1. < Just Want to Talk

Help with Chronic Fatigue Syndrome

Posted by Sundance(RB) @sundance6, Feb 22, 2021

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)

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dinoman | @dinoman | Mar 13, 2021

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
suewilliams64 | @suewilliams64 | Apr 26, 2021
In reply to @sundance6 "Becky, As always you are there to add great advice! It will be three years in..." + (show)
@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)

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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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1 reply
sahilbhaia03 | @sahilbhaia03 | Dec 16, 2021

Hi All
I am a 25 Yr old male from India.
Are there any ME/CFS (Chronic Fatigue) specialists in India who can help me? Any doctor who specializes in this domain as I have fast exhaustion , un refreshing sleep , poor memory/concentration for past 10 years. Should I consider treatment in the US? All the doctors I have met so far have either prescribed me antidepressants or said I am fine.
Thank You

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 16, 2021
In reply to @sahilbhaia03 "Hi All I am a 25 Yr old male from India. Are there any ME/CFS (Chronic..." + (show)
@sahilbhaia03

Hi All
I am a 25 Yr old male from India.
Are there any ME/CFS (Chronic Fatigue) specialists in India who can help me? Any doctor who specializes in this domain as I have fast exhaustion , un refreshing sleep , poor memory/concentration for past 10 years. Should I consider treatment in the US? All the doctors I have met so far have either prescribed me antidepressants or said I am fine.
Thank You

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Welcome, @sahilbhaia03. I moved your post to this related discussion about chronic fatigue syndrome so you can connect with others members talking about CFS. I know how debilitating chronic fatigue can be. You've been dealing with this for such a long time since a young age.
I'm not aware of specialists in India. Should you wish to inquire about treatment at Mayo Clinic, here is the contact information: http://mayocl.in/1mtmR63

One silver lining of the pandemic is that CFS is getting renewed attention by health care providers and researchers as fatigue is a predominant symptom of long COVID.

Sahilbhaia, how do you pace yourself and manage the fatigue?

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1 reply
sahilbhaia03 | @sahilbhaia03 | Dec 17, 2021
In reply to @colleenyoung "Welcome, @sahilbhaia03. I moved your post to this related discussion about chronic fatigue syndrome so you..." + (show)
@colleenyoung

Welcome, @sahilbhaia03. I moved your post to this related discussion about chronic fatigue syndrome so you can connect with others members talking about CFS. I know how debilitating chronic fatigue can be. You've been dealing with this for such a long time since a young age.
I'm not aware of specialists in India. Should you wish to inquire about treatment at Mayo Clinic, here is the contact information: http://mayocl.in/1mtmR63

One silver lining of the pandemic is that CFS is getting renewed attention by health care providers and researchers as fatigue is a predominant symptom of long COVID.

Sahilbhaia, how do you pace yourself and manage the fatigue?

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Thank You so much Colleen. I try to exercise regularly to combat fatigue and sadness.
I am grateful for this forum Colleen .
Thanks

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 17, 2021
In reply to @sahilbhaia03 "Thank You so much Colleen. I try to exercise regularly to combat fatigue and sadness. I..." + (show)
@sahilbhaia03

Thank You so much Colleen. I try to exercise regularly to combat fatigue and sadness.
I am grateful for this forum Colleen .
Thanks

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Good morning @sahilbhaia03 i found this information when i looked up Mayo Clinic care members. It only took me to the google information page, but there were several hospitals noted. It would be better for you to read the info as you know where you are located in relation to the hospitals. I know it says they are specialists in gastroenterology, but I’m sure they can point you in the correct direction.
https://www.google.com/search?q=AIG+Hospitals&rlz=1C9BKJA_enUS796US799&oq=AIG+Hospitals&aqs=chrome..69i57j46i175i199i512j0i512l4.31696j0j4&hl=en-US&sourceid=chrome-mobile&ie=UTF-8
Will you let me know if you learn anything?

