Category Archives: Exercise

Exercise Intolerance

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MITO and Exercise Intolerance

Because of my Mitochondrial Myopathy, my muscles have always fatigued very quickly. It’s called exercise intolerance, as my muscle cells produce the ATP energy packets in an inefficient way. When I was teaching, I was walking around the classroom most of the day. But since retiring, and after our caregiver season passed, I mostly sat at the computer. My muscles are weaker than they should be, because of my poor choices. At the time I felt so bad I didn’t imagine that I could exercise.

I had major skull base surgery in July, and afterwards I was in a very weakened condition. Increasing activity level is an important strategy in The Energy Blueprint* program I’m trying to follow. I knew I’d have to make the suggested changes slowly.  But the other strategies I’ve incorporated from the Energy Blueprint have raised my energy level a good bit. So I felt safe in trying to start exercising a little.

Starting Slowly

I started by walking to the mailbox and back, which is maybe 50 feet or so. Very gradually I increased the length of my morning walk until I was walking a circuit around our house on the driveway, sidewalk, and patio. I got up to about a quarter mile and was walking at a fairly quick pace. I looked forward to getting out in the morning sun and exercising.

But, I overdid something and my left foot became extremely painful in the arch. The pain was at its worst first thing in the morning when I put weight on it. Based on my internet searching, I think I developed Plantar Faciitis. I slept in my shoes for about a week to help stretch the arch. And I started putting my shoes on first thing in the morning.

I also quit walking or standing any more than necessary in the house, because of the pain. And you know what THAT did to my painstakingly developed exercise routine. So I temporarily moved backwards in my efforts to overcome the MITO induced exercise intolerance.

SilverSneakers

Now the foot is much better, but still a little tender. I’ve increased the amount of indoor standing and walking activity, AND I’ve joined a gym. My health insurance provides free gym membership through the SilverSneakers program. And I decided to take advantage of it.

They have machinery that raises my heart rate and exercises my legs without standing or walking on the sore foot. I’m alternating using the recumbent bike and the arm equipment, so my muscle groups have time to recover. It will be a while before I’m strong enough to use most of their machines, but it’s great that I can be active again!

Working on it

I can definitely tell that my exercise tolerance level has moved up a notch or two – that I can do more before I feel the muscle cramps, muscle fatigue, and jerking. I still have to be very careful not to over-do. And sometimes I misjudge my tolerance level and pay the price for it, like my foot pain. But the prize of being more active is worth the time spent to overcome my exercise intolerance.

Physical Therapy Helped a LOT

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I went to Physical Therapy three times a week for six weeks, and the exercise has made a huge difference for me. I thought they were going to kill me at first. It took a few sessions for them to appreciate that they could not push me the way they would most people.

Exercise Intolerance

Exercise intolerance is a common symptom with Mitochondrial Myopathy, and I sure have it! My muscles were so fatigued the first couple of sessions that it was all I could do to walk out of the place, even with a quad cane.

Circuit Training

So they cut back on the number of repetitions and rotated me through a wider variety of exercises. That way each muscle group had a chance to recuperate before being challenged again. We finally worked out a circuit of squats, knee lifts, leg raises, and such in sets of ten. I never did get to where I could handle more than two circuits of ten, but that was SO much better than when I started.

Adapted Exercises

I found out pretty quickly that the lying down exercises, particularly the bridge, aggravated my neck. (One of the fusion screws from my surgery last year never did completely fuse bone to bone.) So they helped me find substitutes that could all be done either sitting or standing.

We have a safety bar along one wall in the bathroom, so it’s very easy for me to do all the standing ones there. And there’s a sturdy chair in the bedroom just perfect for the sitting exercises.

Staying Motivated

That means there’s only one obstacle now to improved mobility – ME!!

The challenging part is making myself continue with the physical therapy here at the house. I pray that I can stay motivated this time, since I’m so pleased with the results!!!

Physical Therapy Progress!

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Exercise

I’ve been to physical therapy five times so far, and I started seeing a small improvement on the last two sessions. I have scheduled sessions for later this week and three times next week. Then I plan to stop and save the rest of my PT allotment for the year, just in case I need them for some other issue.

I can manage all the exercises they have me doing here at home, except for the equipment. It’s just a matter of making myself spend the time to do it. It’s way too easy for me to sit at the computer too much. I can always find something that needs doing online. I work on my blogs and online stores, as well as our free Plushmemories Facebook search service and the CubeCart forum I help moderate.

I’m headed in the right direction, and I’m very relieved about that. I became so weak while on the Clonazepam I was afraid I would never get my strength back. I’m very thankful my fears proved to be groundless.

