exercise

[stikker]

I know I should exercise but I have no energy. Breathing is crappy. I am tired.
What do people do? Do you force yourself? I feel like a couch potato but don't know if I should push myuself. Or how far to push myself.

[Sangye]

Stikker, I wasn't able to do anything that even remotely resembled exercise until last fall-- almost 3 yrs after starting treatment. I'm still really not able to "exercise" but can do some mobility types of things.

If you can move some, that's good--keeps blood pumping, joints mobile, maintain muscle and better balance, etc... But unless you're truly feeling up to it, exertion is out of the question.

Two things that have helped me a lot:
1) Pool exercise-- walking in the pool and standing for simple leg/ arm exercises goes a long way towards maintaining strength. You won't believe how much more you can do in water than on land.
2) Pedal exerciser-- set of bike pedals that fits under a desk. You can pedal easily to maintain circulation.

I suggest you start with PT to help you with some basic exercises. You have to emphasize that the Wegs is not at all under control yet, and that the disease and drugs can cause extreme fatigue.

[Lola]

:)I started trying to do "normal" daily activities which involved a tiny bit of arm movement in the housework dept. on March 3. I became nauseated and prostrated on the couch. Very discouraging. But I do keep a daily diary, and just looked back over my entries. I noticed that I am slowly creeping up on being able to do more normal things without having to pay the couch price.

My Dr. mentioned exercise to me today, really made me angry.

I know I need to exercise. I know I look like an elephant - (no offense, Elephant, because you don't happen to look like an elephant). I know I've gained weight on this extra Prednisone.

So I'm with you, Stikker...needing to get some extra movement.
Thanks for the avice, Sangye. If you promise not to nag about it, I'll try to do some of those things listed above. I won't, however, if anybody nags me!

[Sangye]

Oh I definitely get that! I hate it when some doctor tells me to exercise or "try to do more." I tell them I'm the kind of person who needs brakes, not an accelerator. I don't need any motivation when it comes to exercise or doing things for myself, etc.... I actually love to exercise and can't stand not being able to.

I bring up the 2 types of movement more as a PT thing-- not for true exercise and definitely not for losing weight. None of my docs ever mentioned aquatic PT until last yr. I lost so much muscle, range of motion, etc... I had some bad falls because I was so wobbly. A lot of it could have been avoided.

I also bring them up because they're fun and make me feel like part of the living world a little. My self-esteem has really taken a beating with Wegs. I miss being able to use my body for hiking, biking, etc.... With Wegs it just gets used as a pin cushion.

[Lola]

I totally understand that, Sangye - every word.

[Lightwarrior]

I totally understand that, Sangye - every word.

Yeah, me too. I am struggling with trying to keep all my balls in the air and i wonder why I'm tired all the time. My co-workers want me to get a motorized scooter to save me from having to walk with a cane and sit down every 30 feet to breath. I just hate to give in to that, I have given in to riding the stupid grocery store scooter that everyone looks at you like you are invisible or what the heck are you doing on that thing? My back and legs are just too weak to make it by leaning on a shopping cart anymore. I miss walking and thanking my legs for taking me where I want to go.

[Sangye]

I'm worried about you, Lightwarrior. I don't think you're giving your body the rest it needs. High dose pred plus a strong will makes for a worn out, sick Weggie. One thing I've learned is how much energy it takes for the body to heal. If you continually siphon off that energy with other tasks, you can't get better. Since you need to keep working for insurance reasons, I suggest you conserve your energy in every possible way. Part of why I'm so depleted now is because I got worn to the nub pre-diagnosis. I was in excruciating pain for a year but kept going. If the Wegs flame is burning, your body is the fuel.

[Lightwarrior]

I'm worried about you, Lightwarrior. I don't think you're giving your body the rest it needs. High dose pred plus a strong will makes for a worn out, sick Weggie. One thing I've learned is how much energy it takes for the body to heal. If you continually siphon off that energy with other tasks, you can't get better. Since you need to keep working for insurance reasons, I suggest you conserve your energy in every possible way. Part of why I'm so depleted now is because I got worn to the nub pre-diagnosis. I was in excruciating pain for a year but kept going. If the Wegs flame is burning, your body is the fuel.


