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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@beltonite410

MS related fatigue. Adderrall is a life saver. Or Provigil.

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I’m on the generic for provigil which is modafinil. I did use the brand name for many years. I’m on 400 mg each morning. I also tried Adderrall. It just seems like no medicine makes any significant improvement. I’m glad they work for you.

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@macrdo

I can relate but have found a reg p.t. regimen that works for me. It sounds nuts to exercise when you hurt so bad but walking is best overall I have found. I thought my rheumatologist was nuts when I could hardly get off my couch and walk to the bathroom but I trusted him ( which I don't do easily) and did what he said. Went from going out door to end of grass and back then each day I would take just two more steps. Eventually I worked my way up to 3 miles one way and back. Due to other difficulties in health now I am no longer able to go that far but do in home physical therapy routine and still walk a few blocks at a time. I used to be on gabepentin at 3200 mg a day plus diladid pain meds 3-4 times a day. I started using cbd gummies. I quit it all and only have to take an aleeve here and there when have a bad flare up. I am so relieve from all muscle aches and pains. My trigger points are not in flare constantly anymore. A doctor can do only what they are aware of thru guidelines. IT IS UP TO OURSELVES to find out what works best. I am now only on my med for chemical imbalance and vit d3 in winter as don't do much outside then so don't get enough sunlight. Just so others know I also suffer with Ehlers Danlos Hypermobility. Interstitial Cystitis, Artificial Hip, Chronic Fatigue, Fibromyalgia, due to EDS have had 3 back surgeries, neck surgery with plate and screws, and shoulder anchor put in. P.t. has been a life saver for me. I have been doing this for years and any time I stop for more than two weeks I start getting weak again and pain and flares start back up. God made our bodies to move not be sedentary. The food we eat is a big factor also. All the quick convenient foods today are JUNK. Get back to the basics of fruits and veggies with little meat. Stay away from the sugar and refined processed foods. We all want a magic pill to cure us--- it's not that simple and honestly they are actually more harm than good. Just put more toxins in TBE body that we have to try to fight off. Hope this helps someone get to a better place in living !!

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That is great! I started some pt too. I had to start at a very low level. I could not do anything like I used to do.
Unfortunately the extreme fatigue never changed for me.

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I got CFS last August 2022. two week after the 3 rd booster. I am dizzy all the time, sleep 9pm-9am and take two your naps some day. Always feel tired with brain fog. I take many supplements with no help. I am against scripts from pharmacy. Eating veggies, fruits chicken, lamb and fish. Salads daily. Would love someone to talk to.

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@zen9

I got CFS last August 2022. two week after the 3 rd booster. I am dizzy all the time, sleep 9pm-9am and take two your naps some day. Always feel tired with brain fog. I take many supplements with no help. I am against scripts from pharmacy. Eating veggies, fruits chicken, lamb and fish. Salads daily. Would love someone to talk to.

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Sadly, there seems to be nothing out there that actually helps with CFS. I've had it for many years. A few years ago I developed extreme weakness along with it; so weak that my knees buckle and I have no choice but to lie down. *The minute I wake up in the mornings, I take a green tea capsule. No miracles, but it really does help me to get moving. Usually last 3-4 hours. Many days I have to take another in early afternoon. I also take Modafinil for daytime sleepiness. The wonderful plus to it is that it helps my depression! I have tried every kind of anti-depression medication, and my body will not tolerate any of them, so this was a bonus blessing. I wish you the best in dealing with this.

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i am a male 79 years old and i am trying to find out what disease i have with the symptoms that i have and having many blood tests and many mri and xrays and on and on for over two years and doctors (6) tell me that all the tests show normal for all organs in my body......for over two years i have dry itchy skin, mood swings, joint pain and stiffness, hair loss, brain fog, 24 hour fatigue with zero energy, huge unexplained weight gain, and breast and under arm enlargement and one doctor even sent me the results of some test where at 11pm i took a little pill and had to be at clinic to have blood test at 8am the next morning and that result negative for whatever he was checking and in his report on the test he ended by wishing me luck in finding out what was causing all these symptoms and what has happened to my life as i had a business in which i could not function because of the 100 percent fatigue and weakness ....so...does anybody have any ideas? oh yes, none of these doctors which are heart, brain, stomach, endocrine, vein doctors have even tried to treat these symptoms nor any way try to heal me as if the machine dont tell them what is wrong they just simply do nothing and so where does that leave me.....thank you...jim

