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    Old 07-01-2005, 06:17 PM   #1
    gmcnj
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    Total exercise intolerance??

    I've just been reading through posts, and someone mentioned doing daily yoga (I'm sorry I can't remember which of you lovely people, and I'm too tired to go back through the posts

    I used to be quite active .. not a superstar, but I hiked, biked, ran (no marathons .. but I actually used to run!), walked at least 2-4 miles a day, etc.

    Over the past two years, I've become almost entirely inactive, other than two very short daily walks with my dog (one when things are really bad) and working at my office job as much as I can. (And frankly, I keep my job through an act of will and lots of pain meds.)

    It seems that anything I do .. and I mean anything .. makes me feel worse. The most gentle stretching, particularly of my stiffest areas (upper body) increases the neuropathy and makes my body burn all over. Sometimes it triggers a herx that can last for days. If I walk farther than a short distance, same thing .. it can send me into a spin. Almost any unusual movement on the right side of my body (which always hurts worse because I use it the most), like carrying a heavy object, driving, or working on the computer too long, triggers a flare of burning pain from the heel to the back of my head on that side.

    This all discourages me from getting any form of regular exercise. I've explained this phenomenon to both of my LLMDs, but so far, I haven't gotten a good explanation for it.

    Is there anybody else out there who has almost no tolerance for moving their body? I know this is self perpetuating .. the longer you don't move the harder it becomes. But this isn't just being out of shape and tired .. it really makes me sick.

    I've been through two different forms of physical therapy. I can't get massage because I can't let anyone touch me (again, it's herx city). What do you all think: "work through the pain," "listen to your body," or something else?

    Ugh, sorry. That all sounds so whiny! But I would really love to find a good explanation and solution for this!

    gmcnj

     
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    Old 07-01-2005, 06:43 PM   #2
    sleeperwoken
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    Re: Total exercise intolerance??

    No, you don't sound like you are whining. It's really true, this is a debilitating illness and it totally taxes out your body and all physical resources. I absolutely feel very strongly that you should not push through that stuff but rest as much as possible.

    I was very active also, but in the beginning of treatment I could not do a thing, not even walk to the mailbox. I am really much more active now (except for the broken rib slowing me down), but I believe I have the energy and strength now because I forced myself to rest for an entire year. Don't do anything you don't absolutely have to do.

    Once you start getting the lyme under control you can see what you can handle. Even Dr. Burrascano says no cardio activity at all and only light stretching and lifting if you really want to do something. Rest is so important for your immune system. It's so against our culture to just rest. It's like a mind thing, a serious battle to force yourself not to do anything. It's worth it though.

     
    Old 07-02-2005, 04:32 AM   #3
    gmcnj
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    Re: Total exercise intolerance??

    sleeper, thanks for the reply. I've been struggling for a year now about whether I should try to go on short term disability so that I can get adequate rest.

    I have a demanding job, and I tend to put a lot of pressure on myself to perform. I constantly wonder how much I'm impeding my progress by using every spare ounce of energy dragging myself to work as much as I possibly can, being stressed out by deadlines, issues with employees, etc.

    I cancelled a trip to my parents this holiday weekend (where I would have been babied and pampered) because I have a major deadline coming up that I'm anxious about.

    Problem is, I was raised to work. I'm not a martyr, it's just natural to me that work is a high priority, and comes before leisure ... I think I might be translating leisure into 'resting and getting well'. Not working, for any reason, seems weak and like unacceptable laziness to me.

    I'm not sure what it would take to go on disabilty for a while, because I haven't even investigated it with my HR dept. I have good benefits and even bought short-term disability a few years ago. I definitely have a psychological roadblock here that I need to think long and hard about!!!

    gmcnj

     
    Old 07-02-2005, 05:54 AM   #4
    deejavu
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    Re: Total exercise intolerance??

    Hi Gmcnj,

    I was also brought up that work came first and I also had a very demanding job where I had to meet deadlines (I would work weekends just to meet them).

    Long story short: I was not diagnosed with Lyme when I was working even though I had it, and it got to the point where I couldn't function anymore at work. One of my doctors wrote a letter to my company and because of that letter, I took 3 months off from work. He wrote that I was suffering from abnormal fevers and chronic fatigue.

    During those 3 months I slept and rested and I did go back to work for about 2 years (give or take some months). I did get paid for those 3 months and I think it would be a good idea if you could get that short term disability.

    I also stopped being active as my body can not tolerate exercise.

    Hope that helps,
    Denise

     
    Old 07-02-2005, 08:01 AM   #5
    gottagetbetter
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    Re: Total exercise intolerance??

    Gmcnj ,

    I am the one that has said to do yoga everyday. It has made such a huge difference in my recovery that I am now teaching.

    If I were you I would look for a Restorative class in your area. If you don't have any local studios then I would recommend this video series: "AM/PM Yoga". You should be able to find it at Target. One tape for Mornin' to awaken the body, one tape for Night time to help you sleep better.

    I now don't go a day without my practice. Even on the days that I teach I still take the time for myself. I truly believe putting the mind, body & spirit back into harmony is huge in our recovery.

