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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19401 |
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Posted: Tue Nov 9th, 2004 03:06 |
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Are there any guidelines on exercise, massage and rest during the MP?
Exercise and health
Advice regarding exercise is usually given to patients on the unproven assumption that it will result in symptom improvement such as fatigue. Most patients have learned this isn't true.
"I have seen no evidence that exercise will help a patient heal, and there are biochemical pathways which suggest that exercise will actually slow the healing by exacerbating the disease process." ..Trevor..
Exercise and immune suppression
During excessive (aerobic) exertion, the body manufactures Cortisol (the endogenous form of prednisone), endorphins, and a stack of other metabolites which might make you temporarily feel better (it could be suppressing the immune system), but which do little to improve your long term health. "Cortisol and Endorphin production is increased during exercise and both really complicate operation of the innate immune system." ..Trevor..
Fitness is not the same as health
It's no wonder folks are worried about exercise since everywhere you look someone is exhorting people to exercise with the implication this will make you healthy. Exercise makes you fit to perform certain activities, whether it is walking or winning the Tour de France. Exercise does not make you healthy. Sudden death in athletes or early death of athletes (Reggie White died at home suddenly of sarcoidosis, Arthur Ashe died of AIDS) illustrates that.
Fitness is being able to perform the activities of daily living, work and recreation that you need or want to do. Health is not improved by exercising beyond that point and it may even be detrimental.
If you can perform your activities of daily living, then you are as fit as you need be. Your focus should be in regaining your health with the MP. When you are feeling better, you will be able to exercise more and increase your endurance.
Exercise may increase tissue perfusion
Keep in mind that exercise that is strenuous enough to increase your body temperature may increase antibiotic tissue perfusion which could result in a stronger immune system reaction. This may be a desired effect for some.
Check with your doctor first
Anyone who has been sedentary should check with their doctor before starting an exercise program because those who have been too sick to exercise will experience some deconditioning and muscle weakness. Mild exercise as tolerated is a good idea to try to prevent this. But if you are just too sick to move, be assured that when you are feeling better, you can regain your strength.
Remember that healing is your #1 job. Strength and endurance will return when you are better.
Mechanical forces (massage and/or exercise) may expose bacteria to the immune system
The L-forms survive inside the phagocytes 'floating' in a biofilm. There is a thin exoskeleton protecting the biofilm from the lysosomes, which would otherwise 'gobble up' the bacteria.
Mechanical forces on the cells are transmitted through body fluids, and some may weaken or break the exoskeleton structures, exposing the bacteria to the immune system. Since your immune system has been activated by Benicar, it will happily digest the bacterial DNA, and increase your level of immunopathology.
Exercise and massage may both exacerbate immunopathology in this way.
"Exercise causes mechanical stress even at the cellular level, and may increase the amount of bug-killing. Both are helpful, especially in latter stages, but don't overdo them, as this is just as bad as taking too high a dose of abx ..Trevor..
Post exertional malaise
The 'effect' of exercise or even mild exertion can be delayed (post exertional pain / malaise) and might be missed as being attributable to the day or more before exertion.
Take care to avoid overexertion. See Immune Response to Heavy Exertion.
Muscle mass
Losing muscle mass is a symptom due to Immunopathology. See these posts re return of muscle. Muscle wasting/ Muscle Loss atrophy
Gentle exercise
Some have had post exertional malaise from something as small as less than 1 minute of Tai Chi type movements, so until it is the time.... it is not the time. Members are advised to approach massage, movement, exercise with caution and to consider what may be appropriate to themselves as an individual.
Some simple stretching and range of motion exercises for those who can manage.
Light exposure during exercise
Note that "indoor" gyms and shopping malls, etc. may have natural light exposure because of skylights and or large windows or doors.
Exercise and weight loss
25-D is stored in fatty tissue. Fat cells breaking down may also increase misery of inflammation by making more 25-D available. 1,25-D can rise quickly from the effects of vitamin D and or sun exposure . You may feel the effects immediately or not for a day or two.
It is advised to exercise / lose weight slowly. Indeed it may be difficult to lose weight during this stage if the misery of increased inflammation sends you to the refrigerator. Please keep this in mind if you decide to diet and or exercise.
The effects of immunopathology on endurance
It is not surprising that your time to achieve is longer and strength is less with herx in place. Also it is fairly common for your hematocrit to drop in this phase of the MP, and that can really limit your oxygen carrying capacity. In slow but due time you will return to baseline and then move beyond. ~PB, R.N.
