Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 I would be interested in hearing from everyone who is using LDN for fibromyalgia. I plan to get my wife on it for her fibromyalgia. Course, if it works wonders on her, she'll probably have to go back to work because she'll loose her disability benefits. Oh well, there's usually some little bad comes along with all good things. Noland ----- Original Message ----- From: " Gloria " <gjcren@...> <low dose naltrexone > Sent: Tuesday, July 08, 2003 2:27 PM Subject: [low dose naltrexone] Fibromyalgia > Jim, > > We haven't heard much from you lately and was wondering how you are > doing. I have been on LDN for 3 1/2 mo. now and am doing much > better. Still have a flare now and then but not as bad or last as > long as in the past. Usually brought on by my avid gardening (I > don't know when to quit) - I am my own worst enemy! > > I still have some sleep disturbance, usually around 2 a.m. - I wake > up in pain and then in about an hour the pain is gone and I go back > to sleep. When I wake up I'm not stiff like I use to be before LDN. > > I haven't gone back to my doctor since I started taking LDN and will > do so soon. My main question is how long do we have to take this > drug? The rest of our lives? What is the downside of taking this > drug 20 or 30 years? Does anyone know? > > Hope all is well and that you are enjoying great benefits from your > LDN. > > Gloria > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 I would check with the doc who prescribed it for you as I have never heard those symptoms from users in this group and I have never had anything similar to that. The only things I've read about were increased stiffness in the legs and insomnia. On Fri, 11 Jul 2003 genac68@... wrote: > Hi, > I'm new to the group and was wondering if anyone has fibromyalgia and cfs > trying naltrexone. > Many say there are no side effects but I have noticed a face rash -more > tiredness-an some diahreah. I've only taken four doses of 4.5. > Thanks, > Gena > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 This is very interesting. It does not sound like LDN. Who is your pharmacy? They may not have compounded it correctly. To determine if it's the LDN, I'd not take any for a day or two to see if the problems clear up. After that start back at a much lower dose to see how you react. You might be an individual who reacts to it for some unknown reason. Fibromyalgia patients do strange things at times. I know because my wife has fibro. She reacts to things that are totally mystifying to me and is allergic to everything it seems. I'm afraid to have her tested for fear they would determine she's allergic to me. ha Noland ----- Original Message ----- From: genac68@... low dose naltrexone Sent: Friday, July 11, 2003 1:03 PM Subject: [low dose naltrexone] fibromyalgia Hi,I'm new to the group and was wondering if anyone has fibromyalgia and cfs trying naltrexone.Many say there are no side effects but I have noticed a face rash -more tiredness-an some diahreah. I've only taken four doses of 4.5.Thanks,Gena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 My wife is on a low dose of ambien and it had weird effects on her but I can't recall what they were. She is not on LDN yet because she is right in the middle of experimenting with another thing that I believe isn't going to work. I expect to have her on LDN by the first of the month, tho. Noland ----- Original Message ----- From: Genac68@... rangeus50@... Sent: Friday, July 11, 2003 2:24 PM Subject: Re: [low dose naltrexone] fibromyalgia Hi Noland,I did stop the naltrexone for a few days to see what is going on. I tried it again last night and am very tired but the rash doesn't seem as bad.I do react strangely to medicine. If I take ambiem for instance, it doesn't make me fall asleep-but it gices me energy and helps with my pain-strange i know-Has your wife tried the ldn or does she react strange also?Gena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2003 Report Share Posted July 11, 2003 Were those side effects listed for 50 mg and higher dosages or 4.5 mg and lower. I'm aware there are a number of side effects for the higher dosages but didn't find any other than insomnia and leg stiffness for lower dosages. I'll have to run another search. Thanks Noland ----- Original Message ----- From: Genac68@... rangeus50@... Sent: Friday, July 11, 2003 2:25 PM Subject: Re: [low dose naltrexone] fibromyalgia Oh, byy the way-it is LDN-I had a phone appointment with Dr. Bihari and it comes compounded into 4.5 mg. naltrexone from his reccommended pharmacy-and-if u look up side effects on the net u will find several side effects.Gena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 Hi Gena, I have a two friends on ldn, who have both had diarea....just for the first few days though...and both on just 3mg. The rash could mean an allergy, though....so if that persists, you may have to stop. call your doc and let him/her look at it....maybe you just have measels....lol Good luck and I will pray you don't have to get off of the ldn. Hugs, Sally > Hi, > I'm new to the group and was wondering if anyone has fibromyalgia and cfs > trying naltrexone. > Many say there are no side effects but I have noticed a face rash -more > tiredness-an some diahreah. I've only taken four doses of 4.5. > Thanks, > Gena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2003 Report Share Posted July 12, 2003 I started on 3mg approx 8 weeks ago and for the first few days founds a marked difference in energy levels and balance. I also joined a gym at the same time which I now think was a mistake. I too got the leg stiffness but put it down to exercise (riding a recumbent bike) so I was unsure whether it was an effect of the LDN. With hindsight