    During my studies I have found that we are short shallow breathers and that leads to chronic illnesses. Yoga is awesome with the breath!!

    ~P

     
    Old 07-02-2005, 09:07 AM   #6
    gmcnj
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    Re: Total exercise intolerance??

    gottagetbetter,

    I actually have that dvd! I used to take yoga and also tai chi classes but I'm not up to going to classes anymore (besides the exercise itself, getting there on top of my work schedule and the minimal pet/household care I can do is too much).

    Even though I used to find the dvd pretty "lightweight" I now find it very difficult to do either the A.M. or the P.M. While I'm doing it, it hurts my joints and increases my neuropathy, which I could live with. But what I find difficult to overcome is that later that day, or the next day, I feel like I've been hit by a truck, and then I have several bad days.

    Should I just keep doing it anyway? Did you feel worse when you started? If so, how long did it take you to work through it?

    gmcnj

     
    Old 07-02-2005, 12:59 PM   #7
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    Re: Total exercise intolerance??

    Dear gmcnj,

    I know you feel the need to work but you really should consider taking a break for a while and see if it helps. I have a terrible mobility problem and now my husband has to do the grocery shopping. I make a list for him aisle by aisle and he doesn't always get the brand I specify but beggars can't be choosers my Nana B used to say.

    This loss of freedom if you will has really freaked me out and made me feel less in control than ever before. I live in the Dallas area and yesterday he mowed the yard and left the mower out by the shed when he went to the store. A big storm blew through unexpectedly and before it started raining I started to go put the mower up twice only to turn back. We only have 1/3 acre from front to back but from my back door to the mower was like a mile to me. I finally very carefully made it out there and got it put away and got in the house before the rain hit. My walking out there wasn't pretty believe me but I got it done. He came home and was glad I did it but said he figured the mower would just get washed.

    The point of the above story is that we push ourselves for stuff that doesn't matter. What you are doing is far more than my little jaunt but hopefully you won't suffer in the long run. We have known something was wrong with me for over 4 years but I just kept cutting wood, painting and doing craft shows because my husband's job was in jeopardy. I know I did more damage not only with the physical aspect but the mental as well. Stress will kill you if you let it. Please realize that the work will still be there 3 months from now and maybe then you can throw your all into it after you recover.

    Betterdaysforme

     
    Old 07-02-2005, 06:00 PM   #8
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    Re: Total exercise intolerance??

    I second everything that BDFM said! If you push yourself and don't listen to what your bod is trying to tell you it will make matters worse usually. So if you can only do something stretching wise/yoga/what have you maybe every 5 or 6 days, that is better than nothing at all, and better than doing it every day and pushing through it only to suffer through a few weeks of bad bad bad days. Please take it easy and slow...I'm trying to get up enough strength to try rebounding eventually, but for now I'm too weak so I just try stretches and some basic movements to keep what I have at the moment.

    BDFM ~ isn't it crazy the things we do b/c we used to be able to do them or think they "need" to be done? I'm glad you made it there and back though...I can imagine that must have been pretty scary for you trying to move that mower and all. Hope you don't have any repurcussion of that excursion. But unfortunately I can relate to feeling that way though....my roommate moved out finally today. However, she left all her old foood in the fridge/frezzer, didn't clean off the walls or cobwebs in her room, and left some much crud in her room that instead of resting today after my herx this morning I felt I "had" to clean it up so that the new roomie wouldn't move in to a complete mess. Now I'm paying for it in pain. But who else was going to do it since I live alone now? I should have left it sit and just explained to the new roomie that she didn't clean up and I was too weak to do it. I'm sure she would have understood, but I couldn't let it go. So stubborn!

    Anyway gmcnj I hope you can see from all of these posts and stories that when you push yourself with the lyme you end up paying for it....so do as "we suggest, not as we do!!!" LOL... Please take it easy!
    __________________
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    Old 07-03-2005, 09:44 AM   #9
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    Re: Total exercise intolerance??

    gmcnj ,

    LISTEN to your body!! Everyone's body is different and what might be good for one isn't good for another.

    Since you already have that video and it is too much for your body right now then I would suggest lying in Savasana(corpse pose) resting the body completley. What you want to do here is quite the mind, body and spirit. This is a huge thing to do. You could also practice legs up the wall. YOu want to get the left side of your body close to the wall and then you swing your legs up. This is the second most restorative pose in yoga(second to the head stand). This pose is great for tired aching feet, restoring the blood to the brain, and broken blood vessels. Remember to quite the mind, body and spirit. Just letting the breath breathe the body.

    The reason I recommended a Restorative yoga class is because that is all that they have you focus on. It truly is healing but you can tap into the restorative poses at home. You might do a search on the internet if there isn't a studio close by.

    My personal experience with yoga has been awesome! When I first started I couldn't touch my toes because I had such great leg pain that the muscles were tightening up. A lot of times I had to force myself out of the bed to go. But I knew that when I finished the class how much better I would feel(but that is ME personally).

    There were a lot of instructors that I could not do their class. Still can't at different times..depending on what my body is doing. So it is imperative that you LISTEN to YOUR BODY!!!

