation.org for more information to print out. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 1999 Report Share Posted March 31, 1999 ok, Gail, thanks Stania -----Pùvodní zpráva----- Od: GAILRONDA@... <GAILRONDA@...> Komu: onelist <onelist> Datum: 31. bøezna 1999 23:31 Pøedmìt: Re: thanks for info >From: GAILRONDA@... > >We can't use the name change forms from other countries since it's our own >that we're trying to address and who's turned it into such a trivial name. >But feel free to copy all the information and distribute it wherever you can. >That's how education gets done and progress will result! Also go to our >website: http://www.cfidsfoundation.org for more information to print out. >Gail > >------------------------------------------------------------------------ >Come check out our brand new web site! > >Onelist: Making the Internet intimate >------------------------------------------------------------------------ >This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 One final stab in the dark....you could try eating bananas as I believe that leg pains and cramps can be caused by a lack of potassium. You never know, it might just work... Graham. At 16:19 23/06/2002, you wrote: >Thank you all for the info about the leg pain. >You guys are the best!!! > >It is so frustrating to have something like this, >and not know the cause. I will take advice and >not do sweets for a week. I don't drink soda, but >am wondering if coffee could be a culprit also. >(have about 2 cups a day) > >Back in 1979, when I ended up in the hospital >with the flare that sent me back to H--- with >this disease. (didn't know what it was yet then) >it started with *leg pain.* I had been in a no-med >remission since 1975. I was pregnant then in >'79, and lost the babe, and the temps. came back >along with everything else...so it was back to the > " drawing board. " The disease returned and never >left. > >Am not running fevers. Will be upping MTX tomorrow >also. > >Hoping everyone has a good day! >~~tricia~~ > >p.s. Marilyn, thank you for letting us know about Patty. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Thank you for the hint Graham, Actually, I used to eat a whole banana every morning, but lately have not. The store where we buy our groceries is shipping them in from somewhere else, and they just don't taste good like they used to. Though I *do* take a Magnesium/Potassium supplement twice a day....perhaps more potassium is needed from real food...?? Will be increasing the mtx tomorrow, perhaps that might even help. Just to know the cause of the pain would be nice. It gets to the point where a person gets so frustrated with it all. Your friend, tricia -- Re: " thanks for info " One final stab in the dark....you could try eating bananas as I believe that leg pains and cramps can be caused by a lack of potassium. You never know, it might just work... Graham. At 16:19 23/06/2002, you wrote: >Thank you all for the info about the leg pain. >You guys are the best!!! > >It is so frustrating to have something like this, >and not know the cause. I will take advice and >not do sweets for a week. I don't drink soda, but >am wondering if coffee could be a culprit also. >(have about 2 cups a day) > >Back in 1979, when I ended up in the hospital >with the flare that sent me back to H--- with >this disease. (didn't know what it was yet then) >it started with *leg pain.* I had been in a no-med >remission since 1975. I was pregnant then in >'79, and lost the babe, and the temps. came back >along with everything else...so it was back to the > " drawing board. " The disease returned and never >left. > >Am not running fevers. Will be upping MTX tomorrow >also. > >Hoping everyone has a good day! >~~tricia~~ > >p.s. Marilyn, thank you for letting us know about Patty. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 Hi , I also had the restless leg symptoms, with involuntary twitches and muscle pulls especially at night. I also had quite a bit of nerve pain and I asked the ortho surgeon if I could try Neutrontin medication as I had tried it before (many uses, but often used in diabetic nerve pain). Surgeon thought it was a good idea and gave me the okay. It really helped me a lot. I still have symptoms every once in while but for the most part it's much better!!! Hopefully it is an option you can think about with your doctor too. Let's see my recovery is good, but slow. My husbands patience has been gone for weeks and my stress level is very high. I am an easy going person most of the time, but this has been one of the most challenging situations I've faced, both with my knee experience and my husband caring for me. I may need to make a move, we'll see. Love & prayers to all. Jean Marie Salanoa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2011 Report Share Posted January 22, 2011 Marie, I can totally relate to the husband side of thing. mine never takes any time off to help me. my mother does it all. -- Re: thanks for info Hi , I also had the restless leg symptoms, with involuntary twitches and muscle pulls especially at night. I also had quite a bit of nerve pain and I asked the ortho surgeon if I could try Neutrontin medication as I had tried it before (many uses, but often used in diabetic nerve pain). Surgeon thought it was a good idea and gave me the okay. It really helped me a lot. I still have symptoms every once in while but for the most part it's much better!!! Hopefully it is an option you can think about with your doctor too. Let's see my recovery is good, but slow. My husbands patience has been gone for weeks and my stress level is very high. I am an easy going person most of the time, but this has been one of the most challenging situations I've faced, both with my knee experience and my husband caring for me. I may need to make a move, we'll see. Love & prayers to all. Jean Marie Salanoa Quote Link to comment Share on other sites More sharing options...
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