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1 reply
sahilbhaia03 | @sahilbhaia03 | Dec 18, 2021
In reply to @becsbuddy "Good morning @sahilbhaia03 i found this information when i looked up Mayo Clinic care members. It..." + (show)
@becsbuddy

Good morning @sahilbhaia03 i found this information when i looked up Mayo Clinic care members. It only took me to the google information page, but there were several hospitals noted. It would be better for you to read the info as you know where you are located in relation to the hospitals. I know it says they are specialists in gastroenterology, but I’m sure they can point you in the correct direction.
https://www.google.com/search?q=AIG+Hospitals&rlz=1C9BKJA_enUS796US799&oq=AIG+Hospitals&aqs=chrome..69i57j46i175i199i512j0i512l4.31696j0j4&hl=en-US&sourceid=chrome-mobile&ie=UTF-8
Will you let me know if you learn anything?

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Hi Becky
Thanks for the reply. I am not able to open this link. Can you please help me in finding an Indian doctor who specializes in ME/CFS?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 18, 2021
In reply to @sahilbhaia03 "Hi Becky Thanks for the reply. I am not able to open this link. Can you..." + (show)
@sahilbhaia03

Hi Becky
Thanks for the reply. I am not able to open this link. Can you please help me in finding an Indian doctor who specializes in ME/CFS?

Jump to this post

@sahilbhaia03 I’m so sorry that you were unable to open the link. I can try re-pasting it to see if that will help. Here is a link to a large hospital:
https://www.practo.com/hyderabad/hospital/aig-hospitals-gachibowli-3/services
What you will need to do is look up some of the large, university hospitals in your part of India and ask to see an internal medicine doctor. Are you working with your local doctor. He/she may be able to help by referring you to a specialist at a university hospital.
Also try this link: https://mayoclinic.org/about-mayo-clinic/care-network/members
Will you let me know if this helps?

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1 reply
sahilbhaia03 | @sahilbhaia03 | Dec 21, 2021
In reply to @becsbuddy "@sahilbhaia03 I’m so sorry that you were unable to open the link. I can try re-pasting..." + (show)
@becsbuddy

@sahilbhaia03 I’m so sorry that you were unable to open the link. I can try re-pasting it to see if that will help. Here is a link to a large hospital:
https://www.practo.com/hyderabad/hospital/aig-hospitals-gachibowli-3/services
What you will need to do is look up some of the large, university hospitals in your part of India and ask to see an internal medicine doctor. Are you working with your local doctor. He/she may be able to help by referring you to a specialist at a university hospital.
Also try this link: https://mayoclinic.org/about-mayo-clinic/care-network/members
Will you let me know if this helps?

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Hi, @becsbuddy.
Thanks for your reply. I could open this link this time. But I can't understand why are you referring me to this hospital?
Should I contact the Internal Medicine dept. of theirs? And why should I prefer an Univ Hospital?
Can I go to a reputed private hospital's internal medicine dept. in my part of India?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Dec 21, 2021
In reply to @sahilbhaia03 "Hi, @becsbuddy. Thanks for your reply. I could open this link this time. But I can't..." + (show)
@sahilbhaia03

Hi, @becsbuddy.
Thanks for your reply. I could open this link this time. But I can't understand why are you referring me to this hospital?
Should I contact the Internal Medicine dept. of theirs? And why should I prefer an Univ Hospital?
Can I go to a reputed private hospital's internal medicine dept. in my part of India?

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@sahilbhaia03 Im glad you could open the link. I referred you to that hospital and a stating place. It was listed as a care partner of Mayo Clinic. You could call them and maybe ask for a name of an internal medicine doctor in your part of India. And, yes, you certainly can go to a reputable private hospital nearer to you. I made the suggestion of a university hospital because, as i have personally found, the doctors are usually more knowledgeable. I cannot refer you to a particular doctor or hospital, only make suggestions. You need to call and make an appointment. Can you do that this week?

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