Invisible illness how do you cope?

I’m with you.
Seems all I do is go to doctor appts every week, and I’m not getting anywhere
Very frustrating!

We are all genetically so different. I think its impossible to generalize. I know many chase a diagnosis and never really find the answer. The medical field is much better at giving you something to offset the symptoms than a real diagnosis. Not blaming them. Just the way medicine works. I found that you can find a Dr. that will stumble onto an answer. Might take some time. It may not be one answer either. I thought I was going to die with muscle aches and pains. I finally went to Mayo clinic and had PMR. They cant cure and dont know what causes it but they treated it and I am in remission. I think your doing the right thing by trying to find your own cure. Knowledge helps.

Has your Dr ever ruled out fibromyalgia? I am over 80 and 30 years ago, I hurt all over except my left ankle. I went to a rheumatologist and carried all my test results. He checked me for triger points with his hands and told me you have fibromyalgia. There is no blood test for it.
With help with flare ups, I am very active and not in pain often. Please don't give up! Keep searching.

Keep advocating for yourself,
Do you have access to the results of all of your tests? Have you seen a rheumatologist? Knowing details of family history can be relevant. Be aware of the effects of all your medications. A university med center
or tertiary referral center may be your next option if your insurance allows proper access. It can take years to arrive at a diagnosis. It helps to document your symptoms in a journal. Consider a good trial of an anti inflammatory diet.

it is very exhausting

Hi,
Frankly I don't cope very well but cope I must as there is only death as the alternative. Apart from multiple chronic health concerns my complete nervous systems are compromised and only playing with the symptoms is possible. There is no cure and no treatment and not a lot of point in dealing with any of my chronic health issues as they take a back seat compared to the Dysautonomia's I have. I try not to think about my health issues and instead concentrate on occupying the mind with work, physical or mental. My big step forward was finding out what I don't have, I'm no longer panicing over what it could be. Dr Google has been a great friend to me teasing me with all manner of diseases I might have while occasionally actually allowing me some insight into what I do have and how there is no way around it. Currently I monitor the PN from diabetes creeping up my legs and through my hands, I'm not overly concerned about it as it is what it is and I can't stop it and it won't stop me doing what I do. At least that is my resolve, ignore it and carry on regardless while I have the determination to do so.
When specialists throw up their arms and admit there is nothing more that can be done while telling me it will only get worse, I know I'm in the fight of my life, alone and having to manage every day I wake as best I can. My wife tells me as long as I'm walking, talking and causing trouble I'm OK, I dearn't argue with that!
Cheers

I'm sick of appointments. My doc told me today that blood test showed something about a level going from 200 to 400 an auto immune blood test. What could this be anyone ?

I read a lot of books on Fibromyalgia and one said, there is only 3 things to remember. Exercise, exercise, exercise! Stretching is also essential. Please take care and do as much as your body let's you. Never give up.