Auto immune support group

AmberGlitterSparkles

Hi All,

My name is amber, I am 35 year old mother of two. My oldest just turned 13 and he’s autistic. My daughter is turning 2 next month. I am looking to lose about 150 pounds a couple of pounds at a time. I have Hoshimoto’s Thyroiditis and Celiac. My son is allergic to soy. So meal planning can be a challenge sometimes.

I started becoming symptomatic the summer after first grade, and if you have seen me talk about those else where already I apologize. I felt like someone flipped a switch on in my brain and I just changed. I had no motivation any more. I felt so tired and sore every where. My body just ached all the time. My chest hurt. I started putting on a lot of weight. My parents were never the type that let us sit around the house and watch tv, we were told to go out and play. They always cooked balanced meals. Not having a lot of money meant that we didn’t have much for snacks, junk food, or soda in the house.

They took me to the doctor at a young age to address some of these issues. By this time, some of my teachers had even noticed a difference and were concerned about my well being. I was told to drink more water and play (exercise) more. That I was experiencing growing pains. I was about 5 ft 8 by 5th grade. Nothing seemed to work.

As I got a little older my mom had me see a psychiatrist. They said there was nothing psychologically wrong with me. Though my gp diagnosed me with depression and put me on anti depression medication. It didn’t work for me. Then we played the game of switching to a million different kinds and dosages to find one that worked. When nothing did, we moved on to anti anxiety meds. They thought the chest pains might be anxiety attacks. That didn’t really help either.

Somewhere around 14 I started to have really intense pains in my stomach. Which I ingnored until it became unbearable, because I’m dumb like that. Went to the er. They diagnosed me with an ovarian tumor. They said it was the size of a cantaloupe. After surgery, turned out it wasn’t that at all. Both of my Fallopian tubes were under developed blocked and filled with fluid. They were so damaged that I was told I would never have children (surprise!).

After that I had a lot of stomach issues. I was told I had ibs. I was taking meds to manage that. When I landed myself in the er again. This time my gallbladder had ruptured. They said I made it in just in time. After the surgery, my stomach issues were increasingly bad. I was told this was a normal side effect of gallbladder removal. My physical pain became worse. To where my whole body hurt all the time. I was diagnosed with fibromyalgia, and treated for that. That medication brought on a whole host of other issues for me.

I was in the opoerating room for what was to be my second female issue surgery, when we found out I was six months pregnant with my son. Had multiple ultrasounds and pregnancy tests all of which came up negative. But there he was. My little stinker. A few years after, my condition returned, this time I had to have my tubes and 1 and a half of my ovaries removed. The other was poly cystic. However, they just didn’t want to put a 25 year old through that kind of hormone therapy yet.

Fast forward another 5 years, I took a new job, had different insurance and had to get a new doctor. He was reviewing my files and asking me questions. Asking how I was feeling and if I still had these symptoms. By this time my hair had started falling out. It was pretty obvious that something was wrong. He ran some tests and that’s when we discovered that I had Hoshimoto’s and celiac.

The initial treatment worked wonders. I returned to his office in tears of joy. I had no idea I could feel that way. That one magic little pill could literally change my life. That was short lived though. My levels are struggling to stay under control. It seems to work for a few months then bottom out completely. At this point, they think my thyroid may be completely going south. My last test just a week ago my tsh was up to 45 again. We increased my levothyroxine to 250mg. I’m hoping this helps.

