Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I also have severe chronic pain but have not found anything to relieve it. I'm sorry you are hurting too. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 i have severe pain does anyone else? jonathan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 , Welcome to Mitoldies! In answer to your question, some of us have limited pain and others deal with quite a bit of pain. Also, there is all different types of pain, muscle pain and cramping, neuropathy, etc. Do you have a mito dx? jonathan_pointer wrote: >i have severe pain does anyone else? >jonathan > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I have severe pain from various causes if I do not adhere to taking my meds when they are suppose to be taken and not over-do in the walking department. I use a power wheelchair outside my home. laurie > > Reply-To: > Date: Wed, 02 Jun 2004 19:42:24 -0000 > To: > Subject: pain > > i have severe pain does anyone else? > jonathan > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 yes complex i andthree,oxphos,myaopathyneruop,and now cancer i had a morphine pump inside me that helped but it broke a year ago. i am now on avinza the highest without me going back to a coma to help,thx for responding jon dgregori@...> wrote: , Welcome to Mitoldies! In answer to your question, some of us have limited pain and others deal with quite a bit of pain. Also, there is all different types of pain, muscle pain and cramping, neuropathy, etc. Do you have a mito dx? jonathan_pointer wrote: >i have severe pain does anyone else? >jonathan > > > > >Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > >Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 I am sorry to hear that you are dealing with that much pain. I assume you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain decreased after I started the cocktail and got better still when I increased my CoQ10 levels per my doctor's instructions. pointer wrote: >yes complex i andthree,oxphos,myaopathyneruop,and now cancer >i had a morphine pump inside me that helped but it broke a year ago. i am now on avinza the highest without me going back to a coma to help,thx for responding >jon > > > dgregori@...> wrote: >, > >Welcome to Mitoldies! In answer to your question, some of us have >limited pain and others deal with quite a bit of pain. Also, there is >all different types of pain, muscle pain and cramping, neuropathy, etc. > >Do you have a mito dx? > > > >jonathan_pointer wrote: > > > >>i have severe pain does anyone else? >>jonathan >> >> >> >> >>Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. >> >>Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi , I have Mitochondrial Myopathy " MERRF " Syndrome, and was wondering if this mito cocktail really works and how long does it take to get into your system. Sincerely, Sal Re: pain I am sorry to hear that you are dealing with that much pain. I assume you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain decreased after I started the cocktail and got better still when I increased my CoQ10 levels per my doctor's instructions. pointer wrote: >yes complex i andthree,oxphos,myaopathyneruop,and now cancer >i had a morphine pump inside me that helped but it broke a year ago. i am now on avinza the highest without me going back to a coma to help,thx for responding >jon > > > dgregori@...> wrote: >, > >Welcome to Mitoldies! In answer to your question, some of us have >limited pain and others deal with quite a bit of pain. Also, there is >all different types of pain, muscle pain and cramping, neuropathy, etc. > >Do you have a mito dx? > > > >jonathan_pointer wrote: > > > >>i have severe pain does anyone else? >>jonathan >> >> >> >> >>Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. >> >>Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Sal I am now working 8 years after a diagnosis and 23 years after starting my search. I am able to walk at home and ride an exercise bike when I can find the time. I would not be doing any of these things if it were not for the mito cocktail. It took several months and in some cases longer to get the right dosage. I knew when my dysmotility ended, that I was finally on enough CoQ10. When I had my last muscle biopsy, I went off the cocktail and felt terrible. I was even loosing my hair. That convinced me. My only recommendation is to work with a doctor on this, to introduce things slowly and to get to a dosage level that is right for you. Otherwise you are throwing your money away. It has also given me some control over this disease which helps me cope emotionally. laurie > > Reply-To: > Date: Wed, 2 Jun 2004 20:42:40 -0400 > To: > > Subject: Re: pain > > Hi , > > I have Mitochondrial Myopathy " MERRF " Syndrome, and was wondering if this mito > cocktail really works and how long does it take to get into your system. > > Sincerely, > Sal > Re: pain > > > I am sorry to hear that you are dealing with that much pain. I assume > you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain > decreased after I started the cocktail and got better still when I > increased my CoQ10 levels per my doctor's instructions. > > > > pointer wrote: > >> yes complex i andthree,oxphos,myaopathyneruop,and now cancer >> i had a morphine pump inside me that helped but it broke a year ago. i am now >> on avinza the highest without me going back to a coma to help,thx for >> responding >> jon >> >> >> dgregori@...