To Exercise Or Not To Exercise?...

[cordila]

I've looked at my flabby arms one last time! I can't take the sight of my atrophied muscles a second longer but when I go to work out it's a disaster. It's been 6 years since I've been dx'd with dysautonomia and about 9 months since I've been dx'd with mito. I hear so many dysautonomia people say exercise helped and so many mito people say rest rest rest is the only way to refuel. I recently purchased a treadmill and was walking on it at 3mph for 20 minutes a day 3x's a week. That lasted a short time until I could barely make it through the days anymore. I spoke to the trainer at the gym across the street who said that weight bearing exercises (vs. aerobic exercise) would be better for me in regard to building up ATP. I used to be a huge gym and yoga bunny and prided myself on my fit little frame. Now I'm a stick covered in flabby flesh and I really can't take the site of myself anymore. And separate from the pure vanity of it all, I want to feel better.

Does exercise help? Does anyone else deal with mito/dyauto and notice a difference with exercise? Does anyone notice a difference between weights and walking? Is it helping? Is it hurting? Do atrophied muscles make you cry?

Running - not an option

Walking - ok but I fatigue fast

Swimming - great but I am not close to a pool

Yoga - not happening. The upside down and twisty-twisty of it all brings up gastrodrama extraordinnaire

Weights - ???

Pilates - ???

[firewatcher]

Oh Baby! Am I crying! I can barely walk and I had Pilates on Monday. It hurts worse today than yesterday. I don't know if I have mito, but I know I have exercise intolerance. I'm a whining, shuffling, stumbling mess right now. Everything hurts whether i worked it or not. This is supposed to be good for me, but other than weight-loss, I can't see a benefit and it has been over 18 months! OW! Ow! OWWWWW!

[Noreen]

Recumbent bike with arm workout/rowing motion type option has seemed to help. However, it so very slow going trying to get up to any sort of tolerance but I have had a bit going on lately.

Three times a day for 5 minutes and one of those times I am now using the arm thingy. I am still not dialling up any resistance yet, though. It is an improvement - started with just 2 times a day for 2 to 3 minutes. The doctor kept telling me I should be doing 30 minutes of aerobic exercise and I kept sliding back to dysautonomia netherworld whenever I tried.

[cordila]

... it has been over 18 months!

That's awesome! How often do you do pilates? I've never done it. Do you feel like it's easier to do than other exercises? Reen, have you ever done any weights? It sounds like all your stuff is cardio (other than the 'arm thingy'...what's the arm thingy? )

I've heard people say that they exercise a few times a day. Does that seem to help vs. doing it all at once?

[juliegee]

I am blessed to be at a point where I can work out- really hard. Sadly, it hasn't really improved my stamina. By 4 or 5PM, I'm totally shot- pure & utter exhaustion. I fall asleep the second I sit down in the afternoon . So frustrating.

I get a lot of good from it, but it hasn't been the miracle cure I need. Like Jennifer, I don't know whether I have mito or not. I do know I'm always exhausted. AM is better/Cortisol is higher. By early afternoon, I can barely move.

Waterbaby, I recommend moving over not moving. Deconditioning makes everything so much worse. Because you have a history of being so fit, I suspect you are going from 0 to 60mph. Really try to up your activity by tiny bits. Work it into your lifestyle as opposed to facing the dreaded treadmill. For instance, I always park far away from the store's entrance. It hurts and exhausts me, but in the long run I know it's beneficial.

Pilates is a great weight bearing exercise as you use your own body as the weight. The best thing is that most of it is mat work, so you are lying down- YAY! Start with a class to get the breathing and forms correct. (BTW, THAT is a lifetime aspiration, trust me.) Make sure the instructor knows your limitations. Move at YOUR pace. Call out for modifications when you need them.

I'm proud of you for trying. It takes enormous will power.

Hugs-

Julie

[cordila]

Moving over not moving. Check. I can do that.

The problem with moving at my pace is that my pace is currently a dead stop. Ha! I'm feeling like I could use a little push but from someone who knows what a mito-push looks like and when to stop. In a crazy twist of fate, a private pilates studio just opened up in my neighborhood. Actually directly across the street!

I have the same energy lifecycle as you, Julie. Start off in the morning with a bang and then a slow peeter to about 4 (sometimes as early as 2) and then a complete bottom out ending with a crawl into bed at 8. I'm really hoping exercise will do something for me. If not in the vain-put-back-my-muscles arena then hopefully in the increased energy zone.