Gradually increasing activity is the key
-Things went very well this week. The only "bad" day was today and it was still pretty good, especially for a bad day - I was still able to get several hours of work done and take the dog out for his walk. I also should mention that I have been doing some more strenuous exercise this week - I have done some "advanced" exercise DVDs (Cathe Friedrich) but am modifying the exercises - slightly lighter weights and only a 4 in step.
I have had some bursts of energy that are amazing and the exercise just feels sooo good, for the first time in YEARS. And I'm pleased to say, on these days, my endurance and strength have amazed me. I am beginning to realize that the feelings of "always being out of shape despite hours of exercise" or perhaps just being inherently "cardio-challenged" I have had for several years (since I was 12) have been the illness and not actually being out of shape. Really, it has been amazing how physically strong I am on these better days - especially considering I was sedentary for a couple of years once my illness became debilitating, and just started doing 10 minutes of walking every few days last February (and at the time, that was very difficult and quite the accomplishment for me).
I am really improving quickly now and am very excited to see how strong I will be able to get when I'm finally completely healthy - a ways down the road, but definitely something to look forward to. I am trying to hold myself back from too much exercise too soon (I know it could be detrimental to push too fast and I have, in the past, had a tendency to overexercise), but the increase in activity and intensity of activity has truly lifted my spirits. So not only did I reach a milestone with travel last week, I reached a milestone with activity this week! Hopefully this story can help inspire some others - I was, afterall, almost completely bedridden when starting the MP last June ('07). ~Britt July08
Rest
Rest and pacing activity and exertion are very important aspects of managing your healing. By managing your meds dosing to get maximum tolerable immunopathology, you are pushing your body to it's tolerable comfortable limit already. You need to take care of yourself with adequate rest for safety and comfort.
It is natural to have less reserves and to suffer because the body is ill and doing hard work. It needs care to heal. Many folks report that rest is the most effective thing they can do to keep symptoms tolerable.
On bedrest
When symptoms limit your activities, try not to stay in bed 24 hours. Bedrest puts you at risk for blood clots, pnuemonia, skin breakdown and muscle deterioration. Rest in a recliner or on the sofa at intervals to change your position. Change positions in bed and walk as far as you are able to at regular intervals. Do gentle range of motion exercises to maintain some flexibility and strength. If your mobility is compromised, be sure you are safe when you move around. Ask for help, safety proof your home to prevent falls and equip your home with safety devices and aids for independent living.
When mobility is limited
A hospital bed may be helpful. The bed MUST be at a height that you dont have to LIFT yourself to get up. ie your bottom is at a height that your feet touch the floor in a manner just right to stand straight up, no lifting of the body.
AND when you get back in the bed height needs to be lowered for ease of sitting DOWN.
Use a bedstick to help get/sit up.....see eg http://www.yooralla.com.au/DVAWEB/AB08_1.htm
Community services may provide a shower chair and rails and a toilet seat with extra height to increase your safety. A recliner chair and an ordinary bed can be made the right height with help.
-I find I need to sit back with good neck/shoulder support. You can set up your PC in such a way that you get this support to ease the discomfort. I have converted a sofa into a bedcouch with good pillow support. Recently we bought a contraption called a "bed lounge" which gives me even better support (mothers day present....they are a bit expensive). The other advantage is it allows me to sit with my legs raised so reduces edema issues. I have a hospital style trolley over my couch (we raised the couch by putting steel legs under it) for my PC screen so find it easy to sit here to use the PC or to eat or whatever. Spend most of my time here. Eating in the kitchen without this support I find I can manage only for very short periods. ~IngeD
Members' experiences
-Yesterday I spent all day completely resting, completely off my feet and completely out of the light. My body settled, my swelling settled. My energy over the last couple of months has been thriving as compared to a year ago when I wasn't able to lift my head off a pillow for months, WHAT A GIFT!...so naturally, I think the "rest of me" is ready to move on. Obviously, I've learned my lesson here. This nasty abdominal swelling comes back the minute I'm on my feet but if I'm able to control it by rest, so be it! ~Deb Grabetz
-My IP holiday continues and happily report I am enjoying a notable increase in energy (6). I hoard it like a miser, however, and ration out portions to be used each day, always making sure I don’t overdo it. ~coolbeans
-For the past 2-3 weeks I have been doing mild exercise - a walking dvd - I started at about 20 minutes and am now doing the full hour every 2-3 days. It has made me feel slightly better rather than infinitely worse. Amazing! I have tried various times to walk during the MP, but have never stuck with it more than a few days because of dizziness and muscle cramps during the walk and postexertional malaise the days following, so this is a huge and notable improvement for me. Don't worry, I am being careful not to push my body too much with activity and when symptoms increase again, the exercise time will be reduced or stopped as needed. ~Britt Feb08
Members' experiences with exercise
Grace Success regaining muscles and use.