> wrote: >> , >> >> Welcome to Mitoldies! In answer to your question, some of us have >> limited pain and others deal with quite a bit of pain. Also, there is >> all different types of pain, muscle pain and cramping, neuropathy, etc. >> >> Do you have a mito dx? >> >> >> >> jonathan_pointer wrote: >> >> >> >>> i have severe pain does anyone else? >>> jonathan >>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements contained herein >>> are not necessarily those of the list moderators. The author of this e mail >>> is entirely responsible for its content. List members are reminded of their >>> responsibility to evaluate the content of the postings and consult with >>> their physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends one is >>> automatically moderated or removed depending on the severity of the attack. >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Thanks for the tips Laurie, Its incredible how better I feel physically when working with these dumbbells.. I just work 3 times weekly 20 min. per session!! I use 5 pounds dumbbells so far so good I started 2 months ago. My Doctor gave me the ok as long as its light exercise and don't get to exhausted. I would not consider going to the GYM, all the people and noise kind of confusing as well as walking out of the Gym after exercising would not be too appropriate.. I guess there is nothing like home!! Sal Re: pain > > > I am sorry to hear that you are dealing with that much pain. I assume > you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain > decreased after I started the cocktail and got better still when I > increased my CoQ10 levels per my doctor's instructions. > > > > pointer wrote: > >> yes complex i andthree,oxphos,myaopathyneruop,and now cancer >> i had a morphine pump inside me that helped but it broke a year ago. i am now >> on avinza the highest without me going back to a coma to help,thx for >> responding >> jon >> >> >> dgregori@...> wrote: >> , >> >> Welcome to Mitoldies! In answer to your question, some of us have >> limited pain and others deal with quite a bit of pain. Also, there is >> all different types of pain, muscle pain and cramping, neuropathy, etc. >> >> Do you have a mito dx? >> >> >> >> jonathan_pointer wrote: >> >> >> >>> i have severe pain does anyone else? >>> jonathan >>> >>> >>> >>> >>> Medical advice, information, opinions, data and statements contained herein >>> are not necessarily those of the list moderators. The author of this e mail >>> is entirely responsible for its content. List members are reminded of their >>> responsibility to evaluate the content of the postings and consult with >>> their physicians regarding changes in their own treatment. >>> >>> Personal attacks are not permitted on the list and anyone who sends one is >>> automatically moderated or removed depending on the severity of the attack. >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hi, Sal I too feel better when I lift weights. I have increased my weights slowly, and increased my strength noticeably. It does not help too much with endurance, but it sure feels better to be less weak, and I feel generally better also. I have found doing each muscle group (legs, chest, and back) once a week is best for me, and that one time per week I really push those muscles. Doing endurance exercises never did anything for me, and I am totally surprised that a weight lifting approach is getting some results. Glad to hear someone else has found the same. Sunny Thanks for the tips Laurie, > > Its incredible how better I feel physically when working with these > dumbbells.. I just work 3 times weekly 20 min. per session!! I use 5 > pounds dumbbells so far so good I started 2 months ago. My Doctor gave > me the ok as long as its light exercise and don't get to exhausted. > I would not consider going to the GYM, all the people and noise kind > of confusing as well as walking out of the Gym after exercising would > not be too appropriate.. I guess there is nothing like home!! > > Sal >  Re: pain >  > >  > >  > I am sorry to hear that you are dealing with that much pain. I > assume >  > you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain >  > decreased after I started the cocktail and got better still when I >  > increased my CoQ10 levels per my doctor's instructions. >  > >  > >  > >  > pointer wrote: >  > >  >> yes complex i andthree,oxphos,myaopathyneruop,and now cancer >  >> i had a morphine pump inside me that helped but it broke a year > ago. i am now >  >> on avinza the highest without me going back to a coma to > help,thx for >  >> responding >  >> jon >  >> >  >> >  >> dgregori@...> wrote: >  >> , >  >> >  >> Welcome to Mitoldies! In answer to your question, some of us > have >  >> limited pain and others deal with quite a bit of pain. Also, > there is >  >> all different types of pain, muscle pain and cramping, > neuropathy, etc. >  >> >  >> Do you have a mito dx? >  >> >  >> >  >> >  >> jonathan_pointer wrote: >  >> >  >> >  >> >  >>> i have severe pain does anyone else? >  >>> jonathan >  >>> >  >>> >  >>> >  >>> >  >>> Medical advice, information, opinions, data and statements > contained herein >  >>> are not necessarily those of the list moderators. The author of > this e mail >  >>> is entirely responsible for its content. List members are > reminded of their >  >>> responsibility to evaluate the content of the postings and > consult with >  >>> their physicians regarding changes in their own treatment. >  >>> >  >>> Personal attacks are not permitted on the list and anyone who > sends one is >  >>> automatically moderated or removed depending on the severity of > the attack. >  >>> >  >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Hey Sunny, Its great to hear your doing well what exactly is that you have.? I recall my Doc saying at first I couldn't do any exercise since I have a neuromuscular disorder called( MERRF ).. But after further talking with him he said I can try and see how I feel.. Well, after two months I can say I feel great and not as week as before. Your right when you say endurance doesn't work at least not for me and you, simply because you get tiered too quickly and cant do anything the rest of the day? for everyone listening I think you should give it a try with very light weight like 3 to 4 pound dumbbells. If endurance doesn't work for you, try dumbbells their inexpensive and have worked for me and Sunny.. I will keep you all to date as I'm waiting for this mito cocktail to get into my system and see how my program works out. Sal Re: pain > > > > > > I am sorry to hear that you are dealing with that much pain. I > assume > > you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain > > decreased after I started the cocktail and got better still when I > > increased my CoQ10 levels per my doctor's instructions. > > > > > > > > pointer wrote: > > > >> yes complex i andthree,oxphos,myaopathyneruop,and now cancer > >> i had a morphine pump inside me that helped but it broke a year > ago. i am now > >> on avinza the highest without me going back to a coma to > help,thx for > >> responding > >> jon > >> > >> > >> dgregori@...> wrote: > >> , > >> > >> Welcome to Mitoldies! In answer to your question, some of us > have > >> limited pain and others deal with quite a bit of pain. Also, > there is > >> all different types of pain, muscle pain and cramping, > neuropathy, etc. > >> > >> Do you have a mito dx? > >> > >> > >> > >> jonathan_pointer wrote: > >> > >> > >> > >>> i have severe pain does anyone else? > >>> jonathan > >>> > >>> > >>> > >>> > >>> Medical advice, information, opinions, data and statements > contained herein > >>> are not necessarily those of the list moderators. The author of > this e mail > >>> is entirely responsible for its content. List members are > reminded of their > >>> responsibility to evaluate the content of the postings and > consult with > >>> their physicians regarding changes in their own treatment. > >>> > >>> Personal attacks are not permitted on the list and anyone who > sends one is > >>> automatically moderated or removed depending on the severity of > the attack. > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Hi Sunny, I just wrote to Sal about his exercise and lifting weight regime and I should have included you in the message, too. BRAVO for all the good things you are doing with exercise and I'm glad you're able to. I am also finding benefits to weight lifting , though I'm somewhat embarrased to call my darling little puny bright blue 2 pound weights, WEIGHTS! Best Wishes, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2004 Report Share Posted June 3, 2004 Sal, I am not sure of an exact diagnosis. My main abnormal test result is a high lactic acid. I don't have a more specific diagnosis. The doc who ran that test is the most enlightened in the area, and he does not know all that much about it, in my opinion. Also, my symptoms are more subtle, and not easy to see. If i complain that I can't lift a quart of milk out of the back of the fridge, that I cant hold my arms up long enough to brush my hair, or carry my groceries in the house the docs just don't take it seriously. When I worked (retired now, just could not hack it anymore) that is all I was capable of doing. No hobbies or social life, etc. I can walk and talk, I look perfectly normal, and they just write me off most of the time. Lucky, that it is not more serious, but difficult to get them to understand how much quality of life is affected. The pain the ascribe to other things, and well....anyway...... I meant this to be a SHORT post. Sal, I am glad t speak about exercising, and VERY glad to see that someone else is also having success with weights. I know it may not be the right thing for many mito patients to do, but I am sold on it for myself. For the next 10 days I will be offline, so hope to catch up with everything when I get back. I would love to have more thoughts on weightlifting. Everyone, that you for all the great info that you share. Although I have not posted a lot, I do read and follow, and consider this a great help. Sunny > Hey Sunny, > > Its great to hear your doing well what exactly is that you have.? I > recall > my Doc saying at first I couldn't do any exercise since I have a > neuromuscular disorder called( MERRF ).. But after further talking > with him > he said I can try and see how I feel.. Well, after two months I can > say I > feel great and not as week as before. > > Your right when you say endurance doesn't work at least not for me > and you, > simply because you get tiered too quickly and cant do anything the > rest of > the day? for everyone listening I think you should give it a try with > very > light weight like 3 to 4 pound dumbbells. > > If endurance doesn't work for you, try dumbbells their inexpensive > and have > worked for me and Sunny.. I will keep you all to date as I'm waiting > for > this mito cocktail to get into my system and see how my program works > out. > > Sal > > > > Re: pain > >Â > > >Â > > >Â > I am sorry to hear that you are dealing with that much pain. I > > assume > >Â > you are on the mito cocktail, COQ10, Carnitor, B2, etc.? My pain > >Â > decreased after I started the cocktail and got better still when > I > >Â > increased my CoQ10 levels per my doctor's instructions. > >Â > > >Â > > >Â > > >Â > pointer wrote: > >Â > > >Â >> yes complex i andthree,oxphos,myaopathyneruop,and now cancer > >Â >> i had a morphine pump inside me that helped but it broke a year > > ago. i am now > >Â >> on avinza the highest without me going back to a coma to > > help,thx for > >Â >> responding > >Â >> jon > >Â >> > >Â >> > >Â >> dgregori@...