[Noreen]

... it has been over 18 months!

That's awesome! How often do you do pilates? I've never done it. Do you feel like it's easier to do than other exercises? Reen, have you ever done any weights? It sounds like all your stuff is cardio (other than the 'arm thingy'...what's the arm thingy? )

I've heard people say that they exercise a few times a day. Does that seem to help vs. doing it all at once?

I was severly deconditioned from spinal fusion therapy. I can tolerate doing a couple times a day without totally blowing my patience and tolerance quotient - if I lived alone I could push myself more and recover with come out demands on me.

The arm thingy- there are poles which come up from the base slupporting the seat - they pivot and can be tightened in order to increase resistance - I guess in essence I would liken it to the arm movements with cross country skiing - you are pushing and pulling the poles as you ride the bike/

Cheap arm tricks are to use a can of soup and do ten arm curls, etc. every hour as tolerated. It is more about technique and repetition than the item. You could try it for a week and see how you do.

In the past, I did Tai Chi and had wonderful results with my back with it. If there is a course nearby, that might bear looking into.

[firewatcher]

Yup, 18 months and counting...

Hurts every time. I can do once a week as well as most "normal" people, but my suffering and fatigue are far worse than "normal." I tried to work up to two times a week, but I crashed completely. I used to be a fitness hard-body: free-weights 5 days a week and light cardio 6 days a week. I was BUFF! Then I got pregnant. It's been downhill from there. I take private Pilates classes with one partner who has MS. My instructor works at a Physical Therapy clinic and is under their direct supervision. She really doesn't understand, but she asks how many "spoons" she can use for that session and always pushes for every one. Having a physically well-matched partner has helped tremendously. It keeps you accountable and you don't feel so alone when you can't do something. I agree with Julie, use it or lose it! Whatever you can move, you need to move!

[TXPOTS]

Glad I'm not the only one who starts out ok in the mornings and starts to tire by 2pm. In fact, I am heading to bed now (8pm).

My mom made a purchase for me that literally saved me. It is a Spirit recumbent bike with a high back. I started out cycling leaning back and only doing a few minutes at a time. I then started walking around the block with my husband or mother watching me in case I keeled over. I cried and whined and gagged. I kept it up and now I jog 5 miles/day and ride the recumbent bike with my head up for an hour. Unfortunately, I still have POTS and can not tolerate quiet sitting or standing for long. Forget restaurants, grocery shopping, and getting my hair done. I am still extremely debilitated, BUT I never in a million years thought I would ever run again after being bedridden for a year. Small blessings. Weight lifting and pilate type exercises aggravate my symptoms for some unknown reason, but I know many patients benefit from resistance training.

I would start with sitting type exercises and maybe try graduating slowly to be more upright. Very best of luck. I know how frustrating and discouraging this.

[cordila]

Wow! That is really amazing! 5 miles a day. I am going to focus on your successes until I have my own! Starting tomorrow I am going to get serious about getting moving. It's clear that it's doable - I think part of me felt like I might completely bottom out by doing so but from everyone's stories I can see that it's not the case. Even if it knocks you out you all are still doing it! Thank you for the inspiration. I'll let you be the boost that gets me moving my (saggy) tail again.

[scarfgirl]

It takes FOREVER to build up the stamina necessary to perform 'normal' forms of exercise. If you try by starting out on a treadmill you'll just make yourself sick. If you can do a recumbent bike, great, but even that may be too much. I can now use a treadmill on my good days (but never 5 miles, oh my!), but I had to go through **** for several months to get that far. I highly recommend seeing a physical therapist that's willing to learn about dysautonomia and working with them to start off.

I also really recommend, if you can, using the Wii Fit game. Because it focuses on posture and core strength--a more eastern approach to fitness, it provides you with relatively easy exercises that really do a lot to build up the muscles that give us a better quality of life. And while I'm extremely sensitive to coat hanger pain flare ups, I surprisingly don't experience them with WiiFit.

[Brye]

My favorite exercise is the recumbant bike. If I'm having a bad day I just slow down and decrease the resistance. If I'm having a good day I push a lot harder. I'm in a cardiac rehab class and the instructor has given me a work out to do and he was good about trying to limit position changes. I've gotten stronger and have noticed I get less winded when climbing stairs. I was hoping it would eventually improve my energy level. I tire out as well between 3 and 5, especially if there is not a nap. Still not noticing any extra energy but I need to stick with it!! I hope you find a work out that helps you!!

