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Sundance(RB) (@sundance6)

Help with Chronic Fatigue Syndrome

Autoimmune Diseases | Last Active: Apr 26 10:19am | Replies (12)

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@becsbuddy

Hello @sundance6 I’ve been reading all of your helpful posts in the past and now you’re asking for help. CFS seems to be a difficult disease to diagnose (as are all autoimmune diseases). It gets very frustrating, doesn’t it? You said that you’re seeing your PCP this week—do you think he/she can give you a referral to a rheumatologist? They are the doctors who are supposed to be up on autoimmune diseases.
I added this discussion about getting a proper diagnosis. See if it might give you any tips
https://connect.mayoclinic.org/discussion/tips-for-getting-a-proper-diagnosis-of-an-autoimmune-disease/
Let us know what your doctor says.

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Replies to "Hello @sundance6 I’ve been reading all of your helpful posts in the past and now you’re..."

Becky, As always you are there to add great advice!
It will be three years in July I have been fighting this fight with whatever it is I have. Both my diagnoses of Lyme and Fibromyalgia have been done on my symptoms. The Lyme by a doctor who was a microbiologist then studied under a doctor who specialized in Lyme disease in my hospital system, he is now in orthopedics and treats me for Bursitis in my right hip, but has been working with me for three years, so he is very familiar with my symptoms !
The Fibromyalgia diagnosis was done by a Rheumatologist in my hospital system. He was the last doctor I saw in my first six-month search as to what was and still is wrong with me! He gave me the diagnosis very flip int! It was at the end of my consolation of blood test testing for something else, Herpes and something else. It came when I asked him to ID what he thought I had. He just threw it out. Then said he doesn't deal with Fibromyalgia! Strange that Mayo and other medical institutions do !
So in a book I'm reading they mentioned ME/CFS and its symptoms. Then I went online and read more about it. You can throw a blanket over all three symptoms, and it's hard to distingué them.
I just know my symptoms have gotten worse over the last year.
One thing the information I've read talks about fatigue and how to deal with it! I've been working on understanding what my body is saying to me. I get a certain feeling when it tells me to stop what I am doing and rest! (this is what I didn't understand 10 days ago when I passed out on my feet, after getting a haircut, and after spending three hours in the ER trying to figure out my dizziness, headaches, and double vision,! My body just gave up on me!) It's happend twice before, but I was able to lay down immediately.
I now watch myself when I start to fade. I can usually last about two hours of work or other things when it hits me! I've been getting good nights sleep! Slept 8 1/2 hours last night. Have then taken a nap both in the AM and PM today.
Unfortunately I can't afford to go to Mayo in Scottsdale.
Going to rest up Thursday when I have my PCP appt. to try and pin him down as to what is going on with me.
As I said he has been understanding about trying to help with symptoms of the headaches and the insomnia with medication.
I'm going to go to the site you mentioned to see if they have advice.
Thanks again! You have always been helpful and understanding!
Sundance(RB)

So Becky, Here I am back again!!! In a little better place! Had my Thursday appt. With my PCP. We had a very open and frank meeting about the last 2 1/2 years. I finally got to admit that he is not sure what I have! We've debated over Lyme Disease before. This time I had facts about its diagnoses, which backed him off of the Lab that did my original test for Lyme did not use the Western Blot Test. He tried to say that they don't do it if you show negative from their test, which I said was absurd.
Then we got into Fibromyalgia! ! He said the Rheumatologist in their hospital system does not deal with it! I said that is strange because Mayo Clinic does as do several others!
We then went into Chronic Fatigue!
He finally said that you can put Fibromyalgia and CFS together, and they replicate each other as far as many symptoms! He somewhat admitted that Lyme has many similarities! When I reminded him of what I have told him before about my teeth hurting and that Lyme was the only one who has that symptom! He just nodded his head!
As You know, because I have said it before, New Mexico is a Third World State as far as the medical services provided! I love where I live and don't want to live anywhere else!
He was quite honest, and we agreed there really no cure for all three once Lyme has progressed. In spite of the ads saying they can diagnose Fibro!
As I've said before he has been a tremendous help dealing with my symptoms. I will be very honest and upfront about his help. Younger doctors would not have done the same.
I take 2 1/2 – 3 Oxycodone a day for principally the headaches and joint pain and an Ambien at night to help with insomnia at night which comes with all three!
We did talk about managing my time and my energy! I did go online and found a great 90-day journal that pretty much covers my day from when I awake and when I go to sleep and how I slept.
As for how many times I have tried to explain to my family, as do many with one of the three diseases, they refuse to acknowledge them.
So that's why Mayo Connect is so important to my Life! So Life goes on! I know I have to watch what I do and acknowledge when I need to jump off of the merry-go-round!
Peace to You!
Sundance(RB)