I resembel those remarks, when you are right, your right. I am trying to meditate on letting go and not pushing so hard. I have to keep reminding myself that letting others care for me is a gift and I deny them that gift when i am stubborn. I don't know why I have to keep learning this lesson.

[onatreetop]

Take it from me ...........please be careful. I to have the willpower for a dozen people and do what I want and pay dearly for being that way.The last injury was the tear in my foot that I will have to deal with for the rest of my life. Trying to excerise everyday and that day twice. Big mistake. Moderation is diffinatly the key. not to much but enough. I have been insanly busy with work and have no time or energy to exercise right now. I am hoping with a few more weeks when things calm down after the holiday and the kids go back to school I can tweak my schedule and fit it in. It does make me feel better mentally and also makes me sweat less during the day. Yeap. If I bring on the sweat for thirty or forty minutes I dont drip all over everything during the day.

[Doug]

I'm sorry to hear that, onatreetop. It is a reminder to us all to review any exercise plans first with our doctors, then not to overdo it.

Even Cindy first checked with her doctors on the Mt. Everest climb slated to start 1st April!

[onatreetop]

Live and learn! Some of us have to learn the hard way I am afraid. It has made me think very carefully now.

[Cindy M]

I am so glad you guys are discussing exercise. I have heard everything from you will feel better if you exercise, when I am sore and exercise I always feel better, etc. I try to tell them that I am simply to exhausted, just doing daily house work can take its toll on me, grocery shopping is a task. My WG is mainly in my sinus's, it is effecting my hearing, smell, and eyesight. When I exert myself, walking up and down stairs my sinus pain and teeth pain is almost unbearable. I try to explain this but without them knowing what the pain is like they don't get it. Living with the teeth and sinus pain on a daily basis is enough without having it increase.

With that said I do try to get a bit of exercise in, just not to the extent they are talking about.

Lightwarrior - you really need to take care of yourself because if you don't no one else will. Your health is your #1 priority. Please, Please slow down and except help when needed and offered. I had to bow gracefully and except help when I needed it, and you know what it does get easier with time. Take care.

[elephant]

Listen to your body. Stop when your tired or having pain.
I use to have severe sinus pain all the time, it meant that my Wegener's was not controlled or the medicine's ( new ) have not kicked in yet. Keep an eye on it.

[Sangye]

This is why I'm a major pain-in-the-butt nag about exertion when people are on high-dose pred. The fall-out comes later and can be irreversible.

Our bodies have a finite supply of energy (true for non-Weggies, too). The disease itself uses an enormous amount of energy. The body's attempt to deal with the drugs uses an enormous amount of energy. (Not only is it trying to detox them from our bodies, but it's trying to remain in homeostasis when the drugs throw it off) So much energy is needed for healing. Before we decided to use energy for exercise, we have to make sure we actually have enough in store.

To be honest, I don't think our docs will have a clue what to say if we hand them our exercise plans. (Other than Cindy's mountain-climbing plans, which are extreme and require doctor input) Especially when we come bouncing in the office on high-dose pred-- it's almost impossible for them to remember that we're not as strong as we appear. When we tell them "I'm doing all this exercise and I feel great" what are they going to say--Stop?

My Wegs doc says "Do whatever exercise you can do without hurting yourself." It really is up to us to monitor.

[Cindy M]

I am really glad to hear from all of you. There are times when I wonder if I am just being lazy, and if I did more then I would be able to build up my energy level. Guilt plays a big part in my life and to not work through it seems like I am looking for easy ways out and it is just easier to sit as opposed to get up and do.

