Hello Michael, welcome to MedHelp's forums. Thank you for your question. Working with your doctor is important and are glad you have been followed. Remember, you can always get second opinions from another doctor. Some give up and some continue to search for answers for their patients as they solve a medical mystery. Have you ever considered visiting a nutritionist? They may help with a diet plan to correct any deficiencies. Vitamin deficiencies are also associated with fatigue.
Chronic fatigue syndrome is a true disorder but often doesn't get the attention from health care providers which is unfortunate. It's complex though and hard to narrow down to this diagnosis. https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490. One thing that literature shows is those diagnosed with chronic fatigue syndrome often do better when they stay on depression medication rather than taking for a while and discontinuing it. Food for thought. Exercise is great but for CFS, it's graded exercise that matters. Online support is important too and we are glad you found us. We'll reach out to members and hope that you connect with others here also coping as best they can.
Please know that there is always research and studies going on to improve things for those diagnosed with CFS. Here's something that just came out https://www.deccanchronicle.com/lifestyle/health-and-wellbeing/060319/chronic-fatigue-syndrome-can-be-improved-with-cocoa.html
So, please stay in touch.
You may have fibromyalgia. Your symptoms are almost like me. My condition is almost same like you. Only I and my doctor knew about my health status. I always try to stay happy happy and active but tiredness always remain with me. I am always scolded at home for being lazy but I can't help it. At college, teachers wonder that why I don't participate in any physical activities such as dancing or any sports. But I can't.
I bet you have an allergy. I have met dozens of people in the last year who turned around all of their “undiagnosable” symptoms CFS, IBS, fibromyalgia, anxiety, etc but only changing their diet.
I have a severe soy and milk allergy that affects my brain (dizziness, panic attacks, cloudy thinking), causes muscular pain and IBS. Found out after being hospitalized last year. Before any tests my gastro doc said stop eating dairy immediately, get skin prick allergy testing and look into an elimination diet challenge of the top 6 food allergens. Of course all of my many many blood tests, MRIs, esophagram and endoscopy came back 100% normal. However there is a “non-ige” type of allergy that there is NO test for. The only way you find out is elimination diet for 3 weeks, then slowly add back in each of the 6 until you find what affects you.
After 3 weeks I felt better than I have in 10 years. My anxiety vanished along with my other symptoms. As I added back each milk and soy and all of the symptoms returned.
Here is how it works for me. If I accidentally have a trace amount of soy for example, I will get immediate stomach discomfort, but then 2 DAYS later I get all of the mental disorder symptoms back and it lasts for 2 WEEKS. This is why it is so hard to nail down what food you are allergic to.
Make a food log and if you feel worsening symptoms, consider what you ate up to 2 days ago. There is no cheating on this kind of diet. Trace amounts make me feel like I’m dying for 2 weeks. No ice cream is worth that hell. Make a commitment and eliminate dairy, soy, eggs, wheat, nuts, seafood for 3 weeks and see how you feel. If your symptoms are better, add one food type back in one week at a time. 80% of people with a food allergy are affected by more than one allergen so don’t stop when you find one culprit.
Hope this helps, good luck!