Help with Chronic Fatigue Syndrome

Posted by Sundance(RB) @sundance6, Feb 22 10:52am

I need some help and advice with Chronic Fatigue Syndrome! I have been chasing Lyme Disease, Fibromyalgia for almost three years.
I recently read more about Chronic Fatigue syndrome. You can just about throw a blanket over the symptoms of all three, and they match. The information I've read was very helpful, but some symptoms and the way CFS works was very similar to what I have been experiencing.
Any help or reference material would be Greatly appreciated.
I'm seeing my PCP this Thursday. Would like to go in with some information.
From The Land of Enchantment!
Sundance(RB)

Hi @sundance6 – I read this Sharing Mayo Clinic patient story that seems to have some similarities with what you have for symptoms. Have you read this one? — Complex Diagnosis Reshapes a College Student’s Future: https://sharing.mayoclinic.org/2016/11/21/complex-diagnosis-reshapes-a-college-students-future/

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@johnbishop

Hi @sundance6 – I read this Sharing Mayo Clinic patient story that seems to have some similarities with what you have for symptoms. Have you read this one? — Complex Diagnosis Reshapes a College Student’s Future: https://sharing.mayoclinic.org/2016/11/21/complex-diagnosis-reshapes-a-college-students-future/

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John, thank you very much for the article! As I had said you can through a blanket over Lyme, Fibromyalgia and CFS.
Unfortunately I can't afford to spend a summer at the Mayo Clinic. I have to deal with my hospital system where I live.
It's a constant struggle. Luckily my PCP is very understanding about my symptoms and helps where he can.
All three of those diseases are very hard to diagnose after a short period of time.
Let me know if you find anything new!
Sundance(RB)

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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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@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.

Jump to this post

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)

REPLY
@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.

Jump to this post

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)

REPLY
@sundance6

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)

Jump to this post

Hi Sundance;
So sorry to hear of your issues. I’ve been chatting in the EBV mono group with mono, fatigue, burning, tingling issues. However I have also been having issues with dizziness sometimes too. I’m adding this info again as I think you should read Anthony Williams books on Lyme and EBV etc. he covers absolutely everything and the diet protocol for it! It has most definitely been a life saver for me. The doctors have NO clue. I’m still waiting on an infectious disease doc appointment after 4 months. My issues went on all last year and finally seeing some improvement. His recent book ‘Cleanse to heal!’ Is in the library or amazon. I hope it helps.

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CFS has a root cause. A lot of the time toxic mold is the culprit. Do you have any water damage or mold in your home or workplace?

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@sundance6 – Has anyone mentioned POTS to you? Postural Orthostatic Tachycardia Syndrome. You mentioned your fainting and near fainting episodes – they can appear related to many conditions, including autoimmune.
This link discusses it in detail.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots.

REPLY
@astaingegerdm

@sundance6 – Has anyone mentioned POTS to you? Postural Orthostatic Tachycardia Syndrome. You mentioned your fainting and near fainting episodes – they can appear related to many conditions, including autoimmune.
This link discusses it in detail.
https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots.

Jump to this post

Thank You! Very interesting article! Many things it talks about are what I experience.
Working with my PCP to get a heart monitor called I believe Hotler. We'll see what it comes up with.
As of last week I found a Daily Journal notebook that I can keep a record of how I am feeling all the time. I've modified it a bit to keep track of what I am eating, feeling and any medication I take. It's starting to so some interesting similarities in pain, fatigue and other things.
I've started to listen closer to my body! When it tells me I am on the edge, I walk aways from what I am doing and rest.
Thanks Will keep you posted!
From the Land of Enchantment!
Sundance(RB)

REPLY
@sundance6

Thank You! Very interesting article! Many things it talks about are what I experience.
Working with my PCP to get a heart monitor called I believe Hotler. We'll see what it comes up with.
As of last week I found a Daily Journal notebook that I can keep a record of how I am feeling all the time. I've modified it a bit to keep track of what I am eating, feeling and any medication I take. It's starting to so some interesting similarities in pain, fatigue and other things.
I've started to listen closer to my body! When it tells me I am on the edge, I walk aways from what I am doing and rest.
Thanks Will keep you posted!
From the Land of Enchantment!
Sundance(RB)

Jump to this post

@sundance6 Journaling your symptoms and issues helps in several ways. It allows you to see the patterns that develop, and understand what may work to ease discomfort. It also creates a visual reference for both you and your medical team to see what is happening over time [we cannot rely on our memory to tell us what was going on two weeks ago when you didn't feel well!]. Also, getting it down on paper helps clear your mind, at least it does for me. I keep it in line with my regular journaling, and often find there are correlations between what my symptoms are and what else may be going on in my life.

Here is a journaling discussion on Mayo Connect that you might find interesting: https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/
Ginger

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There's a new book out "The Puzzle Solver" that talks about life with CFS and one researchers quest.
https://www.cnn.com/2021/03/12/health/ron-davis-covid-long-hauler-scn-wellness/index.html

REPLY
@sundance6

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)

Jump to this post

Hi Sundance; I feel your pain. Had back to back bouts of mono, think I replied and possibly mentioned before! CFS is beyond frustrating! 9 hours of sleep and to no avail. Even naps don’t do much. I think I mentioned that I switched to plant based and avoided fats and diary which helped to a degree, but not enough!! I’ve leveled out and was unable to get any better. My girlfriend with chronic back pain and hair loss sent me some bottles of Asea ( not from Amazon ) and I’ve felt an immediate improvement!! I kept thinking I was imagining things but so far I’m very impressed! Not trying to sell you anything, but honestly it’s worth getting a few bottles! Huge improvement in mental focus and energy levels. Look up Asea Redox testimonials off their site.
After a 2 year bout on mattress island I’m willing to try anything and it’s best to keep it natural. Piling on medications just seems to bog the liver down even further. Read Anthony William on Lyme disease. I hope that helps. The doctors have no clue how to heal autoimmune.

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