LIVING WITH LUPUS, HASHIMOTOS, FIBROMYALGIA AND SEVERE CHRONIC FATIGUE

I have Crohn's disease and now diagnosed with cancer.

Diet makes a difference for my autoimmune disease. My doctor isn't a believer but she is super pleased with the results. I started by working with a dietian who specializes in autoimmune conditions. Then I saw a holistic doctor who could help me understand want inflames my body. We are all unique. The path to disease is going to be different for everyone

@giggy300
I have Hashimoto’s and chronic pain/myelopathy/neuropathy and fatigue. I take levothyroxine and thyroid hormone controlled but still fatigued. My mom had lupus, RA, Hashimoto’s, fibromyalgia and chronic fatigue plus diabetes and heart disease. I watched her struggle with everything and moving was difficult. It seems I am on a similar path at age 55. I do try to eat as good as possible and take vitamins and supplements which helps some but I tend to overeat for my metabolism because I think I use food in hopes it would give me more energy but all it does is make me gain more weight. Reducing inflammation and stress is really important and moving as much as possible is helpful. I just need to be careful not to overdo it because I could easily get hurt (also have balance issues/dizziness). I need to ask for more help doing things but have very limited support so I need to push myself as much as possible. It is all exhausting but we just need to take one day at a time, take as good care of ourselves as possible and get more help/support from those around us and seek it from others.

giggy300, God Bless You & praying for you right now. I have all you mentioned, but Lupus.

It's a daily battle with pain & fatigue. I can't tolerate any of the meds that most people can take for these conditions. I take a lot of supplements. Flexeril 5 mg seems to help me the best along with Extra Strength Tylenol. I have both Thyroid Diseases, Hashimotos & Hyperthyroidism. These are very hard to keep on an even keel. Just started PTU 2 weeks ago since the Methimazole was causing issues.

I do find that an occasional massage helps. I also use Voltaren Gel for my arthritis & Fibromyagia pain along with heat packs. I soak in Epsom salt which helps.

Sugar & Caffeine are triggers that cause more pain/inflammation.

I've had Fibromyalgia for almost 30 years and it has gotten worse as I have gotten older. My heart goes out greatly to those who battle chronic pain & fatigue. I do believe the Hashitmoto's/Hyperthyroidism has caused more pain as they both can affect your joints.

I am so sorry that you are battling this. It's hard and you have to take it one day at a time.

My faith in the Lord keeps me going. Blessings & Prayers & Hugs....

Thank you so much for your response! I really need to look into a dietician that specializes in auto immune disorders. I live in a small town, so probably no options here, but I also fly to Stanford twice a year for my Severe Chronic fatigue and myalgias, so I will certainly look into that there! I am SO sorry about your cancer diagnosis. Keep fighting! We all have to take life one day at a time.

Thank you so much for your response. It’s a daily battle as you know. I also suffer from Long Haul Covid and sometimes I don’t think that I can make it another day, but that’s when I go straight to bed! My faith in GOD is also what keeps me going. The Severe Chronic Fatigue is what is my most debilitating symptom. There is not enough adjectives to describe how EXHAUSTED I am literally ALL of the time. I have to take 90 mg of Adderal a day, Stanford put me on a very low dose of Naltrexone. They write it off label for patients like me and it has helped some. I still have to drink like 2 5 hour energy drinks on top of that to get through the day and I don’t even work outside of the home anymore. Gracious, it’s SO TOUGH for all of us and it helps to be able to talk to other people that truly somewhat understand. I was diagnosed with Fibromyalgia and Severe chronic fatigue when I was 21 and got a SEVERE case of mono. The mono was SO severe that I literally had to quit my job and move home back in with my parents. I couldn’t work for 8 months way back then and I have never quit feeling like I have mono and I’m 52 years old, so I have also struggled with it for 30 years… 🥲🥲🥲

Thank you so much for responding. I am 52, so we are both way too young to feel like we do. My dad had RA, osteoarthritis, high blood pressure, high cholesterol, neuropathy in his feet, SEVERE SEVERE gout; I could go on and on. I also grew up watching his struggles. It seems I have taken after him in many ways. I’m glad that I have come across this group to be able to talk to people who actually understand. 🩷

The dietitian I worked with was virtual. They work only with people who have Crohn's or Colitis. It was mostly education and guidance. They called my eating style whole food plant based antiinflammatory pescatarian.

giggy300, Bless you friend.

I had a bad case of mono in Junior High.....I believe that got the ball rolling for a compromised immune system....hence, fibromyalgia & CFS & chronic infections. I also have Long Covid. I couldn't tolerate the LDN, but, it has helped many.

We are going to make it my friend, with the Lord's help and praying for each other. God Bless You greatly. Keep me posted.

Oh I got you! Well, I actually remembered that they said I need to be on the Mediterranean diet for my issues. I just need to work harder, be more strick with what I eat and try it again. I just don’t like eating a lot of fish and chicken. I will revisit the specifics of the diet tomorrow. Thank you!

I certainly agree with you about the mono starting the ball rolling. I think that it started mine as well. GOD is the only way! One day at a time. I will be praying for you as well! ♥️