I should have given it a month or so to see the effects of LDN before starting at the gym. However, I was making good progress, increasing the length of time I could pedal straight off from 5 minutes to 10 then up to 20 mins in total with a few minutes rest in between. I then went on holiday, to Orlando in fact, at the same time increased my LDN dosage to 4.5mg after taking 3mg for a month as recommended by the doctor prescribing for me in the UK, but stopped all exercise and spent most of the time being pushed around the theme parks in my wheelchair. Although I can walk, from past experience, I knew I wouldn't be fit enough to use just my stick. I found that the leg stiffness increased to the point of night cramps in my calf muscles, my balance was worse and I became badly constipated. I thought that might just be due to a change of diet as I found it difficult to stick to my wheat free, dairy free regime but I stopped the LDN for 6 days and the symptoms disappeared. I have been reducing the content of the capsules so I guess I am now back on something like 3.5mg but the constipation has come back again although not quite so severe. Has anyone else had that problem? Apart from that I am feeling pretty good and I think slowly improving. I will start my visits to the gym again in a week or so to give the LDN a chance. I'll let you know how I get on. You might also like to check out my favourite website http://www.msrc.co.uk/ in particular the message board. There is now a regular group of contributors with a great deal of knowledge and experience of MS - it is where I first heard about LDN. My sister has fibro so I am interested to see the progress of anyone trying LDN to ease the pain. Usual problem though, I doubt very much whether she will get is prescribed by her own GP so I will make enquiries from my source for her. I'll keep you posted. Good luck to everyone, together we will beat the beastie! Sue ----- Original Message ----- From: Noland R. Durnell, P.E. Genac68@... Cc: low dose naltrexone Sent: Friday, July 11, 2003 10:36 PM Subject: Re: [low dose naltrexone] fibromyalgia Were those side effects listed for 50 mg and higher dosages or 4.5 mg and lower. I'm aware there are a number of side effects for the higher dosages but didn't find any other than insomnia and leg stiffness for lower dosages. I'll have to run another search. Thanks Noland ----- Original Message ----- From: Genac68@... rangeus50@... Sent: Friday, July 11, 2003 2:25 PM Subject: Re: [low dose naltrexone] fibromyalgia Oh, byy the way-it is LDN-I had a phone appointment with Dr. Bihari and it comes compounded into 4.5 mg. naltrexone from his reccommended pharmacy-and-if u look up side effects on the net u will find several side effects.Gena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 Dear Reader, An HSI member named Dave writes, "You talk about all kinds of things, but I have not seen anything on fibromyalgia. Any comments?" I haven't addressed fibromyalgia in the e-Alert in awhile, but here at HSI we have quite a few comments about fibromyalgia, beginning with one of the most frustrating aspects of this condition: Skepticism from the medical community. Many doctors tell their fibromyalgia patients that their aches and pains are "all in your head." As it turns out, those doctors are correct. But the point the doctors are missing is that the pain is real. -------------------------------------------- A secret in the brain -------------------------------------------- The typical symptoms of fibromyalgia syndrome (FMS) involve inflammation or pain in joints and muscles, often accompanied by fatigue. But such symptoms are impossible to measure, so FMS is often misdiagnosed as a form of arthritis, or the patient is told the pain is imagined. In the e-Alert "Get Real" (3/2/05), I told you about rheumatologist Clauw, M.D., of the University of Michigan, who used magnetic resonance imaging (MRI) to examine the area of the brain that registers pain. The images revealed an increase of blood flow when FMS patients were given low-pressure stimulus. The identical stimulus showed no change in the brains of control group subjects. The next step in Dr. Clauw's research was reported in the December 2006 issue of Current Pain and Headache Reports. In a review of neurobiological studies that examined pain, brain activity, and genetics in FMS patients, Dr. Clauw and his University of Michigan colleague, E. , Ph.D., confirmed the presence of abnormalities within central brain structures in subjects with FMS. Genetic research supports the theory that inherited gene mutations are the most probable cause of FMS brain abnormalities. In a University of Michigan press release, Dr. stated: "It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously." -------------------------------------------- Where to turn -------------------------------------------- FMS treatment generally focuses on pain management measures that include nonsteroidal anti-inflammatory drugs and antidepressants. Less conventional treatments utilize aerobic exercise, massage therapy, and dietary adjustments. But FMS patients have even more alternatives, which I've covered in these e-Alerts. "Get Real" (3/2/05) http://www.hsibaltimore.com/ealerts/ea200503/ea20050302.html Some years ago, doctors noticed that pregnant women with FMS often experienced temporary relief from their symptoms. The reason: relaxin, a naturally occurring hormone that becomes active during pregnancy. In addition to information about an oral form of relaxin (called Vitalaxin), this e-Alert also examines details about a botanical formula, shown to relieve the degenerative effects of FMS and lupus. "Getting the Point" (9/8/05) http://www.hsibaltimore.com/ealerts/ea200509/ea20050908.html Mayo Clinic researchers