"How many people have autoimmune diseases or even know what they are?

Posted by Kimberly @sebley12, Aug 17, 2011

I am a patient with MS, Lupus, Sarcoidosis, Psoriasis, Erethema Nodosum, Scleritis, Blferitis, optic Neuritis, Gastroparesis and many more.
There are over 100 autoimmune related diseases that so many people are unaware of and need ro educate themselves as well as their Doctor’s so that no one will have to wait 35 yrs for a true diagnosis like I did.
Autoimmune diseases are the number one killer especially to women and children.
Please visit aarda.org to learn more about autoimmune and how it can be related to your chronic illness. I promise you wont be sorry that you did. I am just an advocate for everyone here who is looking for answers and seeking help.
Thank you for listening. xoxo

Mayo has a pots clinic I believ

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i have 30+ auto immune related disorders. I waited many years for a diagnosis, but now one knows how to treat me. I have been living on steroids and narcotics, Mayo is taking my narcotics away. Non narcotic pain meds and immunosuppressent meds have not helped me in the past. I am worried about losing my functionality. Anyone use methadone maintenance?

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@kimpf

I was diagnosed with Lupus 18 years ago and ‘upgraded’ to MCTD several years ago. I have also had 2 minor strokes. In November I was diagnosed with Pulmonary Fibrosis, Yuk! I have my first appointment with Mayo in Phoenix in March. Eventually, I guess a lung transplant will be considered…..

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I have been diagnosed with mctd and fibromyalgia. Diagnosed 6 yrs but I think it started 15 yrs ago (based on everything I read). I have never heard of strokes being a problem. My rhuemy is not been very forthcoming with info on my mctd and would appreciate any info of strokes because of mctd. I try and read eveverything I can but any info would be helpful.

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@roysbaby

I was tanning for wedding in may this year got itchy rash and diagnosed with lupus

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Why does autoimmune disorders seem to come in multiples. Is this the norm?

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@breni

Hi, I was diagnosed with several different autoimmune diseases about 6 years ago. I started out with PAD and after a Bi=femoral bilatteral aortic by-pass I was diagnosed with Lupus, fibromyalgia (the list goes on and on) I have been on Plaguenil for five years as well as other medications. Nothing changes and pain remains a constant. I like your suggestion to visit aarda.org. I will do that.

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How do I get this book?

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Sebley12 thanks for your post . I also have several autoimmune diseases. Lichen sclerosis, otosclerosis, restless legs, peripheral neuropathy, blefaritis, and now just diagnosed with gout. Unbelievable because I don’t eat any of the things that bring it on. I didn’t drink enough water though but I sure am now. Once you get a autoimmune disease it seems your exposed to others.

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@katiandtylersmom

I have Hasimoto’s thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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I have Hashimoto’s thyroiditis too, along with Sjogren’s Syndrome, Fibromyalgia, and other diseases. I’m on L-Thyroxin for Hashimoto’s, so it has been staying at good levels. I have gained weight and know if not treated, that happens, but I wonder if it happens anyway? Also, fatigue goes along with that and my other auto immune diseases, and I believe hair loss may be a factor, which I also have. I’ll be interested to see what others have to say.

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@katiandtylersmom

I have Hasimoto’s thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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I have Sjogren’s Syndrome, and overwhelming tiredness seems to come along with that at times.  I hope you feel better.  Dry eyes is a major problem for me because of Sjogren’s.                                                                Janet

