Jump to content

Any Tips...?


Jacquie802
 Share

Recommended Posts

Hi, I have decided to try exercising, obv light exercising :) . I haven't really done any exercising lately because I haven't been feeling well along with having the vertigo and dizziness. Does anyone have any tips for me?? Do you tend to have bad symptoms at first during or after working out?? Also, I am out of breath and my heart rate jumps up just going up a flight of stairs, so I am going to start out small..If anyone has any pointers I'd greatly appreciate it. To be honest I am a bit nervous about it because I don't know how I am going to react to exercising (heart, breathing, etc.). I figure I might as well start because I don't want to gain more weight than I already have and more importantly I don't want to lose any tone I have left <_<

Jacquie

Link to comment
Share on other sites

Hi,

I was a runner when my POTS symptoms first got really bad. I would run and my heart rate would elevate into the 180's within less than a minute. That went on for a long time. As my POTS progressed, my heart rate would continue to rise even after I stopped exercising. It was pretty scary. Eventually, I had to stop altogether until I had my diagnosis. I also had a real problem with stair climbing.

I really missed the exercising, and I found that lack of exercise seemed to really contribute to my exhaustion. Any time I attempted any exercise though, I would immediately experience uncontrolled tachycardia. Shortly after my dx, I had an MRI to rule out MS and found out that my cervical spine was really in bad shape. My neurologist ordered physical therapy. I didn't have much of a problem with the isometrics that I had to do for my neck/shoulders since I did most of them sitting, and after a while, I talked to the PT about a program to begin building strength up in my legs. He gave me a regimen of exercises that I could do laying down. They were really powerful, and worked really quickly. (they made me really, really sore initially, though) As long as I was laying down, I didn't have any problem at all with disequilibrium or tachycardia.

As soon as my legs were stronger, I found that I could tolerate some walking, and between that and my beta blocker, I eventually resumed a pretty normal life that includes lots of physical activity. My PT insisted that I start walking on the treadmill at only 1.5 miles per hour for 10 minutes at a time, but I was able to up the speed pretty quickly. I still can't run, and probably won't ever be able to. My beta blocker controls the tachycardia for walking and limited stair climbing, but I would really need to up it in order to run, and I'm an asthmatic, so I really can't do that.

I've also seen others on the forum say that a recumbent bike works well for them. That would make sense, too. Just remember to start slowly and listen to your body. Good luck!

Carolyn

Link to comment
Share on other sites

jacquie -

i would definitely do a search on exercise as there have been A LOT of discussions, both recently and in the past. people vary a lot in what they can/can't do and what works for them but a lot of the "top picks" seem to be recumbant bike, swimming, PT (land & water), pilates (esp. floorwork), walking, cardiac rehab. other things too but those are the particularly popular ones. you'll find a lot of detailed discussions though with a search about the things i mentioned and more.

hope this helps,

<_< melissa

Link to comment
Share on other sites

The really important thing about exercise if you have a disease that causes exercise intolerance, is not to overdo it. Don't try to stick to some externally determined schedule of what you think you should be able to do. Don't let someone "nag" you into overexertion. Don't "nag" yourself, either. Don't expect that you will be able to perform at ever-increasing levels. Pay very careful attention to the signals that your own body is giving you. And especially if you have POTS, if you feel that you aren't getting enough circulation in your brain, lie down! The single most important thing is to protect your brain.

Has anyone seen any real clinical trials of exercise in POTS patients? I haven't. The only one that comes close involved military recruits with some degree of orthostatic intolerance. It didn't enroll disabled people from the general population. It enrolled military recruits: people who were functional enough to join the military and well enough to go jogging. Plus, they were a heckuva lot younger than I am. I don't remember the gender breakdown of the subjects in the study, but most people with POTS are female. So I don't think you can apply findings from a population of 20-year-old men to a woman in her 40s.

The studies of exercise in CFS patients evidently have serious methodological flaws (i.e., they included a lot of people who didn't really have CFS to begin with). The more stringent the inclusion criteria for the study, the less benefit was shown.

Some people have exercise-limiting illnesses that wax and wane for reasons of their own. When people with such an illness are in an improving phase, they are likely to increase their activity level and may actually start a successful exercise program. But which came first? The improvement or the exercise? I think that many people who are inexplicably ill cannot exercise much, and many people who are inexplicably recovering are suddenly able to stick to an exercise program. Their participation in an exercise program might actually be a sign of improvement, not the cause. So take testimonials with a grain of salt.