[DEE]

just before my recent flare up i convinced myself i was been lazy so started to walk daily no matter how i felt pushing myself all the way
was ok until melt down and my son told wg consult what i been doing he said STOP
as sangye will tell you i also at the time not very good at listening to my own body always had to push then spent days recovering
now that i have stopped doing this and saying i cant do this today maybe tomorrow and if not tomorrow what does it matter life has become alittle less stressful
so i say those people who say they nag us KEEP ON DOING IT we do listen ;- DEE X

[Doug]

I have enough enegy for one major issue a day- or exercise.

This hasn't always been the case, but I have periods I think must be mini-flares if I were honest with myself. My doctor sees me pretty much annually now, and says my numbers are OK, that there are no indications I'm going off remission. but I think I may insist on seeing him at least twice or four times a year to allay my concern, perhaps catch something in the bud if necessary.

This business of "my knees hurt but I don't have any other symptoms of WG" business is wearing, for example. I have been dealing with knee pains (but no other joints) and some muscle weakness in my calves for a couple weeks. I have good days. I have lousy days. I note that the days I spent the most time on my computer chair are the days I have the most discomfort: I am putting pressure on my Sciatic nerve, which runs over a pelvic ridge resulting from a childhood accident. Whew! I know that sensation well- numbness in the hip and thigh, a penguin walk. (Oh, maybe that's an old guy walk- I noticed my older brother walks like I do! heh! heh! I always make sure he know it, too!)

Oh, yes- EXERCISE , the theme of this thread. Conditions prior to WG left me uncomfortable with some more enthusiastic levels of exercise. Peripheral neuralgia in the feet (WG) and loose knee tendons (damn you Prednisone....mmmmMMmmIloveyounnomnomIhateyounomno msmoochsmoochgivememore! I hate you.) make walk on anything but a flat surface a bit problematic. Having a 20 pound cat (what, about 9.9kg?) (really) helps somewhat as I lift him numerous times a day, and feel strong on my upper body than my lower body in consequence.


I have small exercises designed for seniors that I do with the care center residents that days I help over there, and they do help with my flexibility, the one thing we need to keep in mind while we exercise. If not a Charles Atlas body, at least one as sleek and flexible as a cat's, well, most cats but not Louie! They stretch-hold.

Jack must remember your yoga helped with flexibility and tone, and that is what cat "exercise" looks like to me. I think I will watch my little meatloaf for signs of life, and learn what he does to shed the stiffness of sleeping 24.9 hours straight. Ha!.

[JudyJ]

I am sooo glad you all have addressed the exercise thing. I used to walk everyday and feel great about it but this past year since I have been having this again. I have had the worse time doing anything extra besided going to work and maintaining my home. I had it in my head that I had just become lazy. I even bought a treadmill thinking that I would use it daily but I only have the energy a couple times a week at best. Oh I am so glad that you cleared that up for me. Thanx

[Cindy M]

I am staying with my sister for a few months while my place is being built. She lives in a duplex, bedrooms are on the top floor, kitchen and living room on main and laundry in the basement. I did 3 loads of laundry today and let me tell you every time I did the stairs I was out of breath, shaky legs etc. I then went outside to pick up my dogs droppings for about 15 minutes, my back was killing me by the time I was done. This also happens when I go shopping, walking etc. After each activity my sinus's and teeth throb. I do get headaches everyday, especially first thing in the morning after sleeping on my right side which is the most affected side. I have 3 masses behind this eye from WG which has caused vision and movement problems.

So, when I say that my energy level is low and that I don't exercise much at all I really mean it. I keep hoping to do a little more each day to try and build up my stamina. I would really like to walk or do a flight of stairs, any daily chore without losing my breath or having the sinus and teeth pain.

[Sangye]

Wow Cindy, stairs are really hard. No wonder you're feeling so bad!