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@katiandtylersmom

I have Hasimoto’s thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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I’ve had Hashimoto’s for 30 years. The best treatment ever received was Diflucan. It’s an antifungal. But apparently you can’t stay on Diflucan forever. I take 60 mg of Armour Thyroid it takes the brain fog away helps me keep my weight tolerable. My doctor has suggested that I follow a nondairy gluten-free diet. I think I do lose weight when I follow it – but its – slow so very slow. I’ve also learned to take a good digestive enzyme supplement. I feel fine about 75% of the time. I do believe all the autoimmune disorders are connected to antibiotic use. The antibiotic use is connected to gut health or the lack there of. I believe that there’s a whole new science emerging that will address these autoimmune disorders through gut health – and the balance of flora and fauna and enzymes. Until then we’re really on her own with the help of good doctors. In today’s fast schedule of work and life I find it almost impossible to avoid gluten or dairy – in some tiny form. If all I had to do was carefully prepare my meals each day it’s attainable. Since my doctor won’t prescribe Diflucan on a regular basis (and I have yet to understand why but I do trust him) – I take my own antifungal’s like olive leaf extract. It helps but it’s a BB’s worth of ammunition compared to the cannonball Diflucan.

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@katiandtylersmom

I have Hasimoto’s thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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Hi @ambrose. Welcome to Connect! Thanks for sharing your story and insights with our community. It sounds like you have certainly done your research which is so important as we seek to be our own health advocates. And, i’m glad to hear you have a doctor you trust! You said you feel fine about 75% of the time… what are some of the symptoms you experience the other 25%?

Also, I just wanted to let you know I removed your phone number from your post for your protection and privacy. We encourage people not to share that kind of personal information and instead connect by private message if they want to chat offline.

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@katiandtylersmom

I have Hasimoto’s thyroiditis. Its autoimmune. Just wondering if anyon ehere has or knows about the problems with this disease?

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Hi @flowerbeauty. Welcome to Connect! Thanks for joining and sharing your insights with our community. We are happy to have you here. You mentioned fatigue and dry eyes as the major symptoms you experience. Any tips for coping with both of those?

I’d like to introduce you to @kyjeanne, @jillnc, @blindeyepug, @pw2bwell, @johnwburns and @dawson54 who all have Sjogren’s Syndrome. You may consider starting a new thread in the Autoimmune Diseases group where you all can share experiences and support each other. I’d be happy to help you do that if you’d like.

Liked by kyjeanne

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Yes thank you for removing my telephone number I didn’t know it was there I still don’t know how to remove it. 25% of the time I feel a lack of energy, brain fog and just a general malaise. I lead a very active life as a wife and grandmother employed part-time and full-time volunteer activities. I also enjoy gardening – help with the chores on our small farm which includes beekeeping. Needless to say I really miss any little bit of energy that fades away. I know if I could lose the 50 to 75 pounds I’m overweight I would probably gain some of that energy back. Short of not eating at all I don’t know how to do it. I truly believe that the obesity epidemic in the United States is not the result of out-of-control eating. I believe it too is connected with antibiotic use probably antibiotics in our food as well. I’m working really hard at becoming vegetarian or at least lacto – ovation vegetarian – minus the Lacto – right? Honestly I’m beginning to fear food. The state of the American diet has never been at a lower ebb – even the good food makes us fat. I look forward to the day that doctors admit it wasn’t all our fault.

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I’ve done my on unofficial, random count – it’s somewhere between 25 and 40%. In any given group (women especially) I’ve asked the question “How many here have thyroid trouble / Chronic Fatigue / Fibromyalgia / (something else that wasn’t heard of 25 years ago). It’s never lower than 1 in 4 – many times it’s at least 50%. I think men are in that same category, but they don’t go for treatment / diagnosis until it’s morphed into something much more serious. Try it yourself – and please, do share what you find. When I see someone who is obesely overweight, I likewise believe that it’s due, at least in part to thyroid / adrenal gland disorder – and not to out of control eating. There is more to the story than a whole generation, which includes children, that suddenly became 50 to 100 lbs overweight. Yes, food is in that equation, we do live in the land of plenty and a whole lot of it is FAST Food – and then there is the metabolic factor. What happened to everyone’s ability to digest and metabolize food – including fat?

Some answers are forthcoming – and beginning to see daylight. We hear the Over ANTI-BIOTIC cry (which is true). Here in the midwest, we hear of rumors that farm animal use of antibiotics should be curtailed – save it for human disease. There is the emerging science of and medical practice of healthcare workers educating the patient as to gut health. I’ve heard more and more of my friends say that their Dr. is recommending probiotics, Vit. D, and non-dairy gut repopulating drinks like Keifer, and Kombucha, and Live vinegar’s. A popular east coast newspaper (can we say the name?) featured an entire section on the emerging science of gut health. It can’t come too soon.