Brye

[TXPOTS]

Wow! That is really amazing! 5 miles a day. I am going to focus on your successes until I have my own! Starting tomorrow I am going to get serious about getting moving. It's clear that it's doable - I think part of me felt like I might completely bottom out by doing so but from everyone's stories I can see that it's not the case. Even if it knocks you out you all are still doing it! Thank you for the inspiration. I'll let you be the boost that gets me moving my (saggy) tail again.

Thanks. I still can't believe it. It's really, really bizarre, but once I started exercising and got my stamina up, I realized I felt better when jogging then not moving. I get all the signs of low blood flow to the brain shortly when trying to stand, sit, or do slow paced activities, but not when jogging. I know what it feels like to barely sit up, so I totally understand what a big hurdle it is. I agree that a physical therapist or physician guided regimen is the best way to go. I am still grieving for my old life. I want to be able to drive my kids to soccer practice, take them to the zoo, go to restaurants, but I still have the coat hanger pain and brain fog that the previous poster mentioned. On the flip side, I can jog. Never in a million years would I have guessed... Best of luck to all.

[megan2]

Exercise is a bit different with mito versus primary dysautonomia.

The goal is to push to the point of fatigue, but not past. Overdoing it can be harmful if you have mito. However, exercise can also be one of the best things for mito (and for dysaut!).

http://www.mitoaction.org/guide/fatigue-an...ise-intolerance

http://www.mitoaction.org/files/Mito%20Exercise%20Guide.pdf

I have two articles from the umdf...but I don't know how to attach to a post.

They are in mito 101, and if you sign up for a free account you can access it (umdf.org) or PM me and I'll email them to you.

[Mito Momma]

I have a question for you all...

When you exercise and you say it exacerbates your POTS symptoms, what symptoms does it cause? (i.e. dizziness, fatigue, nausea, headaches, muscle pain, etc.)

I have been told that I need to exercise in order to get better. However, 5 minutes on a recumbent bike causes a lot of muscle pain and fatigue. A lot of times I don't feel it until the next day. It's not like the muscle pain experienced the day after lifting weights either. Sometimes I go ahead and exercise on the bike 2 days later so I can get into a schedule of every other day (or at least 3 days a week) but the second time makes me feel even worse. It seems to just compound.

FYI - I have been diagnosed with POTS only.

[abetterjulie]

My difficulty is that I get so short of breath quickly. I get that way just doing everyday things. Does anyone else experience this...and if so, how have you overcome it?

Julie

[dianne.fraser]

Julie and 1fastnurse

My experience might not be relevant, because I don't have POTS - I have general dysautonomia symptoms (fatigue, nausea etc etc) and post-exercise collapse of my blood pressure (while my heart rate stays completely steady). My cardiologist called it cardioneurogenic syncopy. Not exercising keeps my blood pressure from collapsing, but doesn't stop the rest of the symptoms.

Anyway, I always felt fantastic during exercise (it was the only time I ever felt fantastic....), but had a big loss of energy immediately afterwards (along with the need to sleep for several hours), followed in the days afterwards by a worsening of all of my symptoms, particularly fatigue and heart symptoms (eg irregular heart beat and chest pain). I didn't usually become breathless, but I would feel as though I was trying to suck oxygen out of a really thick fog. I would become less and less able to sleep on my left side - it would feel as though I wasn't getting any oxygen at all. The effects of exercise seemed to be cumulative - increasing symptoms with continued exercise.

I've tried different types of exercise, including walking, very light weights, theraband, swiss ball, various floor exercises (including yoga flat on my back) - even light exercise seems to aggravate my illness, beginning with a build-up of chest discomfort (it feels as though someone has stuck a garden hose in my chest and over-filled my chest cavity).

Most importantly, my iron collapses with exercise, and I'm not able to resolve my anaemia without at least two weeks of bedrest.

I know that we're supposed to keep exercising because of the danger of deconditioning, but I honestly don't think I would still be working if I had not stopped exercise.

