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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@becsbuddy

@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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Thanks for your response @becsbuddy .
I got your point Becky. I will contact a good hospital's Internal Medicine soon (possibly a Univ hospital).
Thanks a lot for your help Becky. May you and your family be blessed with good health and happiness. Will keep you informed.
Yours Sincerely
Sahil

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@suewilliams64

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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I am told I have fibro and I believe CFS is probably more dominate. I always am more tired when I wake up then when I go to bed. Take naps at least 1.5 hrs a day often twice a day and don’t get up til usually 9:30 or later.
I read your post with interest. Looked up the product you have used and saw the following info. Thought I’d share for whatever worth it may have. The source of the reviews credibility may be questionable too!
Sorry, I am not sure how to attach link!

contrahealthscam.com

Home/ Reviews/ ASEA Redox Cell Signalling Supplement is A SCAM! (Honest Review)
ASEA Redox Cell Signalling Supplement is A SCAM! (Honest Review)
By Obinna Ossai, MD | UPDATED: October 3, 2021

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@shenne

I am told I have fibro and I believe CFS is probably more dominate. I always am more tired when I wake up then when I go to bed. Take naps at least 1.5 hrs a day often twice a day and don’t get up til usually 9:30 or later.
I read your post with interest. Looked up the product you have used and saw the following info. Thought I’d share for whatever worth it may have. The source of the reviews credibility may be questionable too!
Sorry, I am not sure how to attach link!

contrahealthscam.com

Home/ Reviews/ ASEA Redox Cell Signalling Supplement is A SCAM! (Honest Review)
ASEA Redox Cell Signalling Supplement is A SCAM! (Honest Review)
By Obinna Ossai, MD | UPDATED: October 3, 2021

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Well I and my friends who have been using Asea the last year or so have felt so much better and an increase in energy. If you go online you will always find a negative review on pretty much anything. I suggest you go on there website at Aseaglobal. There are 400 plus independent studies that promote the product. Either way reading Anthony Williams ‘Cleanse to heal’ or taking Asea you can’t go wrong!!

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@suewilliams64

Well I and my friends who have been using Asea the last year or so have felt so much better and an increase in energy. If you go online you will always find a negative review on pretty much anything. I suggest you go on there website at Aseaglobal. There are 400 plus independent studies that promote the product. Either way reading Anthony Williams ‘Cleanse to heal’ or taking Asea you can’t go wrong!!

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I will look into it further. I sure could use both. Thank you for responding.

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Since I also have Fibromyalgia and low energy I got interested to learn about ASEA products.
I’m disappointed reading about this product- it’s too vague. The only certain components are water and salt.
Maybe that’s why it’s not FDA approved. Most supplements are able to list detailed description of the ingredients.
Would this be compared to “alkaline water” now sold in grocery stores with claims of improved health?

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It seems a mystery to me why ME/CFS remains a mystery to doctors. The research being done is done with good intentions, however when you read it, it seems unstructured. I don't understand why there is no data base. We live in a super technical age. A data base would be a good starting point. Why not examine what we all have in common. Then, go from there as a research group. Instead, the information I read is scattered all over the place. I'm sure the physicians involved have the best of intentions, but there seems to be a lack of organization. After 40 years, I would assume this puzzling
ailment would put everyone on the same page. It hasn't. Also, jumping the long Covid bandwagon isn't going to help the ME/CFS people. Long Covid and post-Covid syndromes have definite origins. ME/CFS seems to have a mystery origin for which there is no marker. Perhaps the Mayo can help
straighten all this out since the clinics are known for their superb problem solving. I share everyone's concerns and hope we can move forward in a more positive, organized manner. As for the person who said "doctors have clue how to heal autoimmune," ME/CFS sufferers ARE THE CLUES.

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The CDC has some information on ME/CFS that you might find helpful if you have not already seen it...

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome -- https://www.cdc.gov/me-cfs/index.html

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@petuniamom567

It seems a mystery to me why ME/CFS remains a mystery to doctors. The research being done is done with good intentions, however when you read it, it seems unstructured. I don't understand why there is no data base. We live in a super technical age. A data base would be a good starting point. Why not examine what we all have in common. Then, go from there as a research group. Instead, the information I read is scattered all over the place. I'm sure the physicians involved have the best of intentions, but there seems to be a lack of organization. After 40 years, I would assume this puzzling
ailment would put everyone on the same page. It hasn't. Also, jumping the long Covid bandwagon isn't going to help the ME/CFS people. Long Covid and post-Covid syndromes have definite origins. ME/CFS seems to have a mystery origin for which there is no marker. Perhaps the Mayo can help
straighten all this out since the clinics are known for their superb problem solving. I share everyone's concerns and hope we can move forward in a more positive, organized manner. As for the person who said "doctors have clue how to heal autoimmune," ME/CFS sufferers ARE THE CLUES.

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@petuniamom567 Someone mentioned this clinic at Stanford University
https://med.stanford.edu/chronicfatiguesyndrome.html
Check it out and let us know if it’s helpful!

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@becsbuddy

@petuniamom567 Someone mentioned this clinic at Stanford University
https://med.stanford.edu/chronicfatiguesyndrome.html
Check it out and let us know if it’s helpful!

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Thanks for Stanford site recommendation. Very interesting. Think everyone with ME/ CFS should read what the university says.
Might be helpful. Certainly food for thought.

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@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)

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I was 48 when a cardiologist(!!) in very small town finally ordered right labs…
Acute infectious mono ( EBV ). By that time (a year or more) I had Hashimotos Thyroiditis. Soon after, thyroid surgery.
The brain fog, deep aches, incredible fatigue continues. For about 8 years I
have been on hydrocodone 10/325. Tried many other things. No help. Regular exercise? Not much!! Three months ago started Stretch Zone ( 1/2 hr twice a week. Start very slowly or pain is worse.
I’ve been collecting info from many sources since this started. Something not working right with mitochondria,ATP MAY be a culprit PERHAPS caused by EBV. So until we know more I will take hydro and rest and sleep a lot.
That’s the very basics of my journey with this. Oh! Depression came along. Transcranial Magnetic Stimulation was a great treatment. But, no cure.
I just found this site. Glad I did 💙

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