recruited 50 subjects with persistent FMS symptoms. Pain, fatigue, and anxiety were significantly relieved in subjects who received acupuncture. "Easy Green" (9/27/04) http://www.hsibaltimore.com/ealerts/ea200409/ea20040927.html Chlorella (a freshwater algae that contains a wide variety of vitamins, minerals, enzymes, and amino acids) stimulates immune system function and has been shown to improve pain, sleep, and anxiety in FMS patients. E-Alert Week in Review (3/18/05) http://www.hsibaltimore.com/ealerts/ea200503/ea20050318.html HSI members with FMS talk about natural therapies that have worked for them. Exercise combined with proper nutrition and key dietary supplements are just three of the FMS treatment secrets covered in "The Fibromyalgia Relief Handbook" – an excellent reference tool for fibromyalgia patients. You can find more information at this link: http://www.isecureonline.com/reports/680SFIBRO/E6EAH4DZ/?o=1232984 & u=2773395 & l=820186 & g=360 If you have family or friends with fibromyalgia, please share this e-Alert and let them know that the age of fibromyalgia skepticism is finally coming to an end. To Your Good Health, (www.hsibaltimore.com) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 in my world it is a PH problem and many have virus in the joints. ----- Original Message ----From: Alice <alichee@...> Sent: Thursday, November 29, 2007 7:33:19 AMSubject: [] Fibromyalgia Dear Reader, An HSI member named Dave writes, "You talk about all kinds of things, but I have not seen anything on fibromyalgia. Any comments?" I haven't addressed fibromyalgia in the e-Alert in awhile, but here at HSI we have quite a few comments about fibromyalgia, beginning with one of the most frustrating aspects of this condition: Skepticism from the medical community. Many doctors tell their fibromyalgia patients that their aches and pains are "all in your head." As it turns out, those doctors are correct. But the point the doctors are missing is that the pain is real. ------------ --------- --------- --------- ----- A secret in the brain ------------ --------- --------- --------- ----- The typical symptoms of fibromyalgia syndrome (FMS) involve inflammation or pain in joints and muscles, often accompanied by fatigue. But such symptoms are impossible to measure, so FMS is often misdiagnosed as a form of arthritis, or the patient is told the pain is imagined. In the e-Alert "Get Real" (3/2/05), I told you about rheumatologist Clauw, M.D., of the University of Michigan, who used magnetic resonance imaging (MRI) to examine the area of the brain that registers pain. The images revealed an increase of blood flow when FMS patients were given low-pressure stimulus. The identical stimulus showed no change in the brains of control group subjects. The next step in Dr. Clauw's research was reported in the December 2006 issue of Current Pain and Headache Reports. In a review of neurobiological studies that examined pain, brain activity, and genetics in FMS patients, Dr. Clauw and his University of Michigan colleague, E. , Ph.D., confirmed the presence of abnormalities within central brain structures in subjects with FMS. Genetic research supports the theory that inherited gene mutations are the most probable cause of FMS brain abnormalities. In a University of Michigan press release, Dr. stated: "It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously." ------------ --------- --------- --------- ----- Where to turn ------------ --------- --------- --------- ----- FMS treatment generally focuses on pain management measures that include nonsteroidal anti-inflammatory drugs and antidepressants. Less conventional treatments utilize aerobic exercise, massage therapy, and dietary adjustments. But FMS patients have even more alternatives, which I've covered in these e-Alerts. "Get Real" (3/2/05) http://www.hsibalti more.com/ ealerts/ea200503 /ea20050302. html Some years ago, doctors noticed that pregnant women with FMS often experienced temporary relief from their symptoms. The reason: relaxin, a naturally occurring hormone that becomes active during pregnancy. In addition to information about an oral form of relaxin (called Vitalaxin), this e-Alert also examines details about a botanical formula, shown to relieve the degenerative effects of FMS and lupus. "Getting the Point" (9/8/05) http://www.hsibalti more.com/ ealerts/ea200509 /ea20050908. html Mayo Clinic researchers recruited 50 subjects with persistent FMS symptoms. Pain, fatigue, and anxiety were significantly relieved in subjects who received acupuncture. "Easy Green" (9/27/04) http://www.hsibalti more.com/ ealerts/ea200409 /ea20040927. html Chlorella (a freshwater algae that contains a wide variety of vitamins, minerals, enzymes, and amino acids) stimulates immune system function and has been shown to improve pain, sleep, and anxiety in FMS patients. E-Alert Week in Review (3/18/05) http://www.hsibalti more.com/ ealerts/ea200503 /ea20050318. html HSI members with FMS talk about natural therapies that have worked for them. Exercise combined with proper nutrition and key dietary supplements are just three of the FMS treatment secrets covered in "The Fibromyalgia Relief Handbook" – an excellent reference tool for fibromyalgia patients. You can find more information at this link: http://www.isecureo nline.com/ reports/680SFIBR O/E6EAH4DZ/ ?o=1232984 & u=2773395 & l=820186 & g=360 If you have family or friends with fibromyalgia, please share this e-Alert and let them know that the age of fibromyalgia skepticism is finally coming to an end. To Your Good Health, (www.hsibaltimore. com) Be a better pen pal. Text or chat with friends inside . See how. Quote Link to comment Share on other sites More sharing options...
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