Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 I am sorry, as I don't mean to make it " all about me " whenever I write to the group, but unfortunately I do not have a grasp on this whole Mito thing to be a constructive participant. I wish I could " give " more. That being said....I need help. Me, always thinking I am fine and can do most anything, decided to go with my kids on the " cliff walk " in Newport RI. It is a 3 mile walk and I did not realize that the first half is climbing up and down rocks. I made 2 1/2 miles and had to quit and get picked up. I was hurting and thought I was going to have a heart attack. It was bad. My vision was a little off, I could breathe fine but felt like I was not getting enough air (I am still feeling alittle like that), my muscles felt weak all over etc. Yesterday I hurt all day. Today, I still hurt and basically just feel very strange. I feel nauseous and had a sore throat and just feel very detached from everything! It feels like someone is sitting on my chest also. I am tired. I am at work right now and feel horrible! Does this sound familiar to anyone? I am NOT liking this. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 You made 2 1/2 miles! That's great! I'd be sick for at least 3 days, if I do more than I should, with a lot of the same symptoms. Remember, the mitochondria are the power supply of the cells. You depleted your power suppy, girl! You haven't heard from me much lately. I've moved and I feel too weak by evening to sometimes even write an e-mail. Sorry to all those who I should have written to. It took all I could do, just to read the e-mails that I got. Blessings, -- Is this Mito normal... I am sorry, as I don't mean to make it " all about me " whenever I write to the group, but unfortunately I do not have a grasp on this whole Mito thing to be a constructive participant. I wish I could " give " more. That being said....I need help. Me, always thinking I am fine and can do most anything, decided to go with my kids on the " cliff walk " in Newport RI. It is a 3 mile walk and I did not realize that the first half is climbing up and down rocks. I made 2 1/2 miles and had to quit and get picked up. I was hurting and thought I was going to have a heart attack. It was bad. My vision was a little off, I could breathe fine but felt like I was not getting enough air (I am still feeling alittle like that), my muscles felt weak all over etc. Yesterday I hurt all day. Today, I still hurt and basically just feel very strange. I feel nauseous and had a sore throat and just feel very detached from everything! It feels like someone is sitting on my chest also. I am tired. I am at work right now and feel horrible! Does this sound familiar to anyone? I am NOT liking this. Sheila 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 April 19, 2004 Report Share Posted April 19, 2004 Sheila, Unfortunately, that's very Mito normal. A couple of years ago, I could walk two miles without a problem. Now, I can barely make it one block. Yesterday, I swept out the garage, and wound up in bed for three hours with severe muscle pain and weakness. Likewise, I'm at work today, and functioning at about 50% of normal (for me). It's hard to know what your activity threshold is, especially when it's constantly changing. I can't do the things I could do a year ago. Every time I over do it, I'm surprised, because it takes less and less activity to cause problems for me. But kudos to you for the attempt, and best wishes for a quick recovery. Theresa > I am sorry, as I don't mean to make it " all about me " whenever I write to the group, but unfortunately I do not have a grasp on this whole Mito thing to be a constructive participant. > I wish I could " give " more. > > That being said....I need help. > Me, always thinking I am fine and can do most anything, decided to go with my kids on the " cliff walk " in Newport RI. > It is a 3 mile walk and I did not realize that the first half is climbing up and down rocks. > I made 2 1/2 miles and had to quit and get picked up. I was hurting and thought I was going to have a heart attack. It was bad. My vision was a little off, I could breathe fine but felt like I was not getting enough air (I am still feeling alittle like that), my muscles felt weak all over etc. > Yesterday I hurt all day. > Today, I still hurt and basically just feel very strange. I feel nauseous and had a sore throat and just feel very detached from everything! It feels like someone is sitting on my chest also. I am tired. > > I am at work right now and feel horrible! > > Does this sound familiar to anyone? > I am NOT liking this. > > Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Trust me...I would not have made the 2 1/2 miles if there was a way out. Unfortunately there was no turning back. The beginning of the cliff walk is worse than the end. I WON'T be doing that again! ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Sheila This sounds very mito related. Please don't do this to yourself, even if you want to. Pushing beyond your limits causes disease progression in most of us. I use to walk 3 miles every morning before work and then work all day and push myself to be involved with my kids. I now have problems walking from one room to another at home. I wish I had known what I had, so I could have been more pro-active. laurie > From: Smz143@... > Reply-To: > Date: Mon, 19 Apr 2004 15:30:32 -0400 > To: > Subject: Is this Mito normal... > > I am sorry, as I don't mean to make it " all about me " whenever I write to the > group, but unfortunately I do not have a grasp on this whole Mito thing to be > a constructive participant. > I wish I could " give " more. > > That being said....I need help. > Me, always thinking I am fine and can do most anything, decided to go with my > kids on the " cliff walk " in Newport RI. > It is a 3 mile walk and I did not realize that the first half is climbing up > and down rocks. > I made 2 1/2 miles and had to quit and get picked up. I was hurting and > thought I was going to have a heart attack. It was bad. My vision was a > little off, I could breathe fine but felt like I was not getting enough air (I > am still feeling alittle like that), my muscles felt weak all over etc. > Yesterday I hurt all day. > Today, I still hurt and basically just feel very strange. I feel nauseous and > had a sore throat and just feel very detached from everything! It feels like > someone is sitting on my chest also. I am tired. > > I am at work right now and feel horrible! > > Does this sound familiar to anyone? > I am NOT liking this. > > Sheila > > > > 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 April 19, 2004 Report Share Posted April 19, 2004 Thanks Laurie, I know I sound ridiculous in saying this, but I usually feel ok. That is my biggest problem, my brain does not accept that I have a " disease " . I still don't 100% accept it. They think I have CPEO. Well, CPEO by definition does not always have all the other symptoms that the more severe Mito diseases have. I keep thinking my symptoms should be mostly eye related and any other symptoms should be mild. There is not alot of info on CPEO as there is on some of the other diseases. It is very frustrating. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Sheila I use to be the same way and still often push too hard, as one day it is find and the next time I do the same, it is not okay. You will learn to accept and adjust. You have to let yourself grieve for the loss of the health you planned on having. Thinking of you, laurie > From: Smz143@... > Reply-To: > Date: Mon, 19 Apr 2004 17:33:25 -0400 > To: > Subject: Re: Is this Mito normal... > > Thanks Laurie, > > I know I sound ridiculous in saying this, but I usually feel ok. That is my > biggest problem, my brain does not accept that I have a " disease " . I still > don't 100% accept it. > They think I have CPEO. Well, CPEO by definition does not always have all the > other symptoms that the more severe Mito diseases have. I keep thinking my > symptoms should be mostly eye related and any other symptoms should be mild. > There is not alot of info on CPEO as there is on some of the other diseases. > It is very frustrating. > > > > 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 April 19, 2004 Report Share Posted April 19, 2004 Thanks Laurie, I will keep that in mind. Dr. Korson said that exercise was ok. I guess some times are better than others though. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Sorry for not remembering, but where did you move from and then to? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Thanks Theresa. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Well Ken, This time scared me. I never felt quite like this. Now I think I am getting a cold or severe allergies. My throat and chest don't feel well. That may have contributed to the bad experience as well.....who knows. I just know that I will NEVER do the cliff walk again! It was very pretty though, that is what I saw in between feeling like I was DYING! It is on the water and there are mansions everywhere. Very nice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Well Laurie, I also need to lose weight. There are times when a flight of stairs makes me huff and puff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 > I made 2 1/2 miles and had to quit and get picked up. You made a 2 1/2 mile hike - I'm impressed! I couldn't walk 2 1/2 blocks without my legs giving out on me. >I was hurting and thought I was going to have a heart attack. It was bad. When I was able to attempt a hike like this, I would feel the same way you did. >My vision was a little off, Same thing with me and here I was thinking that this was something that only happened to me. >I could breathe fine but felt like I was not getting enough air (I am still feeling alittle like that), my muscles felt weak all over etc. Me too. > Yesterday I hurt all day. This would happen to me too. > Today, I still hurt and basically just feel very strange. I feel nauseous and had a sore throat and just feel very detached from everything! It feels like someone is sitting on my chest also. I am tired. > I am at work right now and feel horrible! I would still feel soreness and pain and would be so tired that I could not resist the need for sleep on and off for two - three days after the hike. Now I aim for shorter distances and at a much, much slower pace than I once did. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2004 Report Share Posted April 20, 2004 Sheila I was told that they are now recommending moderate exercise at a time when it is possible to do so without a crash. My son has been using a weight machine and has done well with maintaining and even improving his exercise tolerance, but he has to be careful not to over-do. I didn't have a diagnosis until it was too late to exercise very much. I still walk inside the house and maybe into a restaurant from a close parking space. I also have a stationary bike that I have gone back to using. The bike with no resistance was what Dr. Cohen wanted me to try. He suggested a cardiac rehab program as the appropriate exercise for me. My insurance wouldn't pay for it, so I just talked with the PT and do it at home. laurie > From: Smz143@... > Reply-To: > Date: Mon, 19 Apr 2004 22:20:35 EDT > To: > Subject: Re: Is this Mito normal... > > Thanks Laurie, > > I will keep that in mind. > Dr. Korson said that exercise was ok. I guess some times are better than > others though. > > > Quote Link to comment Share on other sites More sharing options...
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