Guss Wilkinson Martial Arts experience Here
-It may take 12-18 months to get to the point where someone on the MP feels like undertaking an exercise program. For me it was almost 18 months, but I know some other members who have reported they feel like exercising around 10-12 months into treatment. Our first priority- our number one job is focussing on the healing. ~ Belinda
-I did two 30 minute easy sessions on the bike (indoors on the trainer, dark room) this cycle & felt COMPLETELY normal! One thing that was odd was that I did not feel as unfit as I did a few months ago. This "feeling" was supported by objective performance measures too. This doesn't make a lot of sense since I haven't exercised at all. The only reasonable explanation is that part of that "loss of fitness" was actually due to immunopathology, as possibly reflected in my lab results too. ~B R H
- In two years, Belinda went from almost bedridden with oxygen to now walking 3 miles a day.
-Was amazed to feel wonderful using stationary reclined bike, extra slow, for 5 minutes yesterday. Felt good to use muscles, similar to how good I felt hiking during abx vacation last summer, totally unlike how horrible my efforts to gain strength walking felt early in my disease, when I lost rather than gained ground thru exercise. ~Dody
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Sun Oct 30th, 2005 02:29 |
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Words of wisdom from Belinda Fenter
(filelink)
The problem with exercise is that people with chronic disease mistakenly try to approach it as a "normal person" would. They give themselves a pep talk and enthusiastically jump into the middle of an exercise plan, expecting to be able to exercise normally. Then, when their body responds abnormally, they get frustrated.
The best advice is to go easy, don't expect too much, be ready to adjust if needed, and don't attempt to escalate the challenge too quickly.
If you want to exercise, begin with simple stretches. If you do well after a few days of that, you might attempt a *short* easygoing walk. You are the only person who will know what you feel up to doing, and it's important to listen to the feedback you get from your body. You will be better off if you don't expect too much to begin with, and accept that recovery of health is a long-term program.
Honestly assess how you respond to the addition of any exercise. If it throws you into increased pain or fatigue, then back down on your expectations. It may be too early to exercise yet (you may need to be further along in healing) or you may be expecting to be able to do more than your body can handle.
Once you do feel like exercising, keep in mind the story of the tortoise and the hare... slow and steady wins the race.
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First of all, I simply could *not* exercise when I was quite ill. The first year on the MP, I focused on regaining my ability to perform activities of daily living and regular duties, along with balancing my Herxing.
My weight was affected by following the MP. In the first six to nine months, I slowly lost about 8-10 pounds. This simply was due to increasing daily activity and changing my diet to avoid baked goods.
I didn't even think about "exercising" until after I had been on the MP for more than a year. My problem was the pain that came *after* exercising. The burning pain in my muscles - which was always part of this disease, but which had resolved from following the MP - came back with a vengance after exercise. I knew this by observing setbacks when I increased my physical activity and overdid it.
After about a year, I felt strong enough to take short walks at the nearby mall at night (to avoid sunlight). Sometimes I couldn't walk the full length of the mall, and I tried to ensure I listened to my body, not pushing it.
You have to have the same attitude about those people who think you should be exercising so you can feel better.. as you do toward those people who think "you don't look sick." Ignore them because they don't understand.
When your muscles are burning with pain from simple daily activities and you are Herxing, it makes no sense to try to exercise. Trust your instincts. You will know when you have recovered enough to attempt exercising, and that day will come.
I would wager that those people will some day be surprised at how lively and trim you are, as you continue your progress on the MP. That's what happened to me, anyway.
Exercising, now includes stretches, walking a few miles every day, and floor exercises. I would suggest that no one rush exercising because it can make you feel pretty sick.
One thing I found, (during phase two), was that when I had a sports injury to my shoulder (from working out with weights), I actually recovered by laying off those exercises for a few weeks. It was exciting to see this change; healing from an injury was not something I'd been aware of during my sarcoidosis years.
Last edited on Fri Jul 27th, 2007 16:50 by Meg Mangin R.N.
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Meg Mangin R.N.
Research Team
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Posted: Sat Nov 12th, 2005 00:50 |
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Dr. Greg Blaney on exercise
(filelink)
All exercise induces trauma and in fact, it is the body's response to the trauma that results in improved fitness especially strength. So, if one is already in an upregulated inflammatory response, there can be a very narrow leeway between just the right amount of exercise and too much. I call it the Goldilock paradigm (too hot, too cool or just right).