> wrote: > >Â >> , > >Â >> > >Â >> Welcome to Mitoldies! In answer to your question, some of us > > have > >Â >> limited pain and others deal with quite a bit of pain. Also, > > there is > >Â >> all different types of pain, muscle pain and cramping, > > neuropathy, etc. > >Â >> > >Â >> Do you have a mito dx? > >Â >> > >Â >> > >Â >> > >Â >> jonathan_pointer wrote: > >Â >> > >Â >> > >Â >> > >Â >>> i have severe pain does anyone else? > >Â >>> jonathan > >Â >>> > >Â >>> > >Â >>> > >Â >>> > >Â >>> Medical advice, information, opinions, data and statements > > contained herein > >Â >>> are not necessarily those of the list moderators. The author of > > this e mail > >Â >>> is entirely responsible for its content. List members are > > reminded of their > >Â >>> responsibility to evaluate the content of the postings and > > consult with > >Â >>> their physicians regarding changes in their own treatment. > >Â >>> > >Â >>> Personal attacks are not permitted on the list and anyone who > > sends one is > >Â >>> automatically moderated or removed depending on the severity of > > the attack. > >Â >>> > >Â >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Carol, I too have pain 'at' my joints, not in them per se, but at the point where the upper and lower muscles attach, that space inbetween. My my arms, legs, and now at the back of my ankles. My neck gets so stiff and painful as well. I have found " some " relief with Klonopin, although to be honest, I'm not sure it helped with the pain, because it just plain knocked me out. But at least I got some sleep. The cramps are pretty bad too...in my toes, arch, ankles, and calves. My feet invert sometimes, twisting inward. Little to no sleep on those nights. The pain makes me stiff all over, like I've been in a car accident. Total body whiplash, that's what it makes me feel like. Does it make you stiff too? ~Kathy~ > Regarding the subject of pain....I like many others here, am in constant > pain. The pain is pretty localized to my joints and especially my feet. I am > trying to get into a pain clinic. My sister who started with this sucky disease > about 3 years before me just got some type of apparatus inserted in her back > which is supposed to aid in reducing the pain by blocking some of the messages > the nerves are sending to her brain. I have been on heavy duty narcotics for > a year ...and a half...I am conpletely functional on the narcotics and I get > only a little relief. At this point, my PCP says he doesn't have anything else > to offer me. > > I have much difficulty walking...even though I have a crutch and a walker, I > tend to not use them because of stupid pride and because my kids are > embarassed by it. I see my Mito Doc in October and as of my last visit in April, she > was concerned about the deterioration in walking I am having. > > One more interesting note....I am 42 years old and in Menopause. I am > curious if any othe mito women entered menopause early. Of course I have every > single symptom to the 10th degree! I started working with a Nurse Practioner who > has me on bioidentical hormones... right now it's just progesterone cream > made of wild yams from Mexico. It takes 2-3 months to find the right recipe for > you. I have had some relief in my joint pains too. > > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Carol, I too have pain 'at' my joints, not in them per se, but at the point where the upper and lower muscles attach, that space inbetween. My my arms, legs, and now at the back of my ankles. My neck gets so stiff and painful as well. I have found " some " relief with Klonopin, although to be honest, I'm not sure it helped with the pain, because it just plain knocked me out. But at least I got some sleep. The cramps are pretty bad too...in my toes, arch, ankles, and calves. My feet invert sometimes, twisting inward. Little to no sleep on those nights. The pain makes me stiff all over, like I've been in a car accident. Total body whiplash, that's what it makes me feel like. Does it make you stiff too? ~Kathy~ > Regarding the subject of pain....I like many others here, am in constant > pain. The pain is pretty localized to my joints and especially my feet. I am > trying to get into a pain clinic. My sister who started with this sucky disease > about 3 years before me just got some type of apparatus inserted in her back > which is supposed to aid in reducing the pain by blocking some of the messages > the nerves are sending to her brain. I have been on heavy duty narcotics for > a year ...and a half...I am conpletely functional on the narcotics and I get > only a little relief. At this point, my PCP says he doesn't have anything else > to offer me. > > I have much difficulty walking...even though I have a crutch and a walker, I > tend to not use them because of stupid pride and because my kids are > embarassed by it. I see my Mito Doc in October and as of my last visit in April, she > was concerned about the deterioration in walking I am having. > > One more interesting note....I am 42 years old and in Menopause. I am > curious if any othe mito women entered menopause early. Of course I have every > single symptom to the 10th degree! I started working with a Nurse Practioner who > has me on bioidentical hormones... right now it's just progesterone cream > made of wild yams from Mexico. It takes 2-3 months to find the right recipe for > you. I have had some relief in my joint pains too. > > Carol > > > Quote Link to comment Share on other sites More sharing options...
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