Educating others on autoimmune diseases

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.

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.

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.

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!.

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.

I had a super endocrinologist but he stopped accepting my insurance. Having a hard time finding a good new endo doc that accepts my insurance. It has been over six months since I have had my thyroid nodule checked. I had lip biopsy that confirmed Sjogren's. Was diagnosed with RA three years before Sjogren's diagnosis. Never have have had rheumatoid factor show up, I was diagnosed by symptoms, very high sed rate and x-rays.

Did you have any markers for Sjogren's such as anti-ssa/ro? Any HLA checks for ones that associate with RA? Reason I ask is that Sjogren's can mimic some RA symptoms, I think. And, the is SS secondary to RA. I like to think that a person can only have so much bad luck but I know that I'm wrong. Here's an example article. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4613176/

<p>my step mother died of auto immune disease. Now my father thinks she was gay and got the disease. If she had the disease that the world dealt with from the 60's and 70's wouldn't he be dead too? I know that other diseases sprang from aids like fibromyalgia. Someone is filling his head with bad stuff about my step mother and I don't know how to respond to him.</p><p> </p>

Hi @user_chc4f6529, I moved your message to this discussion, so you can meet other people talking about autoimmune diseases.

It can be tough to talk with a family member who is convinced by their opinion. It is best to stick to the facts. Fibromyalgia is not related to sexual orientation or AIDs. It is, however, more common in women than men. And people with other rheumatic diseases, such as rheumatoid arthritis or lupus, may be more likely to develop fibromyalgia. You can read more about fibromyalgia from Mayo Clinic here: http://mayocl.in/29AFgtP.

Fibromyalgia is more common in people with rheumatic and/or connective tissue diseases? Its a pain syndrome of unknown etiology. These other diseases provide plenty of opportunity for pain on their own. If you have been diagnosed with an autoimmune disease probably better to root cause that as the source of pain while treating the fibromyalgia pain symptoms.