I know there are a lot of people out there who aren’t as symptomatic as I am. Who say hurtful things about how I use my disease as a crutch. They only have to take a pill and have no problems etc. however, I also know a lot of people who this is a battle for. Weather it’s Hoshimoto’s or something else that you’re struggling with, know that you’re not alone. You’re struggle is real and there is someone here to talk to about what you’re going through. I know I am not the only one, I would love to be your friend, so please add me.

mbaker566

hi

i have behcets. diagnosis was such a relief. currently, i'm off medication because i was tired of it all and doing ok.

there is a group here and i've been part of other groups but they all seem to be pushing some version of autoimmune diets. and there is no science behind it. and i like the science. if it works for them, great. but don't get angry when i ask for the evidence (nonanecdotal)

invisible illnesses are hard. most of my symptoms are nonvisible. when the time comes, i won't look like a person that people assume need the handicap spot. but that time will come for me. i have to be careful how much i push myself physically because i will pay later.

my family is very supportive. my friends are not but they think they are but w/e they try-even if they are wrong.

anyway, long story short-welcome, good luck, hugs

AmberGlitterSparkles

mbaker566 wrote: »

hi

i have behcets. diagnosis was such a relief. currently, i'm off medication because i was tired of it all and doing ok.

there is a group here and i've been part of other groups but they all seem to be pushing some version of autoimmune diets. and there is no science behind it. and i like the science. if it works for them, great. but don't get angry when i ask for the evidence (nonanecdotal)

invisible illnesses are hard. most of my symptoms are nonvisible. when the time comes, i won't look like a person that people assume need the handicap spot. but that time will come for me. i have to be careful how much i push myself physically because i will pay later.

my family is very supportive. my friends are not but they think they are but w/e they try-even if they are wrong.

anyway, long story short-welcome, good luck, hugs

My heart goes out to you! And kudos to your for still sticking with it in spite of everything!

Katierosefree

Thanks for sharing your story, you are a brave and strong lady! 💕

I was diagnosed with multiple sclerosis almost 3 years ago, and that was only by chance. I had developed optic neuritis, which is when the disease attacks your optic nerve. It was so painful and left me temporarily with partial blindness. After some tests, the diagnosis came and it was incredibly scary. I had been dealing with muscle spasms and extreme fatigue. Anyone that has an autoimmune disease knows that our fatigue is different...So after a couple of years on a drug that is supposed to help suppress the relapses/flair ups, I had a horrible one that led me and my family to the decision not to continue working. It was such a stressful job with long hours and I was just giving my all to that instead of my family.

Best decision ever! I miss my work friends and the social life, but to be able to focus on my family and my health has been wonderful! I’ve started eating more paleo with it being more primal/Keto. And I feel better already. I’ve been able to start exercising again, and I just have to remember to go at my new pace...slower and more careful. But I’ve had to accept that this is my life now, and it’s ok that it’s different. I’m still me, my family and close friends love and accept me and all my flaws, so I’m incredibly blessed.

I’m also really happy to meet new ppl and share success stories and be there for the stumbles. Together we’re stronger! 💪❤️

Good luck and please feel free to add me!

AmberGlitterSparkles

Katierosefree wrote: »

Thanks for sharing your story, you are a brave and strong lady! 💕

I was diagnosed with multiple sclerosis almost 3 years ago, and that was only by chance. I had developed optic neuritis, which is when the disease attacks your optic nerve. It was so painful and left me temporarily with partial blindness. After some tests, the diagnosis came and it was incredibly scary. I had been dealing with muscle spasms and extreme fatigue. Anyone that has an autoimmune disease knows that our fatigue is different...So after a couple of years on a drug that is supposed to help suppress the relapses/flair ups, I had a horrible one that led me and my family to the decision not to continue working. It was such a stressful job with long hours and I was just giving my all to that instead of my family.

Best decision ever! I miss my work friends and the social life, but to be able to focus on my family and my health has been wonderful! I’ve started eating more paleo with it being more primal/Keto. And I feel better already. I’ve been able to start exercising again, and I just have to remember to go at my new pace...slower and more careful. But I’ve had to accept that this is my life now, and it’s ok that it’s different. I’m still me, my family and close friends love and accept me and all my flaws, so I’m incredibly blessed.

I’m also really happy to meet new ppl and share success stories and be there for the stumbles. Together we’re stronger! 💪❤️

Good luck and please feel free to add me!

Wow! How brave of you to make that decision to stay home! It really a hard thing to do once you’re so used to working. It’s so out of the comfort zone. I bet you feel great now with out all the added stress though!!!