Exercise with Chronic Illness

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I have fibromyalgia AND chronic fatigue. All the doctors and specialist say the same thing... moderate exercise is good for fibro but will put you in a downward spiral with chronic fatigue.

Only been on this journey for 2 days. I added 15 minutes moderate workout on a stationary bike approved by my doctor. However, day 1 not so bad, yesterday I suffered a major flare and crash.

Now I'm sitting on my couch, almost in tears, pain is horrendous and exhaustion is through the roof (after a good 8 hour sleep last night).

Just wondering if anyone else here suffers from a major chronic illness and how they get their exercise in?

The doctor is aware I'm here and what I'm doing and she thinks it is a good idea as this is a lifestyle change and not a diet!!
I'm feeling rather discouraged.

Also, when the pain flares this bad it is hard to eat so it is going to be a struggle for me to reach my calorie intake today.

I would love to hear what others have to offer... however, I would appreciate no comments on the disease itself. I know what I have, I know it is real and I'm trying to work through it the best I can.

thanks.

Replies

  • dwbotti
    dwbotti Posts: 29
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    Is heart disease a major chronic illness? I had quadruple bypass surgery in July of 2013 and am still living with one blocked coronary artery after going back into the hospital a mere 13 weeks after the surgery to learn that 3 of my 4 bypasses had partially closed.

    I don't have chronic fatigue issues, but I am actively doing what I'd call "angina management" exercise. I know when my body will trigger angina (chest pain) due to the level of exertion and my Cardiologist and I are on the same page with respect to my regimen, which began in earnest in January of this year.

    I'd be happy to talk to you about options to boost your energy and help you stay on the path. Just let me know.
  • 120by30
    120by30 Posts: 217 Member
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    I just wanted to say good for you for trying! Keep at it!
  • Tillyecl1
    Tillyecl1 Posts: 189 Member
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    Maybe cycling was a bit to vigorous as a starting point? I don't suffer chronic fatigue but I have tutored people who have it before. I know how badly it can affect people. Maybe a short walk would be a good start and then work up from there? Or swimming as it's very low impact? I would divide the exercise into tiny chunks of 5 minutes or so to start with too because the last thing you want is to be in pain or totally exhausted.

    EDIT: Also I know it's hard but please try and eat something because the fuel is very important for you right now.
  • AlliSteff
    AlliSteff Posts: 211 Member
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    It is hard. I have Type 1 diabetes and Lupus (which sometimes causes me lovely painful flare ups and complete and utter exhaustion). When I started this a few months ago, I started slow. I did yoga and spinning and long walks/elliptical. As I got in better shape, I was able to up my game without feeling SO exhausted.
  • asciiqwerty
    asciiqwerty Posts: 565 Member
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    I have chronic spinal damage and hypermobility - not sure if that counts

    we're all different, some of us, have special needs and restrictions when it comes to excercise, go with the advice for you from your doctors/physios and don't feel like you have to be like or do the same stuff as anyone else

    it may take a while, but you will find a mix that work with you

    after my last low period, when i was starting to walk again, the dc said i could try swimming, at first i managed 10-15 lengths of a 11 m pool, i still swim at the same pool i'm now doing 78-104 lengths twice a week

    i found tracking pain killers and exercise really helpful, i used endomondo to track more detail on the exercise (time, cadence, speed, distance) and i spotted that before a low patch my efficiency dropped, and now i can see the low patches coming and try to mitigate them

    i really empathise with you pain eating, apprat from anything else I have to take some of my pain meds on a full tummy,

    i found working with a physio on stretches and stability really helpful

    and the consultant referred me to a pilates class taught in the physioherapy department at the hospital, i now go to a normal class and it's great at keeping me on track, but boy do i know all about it when i miss a class it has a huge effect on the pain meds i need for the next week or so

    so this is a journey, I don't know where it'll take me and i know there will be ups and downs along the way, but now, I am having some part in guiding my path, and itmakes me feel better

    good luck with your journey
  • TeaBea
    TeaBea Posts: 14,517 Member
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  • murdledoe
    murdledoe Posts: 98 Member
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    I was diagnosed with Fibro. 19 yrs. ago and it can be a struggle. I was also diagnosed a little over a year ago with bundle block branch. I had been doing aerobics, swimming and walking, but my cardiologist told me it would be best if I didn't do the aerobics. I think it is an adjustment for anyone with any health or mental changes in their life and everyone is different. I have learned that when I have severe fibro. it still helps when a get up and move. You are more then welcomed to add me as a FP. I have learned that a positive attitude has helped me and I have become a stronger person do to all of this. Good luck with everything.
  • sdonovan96
    sdonovan96 Posts: 46 Member
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    I've also been diagnosed with fibro (not sure how accurate that is...I know the pain will lessen as I lose weight) But the pool is a great option. I also have some arthritis and I find that the low impact benefit of the pool is awesome. Great for when you're having a flair up and there are a lot of places that offer water aerobics. Good luck!
  • TabithaRyan68
    TabithaRyan68 Posts: 25 Member
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    Thank you... I will try the smaller chunks of lighter exercise.

