Losing weight whilst battling illness?

MamaBirdBoss · June 2015

I'm allergic to exercise (exercise-induced anaphylaxis), and I have a genetic muscle disorder (channelopathy most likely, possibly a metabolic disturbance). And I have non-24 sleep disorder, I think because the genetic muscle disorder screws up all my systems on a molecular level. (I've battled infertility, too, so I'm like "no systems go" rather than "all systems go." LOL.)

Every. Single. Doctor. tests me for Lupus, RA, and Lyme disease. I'm quite sure I have none. lol. Symptoms are a LITTLE similar but really not that much!

Like everyone else, I got Dx'd with fibro, but it was a BS diagnosis. :P

kellellie · June 2015

85kurtz wrote: »

I have a very unusual illness called chronic ideopathic pacreatitis. Most people have acute pacreatitis and most frequently they are alcoholics. I have the pain always with acute attacks of severe pain. No one knows why.
I have also survived three lots of cancer. Uterine thyroid and melanoma.
So yeah I know what it feels like to battle an illness and keep in trying to lose weight. It's hard, really hard, and no one will ever understand that but you. But you know what? You can do it and those bad days will still be bad but at least you are defying that illness and doing something to be proud of.
For a long time I felt that I WAS my illness. I was defined by my symptoms and pain by so very many people that I started to see myself that way too.
But I am looking forward to defining myself as that seriously buff woman in the mirror, with a new profession (I had to quit my old one) and a great life forever how long that may be.

Similar situation for me. First diagnosed with mixed connective tissue disease, but i've also had intermittent pancreatitis attacks since I was about 14. After several ER trips and no one even CHECKING my pancreas because I was too young for such nonesense, I just stopped seeing doctors all together when it happened, and just wrapped myself up in a blanket and suffered until it was over. It has since been suggested (though not properly diagnosed) that it's all just lupus instead, since there's no reason for the pancreatitis (ive had every test known to man on my pancreas, gall bladder and liver), but it only happens when i'm stressed or in a flare. Flares generally consist of pain, exhaustion, long fevers (like 3 months long), and random things like having my eardrums rupture while i'm out at dinner. I was on celebrex to manage pain, my tendons and ligaments are garbage and I've had several injuries just from being too "bendy". I came off celebrex last year in order to have reconstructive surgery on my ankle, and just... never went back on it. Instead, I started noticing my nose would tingle and itch when I ate a certain thing, but I didn't know what the "thing" was. It started like that. I started cutting certain things out of my diet to see what it was. It was a sloooow process and not really about weight loss at all, until I found a doctor who told me that fighting Autoimmune diseases with diet is actually a thing. I'm currently in the middle of a pretty strict detox diet designed to give my body a rest from constant inflammation. I don't eat soy, gluten, corn, beef, sugar, nightshades, diary, eggs, shellfish, alcohol, caffeine... but I feel pretty stinking amazing. I will begin to add these things back in one at a time and see how I feel.

When my flares were the worst, I was a smoker, drank a little bit, had coffee every day, and ate according to the rule of "whatevers easy because i'm effing TIRED" which more often than not was takeout or pizza or something else equally unhealthy. I haven't had a real hardcore attack in 4 years, and my last twinge of "oh crap is that one coming on?" was over 2 years ago. Losing weight has just been the icing on the cake. My grandmother was diagnosed with pancreatic cancer a couple years ago, so its even more important for me to not do anything to piss it off

CurlyCockney · June 2015

I've got Transverse Myelitis, and I'm a powerchair (electric chair) user. I don't think of it as a battle with my illness - TM is a part of me now, and I don't battle with myself

My occupational therapist has me on a fatigue management plan, so I'm incorporating exercises into that, which means that some things will just have to go on the back burner because this is important to me. I've got a passive electric bike, which is similar to the machine at physiotherapy, and I've just had some Bodylastic resistance bands delivered to help with upper body strength and mobility.

Do what you can, when you can. And then do a little bit more!

Athijade · June 2015

And it's sort of official. My doctor is pretty dang sure I suffer with chronic fatigue syndrome. The only thing keeping him from a formal diagnosis is that I have not been dealing with this for 6+ months. Otherwise though, my issues are simply a check list to CFS.

On top of that, my back and hip are giving me problems again the last few days. I can barely get out of bed!

weetrish1 · June 2015

Yes I will be taking for the rest of my life, they have never really said very much about the drug. I've read about it myself. 15 years is a long time

Vune wrote: »

weetrish1 wrote: »

Hi, yes it's prednisone I take.. They are also trying me on a maintaining drug called mycophenolate mofetil, to suppress my immune system.. It is very difficult to try and lose weight as I feel "steroid hungry" all the time! Thankfully (or not) my husband is needing to lose weight too, so we are trying together.. I am more than happy to become friends with you all, please add me xx

I've been on Cellept (mmf) for almost 15 years. Does your doctor plan for you to be on this long term? Start keeping an eye on your iron intake now. It can cause anemia in the long term (I've read the packets that come with my immunosuppressants and they are not meds to be taken lightly), and I am getting Procrit shots for the rest of my life! CICO for weight loss, nutrition for your body!

amusedmonkey · June 2015

I may not have an illness, by the definition of the word, but I was in an accident a few years back which left me with chronic back pain that can leave me bed-bound and unable to even go to the toilet without assistance for weeks at a time if I move wrong. I'm unable to sit for prolonged periods of time so I spend most on my days in bed. Some days are better than others and I'm able to exercise then, but it's not consistent. I also have PCOS and borderline thyroid with all the hormonal swings and hunger that come with it. Even though the game is kind of rigged against me burning more calories, I find if you stick to the basics (calories in calories out) it tends to work. 99 pounds down so far.

Modern_athena · June 2015

I have bipolar disorder and Generalized Anxiety. The medication I'm taking causes weight gain and I gained 20 kg from it

Trying to lose weight while on medication is tough.

azulvioleta6 · June 2015

MamaBirdBoss wrote: »

Every. Single. Doctor. tests me for Lupus, RA, and Lyme disease. I'm quite sure I have none. lol. Symptoms are a LITTLE similar but really not that much!

Ha ha, that's like me and Cushing's Disease. I really do not have Cushing's Disease, but so many doctors have tested me for it over the years.

NerdyNix · June 2015

@amusedmonkey 99 pounds so far?!! That's awesome!

Losing weight whilst battling illness?

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