Arthritis, Sjogren's, Fibromyalgia, and IBS ...but trying to

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betha519
betha519 Posts: 6
in Introduce Yourself
Hi Everyone!!! New here and looking for support! Glancing through the site, I can see how everyone is so supportive of each other. That is great!

Problem with me is, that while I am motivated in my head to do things, my body, unfortunately says otherwise (not from me just being lazy!). I have almost 40 pounds to lose and just started personal training at my gym yesterday. I couldn't go and just do any exercise because of all the issues I have, I needed a personal trainer to give me major modifications......so far last night went well! I have sjogren's syndrome, which affects all the joints (depleting the fluid there) which can move into the organs and screw with them. It's a cross between lupus and RA, and more often than not, it develops into lupus. I have had 4 surgeries so far on one knee alone and need them both replaced. Can't squat, kneel, run or even jog - it's at end-stage arthritis. Other joints are going too - hips kill walking after a time, can't raise my arms up in a repetitive motion b/c my shoulders are in a bad time now. Sjogren's also makes you really tired, so does the fibromyalgia I have, so that is why the weight packed on after the last surgery a few months ago - I was immobile! On top of all this, I broke my tailbone during a fall last year and it just won't heal right (the whole joint thing again), so sitting and doing situps or anything that pivots me on the tailbone also is a no-no. But, I have to lose about 40 lbs to get some stress off the hip, knee and ankle joints before I get worse and then CAN'T do anything, but eating too much dairy or gassy foods really kicks in the IBS and I'm down for the count, again.....

at 186 now....want to be 148. I CAN do this!!!!

Beth

Replies

  • Buckythecat
    Buckythecat Posts: 1 Member
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    Hi, Beth! I also have Sjogren's, but mine is a more mild case than yours. I think the biggest thing for me has been to give myself a break. Do what you can and don't beat yourself up over what you can't. I also have severe problems in one knee. I ended up buying myself a Gazelle. It still can make my knee hurt some but the impact is minimal. Hang in there!
  • brewwerks2
    brewwerks2 Posts: 34
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    Good luck to you! You're very brave to get a personal trainer and kick it up to a higher level! Do you work with a dietican or nutrtitionist? my mother has some of the same conditions and she has benefited greatly from getting proper nutrition. Keep us posted.
  • April0815
    April0815 Posts: 780 Member
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    Hi Everyone!!! New here and looking for support! Glancing through the site, I can see how everyone is so supportive of each other. That is great!

    Problem with me is, that while I am motivated in my head to do things, my body, unfortunately says otherwise (not from me just being lazy!). I have almost 40 pounds to lose and just started personal training at my gym yesterday. I couldn't go and just do any exercise because of all the issues I have, I needed a personal trainer to give me major modifications......so far last night went well! I have sjogren's syndrome, which affects all the joints (depleting the fluid there) which can move into the organs and screw with them. It's a cross between lupus and RA, and more often than not, it develops into lupus. I have had 4 surgeries so far on one knee alone and need them both replaced. Can't squat, kneel, run or even jog - it's at end-stage arthritis. Other joints are going too - hips kill walking after a time, can't raise my arms up in a repetitive motion b/c my shoulders are in a bad time now. Sjogren's also makes you really tired, so does the fibromyalgia I have, so that is why the weight packed on after the last surgery a few months ago - I was immobile! On top of all this, I broke my tailbone during a fall last year and it just won't heal right (the whole joint thing again), so sitting and doing situps or anything that pivots me on the tailbone also is a no-no. But, I have to lose about 40 lbs to get some stress off the hip, knee and ankle joints before I get worse and then CAN'T do anything, but eating too much dairy or gassy foods really kicks in the IBS and I'm down for the count, again.....

    at 186 now....want to be 148. I CAN do this!!!!

    Beth

    Has the trainer discussed what exercises you will be able to do? Will you be able to do the eliptical or any cardio?
  • marissa4354
    marissa4354 Posts: 140
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    I have RA.. we can support each other! :)
  • betha519
    betha519 Posts: 6
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    hi Bucky, Yay another sjogie's pal!!! It is such a wide syndrome with varying levels, so I hope yours (and mine) will stay as is and not progress. although there is no cure and I get so many flare-ups (have some eye erosion due to lack of moisture) I just keep telling myself: it can be worse - although at times in a bad flare, that doesn't help. :)

    Hi Brewwerks2! Thanks for the vote of confidence...I had to get a personal trainer, I just didn't know what to do on my own, outside of the physical therapy I've been doing for over 20 years off and on. I go to so many people, sometimes I feel like just signing over my check to them, but yes, the nutritionist has given me examples of what to eat, but when the flares happen, it gets tricky. I'm keeping to plain foods: salads (in moderation, lettuce can get the IBS going), bananas, apples, plain brown rice, plain baked chicken, and I throw in some almonds and hard boiled eggs - just the whites - for protein. I'm so used to bland foods, but I have to stop myself from overeating pasta, which is what I love. One step at a time! :)

    Hi April, the personal trainer is actually working with my physical therapist as I can't do any lunges, squats or interval jogging. I can do the elliptical for about a half hour before my kneecap starts to give massive pain (it catches and literally cannot bend - starts to move out of the joint again). The treadmill is ok as well, as long as there is no incline or too too fast speed. Before I broke my tailbone, the best thing was the recumbant bike but I can only do that in limited time due to the tailbone (the other stationary bike? forget it! kills the knees AND tailbone!). I'm hoping the combination of the 2 will give me some good stuff. I go for the second round on Wednesday night, and then she will give me the cardio I can do on the other days.

    I'll keep you all posted on what I'm given and how well I can do it! :wink:
  • betha519
    betha519 Posts: 6
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    I have RA.. we can support each other! :)

    We sure can! My sister has RA as well - these autoimmune problems run in families!

    What are you doing for exercise? Are you on heavy meds too? that kills me because prednisone puts on th weight so quick! When I'm on it in cycles, it like it just keeps adding on the lbs!
  • jsignorino3
    jsignorino3 Posts: 5
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    You might want to try swimming. This is the best exercise for your body because it works everything and you aren't putting any stress on your bones and joints. It might be worth a try!!!
  • betha519
    betha519 Posts: 6
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    Hi jsignorino3,

    I have done aqua aerobics in the past as well as pool therapy as part of physical therapy. Even then, it hurts my knees - I guess not enough displacement for me! :laugh: I wish I could swim, but the action grinds the hip and shoulder bones way too much (part of the whole joint issue).....always wanted to swim underwater too, but I am such a shallow breather due to a heart operation when I was 5 that I can barely stay underwater for enough time to do 2 kicks underwater (breathing therapy never helped, done it for years and years). Looks like I am stuck being on land!

    :bigsmile:

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