I suggest reducing activity to a level that does not create aggravation and then gradually increase the intensity. With each increase, one should not repeat the activity for 2 days as the negative effects often are not manifested until 48 hours afterwards.
Also, remember that your capacity for exercise changes depending on your overall condition such as Herx, stress, fatigue, nutritional status. So you must let your body's feedback determine what you can do, not your mind.
Aerobic exercise,if done correctly, will enable you to create energy from fat and oxygen, lessening lactic acid build up.
Finally, stretching should never be painful. Most people either don't stretch or stretch too vigorously, causing strain.
Though not a plug, my wife and I wrote a book about these theories and is available from our centre "Stillpoint Center for the Healing Arts" in Vancouver or via our website http://www.stillpointproject.com
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Meg Mangin R.N.
Research Team
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Posted: Sat Dec 10th, 2005 02:40 |
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Range of motion exercises
(filelink)
Here is a good description of range of motion exercises with illustrations. It applies to anyone who has a disease that limits their activity level and/or range of motion. Always consult your Dr.
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Meg Mangin R.N.
Research Team
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Posted: Tue Nov 7th, 2006 20:12 |
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Being fit is not the same as being healthy
(filelink)
We often use the phrase "health and fitness" as though the two were somehow the same. They are different. Health is the absence of disease, and fitness is a level of physical ability. You can be healthy but not fit (most of us who are sick would love being in this condition), but you cannot be fit without being healthy. For TH1, the level of your disease will put a limit on your level of fitness, no matter how much you work out (been there). And that limit will get lower and lower over the years as you get sicker - as you will.
Since we use the phrase "health and fitness" so much, I guess we shouldn't be surprised that folks assume they are interchangeable. Some of us have been blamed for being sick because we didn't exercise enough, ate the wrong food, or participated in certain vices. Of course that is just due to the ignorance of the folks who are trying to help, but didn't know the root cause of the problem was bacteria, not behavior. Fitness cannot cure chronic infection.
Your attempts to get fit without first becoming healthy are doomed to disappoint you, and will in fact waste valuable time needed to kill the bacteria that are keeping you from becoming healthy, and thus keeping you from becoming fit.
Once you start killing those bacteria, exercise will not be your top priority, the herxheimer reactions will show you how sick you are, and you'll just want to kill the bacteria. After about three years of killing bacteria you will begin to want to exercise again (thats where I am) and you will find it easy and that it does result in fitness.
Gary
Gary eyesight improvement
Gary: Sarcoidosis: Phase 3 Progress
Gary functioning and productive, mentally and physically.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19401 |
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Posted: Sun Dec 31st, 2006 16:50 |
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(filelink)
Personal experiences of improved muscle strength on the MP without exercise
I have been mostly bedridden for the last 3 years, and this past year I have been the least mobile, hardly able to leave the house and rarely walking much further than a few metres.
But, after 8 months on the MP, I am developing muscles in my biceps and abdomen - with NO exercise. The MP is my only treatment, so I think the fact that I am developing muscles although I am (extremely!) inactive shows that removing the illness is more important in building a healthy body (and muscles) than exercise. ~Shadowzone
See The effects of CBT and GET on patients with ME.
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see also Grace Success regaining muscles and use.
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I too know what it's like looking at loss muscle . My muscles now just keep getting better. I even had a arm wrestle the other night , something I would have been to weak to even contemplate.
My fingers keep getting stronger. I had been doing knitting since I become ill, as it was the only thing I was able to do. Often I was too ill to do this. So you may want to think about a activity that you may feel like doing. The muscles I first felt I was able to use, were the first ones to improve.
'old science' says "exercise your muscles and they will improve". With MP I found it to be the other way round as your muscles get better then you can do/'exercise'. ~Grace
Last edited on Tue Jan 30th, 2007 01:59 by Meg Mangin R.N.
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Fri Feb 9th, 2007 00:20 |
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(filelink)
Martial arts
As a fellow martial artist, all I can say is that it takes a wee while to come to terms with the fact that you are no longer bullet proof.
I have experienced dizziness, cramps and exhaustion before during and after training and it can hit you at any time and is completely unpredictable. After years of trying different solutions, I have come to the conclusion that there is absolutely nothing you can do about it. In my opinion, supplementation and hydration techniques have no effect.
Listen to your body (at least a little more than ususal - which I suspect is never) - train hard on the good days and ease back on the bad. It will pass as you recover and that process is slow.
I concentrated hard on techniques that optimised power to effort ratio (most effect for least effort). I believe now that my martial arts has a flowing quality and is better now than it would have been had I not been ill - funny that!!! ~Guss
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