WHEN we find out the real cause of the above disorders, I believe we are going to look back and say, “Why did we load all of this research on the backs of the masses?” Why didn’t more healthcare professionals speak up – LOUDLY? Why wasn’t sugary drinks outlawed? (Okay – New York gave it some effort – ha!) Some schools have banned flavored milk…there are various islands of efforts being made to educate the public – and yet even when fat and dairy and sugar are reduced, no dramatic decrease in disease and obesity are realized! Why not?! (please excuse the digression).

Direct answer: No one really knows how many have auto-immune diseases – nor even how many auto-immune diseases exist. It’s a very good question. The numbers are very high and there is a very basic fundamental / common cause – of that, there is no doubt.

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I totally agree. I was an extremely active, thin woman (actually modeled when I was young). I used to sky dive, scuba dive, hike, bike, one step away from being a black belt in Tae Kwon Do. Never weighed more than 120 pounds except during my pregnancies. Gained 50 pounds with each pregnancy and easily lost the pounds after. Then I got into my mid to late 30’s. Things started changing. No matter how much sleep I got, I was overwhelmed with fatigue. My joints started swelling and aching. My muscles started to hurt. I could no longer wear my contacts. I was sensitive to heat and changes in weather. I started to not be able to lose weight. I had a complete hysterectomy because my doctor thought many of my issues had to do with ovary and uterine issues. Nope. The symptoms continued and got worse. Went to rheumatologist and endocrinologist. To make a long story short, I have been diagnosed with rheumatoid arthritis fibromyalgia, sogren’s snydrome and I have a node on my thyroid. (Two sisters had thyroid cancer and had to have their thyroids removed.). I weight as much as I did when I was pregnant! I am on medication, but nothing makes it all go away or stops the pain.completely. I feel more and more people are having these sort of problems, and doctors don’t seem real sure on what to do. Frustrating!! I know it could be worse and I try not to complain, but it is hard to have several chronic conditions with no hope for a cure and very little in the way of effectively managing symptoms without side effects from medication!.

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@blindeyepug

I totally agree. I was an extremely active, thin woman (actually modeled when I was young). I used to sky dive, scuba dive, hike, bike, one step away from being a black belt in Tae Kwon Do. Never weighed more than 120 pounds except during my pregnancies. Gained 50 pounds with each pregnancy and easily lost the pounds after. Then I got into my mid to late 30’s. Things started changing. No matter how much sleep I got, I was overwhelmed with fatigue. My joints started swelling and aching. My muscles started to hurt. I could no longer wear my contacts. I was sensitive to heat and changes in weather. I started to not be able to lose weight. I had a complete hysterectomy because my doctor thought many of my issues had to do with ovary and uterine issues. Nope. The symptoms continued and got worse. Went to rheumatologist and endocrinologist. To make a long story short, I have been diagnosed with rheumatoid arthritis fibromyalgia, sogren’s snydrome and I have a node on my thyroid. (Two sisters had thyroid cancer and had to have their thyroids removed.). I weight as much as I did when I was pregnant! I am on medication, but nothing makes it all go away or stops the pain.completely. I feel more and more people are having these sort of problems, and doctors don’t seem real sure on what to do. Frustrating!! I know it could be worse and I try not to complain, but it is hard to have several chronic conditions with no hope for a cure and very little in the way of effectively managing symptoms without side effects from medication!.

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Thyroid disorders cluster with Sjogren’s so that might make you feel a little less cursed. I had Grave’s disease about 18 years ago and have no thyroid now. So were you diagnosed with RA or did you have Rheumatoid Factor along with the Sjogren’s? Get a world class endocrinologist if you can find one. GP’s shouldn’t handle thyroid in my opinion.

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