Anybody else here with an autoimmune disease?

pileofnoodles

twrobbel wrote: »

pileofnoodles wrote: »

I can totally relate. Especially after Christmas my diet has had me in a flare, yet I keep craving trigger foods. Two days off junk so far, and have been well enough to work out. I always take advantage of the good days. I have Ulcerative Colitis and something else still being figured out that causes black outs, migraines, muscle weakness, numbness, and joint/muscle/joint pain(more but you get it). So far all I know is that it isn't RA, lymes, or lupus :P I've been on lyrica for a month and I fear gaining weight between that and the holidays.

I can absolutely relate! I have Hashimoto's, Chronic low Vitamin D and an unkown condition also with the same exact symptoms (minus the migraines). It gets so bad that I can't hold a phone to my ear. I also can get memory loss/confusion (I drove onto the freeway the wrong way one day, went a few hundred feet down the ramp and pulled over because somethign didnt look right but I couldt figure out what it was). A short course of steroids always help.

They have also ruled out Lupus, MS, RA (so far- my doc says you can have symptoms for years but it won't show up on test results yet). He has another patient with similar symptoms and he had that person tested for a new disease that just was discovered a few months ago and they tested positive. He is pretty certain I would also, but there is not cure or treatment plan yet- so he said it is not worth testing me until there is a cure or treatment plan.

I found that when I ate Plant Strong (Engine 2 Diet-Vegan and no oils), I felt tremendously better. No flare ups and I had my longest non-flare streaks both times I tried that diet. Its just hard to stick to when my favorite veggies are no longer in season. I do find that when I am stressed, it flares up. And not necessarily emotional stress- but even not getting as well rested because traveling for work.

Hm, new? How interesting! I also get the confusion, I've been told I will change what I am talking about entirely mid sentence, and am in general in some kind of "haze" or dream like state. I have a feeling it is MS for me, I have cousins with it and it's common in my area, but it's only a guess. A few other things could be it but the names aren't coming to me right now. I haven't been able to hold a job for over a year now. I try, but my body gives out, I end up in the ER and my doctors haven't been too proactive. I plan to go back to school though and study animal behavior (zoology+psychology) and hopefully open my own business so I can work at my own pace.

aster423

Hi all. I don't have an AI disease, but my husband was diagnosed with gout last winter, lupus last spring, and with schleroderma as a child. He also has hypertension. I'm trying to learn about how diet affects lupus. He has been super fatigued for weeks, and had a bad flare over the holidays. My 2015 resolution is to learn as much as I can and help him develop a good maintenance plan that includes healthy behaviors (diet and exercise). Any suggestions anyone has for good books, articles, or websites to check out to help in our learning process would be *very* appreciated. As well as suggestions for any online lupus support groups for men. Thanks!

killerqueen21

I have 3 autoimmune diseases, all rare, all incurable. No of them cause me much pain though so I am lucky in that respect. Hearts to everyone

AmigaMaria001

Systemic Sclerosis Scleroderma plus CREST! (Ssc) Wicked diseases... But by the grace of God I am still here and living a fairly normal life!
Those of us with autoimmune diseases have to live with limitations but we make the best of what we have - right!

Ms_Enzo1313

Hashimoto's in the house? wow... At least we are not alone! I read a lot of articles on-line about what foods I should stay away from so that has been helpful plus being active and improving how I eat. I also have had the dizziness spells and low vitamin D but have improved them both by eating more vegetables/iron (since I am Anemic) and taking my vitamins (as per the doctor). Don't let anything get you down, you can make small changes and begin to feel better - even if it's just a little better it's worth it.

ndbex

I have several autoimmune issues as well. I just got off a big dose of steroids and gained weight during that time. I'm still sick and having sinus surgery soon to help alleviate that problem. I have no energy to work out and sticking to a meal plan is tough right now.

soundwaves522

I have several autoimmune issues and, as a result, have had to cut out all meat except fish, dairy, nightshade vegetables, and grapefruit from my diet. The grapefruit counteracts most medications and can make you have health issues as a result and the other items in the list can be removed from a diet as an anti-inflammatory diet. The illnesses cause weight gain, which I have held at bay through application of the above restrictions and 1 hour of cardio and 2 hours of bodybuilding-style weightlifting 5 days out of a week.

