Autoimmune Fatigue and/or Chronic Fatigue

Posted by Langold @rarelybees2889, Jan 8, 2020

Hi Wondering if anyone has been diagnosed with autoimmune fatigue and/or chronic fatigue? I was diagnosed at Mayo Clinic. I wish there was more research into both of these…

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@becsbuddy

@peach414144 Please don’t feel embarrassed for needing help. Everyone needs help at one time or another. COVID-19 has really tied up our healthcare system. Have you thought of calling the Governor’s office to express your dismay and ask if they know of options? Or your state or national representative? Through no fault of your own, you have some needs that aren’t being met.
Remember, we're all here for you!

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Yes I have the b____s to call but I do not think that much can be done at this time . So why waste the time! If the government pays people to stay home how can anything be workable. Also remember that some of the nursing staff have babies and children and elderly family that if they would worrk they might bring this dammed virus home and infect them. I am sure we all understand this. It is the virus (and the politics). As I am writing this I am listening to the radio to some uplifting music and it is working, Ahhhhh! Love and understanding to all.

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@peach414144

It certainly is getting much worse. Six days ago I saw the endochronologist and they still have not requested for the new medicine to be filled. I called last friday and all day today and they do not answer the phone. The say to leave a message which I do and am continuing to wait. I feel quilty complaining as I am sure that all the patients are going through the same process. Patience is a virtue.

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@peach414144. I cannot believe you have to go through this. Unfortunately many of us are. I really appreciate your honesty in posting this as sometimes I feel I have some mark by my name that says “take care of her last she asks too many questions”. What would happen if something terrible of a medical nature happened while you were waiting for this stuff? I am so sorry and wish there was something any of us could do to fix it. It’s over the phone so you can’t transmit any virus or anything. I had several nurses tell me that I’m doing what I have to do, asserting myself for my own healthcare or else I’d fall through the cracks. I love your upbeat attitude but wish it weren’t necessary to have to do that. Bless you and I wish I lived near you. You seem like a terrific human being! Too few of them nowadays. Please let us know if the return call comes tomorrow.

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my question. what do they do with our messages? they seem to vanish. also, some docs say that if you call more than once in 24 hours
your call won't be answered. what teachers punished them and permanently injured their brains. very strange things taking place in American medicine. relationship between patients and physicians is SICK. if you don't want to help, choose another profession. speaking with those you care for is part of the caring process. in addition, don't tell me your triage nurse is truly a nurse. it's often sounds she knows
less about the meds than i do. how much training does a CMA really get? if they knew what they were doing and understand why you were calling that might move things along. all very disheartening. good luck to us all and lets think of a way to solve the problem.

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@bustrbrwn22

@peach414144. I cannot believe you have to go through this. Unfortunately many of us are. I really appreciate your honesty in posting this as sometimes I feel I have some mark by my name that says “take care of her last she asks too many questions”. What would happen if something terrible of a medical nature happened while you were waiting for this stuff? I am so sorry and wish there was something any of us could do to fix it. It’s over the phone so you can’t transmit any virus or anything. I had several nurses tell me that I’m doing what I have to do, asserting myself for my own healthcare or else I’d fall through the cracks. I love your upbeat attitude but wish it weren’t necessary to have to do that. Bless you and I wish I lived near you. You seem like a terrific human being! Too few of them nowadays. Please let us know if the return call comes tomorrow.

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Thank you busterbrown. I am pretty upset because: After waiting four months to get a referral to Shands it is now put off for another month. Why: They had me set up to see a doctor who wants to do a cystascope procedure to see what it is (parden the bad spelling) I had originally told them that a test was already done to show the mass in the bladder and they received all the radiology results so now it should be removed and biopsied. All the records were sent to them showing about the procedure and the findings etc. AND; Will the insurance pay for another repeat procedure? So here I go waiting in pain for another month to see a different doctor there.
The second: The endochronologist changed the medication for the diabetes which was working well. Did not change the thyroid medication Not good considering the readings but he is the doctor and should know what he is doing so I go along with it.
Any which way this is a week now and the medication was not ordered. After waiting a few more days I left a message with them. I finally got a call back. It is more than a week now. The representative told me in a very sarcastic way that she did not know about this and would check into it. It took a lot for me to ignore her unacceptable attitude and it was bad believe me. I use a mail in pharmacy so by the time I would get this medication in the mail it will be about three or more weeks to receive the meds. It is a bother to write this and who needs to read this as I am sure that all in the medical field and the patients are experiencing the same. It appears I must get used to this but as I see it many people's lives are at stake here. Who knows? THE SHADOW KNOWS! ha, ha, ha, ha.