    Romans12:12,
    be very careful with the rebounding...you could do restorative yoga much easier then rebounding. I had been doing yoga for 1&1/2 yrs before rebounding and I found a few minutes to be very hard. (but again that is ME personally)

    Have a great 4th!!
    ~P

     
    Old 07-03-2005, 12:49 PM   #10
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    Re: Total exercise intolerance??

    Thanks GGB....I will do some searching and see if I can find some basics of the restorative yoga that you're talking about. I just always thought there was just one kind of yoga, so it it interesting to me to find out that thist type focuses solely on healing your body directly. Very interesting.

    I know it will be a while before I try the rebounding, but hopefully I will be strong enough to try it just for a minute or two. Gonna work up to it....and the yoga will be a good start.
    __________________
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    Old 07-03-2005, 06:57 PM   #11
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    Re: Total exercise intolerance??

    gmcnj ,

    Talked with a fellow Yogini today and got some great info for you.

    A video on restorative yoga by Gaiam featuring Patricia Walden...not sure of the name of the video.

    A book that is awesome is Relax & Renew by Judith Lasater, Ph.D., P.T.

    I hope this helps you out. I know that whenI take a restorative class after words I feel totally awesome.

    ~P

     
    Old 07-03-2005, 07:55 PM   #12
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    Re: Total exercise intolerance??

    I am writing to let you know that there is hope. Although, I agree, every person's body is different. I was hospitalized due to severe pain and consequently, immobility. After alot of physical therapy and many, many tears, I began getting my life back. I did aquatherapy too, and stretches every single day. They hurt soooo bad while I did them, but I would feel better the next day, so I fought through the tears. This might be where your body & mine differ.
    However, slowly, but surely, I did stretching and walks every day, combined with a very restricted diet. Loosing all extra weight made me more comfortable and left me in less pain. In three months I found myself in so much more comfort and with a much higher stamina. And sleeping better too. The doctors could not believe how much I had improved. If you want to know more, I can give you more information. I know alot of other people have suggested resting, however, for me, pushing through the pain of exercising, but then resting, combined with a new diet, helped me get better. I just thought that you should know more than one point of view. Please do whatever is best for your body!

     
    Old 07-03-2005, 08:42 PM   #13
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    Re: Total exercise intolerance??

    Dear jag,

    I know what you mean about the pain. I feel as though I am being pulled in 2 different directions. The board says rest and relax to help your body and my husband says exercise and walk to strengthen it. I am about ready to explode.

    Today I tried to do some leg exercises as that is my major problem. For whatever reason my right knee just doesn't want to bend the way it should. I was laying on the floor and trying to lift the leg to my chest by bending it. The left one is fine the right doesn't want to cooperate. I don't know if it is the lyme, lack of exercise or even a mental thing at this point.

    I finally knelt in front of the couch and would scrunch (sit) back on my heels and then lift up my upper body and bend to the couch. I did this about 50 times. Then twice today I used ankle weights over my leg/foot and lifted it with my leg over the arm of the couch about 50 times. I figure some of this has to help somehow. I just hope I am not doing more damage than good.

    The strangest thing is that my legs tonight are like rubber but don't hurt, but my left arm, shoulders, and back are sore as can be. Maybe I just have the little buggers moving around. If so I guess that's good because then the meds will find them easier.

    I guess I will try to do this for a few weeks and see what happens. If I can push through this my mind says I have to get stronger. I am just so sick of waiting for this to go away and not trying to build my legs up.

    I thank you for your thread, it was very encouraging and we would all love to know what you are doing in more detail. Did you have lyme for long and how long were you treated and with what? I guess that's all immaterial because you are on the road to recovery and that's what counts. It is so good to hear these good stories.

    Betterdaysforme

     
    Old 07-05-2005, 02:25 PM   #14
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    Re: Total exercise intolerance??

    I am so glad you found my advice encouraging. When I was about where you were, I too, could see no results. It was the daily repitition and chaning my eating habits that finally made such dramatic results. I have been much better now, and am able to run for miles, bike, swim, even ride horses again.
    I was hopeless and depressed and frustrated with life and doctors. They did not know what was wrong with me. I went 5 years undiagnosed with lyme. I had been hospitalized for awhile due to such severe pain and that is when I began my physical therapy. I did alot of stretching and walking. They thought I had fibromyalgia along with a slew of other diseases, so I researched that and put myself on a diet of no sugar, salt, carbonation, caffiene, white products, butter and began a rigorous vitamin treatment. I followed this new lifestyle religiously, and in time, I began feeling much, much better. The pain subsided, the stiffness was relieved, and there was less pressure on my joints, so those hurt less too. I lost 60 lbs from 180lbs, and I was able to sleep better too.
    I am not saying that in any way this is esay; but I was at a point of pure desperation, and I fought and regained my life! I hope this helps.

     
    Old 07-05-2005, 06:15 PM   #15
    gmcnj
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    Re: Total exercise intolerance??

    GGB, thanks very much for the dvd and book tips. I'm going through a particularly rough patch the past few days (actually trying to stay off the computer as it aggravates my pain problems). As soon as I can I'm going to look for both of them at the store.

    gmcnj

     
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