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Author Topic: Out of curiosity... anyone else battling an autoimmune disease?  (Read 950 times)

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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #15 on: December 05, 2017, 09:42:22 PM »
It's tricky as gluten free is a bit of a fad, that can make it difficult for someone with an intolerance or Coeliac disease as things labled as gluten free, might not be :crazy: you have to check, check and check again. Gluten also hides in medication (even prescribed medication), beauty products , drinks and so on.

That's tricky trying to avoid a vitamin :( most foods they fortify with vitamins as they think we all need extra and it's not always true. Barley Malt is used as a carrier to fortify foods with vitamins and it's not gluten free, often turning what would be gluten free to not being safe! I also avoid vitamin E fortified things as it's often derived from wheat.

Love pkw xxx

It's really tricky to avoid things that interact with Coumadin (the blood thinner I take). I can't take most over the counter meds without an interaction. The only pain medicine I can take is Tylenol. I can't eat greens. No lettuce, broccoli, beans, peas, guacamole, kale, spinach, brussel sprouts, blueberries, pumpkins, etc.

Offline pinkkittywinks

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #16 on: December 05, 2017, 10:01:33 PM »
:(

As a rule of thumb, I'm safe with fresh foods you cook from scratch, but no veggies/greens would make me miserable. Bread and processed foods are easy to live with imho.

You have to be careful with most medications, but blood thinners are tricky. I had a boss who took blood thinners (she suffered from multiple strokes) and like you had blood drawn every month.

:hug:

Love pkw xxx

Offline tikibirds

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #17 on: December 08, 2017, 07:06:17 AM »
Nothing serious, just Anemia and thyroid issues. Anemia is the bigger problem which is supposedly caused by heavy menstral bleeding but they never really checked for any internal bleeding, just assumed that was the cause. Anyways, Iron supplements do not work for me so I need iron infusions.
All I want to do is sleep and before the infusions, I would have to take several naps a day. I was getting blood work every 2 weeks. Now its once a month. My CBC is always "funky" and no one seems to know why.

 There are other symptoms but fatigue is the biggest one. I am also always cold, especially my feet, shortness of breath, ect which can be caused by the thyroid or anemia.
 Plus I think I am allergic to some common food ingredient that is used alot here but not in China. When I was there, I didn't have the stomach issues that I have here.


« Last Edit: December 08, 2017, 07:12:21 AM by tikibirds »
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Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #18 on: December 08, 2017, 02:08:29 PM »
Nothing serious, just Anemia and thyroid issues. Anemia is the bigger problem which is supposedly caused by heavy menstral bleeding but they never really checked for any internal bleeding, just assumed that was the cause. Anyways, Iron supplements do not work for me so I need iron infusions.
All I want to do is sleep and before the infusions, I would have to take several naps a day. I was getting blood work every 2 weeks. Now its once a month. My CBC is always "funky" and no one seems to know why.

 There are other symptoms but fatigue is the biggest one. I am also always cold, especially my feet, shortness of breath, ect which can be caused by the thyroid or anemia.
 Plus I think I am allergic to some common food ingredient that is used alot here but not in China. When I was there, I didn't have the stomach issues that I have here.

I'm anemic, too. My anemia isn't as bad anymore since I had a uterine ablation (I was suffering heavy periods from APS plus the blood thinners on top). Like you, I am always cold. Have they checked you at all for Reynaud's? I have been told by people doing ultrasounds on my legs I have small blood vessels and I'm almost worried that they will diagnose me with it within a few years.


Offline Einhornbaby

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #19 on: December 09, 2017, 10:24:38 AM »
Oh no, so sorry to hear that so many people here have to deal with such bad symtoms and diseases... :(
Youre so strong guys, so strong!! Dont stop keeping your heads up, I know you can!  :hug:


Im really sorry to hear that  :hug: that kind of battle is hard, I wish you lots of power to carry on!
Im battling Hashimoto-Thyreoiditis and Diabetes next to a couple of other things. Going on is hard sometimes.

Wow, that's a lot to be battling! What do you do to make
life better /easier? Since I am tired and cold all the time, coffee is a helper for me.

First thing for me : keeping up with the docs, having my blood tested every 8-12 weeks at least and checking the symptoms. It was hard to accept at first since I had a fear of needles but in the end its better to know whats going on than to speculate what could be :)

In everyday life :
Im having sports therapy twice a week which helps me a lot... Cant go each time Id like to since moving hurts too much sometimes but to be honest : it was the only thing that was really helpful yet.
I try to eat healthy. I have banned convenience food and artificial sugar (and as pinkkittywinks said, be safe with veggies and cooking from scratch!) and I try to keep myself away from too much stress and drama since it makes the symptoms worse.
Im also trying not to think about it all too much and try to enjoy little things. My husband i.e. has a clever trick : whenever I start moaning he will respond with "Did you read the news today" or anything like that to get me to discuss something else to distract me. Works well these days. Distraction is a big thing when you have a bad day in battle!
And coffee really is a savior!! <3 Indeed!

Keep strong! :hug: youre not alone!! If you feel to, Im always open for talking!!

Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #20 on: December 09, 2017, 01:30:03 PM »

First thing for me : keeping up with the docs, having my blood tested every 8-12 weeks at least and checking the symptoms. It was hard to accept at first since I had a fear of needles but in the end its better to know whats going on than to speculate what could be :)

In everyday life :
Im having sports therapy twice a week which helps me a lot... Cant go each time Id like to since moving hurts too much sometimes but to be honest : it was the only thing that was really helpful yet.
I try to eat healthy. I have banned convenience food and artificial sugar (and as pinkkittywinks said, be safe with veggies and cooking from scratch!) and I try to keep myself away from too much stress and drama since it makes the symptoms worse.
Im also trying not to think about it all too much and try to enjoy little things. My husband i.e. has a clever trick : whenever I start moaning he will respond with "Did you read the news today" or anything like that to get me to discuss something else to distract me. Works well these days. Distraction is a big thing when you have a bad day in battle!
And coffee really is a savior!! <3 Indeed!

Keep strong! :hug: youre not alone!! If you feel to, Im always open for talking!!

I understand about the needle thing. I have to have my blood tested at least once per month. If my blood is off (like it is right now since I started new medication because my GI doc diagnosed me with IBS) then I have to go in more often until we can get the correct dosage so my blood won't be too thin or clot too much.

Like others, I have banned certain foods/drinks for myself. I don't drink sugary drinks. I may indulge in a latte/cappuccino from time to time, but no juice or soda pop. I don't eat red meat. I drink a lot of water. I drink a glass of red wine at night (it has thinning properties and antioxidants and since the only thing my docs have said is in moderation, I'm going to continue unless they say otherwise).

I have a two-year-old and we go outside almost daily unless the weather is bad and get our vitamin D. He's very active and keeps me active.

Offline pinkkittywinks

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #21 on: December 09, 2017, 07:57:35 PM »
Tiki I used to have to treated for anemia and folic acid deficiency at least once every 12 months. It was put down to me having Coeliac disease, but since I had my heavy periods stopped (IUD to control heavy bleeding), I've only been treated for anemia and folic acid deficiency once in the last six years. I'm sorry you struggle with your thyroid as well, it's a horrible illness.

Einhornbaby you have a lot to deal with. My Mum has had serious thyroid issues throughout her life, including Hashimoto-Thyreoiditis. I've had an unstable thyroid in the past and have yearly thyroid checks.

Love pkw xxx

Offline Bren41882

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #22 on: December 25, 2017, 01:52:04 AM »
I was diagnosed with Rheumitoid Arthitis when I was 3yrs old. Contrary to popular belief its not a old persons disease and doesn't just effect the joints. Its a serious autoimmune disease that can't cause a lot of damage. I'm legally blind without glasses after it attacked my eyes and had kidney and heart damage as a child. You're not alone hun

Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #23 on: December 25, 2017, 01:16:15 PM »
I was diagnosed with Rheumitoid Arthitis when I was 3yrs old. Contrary to popular belief its not a old persons disease and doesn't just effect the joints. Its a serious autoimmune disease that can't cause a lot of damage. I'm legally blind without glasses after it attacked my eyes and had kidney and heart damage as a child. You're not alone hun

I'm so sorry. My grandma had it, too. Her fingers and hands looks like they belonged to someone else, they were so large and swollen. I don't think of it as an old person's disease. I have always thought of osteoarthritis as more of an old person's disease, even through my grandma seemed to be affected later in life. But I do understand how autoimmune diseases don't just limit themselves to attacking one place, such as the joints. Since mine is known to attack the blood, and yet I suffer with brain trauma and kidney and liver trauma.

Offline Lady.Arachnia

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #24 on: January 03, 2018, 05:04:50 PM »
Just got diagnosed with Ehler Danlos Syndrome and then the Hypermobility variant, or HMS-EDS....10 years back they told me...Owh you just have Fibromyalgia...here is a leaflet...read it and you don't have to come back because there is no treath for it and if the pain is to much just take OTC Paracetamol!!!!
I'm 39...and next time I go to the Reumatologist....I need to speak about getting a wheelchair for times I need to walk to far or when walking is a nono for that day...
This dissease effect me on soooo many levels....and because I got my diagnose just before the Christmas Season....I find it difficult to express how this is affecting my life....I'm still in a WTF modus....sorry!

Offline bluerose9978

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #25 on: January 03, 2018, 05:52:07 PM »
Just got diagnosed with Ehler Danlos Syndrome and then the Hypermobility variant, or HMS-EDS....10 years back they told me...Owh you just have Fibromyalgia...here is a leaflet...read it and you don't have to come back because there is no treath for it and if the pain is to much just take OTC Paracetamol!!!!
I'm 39...and next time I go to the Reumatologist....I need to speak about getting a wheelchair for times I need to walk to far or when walking is a nono for that day...
This dissease effect me on soooo many levels....and because I got my diagnose just before the Christmas Season....I find it difficult to express how this is affecting my life....I'm still in a WTF modus....sorry!


Oh, man! I'm so sorry! I don't blame you at all for being in WTF mode, especially since so many people are misdiagnosed when it comes to autoimmune diseases or told it's all in our heads. It's so frustrating! And we can't get help until something catastrophic happens.

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #26 on: January 03, 2018, 08:03:34 PM »
My rheumatologist tentatively diagnosed me with EDS a few years ago but since it primarily presents in me as several hypermobile joints he didn't bother with the genetic testing.  I have trouble with stitches and scarring too.  Aside from joint pain I don't have a lot of problems. 

Offline Reena

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Re: Out of curiosity... anyone else battling an autoimmune disease?
« Reply #27 on: January 11, 2018, 05:10:55 PM »
Some of the things described here are terrifying. You are all so strong for talking about it and be open.

I suffer from Hypothyroidism, IBS, Anxiety and Depression. Working on it though!