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@petuniamom567

my question. what do they do with our messages? they seem to vanish. also, some docs say that if you call more than once in 24 hours
your call won't be answered. what teachers punished them and permanently injured their brains. very strange things taking place in American medicine. relationship between patients and physicians is SICK. if you don't want to help, choose another profession. speaking with those you care for is part of the caring process. in addition, don't tell me your triage nurse is truly a nurse. it's often sounds she knows
less about the meds than i do. how much training does a CMA really get? if they knew what they were doing and understand why you were calling that might move things along. all very disheartening. good luck to us all and lets think of a way to solve the problem.

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Dear Petunia I do very much agree with you. Attitudes, attitudes and attitudes. But if one does not along with they will find a way to hurt you so one must suck it up. We are being herded like cattle. Of course I could talk more but what if one of them reads this? I must suck it up and take my rocket to the moon to try and find "The guardians of the galaxy" to straighten out this nonsense.

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The guardians of the galaxy should be the heads of the hospitals, departments, the deans, the presidents of the universities right here on earth. The question remains who's running the store.

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@peach414144

Thank you busterbrown. I am pretty upset because: After waiting four months to get a referral to Shands it is now put off for another month. Why: They had me set up to see a doctor who wants to do a cystascope procedure to see what it is (parden the bad spelling) I had originally told them that a test was already done to show the mass in the bladder and they received all the radiology results so now it should be removed and biopsied. All the records were sent to them showing about the procedure and the findings etc. AND; Will the insurance pay for another repeat procedure? So here I go waiting in pain for another month to see a different doctor there.
The second: The endochronologist changed the medication for the diabetes which was working well. Did not change the thyroid medication Not good considering the readings but he is the doctor and should know what he is doing so I go along with it.
Any which way this is a week now and the medication was not ordered. After waiting a few more days I left a message with them. I finally got a call back. It is more than a week now. The representative told me in a very sarcastic way that she did not know about this and would check into it. It took a lot for me to ignore her unacceptable attitude and it was bad believe me. I use a mail in pharmacy so by the time I would get this medication in the mail it will be about three or more weeks to receive the meds. It is a bother to write this and who needs to read this as I am sure that all in the medical field and the patients are experiencing the same. It appears I must get used to this but as I see it many people's lives are at stake here. Who knows? THE SHADOW KNOWS! ha, ha, ha, ha.

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I'm going through the same thing here in Central Florida. It seems far too many specialists I've seen do not want a complicated case, they are abrupt and are not one bit concerned that I've been suffering now for 1.5 years with no accurate diagnosis nor a game plan to remedy these symptoms. I've had several nurses be abrupt or rude to me. So uncaring. I feel I'm left to suffer or die and they are not much concerned about it.

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@joannemm30809

I'm going through the same thing here in Central Florida. It seems far too many specialists I've seen do not want a complicated case, they are abrupt and are not one bit concerned that I've been suffering now for 1.5 years with no accurate diagnosis nor a game plan to remedy these symptoms. I've had several nurses be abrupt or rude to me. So uncaring. I feel I'm left to suffer or die and they are not much concerned about it.

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Dear Joan…. I am so sorry for you especially because I am going through the same as you. I have had pain also for about three years and finally a mass was found in my urine bladder. Again, same as you no one wants to address this issue. 99% of these masses are cancer so I am pretty worried and want to take care of this now. But since finding this I am waiting months now and it has been put off again for another month, What the ? Three days ago I was diagnosed with another: hyperparathyroidism AND NOW: I went to my blood doctor (hematologist) because of my pancytopenia anemia and what was the reading: When the technicians ran the blood through their machine there was two alerts; The ANC and the GRAN# were 0.5 and 0.9. Very low. Indicating two more anemias. My time is coming soon. what will be will be but I would really (for some reason) like to know why are the reading so low? How can I work with this? They just let me go home. I guess I need to contact this doctor tomorrow. It appears as though I have two more anemias which adds up to three. Ahhhh this mind will have to stop thinking soon. When a person dies where does the ID go? I can see the body dying but it is difficult to consider that my mind will stop thinking. There is that old saying: "Let go and let god". (Good one). Love to all until the next time (hopefully) Peach

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@joannemm30809

I'm going through the same thing here in Central Florida. It seems far too many specialists I've seen do not want a complicated case, they are abrupt and are not one bit concerned that I've been suffering now for 1.5 years with no accurate diagnosis nor a game plan to remedy these symptoms. I've had several nurses be abrupt or rude to me. So uncaring. I feel I'm left to suffer or die and they are not much concerned about it.

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Go see Jonathan Kaufman MD at Emory Atlanta.

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Those who suck it up are suckers. Speaking up helps much more. At least that's what I've discovered.

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