[coffeelover]

I try to do some form of exercise 6 days of the week. It might only be 10-20 minutes but something. I love to walk my three dogs so that is my primary source of activity, but I do try to shake it up a bit. I lift lights, very repetitious weights 3 days a week, walk, do low impact 20 minute videos, treadmill (very occasional as it is my least favorite), bike, and my walking takes many paths. I have the opportunity where I live to enjoy a variety of beautiful scenery, rivers and plains to watch my dogs run and get my activity points.
I used to pressure myself to continue to do more and more, but the WG stopped me of that and you know...I like the excuse. I can stop sometimes and smell the roses.
coffeelover

[Sangye]

You're incredibly fortunate to be able to walk like that! Not being able to walk my dogs or be outside really impacts my mood. Not to mention living in a place that is totally ugly and removed from nature. I hope I can get strong enough to get out more.

[Cindy M]

Wow, to me that is alot of exercise. I wish I could do half of that. I am not sure if my inability is my choice or because of the disease. What I mean is simple tasks like doing the dishes, ironing clothes, grocery shopping....leaves me sweaty and weak, my back kills me etc. I do have a dog but can only make it half a block without feeling exhausted, now do I push myself to build up my stamina, I know my WG is not undercontrol because of the sinus pain, headaches etc. Also, I get alot of leg cramps and muscle spasms. I know you are told to listen to your body but at this point sometimes its just easier to not do anything so I really am at crossroads as for how hard to push myself.

[Sangye]

Cindy, I really understand where you're at! I think you should stick to what you absolutely have to do and leave it at that until you get stronger. It's a trade-off. By cutting back you'll lose some muscle for sure. But if you keep pushing, the Wegs will knock you flatter and you'll be in even worse shape.

One thing that has helped me figure out what I can do is to make sure that I have energy leftover at the end of an activity. So if I'm at the pool, I don't keep going until I'm tired. That works when you're healthy-- you can just rest and recover. I leave some gas in my tank.

Sometimes I have to expend all that I have (like yesterday, going to JHU). So I just try to minimize anything extra, like standing at the receptionist desk to fill out my paperwork. Conserve, conserve.

[Carol]

I learned to use the old fashioned word "convalesce". It conjured up lying around on couches in sunny or warm places. I meditated in a sunny room on the bed in direct sunlight in winter, I slept beside our wood fire and I watched TV, and greeted freinds from a different couch. I know it's an old fashioned concept - that of convalescing but this is what I needed to do to get well. Today people expect too much of the "process" of getting well.
regards Carol

[jola57]

Put it down on hospitals throwing people out home when staying would feel better. Medicine has a trend to make us get better quickly without giving us the time to relax and convalesce. This trend started in the 80's and has gotten worse as the money crunch grew bigger. When thinking of convalescence I think of the WW1 wounded in white bandages on rickety wheelchairs sitting in the garden with pretty nurses in their white smocks tending them.

[Sangye]

Carol and Jolanta-- you are so right on with the idea of convalescing. We should use that term on here more often--it's perfect. We expect so much of ourselves and others do, too. I constantly get the "Are you better today? No? Well tomorrow you will be" expectations dumped on me. We're so accustomed to other diseases that knock one flat but allow for steady improvement. The vast majority of diseases are like that. And yet, millions of people have chronic illnesses like Wegs that don't follow typical recovery patterns.

[Col 23]

Hello
I havent made any comments for a while as I havent been up to it. However I have been logging on and having a read. Thanks everyone for the informative info re - exercise. I have been doing some hydro therapy and found it really helps my back and muscle strength. But sometimes there is not much more I can do but couch it after that. The info discussed made me feel a little less anxious about lying on the couch so much. Even though Im not contributing much Im with you all.
cheers Col 23

[Sangye]

Thanks for letting us know how you're doing, Col. Glad to hear the water is helping. When I started in aquatic PT I'd barely make it back to the locker room without collapsing. I'd sit there and cry from exhaustion, even though I had barely done anything. It'll improve. Just take care of yourself and give yourself the rest you need. Hugs to you! :)

[Col 23]

Thanks Sangye
double hug back.
Col 23

[Cindy M]

Sangye, I totally agree with what you are saying. I've also been told that I could be feeling so bad because of the weather.

[Sangye]

I can't imagine how weather would make you feel so weak, back weak, etc... Many docs use that line instead of saying "I don't know." But truly only you can tell.

