Those with chronic illness/pain trying to get fit.

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  • Hilogirl2018
    Hilogirl2018 Posts: 687 Member
    edited September 2019
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    @Katmary71 This struck me: "surgery for endometriosis... that resulted in burned pelvic and groin nerves from the laser." Can you tell me more about this? Message me if you'd prefer, but I believe I'm in your exact situation, and it's been terribly frustrating to have doctors refuse to believe/treat me! I had my first endo surgery over a decade ago and have had CHRONIC burning pelvic and nerve pain ever since. Because my endo has been so aggressive (I've had 5 endo surgeries overall), doctors have insisted all my pain was due to endo. Logical enough, except my horrible burning pain first occurred *after* that first surgery.
  • LAT1963
    LAT1963 Posts: 1,375 Member
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    shelaghcol wrote: »
    All my life I've always been able to get myself moving - I was a dancer, a martial artist, rode horseback, worked out on my own, even started a personal stair climb challenge.

    The last three years, my body has been betraying me making strenuous exercise next to impossible. Last fall, I participated in a yoga for weight loss study and practically had to drop out because of problems with my wrists and elbows.

    Yet, even with all that I could still go out and walk whenever I wanted.

    A few months ago, I started having frustrating pains in my Achilles tendons and any walking is difficult.

    I can't for the life of me figure out what exercise I could possibly do now. I used to love my legs. Now I can't stand to look at them. The only possible thing left would be swimming, except I can't afford the cost of a gym membership - the only places that have lap pools.

    I'd be very grateful for support, motivation, suggestions of any kind.

    Thanks for starting this thread.

    First, see a doctor. You may have an autoimmune disease.
  • LAT1963
    LAT1963 Posts: 1,375 Member
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    [
    Hilogirl2018 wrote: »
    @shelaghcol I was wondering if you'd ever been tested for a connective tissue disorder because a lot of what you're describing is common to CTDs. I have a CTD called Ehlers Danlos Syndrome Syndrome hypermobility type and one of the ways it manifests is through joint and tendon problems. It's hereditary, but it's not unusual to get to a certain age without too many symptoms and suddenly fall apart.

    Another possibility: if you've been treated with ciprofloxacin, it has a black box warning for tendon rupture.

    THIS

  • LAT1963
    LAT1963 Posts: 1,375 Member
    edited September 2019
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    I have hypothyroidism, have been treated with cipro (but it was decades ago), and am having all kinds of unexplained tendon problems, especially in my feet. it is quite frustrating because I don't have any diagnosis other than lists of tendons currently affected by inflammation. I am hoping it is not autoimmune.
  • MaintainInTheMembrane
    MaintainInTheMembrane Posts: 63 Member
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    I have endometriosis and lost the weight I needed to, and am in maintenance now. Hi everyone!
  • shelaghcol
    shelaghcol Posts: 165 Member
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    LAT1963 wrote: »
    shelaghcol wrote: »
    All my life I've always been able to get myself moving - I was a dancer, a martial artist, rode horseback, worked out on my own, even started a personal stair climb challenge.

    The last three years, my body has been betraying me making strenuous exercise next to impossible. Last fall, I participated in a yoga for weight loss study and practically had to drop out because of problems with my wrists and elbows.

    Yet, even with all that I could still go out and walk whenever I wanted.

    A few months ago, I started having frustrating pains in my Achilles tendons and any walking is difficult.

    I can't for the life of me figure out what exercise I could possibly do now. I used to love my legs. Now I can't stand to look at them. The only possible thing left would be swimming, except I can't afford the cost of a gym membership - the only places that have lap pools.

    I'd be very grateful for support, motivation, suggestions of any kind.

    Thanks for starting this thread.

    First, see a doctor. You may have an autoimmune disease.

    I have fibromyalgia.
  • shelaghcol
    shelaghcol Posts: 165 Member
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    LAT1963 wrote: »
    [
    Hilogirl2018 wrote: »
    @shelaghcol I was wondering if you'd ever been tested for a connective tissue disorder because a lot of what you're describing is common to CTDs. I have a CTD called Ehlers Danlos Syndrome Syndrome hypermobility type and one of the ways it manifests is through joint and tendon problems. It's hereditary, but it's not unusual to get to a certain age without too many symptoms and suddenly fall apart.

    Another possibility: if you've been treated with ciprofloxacin, it has a black box warning for tendon rupture.

    THIS

    Actually nope. I take almost no chemical medications. And no prescription meds.
  • nunasdreamnz
    nunasdreamnz Posts: 5 Member
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    I have Ankylosing Spondylitis so I get backpain often but trying to work out and lose some extra KGs. Feel free to add me as a friend. It's good to have friends for motivation :)
  • Hilogirl2018
    Hilogirl2018 Posts: 687 Member
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    shelaghcol wrote: »
    LAT1963 wrote: »
    [
    Hilogirl2018 wrote: »
    @shelaghcol I was wondering if you'd ever been tested for a connective tissue disorder because a lot of what you're describing is common to CTDs. I have a CTD called Ehlers Danlos Syndrome Syndrome hypermobility type and one of the ways it manifests is through joint and tendon problems. It's hereditary, but it's not unusual to get to a certain age without too many symptoms and suddenly fall apart.