Tizanidine

As for the Tizanidine prescription my Neuro put me on, I’m not overly impressed. It seems that it helps me get to sleep very well. But when it wears off about 2:30 or so in the night – I CAN’T get back to sleep! I’ve had that issue off and on for years, and it’s very frustrating. There have been a few nights when my muscle spasms were so bad before bedtime that I felt like I just HAD to take the med. And then I ended up being awake for hours and hours, unable to fall back to sleep when it wore off.

So I’m very happy with the muscle strength improvement I’m seeing at Physical Therapy, but not with the Tizanidine.

Tizanidine plus Physical Therapy

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My Neuro is trying me on Tizanidine (Zanaflex) for my muscle cramps. He also prescribed physical therapy to help me build up my leg and core muscles again. This med is a short life drug meant to temporarily relieve the spasticity of Multiple Sclerosis patients. So, like every other drug he has tried for me, this is another off label drug. There are no meds that are designed to treat Mitochondrial Myopathy. So he prescribes meds created for other diseases and disorders that involve muscle spasms or seizures.

Tizanidine

I’ve only had a few doses so far, but I can tell it takes about an hour to take effect and works for maybe 5 or 6 hours. Of course he has me on the lowest possible dose right now, with the prescription providing for three times a day if I need it. I’ve used it the last two nights to help me get to sleep. That’s when the cramps are the worst, because my mind is not occupied with anything else to distract me from the pain.

Physical Therapy

Yesterday was my first time to go to PT since I went last year after my cervical fusion surgery. It’s the first time I’ve had therapy for my legs in many years. And I’m the first client with Mitochondrial Myopathy this physical therapist has ever worked with. She found out very quickly just how weak I’ve gotten. I don’t think she was prepared for how easily I fatigue to the point of jerking and twitching. So she plans on alternating working on my core and leg strength to keep me from losing control of my muscles so quickly.

I have been trying to exercise here at the house more and more each day, but I am obviously still very weak. I’m much better than I was after trying to use Clonazepam. But I’m not self disciplined enough to make myself exercise as much as I need to. It’s just too easy to sit, since I don’t notice the cramps as much when I’m busy on the computer. So I am confident that having someone make me work harder than I want to is going to be good for me.

And I can only hope that the Tizanidine helps with the muscle spasms. Time will tell.

Making Progress

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I’m pleased to report that my exercises are actually showing improvement. My neck is still giving me trouble, but I have been able to add a small resistance to some of the neck exercises and still do 10 repetitions. I see this as a sign of progress. But I am particularly pleased with improvement in the leg exercises. When I started I could not do a straight leg lift with my left leg at all. It simply would not budge. Now I can raise it for 10 repetitions, although the muscle starts complaining after the first 5. That is a huge improvement! And I can tell that I’m walking better, too.

I’m now on many of the natural herbal versions of my vitamin and supplement routine, as well as taking the full Mito Cocktail regimen. There’s really no way to be sure if the muscle improvement I’m experiencing can be attributed to the exercising, the supplements, or a combination of both. I assume it’s a combination of consistent exercising and the high powered doses of vitamins and cofactors I’m taking. Insurance won’t pay for any of these supplements, so to say the least – they’re expensive. But less pain and my increased energy make it worth it to us.

I continue to read everything I can get my hands on about vitamins and supplements, and I’ve learned a lot and been reminded of much I had already read about. I am now taking a low dose of Prozac, and my Neurologist prescribed Neurontin for pain, so maybe my improved outlook can be attributed to that – but I’d like to think I’m feeling better because I AM better! Either way, I’ll take it!

Doing What I Can

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I’ve had my final Physical Therapy session for my neck. I’m definitely not hurting as much as I was before going to him, but I still have a lot of pain after doing certain things and by the end of the day.

I end up in considerable pain by the end of every meal, because I have to take off the neck brace. It’s too easy to choke with one on. I can’t ride in a car for more than a few miles without beginning to spasm, even with the neck brace. Hubby had a brainstorm the other day, so we bought one of those egg crate mattress toppers. We cut a piece to fit inside a pillow case, and we now have that in the passenger seat, so my back and neck are more cushioned from road vibration.

We moved a recliner into my Sunday School classroom, so I can hopefully get to a point that I can sit there on Sunday mornings without having to use the neck brace. I didn’t make it all the way through without the brace last Sunday, but it was a start.

We’re scheduled to move back into the sanctuary on April 1, so I have a few more weeks of exercise before I have to deal with sitting in a pew without the support of a high back. That’s still my goal – that I will be able to sit in the pew with the neck brace on all the way through the worship service. But if I have to lie down in the pew before the end of the service, I will. I’m not going to let this disease keep me from going to church!