    And I am eating... guess my body does like food... even if I'm too tired!! ;)

    Thank you for your thoughts.
  • karins4
    karins4 Posts: 50 Member
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    I have fibromyalgia and chronic fatigue too...as well as heart problems and some other things. Mostly I find out what I can and can't do by trial and error. I know that when I do a new exercise I probably will need a few days of recovery until I get used to it. Most of my exercise right now is swimming and walking. I'm trying to add yoga back in because that really helped me. I found a really good dvd for beginners that has 10 minute AM/PM videos. The 45 minute beginner video is nice because she talks slowly so I can take more time to get into the next position and not hurt myself rushing like in other classes. I first found it from On Demand. and bought the dvd from amazon if you are interested: YogaWorks for Everybody: Beginners AM/PM.

    Last summer I could barely walk so I only walked about 10 minutes at a time. Recently I am able to walk about 30 minutes at a time a few days a week and twice a week I am able to do 30 minutes, rest, then do another 30 minutes. Sometimes I am doing better where I can do a low impact aerobics video and even Zumba. I always modify the moves and for a while I found a Zumba teacher that I could actually follow and had fun. Unfortunately she left and I can't follow the other teachers because they only do high impact Zumba and I can't really modify the steps. I was also doing Zumba for Wii before I had my most recent flare up.

    It's frustrating that I can't just do what I enjoy without worrying that it's going to cause a flare up. Good luck to you!
  • hm_day
    hm_day Posts: 857 Member
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    I have had Rheumatoid Arthritis since I was a child and unfortunately, it's one of those things that exercise WILL help, but you have to start slow. Believe it or not, weight bearing exercises and strength training are the best things! They strengthen the muscles in your body, which benefits people who have joint or arthritis issues. Low impact cardio is good too, such as walking, swimming, etc. Cycling is actually a really vigorous workout and can be hard on the joints and muscles, so maybe start with something like walking for 15 minutes to warm up and then gradually increase your time/distance.
  • lizsmith1976
    lizsmith1976 Posts: 497 Member
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    I have an autoimmune disorder called Behcet's, it causes fatigue, weakness, some numbness, and pain when certain mucus membranes of my body are attacked. My doctor told me to sleep and not exercise strenuously. I did some googling and found an Olympic runner with the same disorder, and I said screw it and signed up for an Ironman triathlon. Yes, I probably flare up more often than most and have more pain than most, but it's totally worth it - to me. And the attacks have lessened quite a bit as I get used to the training. My 2nd Ironman is next month.

    Start out light - some people suggested the pool and I think that's great. Plus walking. And make sure you get more sleep than you have been.

    ETA good luck with getting the right mix for you :)
  • kuolo
    kuolo Posts: 251 Member
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    Just wanted to say, good for you, and I hope things get easier. I had a CFS-type illness for a few years, on the way to recovery now. Have you looked at graded exercise therapy? Are you able to access an OT? I don't know if you're in the UK (I am, so it's free here). Basically the theory being that some exercise is better than none, but don't overdo it, it can make things worse, so take it very very slowly. You'll need to work out your baseline level - what you can achieve every day without causing a boom/slump cycle or making things worse - and do that every day. The idea is then to increase this over time. It can be very effective but it's best done under medical supervision. But lacking that you could read up on it and use some of the principles? Best of luck.
  • TabithaRyan68
    TabithaRyan68 Posts: 25 Member
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    I'm overwhelmed by the responses and ideas!!

    Thanks everyone sooo much for your support, suggestions and ideas!!

    I'm very excited that I have a few new ideas to try and that I'm not going to be thwarted by this disease!!

    Feeling really encouraged now!!
  • SharonNehring
    SharonNehring Posts: 535 Member
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    I have FM along with a few other issues. How about just walking? Do 5 minutes and stop. See how you feel the next day. If it's ok, try 6 min and stop. Keep going gradually adding a minute at a time until you get to your goal amount. You can do the same thing with cycling too.

    Do you have a pool nearby? Water aerobics, water walking, aqua yoga etc are all great low impact exercises to get started with. It's much easier on the joints.
  • tracydr
    tracydr Posts: 528 Member
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    I have osteonecrosis in about 8 different bones. I was in a wheelchair last summer, then had decompression surgery with stem cells to both knees. Still with lots of pain but slowly getting better. Taking Coumadin and plaquenil for the joint pain.
    I was unable to walk and I'm now getting to where I can do 30 minutes twice daily. That night-time walk can be difficult and sometimes I cut it short or do without.
    I'm so happy that I can walk at all and it looks like I won't need joint replacements in the near future.
  • meritage4
    meritage4 Posts: 1,441 Member
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    something gentle is my thought too. Have you tried tai Chi or very gentle yoga?
    The bike sounds ok because it's no impact but start off with light biking-very little force needed) and work up.

    anything done outside is also a plus so walking is great too.