Prolonged time in the heat is very bad for me. It makes me swell in general and can make a couple of my joints swell and get red and hot, too. I never tolerated heat well, though--long before Wegs.

[elephant]

I don't tolerate heat either. It actually makes me very weak and I feel like I'm anemic!

[Doug]

Heat is a problem. I try to stay out of it as much as possible, which is at odds with what was a favorite outdoor activity, birding ("twitching" to you in the part of the world where actual English is spoken- ha!). I say "was" because I haven't managed to get back into it on any significant level. Lots of dollars in equipment just gathering dust.... Anyway, birds are most active in the morning and afternoon. That helps. I even have a incredibly cool walking stick made out of Osage orange (a hard wood from a plant that grows in the American West), so I wouldn't have to walk around looking like the cripple I am, with my cane. Ha!

While the heat is a problem, the worst of my problems comes from going from cold to hot, air conditioned interiors to scorching outside vistas. Headaches, some nosebleeds (not as much as when I was a child) have long been my hot weather issues. WG seems to have exacerbated the problem. I try to acclimate myself by leaving my doors open during the hot months, which will make my new protege, Louie the Ginger Cat, happy because he likes birdwatching, too. Under my tutelage, he may even learn to categorize birds by more than "easy to catch, lots of meat; easy to catch, mostly bones; hard to catch, succulent breasts; etc."

[pberggren1]

I cant take the heat either. I just dread summer coming up and the days getting longer. Berfore WG I could handle the heat much better but was never a lover of being out in the sun too long. I've always liked the shade and cool summer evenings. And don't get me started on the bugs like mosquitos.

[jola57]

I get terrible hives when I am out in the sun/heat. When I was on the cruise, I looked like I had chicken pox. it was so bad. I think that mtx makes it worse.

[Sangye]

Jolanta, hives from sun are a classic sign of essential fatty acid deficiency. Very easy to resolve!

[jola57]

Ok what should I eat?

[Col 23]

Ok what should I eat?
I dont know for that one Jola but if your on Methotrexate I know you have to stay out of the sun and drink plenty of water. I am very sun sensitive on Mtx and the doctors have advised to stay out of the sun.
cheers col 23

[jola57]

I do do that but Sungye may have some foods or supplements in mind

[Sangye]

Since you have a pretty sizeable deficiency, get a health food store oil blend of omega-3, 6 and 9 oils in proper balance. I'd normally advise getting one from a holistic physician since they're better quality, but Udo's brand is okay. Take the recommended dose and you should see an improvement within 2-3 weeks. It might take longer for the problem to clear up completely, but it should be resolved by summer.

At some point you may need to balance calcium and vitamin D levels because they're involved with EFA's. But for now just get the EFAs balanced.

[Sangye]

Most of us have to stay out of the sun because of one drug or another. I'm more concerned with the underlying imbalance than with getting you back in the sun.

[Cindy M]

I guess I should have made myself more clear. It's my mom and sisters that basically say it could be because of the weather, because it makes them feel more stuffy (spring, snow mold etc) and achy. As for the sun I agree, I am not one for the hot sun, give me the shade any day, been pretty much like this even before WG. I live in Alberta, Canada so our winters can be pretty brutal, don't care much for the cold cold days, -30 to -40 and colder I have a hard time with.

[elephant]

Wondering why exercising causes Flare's in WG. Mini flares or big flares. In my mind...I keep thinking that if I had a temp of 101.0 and exercised, it would definitely make me sicker. So I am wondering if we are in remission and we start to Jog 20 miles a week will the WG flare up again? I am a little nervouse about going back to jogging because of the fear of the Boogie man called Weggie! Any thoughts?

[Sangye]

There is so much variability even between healthy people. Jogging 20 miles a week might be fine for one person but kill another! I think jogging is risking serious injuries (ie tendon/lig ruptures) and Wegs flare-ups-- micro, mini or major-- for the majority of Weggies that I've heard from.