Ms_Enzo1313

Thank you for starting this post - a lot of people don't talk about their Auto Immune issues and it helps to know that you are not a lone. There are many of us.

Rcisme829

I am surprised by the number of us with thyroid issues. I have been taking meds for hashimotos for at least 6 years now and I've never thought about it causing these problems. I have fibromyalgua and it has really started to bother me more the last year or so. What problems does this thyroid condition cause??

suzy0317

First - thanks for the starting this discussion. I've been dealing with Chron's disease for 30 years with Fibromyalgia for the past 2 and it's nice to have a place where people really understand what we go through. Both illnesses exhaust me and it gets to a point where my friends and family just don't want to hear about it anymore. (I can't blame them, I've been complaining for 30 years! LOL) I find that walking helps, but if I push too hard with weights and workouts, I just end up feeling burnt out. I just finished a 30 day blast of steroids due to a major flare up in November and I feel bloated and tired. I gained 3 lbs back and I'm hoping it all steroid related.
Please feel free to add me as a friend! We can do this!

suzy0317

Because I have have difficulty find the threads that I enjoy, I just created an Autoimmune Club group. I thought it may make it easier to find each other again.

clambert1273

Hashi's

uniquewrapz

I have fibromylagia and IBS and glad to see this thread!!! I struggle with the energy level and work a crazy stressful job too, that doesn't help. I try to avoid dairy and inflamatory foods but when I get a flare up it's BAD. I ate like a pig for the holidays, and dreaded stepping on the scale this week. Surprisingly, I lost weight. Right now I am mid way through trying a week without meat. Gave up pork, poultry and beef. I've lost 5 pounds this week, so am going to keep on it a bit. I need to lose about 40 pounds, most of which I gained through infertility treatments and miscarriages.

mcibty

This thread is a real-life episode of House.

Are you sure it's not Lupus?

uniquewrapz

I was tested for lupus a few years ago, came back negative. I am thinking of retesting for that and for Crohn's. Going to hunt down this group ---thanks for starting it! I am so happy to know I am not alone. Feel free to friend me...

theswordpen

This is an awesome forum! I'd love anyone to add me who wants to. I got diagnosed a year ago with Systemic Scleroderma and RA. Diet has been affecting me for years (even before diagnosed), I'm sure it has to do with the Scleroderma being active in my gut. I'm finding it incredibly hard to lose weight, even after eating 100% healthy and exercising like crazy, I guess it must be the huge mixture of meds I'm on, but I can't help but feel depressed about it some days. I'm working so hard to get myself in a really healthy weight zone for my own sanity, but also to help my RA and my intestinal issues. <33 My heart goes out to you all.

uniquewrapz

can someone post the link to the group? I can't seem to find it

Thanks!

blueeyesgrace

Rcisme829 wrote: »

What problems does this thyroid condition cause??

It's difficult to say the problems that thyroid can cause, because there are so many of them. Each person is different. There's a list of over 300 symptoms that Hashi can cause. If medication is properly adjusted, then most symptoms should disappear and should be able to live fairly normal. I found there's a phenomenal book that I reference frequently. It's called "Living Well with Hypothyroidism" by Mary Sholomon. I've had that book for almost 18 years. While I'm sure there's some outdated information, it's still a great motivational thing to reference on the days that I find it harder to function.

mkisch294

I am so happy to find this thread! I have MCTD. Mixed connective tissue disorder. Man one I deal with is Lupus. I also have Fibro. Its hard to have the motivation to loose weight and stay positive enough to eat well and excercise. I would love any of you to add me so we can keep each other motivated!

innerexp

Celiac disease here. I focus on a clean eating, Paleo-ish diet which helps.