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@tigertotheend

i am a male 79 years old and i am trying to find out what disease i have with the symptoms that i have and having many blood tests and many mri and xrays and on and on for over two years and doctors (6) tell me that all the tests show normal for all organs in my body......for over two years i have dry itchy skin, mood swings, joint pain and stiffness, hair loss, brain fog, 24 hour fatigue with zero energy, huge unexplained weight gain, and breast and under arm enlargement and one doctor even sent me the results of some test where at 11pm i took a little pill and had to be at clinic to have blood test at 8am the next morning and that result negative for whatever he was checking and in his report on the test he ended by wishing me luck in finding out what was causing all these symptoms and what has happened to my life as i had a business in which i could not function because of the 100 percent fatigue and weakness ....so...does anybody have any ideas? oh yes, none of these doctors which are heart, brain, stomach, endocrine, vein doctors have even tried to treat these symptoms nor any way try to heal me as if the machine dont tell them what is wrong they just simply do nothing and so where does that leave me.....thank you...jim

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Bless you. I am so sorry. The medical field has changed a lot since COVID. I think doctors and nurses are burnt out to be honest. Not to mention, short staffed.

A friend of mine has severe fatigue from having chronic fatigue syndrome & narcolepsy. She was put on prescription Xywav and it has helped give her more energy during the day. It has given her a lot of her life back.

Some things come to mind if I may ask?

1) Have you had all of your thyroid levels checked? TSH, T3 , T4 and Thyroid antibodies and antiglobulin? I had to go to an endocrinologist. My Hashimotos (Hypothyroidism) did not show up in the TSH, T3 & T4, but did in the other test. Hair loss, dry skin, joint pain and fatigue and a lot of the other symptoms you describe can go along with Thyroid Disease

2) Have you had COVID? It can cause hair loss, fatigue & brain fog. Long COVID can cause these symptoms to continue.

3) Have you had all of your hormone levels checked? Cortisol level? An endocrinologist can do this.

4) Have you had all your levels checked for autoimmune diseases? A Rheumatologist or some primary doctors will do this. Have you had your B12 & D3 level checked? These being low can cause joint pain and fatigue. Your primary doctor can check these.

5) Fibromyalgia & Chronic Fatigue Syndrome tend to go hand 'n hand. I have both. A lot of the symptoms you describe fit under these two. They are hard to get a diagnosis on because there is no test for them. They can only do tests to rule out MS, Rheumatoid Arthritis & Lupus. They palpate all the trigger points to see if you are tender/painful in those areas. Your primary doctor could run a sed. rate to rule out the 3 mentioned autoimmune diseases.

Sometimes you have to be a little assertive and say something like, "Do you think I could have an autoimmune disease?" "Can we do a complete panel and check for it please?"

I know how frustrating this can be. Don't give up. Praying for you to feel better and get a diagnosis and get treated.

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@covidstinks2023

Bless you. I am so sorry. The medical field has changed a lot since COVID. I think doctors and nurses are burnt out to be honest. Not to mention, short staffed.

A friend of mine has severe fatigue from having chronic fatigue syndrome & narcolepsy. She was put on prescription Xywav and it has helped give her more energy during the day. It has given her a lot of her life back.

Some things come to mind if I may ask?

1) Have you had all of your thyroid levels checked? TSH, T3 , T4 and Thyroid antibodies and antiglobulin? I had to go to an endocrinologist. My Hashimotos (Hypothyroidism) did not show up in the TSH, T3 & T4, but did in the other test. Hair loss, dry skin, joint pain and fatigue and a lot of the other symptoms you describe can go along with Thyroid Disease

2) Have you had COVID? It can cause hair loss, fatigue & brain fog. Long COVID can cause these symptoms to continue.

3) Have you had all of your hormone levels checked? Cortisol level? An endocrinologist can do this.

4) Have you had all your levels checked for autoimmune diseases? A Rheumatologist or some primary doctors will do this. Have you had your B12 & D3 level checked? These being low can cause joint pain and fatigue. Your primary doctor can check these.