    Another possibility: if you've been treated with ciprofloxacin, it has a black box warning for tendon rupture.

    THIS

    Actually nope. I take almost no chemical medications. And no prescription meds.

    @shelaghcol A lot of EDSers also have fibro, so you may still want to look into EDS. As far as I know, there's no connection between fibro and tendon rupture.
  • CourierSixx
    CourierSixx Posts: 50 Member
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    I have an unknown issue. My side hurts all the time, my stomach hurts sometimes making it too hard to eat, every few weeks my whole body will hurt, it feels like deep bone pain and during that time, I feel too weak to get out of bed. My ANA test was positive, doc did more test and they were positive. Went to an rheumatologist and he just said I was fat and to lose weight. Despite all this, I ride my bike 4 times a week, pulling a 25lb dog and we 25 miles.
  • kttyson
    kttyson Posts: 77 Member
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    Hi! I’m also a chronic illness fighter that’s trying to get fit. I’ve had 4 endometriosis surgeries and have a bleeding disorder. As well, fibro and POTS.

    Getting fit can be difficult but I’m looking for support to get there. Especially from people who understand!
  • AmandaManana
    AmandaManana Posts: 1 Member
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    Hi!

    I have an M.E/CFS type condition but have much improved this over time, however my chronic pain conditions (Trigeminal neuralgia, other cranial Neuralgia’s, migraines, vertigo/dizziness, neck issues, arm, spinal, complex pain syndrome, nerve pain, plus a dysregulated nervous system that fires all the wrong stress chemicals and disables me when it feels unsafe or threatened by my symptoms, thanks body!) make it really difficult to even move about in an ordinary way let alone excercise, I am mostly housebound and often sofabound, often the only calories I’m burning are when I’m preparing food!

    When I’m in a flare up like now I have to be careful of how I move my body, but when things simmer down I do make an effort to stay on my feet more and get involved in things around the home, even dance around my bedroom or some gentle yoga, but have to be careful as even the smallest wrong movement can give me great payback and start off complex pain around my body.

    Anyway, I’m glad to hear of people getting results from calorie counting alone as that’s going to be my only constant that I can rely on to lose weight.
    I’m lucky in that I was/am a chef, writing a cookbook (plant based) so I can make something new and interesting to eat every day.. I had always focused on nutrients/vitamins/minerals/healing elements of food but this is my first time looking at calories.
  • MoKaaz
    MoKaaz Posts: 162 Member
    edited October 2019
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    I have a medical issue (PoTS) the pretty much prevents me from doing cardio or any excersises that raises my heart rate over 120bpm. As you can imagine that limits my choices greatly. I've discovered weight lifting to be a good alternative, it's no cardio but it's better then nothing!
  • LAT1963
    LAT1963 Posts: 1,375 Member
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    I am on prednisone for the first time, think I may be addicted (joking, this is day 6). Haven't felt this good in 20 years (but still waiting for my ortho injuries to heal--this is a tactic to quench recalcitrant post-injury inflammation).
  • LAT1963
    LAT1963 Posts: 1,375 Member
    edited October 2019
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    Amanda I had CRPS limited to one limb that burnt itself out over a period of years, so I grok your situation (partly, from having a subset of what you deal with), really awful for you.
  • Iamfocusingonme
    Iamfocusingonme Posts: 15 Member
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    I have Lupus Sjogrens and MCTD along with other disorders. My body goes up and down in a cycle so I will try really hard and then my body will crash. I’ll lose some when I’m able and then when I’m down I can’t cook and it’s all up to my husband who doesn’t usually cook healthy food. It makes it really hard. I’d love any friends that know what I’m going through!
  • Katmary71
    Katmary71 Posts: 6,553 Member
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    Hilogirl2018 wrote: »
    @Katmary71 This struck me: "surgery for endometriosis... that resulted in burned pelvic and groin nerves from the laser." Can you tell me more about this? Message me if you'd prefer, but I believe I'm in your exact situation, and it's been terribly frustrating to have doctors refuse to believe/treat me! I had my first endo surgery over a decade ago and have had CHRONIC burning pelvic and nerve pain ever since. Because my endo has been so aggressive (I've had 5 endo surgeries overall), doctors have insisted all my pain was due to endo. Logical enough, except my horrible burning pain first occurred *after* that first surgery.

    Hi! I sent you a long private message then read people aren't getting messages unless they're already friends. It's not super common to end up with nerve damage from pelvic surgeries but there definitely are people who've had some sort of pelvic surgery and suffered damage. Not sure whether or not you received the message where I covered a lot so I'll leave it there, just didn't want you to think I was ignoring you.

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