As I understand it, they do the muscle biopsy in a muscle that is not severely weakened yet, which certainly explains why mine was done in my Deltoid arm muscle. The Physical Therapist gave me some leg exercises to gradually work on here at home, and I was shocked to find that my legs are as weak as they are. The hardest exercise for me is to lie on the bed with my toes pointed straight up and one leg bent. I’m supposed to pick up the straight leg 10 times. I can get my heel off the bed a little, but not enough to clear my calf away from the mattress. So it’s now pretty obvious why walking is so hard for me. Hopefully, if I’m careful to work on this just a tiny bit each day, I can improve my leg strength over time.

I’m continuing to take a meal’s worth of vitamins and supplements at meals and in between snack times – many of them are part of what’s called a Mito Cocktail, and we’re very careful to eat as many Super Foods a day as we can.

I’m drinking about 90 ounces of water or green tea sweetened with Stevia every day, as staying hydrated is very important. I’ve also started keeping a small hot pad in the small of my back set to the lowest heat – as any energy I use up staying warm is energy I don’t have for my muscle, brain, heart, and digestive system cells.

I have a follow up appointment tomorrow with the same UAB doctor who diagnosed my Mitochondrial Myopathy. I have a LONG list of questions for him, so we’re praying we get some answers.

I Over Did It

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I’ve been going to the Physical Therapist for several weeks now, and I can see some improvement in arm strength. I have good days and bad days as far as neck and back pain go, so I’m still using the muscle relaxer and pain meds when I can’t take it any more. I’ve also gradually worked up to using the TENS unit the better part of the day now.

Just to give you an idea of how little it takes to fatigue my muscles – I’m doing 10 pulls with bent elbows of the easiest tubing, 7 without any tubing with elbows at my side moving my fists out as far as I can to the side, 10 shoulder shrugs, and 7 head turns each way. These are all held about 2 seconds each. And that’s it. The therapist doesn’t want me doing any more than that. Some workout, eh? I do that twice a day, but on some of the worst days I just didn’t feel like it was a good idea.

We’re still getting out of the house most days, not just for PT and doctor appointments, because I need to walk to keep my leg strength up. Standing and walking mean I’m holding my head up, even though I use the soft neck brace most of the time when we’re out.

Wednesday I just did too much. It’s my own fault, because I didn’t tell hubby my neck was bothering me as much as it was, so we didn’t come home as soon as we should have. I won’t make that mistake again. He and I have talked about it, and we’ve worked out a signal, so he’ll know I need to go home (that won’t upset him thinking something’s terribly wrong).

The therapist said he could definitely tell I’d over done things and told me to take it easy for the next few days. He said it’s not unusual for someone to over do when they’re beginning to feel a little better.

I’m so thankful my hubby and family are supportive. It’s sad when I read about people in the Facebook MITO groups whose families are unsympathetic. This is an invisible disease. I don’t LOOK sick, unless I’m wearing the neck brace. And that doesn’t telegraph my digestive and elimination problems, my cold and exercise intolerance, nor my memory issues.

Compared to others I’ve met online I’m very blessed to be as unaffected by my MITO as I am. I thank God for that.

Very Busy Week

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We had quite a week this week. With two Physical Therapy appointments, a Neurology appointment, a Podiatrist appointment, and a Hygienist appointment at the dentist, we’ve been very busy. And I’m really worn out. I’ll be sure to not let the appointments end up like that again.

We go to the dentist regularly, but I’ve always had trouble keeping my mouth open wide all that time. Now I understand why, as my jaw muscles simply fatigue so much that it’s very painful. And that has set my neck into spasms in the past. I sure didn’t want that to happen right now, as painful as my neck has become.

I found out a long time ago that I could deal with any lengthy dental work better if I asked for a bite block. That wedges my mouth open without me having keep it open myself. So this time I asked for the bite block when I got my teeth cleaned, and it helped a lot.

The Hygienist said my gums were bleeding more than usual. But that didn’t surprise me, since I’m now on a rather large dose of Coenzyme Q10. It acts like Warfarin, a blood thinner. So I guess the next time I have work done, I’ll need to stop the CoQ10 ahead of time.

The Physical Therapist is spending most of my time there trying to relax my neck, shoulder, and back muscles with moist heat and the TENS unit, as well as some wonderful massages and some neck traction. As far as “exercise” I spend time in between the heat and massage sessions just “sitting”. That doesn’t sound like exercise to you I’m sure. But for me to sit unsupported with less pain in a regular chair without the neck brace is really exercise, because my neck muscles have to hold up my head all on their own. It was easier to do today than last time. So the little home exercises he gave me to do, plus what he’s doing at therapy are already helping a little.

He set my TENS unit for my current needs and gave me a diagram of where my hubby will need to put the electrode pads. Hopefully that will mean I can use the TENS unit more and depend on the muscle relaxer and pain meds less.