5) Fibromyalgia & Chronic Fatigue Syndrome tend to go hand 'n hand. I have both. A lot of the symptoms you describe fit under these two. They are hard to get a diagnosis on because there is no test for them. They can only do tests to rule out MS, Rheumatoid Arthritis & Lupus. They palpate all the trigger points to see if you are tender/painful in those areas. Your primary doctor could run a sed. rate to rule out the 3 mentioned autoimmune diseases.

Sometimes you have to be a little assertive and say something like, "Do you think I could have an autoimmune disease?" "Can we do a complete panel and check for it please?"

I know how frustrating this can be. Don't give up. Praying for you to feel better and get a diagnosis and get treated.

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the thyroid tests were run 3 different times by 3 different doctors and all the checks come back normal....i have been hammering these so called doctors for two years now and they just dont get it.....i asked them to treat the symptoms and they all refuse....i asked them many times to check the auto immune and they said they have and all is normal and i asked all of them to check anything that could cause these symptoms....they all say if the tests dont show then they will not treat.....and my life is slowly going down the drain as it is daily inching down but they just dont care as i talk to them....so...i will start the cycle over for the 5th time with getting a new primary doctor that maybe will do something...but...i am beginning to think that since i did not have these symptoms before i took the two covid shots that might be the cause of some of this and i brought this to my heart doctor and my endocrine doctor and they laughed at me....yep....sure did.....the other questions i will write down and try to put them before the primary doctor when i get another one which i will try next week....so thanks for the help and i will back in touch....jim

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@tigertotheend

the thyroid tests were run 3 different times by 3 different doctors and all the checks come back normal....i have been hammering these so called doctors for two years now and they just dont get it.....i asked them to treat the symptoms and they all refuse....i asked them many times to check the auto immune and they said they have and all is normal and i asked all of them to check anything that could cause these symptoms....they all say if the tests dont show then they will not treat.....and my life is slowly going down the drain as it is daily inching down but they just dont care as i talk to them....so...i will start the cycle over for the 5th time with getting a new primary doctor that maybe will do something...but...i am beginning to think that since i did not have these symptoms before i took the two covid shots that might be the cause of some of this and i brought this to my heart doctor and my endocrine doctor and they laughed at me....yep....sure did.....the other questions i will write down and try to put them before the primary doctor when i get another one which i will try next week....so thanks for the help and i will back in touch....jim

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@tigertotheend. Sounds like you’re having a terrible time with local doctors! Can I suggest that you try a comprehensive medical center or a university teaching hospital. The doctors seem to be 1 step ahead of most community doctors. Or Mayo Clinic has a group of country-wide hospitals. You can try going to one of them also, no referral needed. This website gives the locations of the hospitals.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Have you considered Long Covid? Do you have a Long Covid center in your area?

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Hi, @sundance6 Haven’t heard from you in a while! I thought that maybe you were doing great, but I guess not.
Here is the information from Mayo Clinic about ME/CFS.
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
When you see your PCP, you might ask if any hospital in your state has a program or clinic for ME/CFS. Mayo Clinic now has one, so others may, also.
What do you hope your doctor can do for you and CFS?

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@tigertotheend

the thyroid tests were run 3 different times by 3 different doctors and all the checks come back normal....i have been hammering these so called doctors for two years now and they just dont get it.....i asked them to treat the symptoms and they all refuse....i asked them many times to check the auto immune and they said they have and all is normal and i asked all of them to check anything that could cause these symptoms....they all say if the tests dont show then they will not treat.....and my life is slowly going down the drain as it is daily inching down but they just dont care as i talk to them....so...i will start the cycle over for the 5th time with getting a new primary doctor that maybe will do something...but...i am beginning to think that since i did not have these symptoms before i took the two covid shots that might be the cause of some of this and i brought this to my heart doctor and my endocrine doctor and they laughed at me....yep....sure did.....the other questions i will write down and try to put them before the primary doctor when i get another one which i will try next week....so thanks for the help and i will back in touch....jim

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Sounds like you possibly may have what is called vaccine injury. Have you tried going to an Integrative Medicine Doctor (Eastern Medicine)? They think outside the box. That's who I had to go to and get treated for Long Covid. I am on many vitamins and am finally seeing some results. It's been 2 years. Several folks have listed their vaccine injury on her and the side effects. Many doctors are not versed in acknowledging this nor how to treat it. It's new to them.
I will try and find the vaccine injury comments and the side effects for you posted on this wonderful website.

Bless you and I will continue to pray for you. Keep me posted please.

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