Just remember: The prime directive is PROTECT YOUR BRAIN.

Link to comment
Share on other sites

I don't have CFS or know much about it. But I do know that exercise helps POTS. I think Dr. Low gave me a copy of a study on this when I went to Mayo, so I will have to dig through my files and find it. Exercise helps with heart rhythm and also helps to increase blood volume. I know that my leg muscles have gotten bigger in the last six months since the last time I was measured for compression hose. I also know that I get tachy when I first stand up and recently, the tachy sometimes actually goes DOWN after I start walking. This didn't used to happen before and it must be because my leg muscles are pumping blood back toward my heart. Although I have improved slowly over time, the improvement has been more rapid during times when I exercise regularly, and the improvement has slowed down during the months when I haven't had the chance to exercise. This is just my experience, but I think the exercise has made a big difference for me.

Melissa is right. Exercise seems to come up every few days as a topic, and there is some great info if you do a search.

Link to comment
Share on other sites

I just did a quick search on PUBMED and couldn't find any clinical trials of exercise in people with POTS. When I get back to work after the holidays, I'll be able to do a better search on other search engines.

Basically, I'm looking for any study in which the subjects had a diagnosis of POTS. These would have to be people who come from the general population and are seeking medical care because they are disabled by POTS. Not astronauts, not elite athletes, not military recruits who made it through boot camp but faint on the parade ground, not normal sedentary volunteers, not normal volunteers who have orthostatic hypotension induced by 90 days of enforced bed rest, not elderly people who have ordinary orthostatic hypotension because they are taking all sorts of prescription drugs. Those people don't have what we have, and their response to exercise is entirely irrelevant to our situation.

The study would have to be of the effects of an exercise program, not just a one-day study that shows that people with POTS are deconditioned. The outcome measures would have to be not just exercise variables (e.g., how much the person can bench press) but changes in measures of fatigue and disability, as well as cardiovascular measurements. I want to see improvement in vital signs and ability to perform activities of daily living. I couldn't care less whether I have "tight abs" or "buns of steel." I just want my life back, and I don't want to lose any more brain cells than I already have as a result of the blood supply to my brain being compromised.

The results would have to be analyzed on an intent-to-treat basis, not just a per-protocol basis. In other words, I want to know what happened to everyone who was randomized to the exercise group, not just the people who managed to finish the exercise protocol. Who dropped out early, and why? Did the people who dropped out end up more disabled than they were at baseline? These are important questions.

I will be astonished if anyone can find a study like what I've just described. I doubt that anyone at Vanderbilt or Mayo would have done such a study, because the typical POTS patient only gets to stay there for a couple of days. The study would take weeks or months. I would willingly sign up for such a study and try my level best to comply with the protocol, but I haven't seen one to sign up for. But until such studies have been done, you can't make any sort of evidence-based recommendation on exercise for POTS patients.

No, I would not accept a review article in which some expert expresses his opinion that exercise is a good thing--unless that statement is backed up by a reference to a clinical trial. Even then, I'll have to review the clinical trial.

My theory is that POTS is not caused by deconditioning, and that exercise won't cure it and probably won't even improve it much. If you manage the POTS well enough, the person's exercise tolerance and activity level will probably improve spontaneously. I think that POTS can cause exercise intolerance, and that if you try to be tough and exercise despite symptoms of cerebral hypoxia, you can permanently damage your brain.

Link to comment
Share on other sites

Below is a paragraph from an article by Dr. Rowe at Johns Hopkins, which typifies my experience. POTS is not caused by deconditioning, but, as Dr. Rowe explains, exercise can help to counteract the symptoms. Like the girl mentioned in the article, there have been at least a couple of long-term POTS patients on this forum who were not otherwise improving, but started to improve after starting an exercise regimen. I have not heard of brain damage in a dysautonomia patient from exercise, but agree that one should proceed slowly and carefully.

Whether or not there is a study, the benefits of exercise are widely recognized in the dysautonomia community. It is recommended in articles by all of the leading doctors, as well as on DINET, ndrf, Chris Calder's site, etc. It seems to be mentioned as frequently as salt (on which I don't know if there has been a study either). I guess we will have to agree to disagree on this one...

