New reality with four autoimmune diseases

Posted by maui6698 @maui6698, Dec 16, 2019

Hey ya'll happy holidays. I have recently been Diagnosed with 4 auto immune diseases, spondylopathy, hashi’s, sjogrens, fibromyalgia. I don’t think that its sunk in yet. I’ve felt awful all this year, gone to dr to dr searching for whats causing all of my issues. Exhausted, cold all the time, my skin is so pale nearly translucent, total loss of appetite an interest in eating, night sweats, awful brain fog, muscles, joints hurt, dry eyes, dry mouth. I could go on . my family is so supportive. But I feel like I’m letting them down, I can’t do what I use to do, I wear out so easily. Is this my new normal? I feel like I’m missing a key diagnosis, but I don’t know here else to look.
Help! I don’t know … I’m so confused.

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Ginger, Volunteer Mentor | @gingerw | Dec 16, 2019

@maui6698 Having one autoimmune issue is tough, and hearing there are three more can be overwhelming, right? What is your medical team saying you should be doing to help yourself? Do you have a rheumatologist on your team? Be gentle on yourself, and don't push your energy limits, or you might be down for a couple days. I have done that to myself in the past, and wouldn't wish it in anyone! Keep eating good nutritious food, exercise when you are up to it, but not to an extreme. Some people say warm baths are good, and help them relax. I will be interested in what others have to say on this.
Ginger

lioness | @lioness | Dec 16, 2019

@maui6698 Join the pain journey we are all on , different illness Have you seem a rheumatologist? If you haven't make an appointment to see one I also have the dry,s in all too ,fibro as many have There are alot of items in our pain toolbox If you need help let me know my fibro is very old that I have A few are Ice,hot showers and linger awhile, Tens unit Eye drops,ACT mouthwash for dry mouth just a fewLet us know how you are so ng we are a caring bunch

janett18 | @janett18 | Dec 16, 2019

Hi, so sorry you are going through this. It is very common to have more than one autoimmune disease. I have three myself.i hope you have seen a rheumatologist and that is who made your diagnosis. You are in for a long road ahead, but I am living proof you can learn to modify your life accordingly. I was once bed ridden, but now I am up and around. The important thing to remember is to take good care of yourself, listen to your body and above all...DO NOT FEEL GUILTY. This is not your fault. I wish you well!

nire | @nire | Dec 17, 2019

Has your doctor ordered the autoimmune panel from a Mayo? It is a blood test that any doctor can order, and then it is sent to Mayo to test for all the antibodies that they now know of. New antibodies are found and added every year. Most doctors are not even aware of this test or the problems that autoimmune causes.
Also, since you know you have thyroid problems, I hope your doctor has put you on the right amount of thyroid meds. Thyroids are so important to feeling well and the right amount of thyroid medicine can make you feel totally right again. The wrong amount can make you feel like you are dying!
Eating mostly Whole Foods and no junk will be a big difference in how you feel and the energy you have. Drink enough water too and stay away from alcohol and smoking. Don’t give up and make sure your doctor orders the autoimmune panel!

maui6698 | @maui6698 | Dec 17, 2019

i am currently seeing a rheumatologist, how would i know if a full panel was done? i would like more help from her as to how to manage my symptoms than what i'm currently receiving. I’ve been on methotrexate and folic acid since August, its helped some with my spondylopathy, but I’m noticing my symptoms of soreness, in my joints and lets are coming back like they did before. I honestly thought I had lupus, I had so many of the symptoms of this but my dr said that my blood work showed that I didn’t have it. Its my understanding that you can still have it even if the markers aren’t there is that true? My thyroid is being managed, I’ve been taking meds and currently everything seems to be the correct dose.

lioness | @lioness | Dec 17, 2019

@maui6698 Glad your seeing a rheumatologist. Have you given the meds and her suggestions several weeks to work for you?Be your on advocate with her you know your body better then Dr does sometimes it just takes patients Take care