So I continue to do what I can to improve my situation as much as possible.

First MITO Physical Therapy Session

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I had my first session with the Physical Therapist today since my Mitochondrial Myopathy diagnosis. I’ve been to this same PT facility many times over the years, starting back when we took my mother when she was recovering from a broken hip. She was in the full throes of Alzheimer’s at that time, and they were super kind and gentle with her. His staff have helped me personally in the past with neck pain and difficulty walking.

So I knew if I called ahead of time and asked the director to call me and discuss my diagnosis before my first appointment – I knew he would do that. He actually called me on a Saturday! He said he had had several patients over the years whose ultimate diagnosis turned out to be Mitochondrial Myopathy, but that he would catch up on the current thinking about how to help me. He seemed confident that he could improve my neck muscle strength and alleviate the referred back pain I’ve been experiencing for some months now.

He spent the better part of 2 hours with me, asking lots of questions, and I could tell that he had truly been doing considerable research about Mito. I also shared with him some of the information I have found from MitoAction, too. His overall message to me was that he could help, but everything would have to be done very simply and slowly, with only a few minimal exercises at a time.

I’m to see him again this week on Friday, and he gave me a few extremely simple exercises to do twice a day for just a few repetitions. After spending some time with a TENS unit set up at very low volume with a large heat wrap around my neck at the same time, he then did a slow and very careful massage of my neck and back.

I asked very specifically if a reasonable ultimate goal for me would be able to sit in a regular chair and then the church pew for the 2 hours that Sunday School and church require. I currently take a muscle relaxer and pain med before going to church on Sunday, and I use the padded neck brace from the time we leave our house until we ear lunch. It’s not considered safe to try to eat while in the brace, due to possible choking, besides the fact that it’s very awkward to try to do so. I’m pretty much wiped out and in pain for the rest of the day.

Right now our church sanctuary is being renovated, and I sit in a regular chair in Sunday School, but I’m sitting in a high back upholstered chair from the vestibule during the church service we now hold in our Fellowship Hall. I explained that to him, and that I had recently had occasion to sit in another church on a padded pew, wearing the neck brace, for about an hour and a half and was in severe pain by the time we left.

He did not think I would ever be able to sit without head support through both Sunday School and church, even after PT. So that means we’re going to have to make arrangements to get a wing back upholstered chair for my Sunday School classroom. Then hopefully I’ll be able to tolerate sitting in a pew for the worship service without being in so much pain.

I had hoped he would say that in time he could rehabilitate my neck so sitting would not be such a problem, but it doesn’t look like that’s going to happen. I’m glad he expects to be able to help me some. I’m thankful for that.

If you’ve read this far, I hope you’ve followed some of the links about World RARE Disease Day on Feb. 29th and found some way to spread the word about the need for more research funds. If you can donate – thank you!!

Seeing Neuro This Week

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I am still very weak, with little energy for standing or walking. I’ve tried to gradually increase my exercise level, hoping to build up some strength, but so far it’s not making any difference. I have been off the Lamotrigine for almost 2 weeks now, so it’s a matter of wait and see what the Neuro thinks when I go back to see him this week. At least I’m not jerking a lot. I’m very thankful for that.

As part of my physical therapy and our weekly outing we call our Date Day, we decided to go to a huge yard sale with hundreds of booths. Knowing my stamina level, I used the walker with the seat, which was definitely needed. It took us about an hour to walk through the whole thing, with a few stops to look at interesting items. But we didn’t find anything we wanted to buy. The seat came in handy, as I knew it would, but I was also glad to have the big swivel wheels. They made the walk easier than the simple kind of wheeled walkers do.

So, I continue to spend most of my time working on efforts to help tornado survivors thru our free Plush Memories Lost Toy Search Service and also a Facebook site called Wedding Dresses for Tornado Victims.

We aren’t physically able to get out and help with the debris removal and other urgent needs of the survivors of the April 27th tornadoes in Alabama, but I can help through the computer.

We have well over 150 Fabulous Finders eagerly awaiting their chance to unite replacement stuffed animals, dolls, and blankies with the children who lost them during the storms. And the Facebook page now has over 50 Wedding Dresses, Bridesmaid’s Dresses, and other wedding related apparel donated, as well as donations of wedding related services, such as invitations, alterations, and flowers.

I’m now trying to find ways to reach out to the pastors of churches that were damaged or destroyed during the tornadoes, hoping to find the brides who will need help with their weddings. And I’ve reached out to several Toy related sites on Facebook, so they know that we can help individual families replace the most precious of lost toys.

So I stay busy, doing what I can, and pray that my Neurologist will be able to find some way to help me get my strength back.