---------------------------------------------------------------------------------------

Exercise is important in regaining the effects that fitness brings in counteracting NMH or POTS. Because exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found, it must be done carefully at first. When you and your doctor feel you are ready, begin a regular regimen of exercise, finding something that does not make you lightheaded and doing it for brief periods at first, increasing gradually. For example, one girl who had been ill for several years began functioning better once two of the NMH medications were working for her. She began exercising on a treadmill, but this made her lightheaded, so she switched to a reclining exercise bike. Although she started with only 2 minutes a day, she increased this in small increments up to 30 minutes 3 times a week after about three months. Walking, water jogging (the water acts as a compressing force to counteract blood pooling in the limbs), stretching, and Tai Chi or yoga may be gentle ways to ease back into exercise. Remember to warm up slowly before, and cool down gradually after exercise. If you plan to exercise outdoors, remember that extreme heat will worsen NMH or POTS.

A group of our physical therapist colleagues in Baltimore, led by Rick Violand, PT, have helped us to identify a relatively high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in many of our patients with orthostatic intolerance. These postural restrictions have helped explain why some patients were finding that exercise led to substantially worse symptoms. Among those who have the worst of these postural restrictions, several weeks of gentle manual physical therapy often prepares them to tolerate the mild aerobic exercise that would have caused a flare-up beforehand. We think careful attention must be paid to postural asymmetries and restrictions in mobility during the physical examination, and the diagnostic expertise of a physical therapist may be essential to identifying problems. Manual techniques that our colleagues employ include gentle neural mobilization (or neural tension work), myofascial release, and cranio-sacral therapy.

Link to comment
Share on other sites

I am an advocate of evidence-based medicine, which means that I think that recommendations about medical interventions should be based on properly designed randomized controlled studies wherever possible. For centuries, the medical community in Europe (and eventually the United States) was virtually unanimous in their endorsement of bloodletting for the treatment of all sorts of diseases (http://www.mtn.org/quack/devices/phlebo.htm). It made sense according to their understanding of how the body worked, and they could cite lists of patients who recovered after they bled them. Eventually, a few brave dissenters used statistical methods to show that bloodletting was ineffective and in fact did more harm than good. Now, it is only used for people with iron overload disease. So the fact that nearly all physicians recommend something doesn't impress me, if there is no evidence to support the recommendation. The blanket recommendations of "graded exercise" for chronic fatigue syndrome patients made me suspicious, because of the poor methodology of the research that was presented in support of it. I think that exercise is potentially dangerous for a person who is sick or whose vital signs are unstable because of a neurologic problem and should be undertaken with extreme caution and preferably only after the underlying problem is addressed.

The paragraph from Dr. Rowe actually supports that. Dr. Rowe noted that "exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found." Notice that the girl he described started to be able to exercise AFTER they improved the medical management of her condition. Also, they were careful to point out that she chose a method of exercise that does not make her feel lightheaded. This goes along with my rule of thumb: don't sacrifice your brain in order to tighten your abs.

I'm not saying that people with POTS shouldn't try to exercise. I'm saying that recommendations about exercise should be thought out as carefully as a prescription for a potentially dangerous drug. The focus should be more on overall level of activity and functioning, and not on traditional exercise goals for healthy people. I think it is unrealistic and potentially harmful to expect a gradually increasing level of fitness, when we don't know why the person is sick to begin with. I'm also doubtful that the exercise itself will do much good. If it were that simple, most of us would never have gotten sick or wouldn't have stayed sick for long.

I'd like to know more about what the physical therapists have found. I learned very early on (from a licensed practical nurse) to tilt my head forward if my vision blacked out when I stood up too fast. I learned from another nurse (one whose brother had a congenital heart defect) that a lot of my "bad habits" are actually maneuvers that improve circulation to the brain: crossing my legs when I sit, slouching, hunching forward when I sit. I have spoken to several licensed physical therapists, and none of them had ever heard of POTS or had any idea whether they could do me any good. Have the physical therapists from Baltimore published anything about their work?

Link to comment
Share on other sites

You might find that if you start off by sitting on the bikes in the gym, your pulse can increase and you can help your calf muscles without actually risking a syncope, as you're not standing. That's what I tend to find when I'm on the bikes anyway....not that I've even managed that since September!

I am going to get my butt up to the gym over the next few days to get myself better for next term at Oxford...

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...