With best wishes

Dianne

[toddm1960]

I can only answer for myself because I've found information online stating both mito pateints need to exercise and that that they need to conserve energy. My doctors feels there are so many variations on mitochondrial diseases each pateint needs to try for themselves, use it or lose it might be a bit rough in the case of mito.

I no longer feel that I can lift weights, my muscles cramp and give out well before I can do any work with them. I'll even get this cramping from minimal things like streching or reaching too far. I do continue to use my stationary bike, but like 1fast I can do a light ride on Monday and after can't get off the couch or out of bed the next day. Then try again on Wednesday, it never seems to get easier. Being a personal trainer I can see I'm going backward not forward with this, still I continue to try just to help with the deconditioning. I don't see my POTS symptoms changing at all, has anyone seen any studies on GET helping POTS? I must have missed these because I'm hearing many people on this forum saying their doctors are telling them that exercise and time will cure POTS.

I find my exercise is just doing small housework, then crashing for the rest of the day. Clearing dishes, then rest for the afternoon. Running the vacuum in one room, then crash for the afternoon. Small activities are all I can manage.

[Guest tearose]

bulldinky, exercise does not cure POTS or dysautonomia.

I have had the 7 hours of pelvic reconstruction surgery to prove it!!!

We are like a battery, when our energy is depleted we need to stop and recharge. It is NOT like normal people who seem to get stronger over time.

Why it this? They are still trying to figure that out. My sense is that the problem is between heartrate issues and comprimised available oxygen/blood supply to muscle and nerve tissue.

Meanwhile, keep active as you can while relapsed, even if it is lite housework or a series of leg lifts from the bed or floor. In stronger energy reserve (fully charged battery) times, you may see weeks of incredible exercise ability.

Find the balance.

[Mito Momma]

Thanks guys. I got on the bike on Tuesday and felt pretty sore and tired on Wed. However, I wanted to try to do it every other day so I did it again yesterday (Thursday). Now, today, my muscles hurt SO bad. My legs feel like they have 10 lbs. weights on each. I have zero energy. I don't see how I could possibly get on the bike again tomorrow.

I am returning to Mayo on Aug. 11th. I had asked to see a neuromuscular specialist. However, they scheduled me with the autonomic nervous system doc I saw the last time I was up there. She didn't want to schedule me with a NM specialist. I ended up talking to her on the phone and she said, "I think you just need more time." She didn't pay any attention to me when I explained my muscle pain and fatigue.

I wanted to know what you all thought about exercise, and how it makes you feel. For me, it doesn't seem to exacerbate my typical POTS symptoms (i.e. nausea, dizziness, shortness of breath, etc.). It just causes more pain and fatigue. That's why I want to get evaluated for mito.... If only I could convince my doctor to do so.

[ramakentesh]

My answer - both theories supporting either are speculative. Find what works for you from your OWN experience. Patient's experiences seem vastly different. The research is contradictory.

[ramakentesh]

Patients often fear feeling uncomfortable short term, but few have died from the consequences of POTS. Sometimes short term discomfort might eventually change into drastic improvement.

[toddm1960]

Hey rama nice to see you back, hope you've been well. Are you now a married man?

I'm more worried about the mito affects rather than the POTS affects, the feeling I get after exercise is more like being hit by a bat and bruised more than an over used muscle sorness. Like I said I still try, but feel like I'm going backwards.

[futurehope]

Pre POTS - I used to exercise every day. Weights, abs, walking.

After POTS - I kept trying to do something in order to pretend that I could continue exercising. I would take walks, do abs every day, do some weights, then I would need a nap, or be overly exhausted (sometimes this reaction was delayed).

Recently, in the last two months, I've quit exercising all together, and I feel great. I'm living my life, doing a lot of things, took numerous vacations, pushed myself to expand, didn't need naps and now I'm wondering????

Should I forget about exercising or what? Deep down I'm an exercise nut, but it sure feels good to participate in life so....I don't know how I'll proceed in regards to exercise? To do, or not to do, that is the question?

[nmorgen]

My new cardiologist had me take a stress test last week. It was on a stationary bike. As long as there was no resistance my hr increased to 125, but as soon as it upped the resistence it shot to 198. He told me that it came down like a normal heart and he feels I should be able to start using our stationary bike, but with no resistence. I asked him about doing some muscle building exercises and he told me no. That it would probably cause adrenaline surges and make my POTs worse. Has anyone tried muscle building exercies with adverse reactions?