Multiple Autoimmune Diseases & Post Covid

Posted by mamafluh @mamafluh, Jan 7 10:34am

Has anyone else been having pain levels of 8-12 not normal. Things in pain, cognitive, insomnia, nerve issues, etc since having Covid?

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@adlttl123

Ellen I am so sorry that you are in so much pain. I totally understand I have the whole ball of wax..I have the complete pelvic floor problem and it has become almost impossible to function some days. Are you having robotic surgery or regular surgery. I’m not sure that robotic is the right term.

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Hi sounds like your doing exercises to help. I’m having surgery will cut me on tummy pull rectum up n tack down. He tried yo-yo insert it but fell back out and so did ER SO SURGERY ANSWER JUST LONG WAIT DUE TO PANDEMIC n they were not allowed to do surgery till 3 weeks ago. My son in law install bidet to keep organ clean sensative to touch n using tins baby wipes it bleed a lot. Why don’t you have surgery? Pain is terrible esp when I have to have bm. Taking miralx to keep soft n better. Diet simple. On bed rest. Thank you for writing, can write again. Ellen

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@ellen307

Hi sounds like your doing exercises to help. I’m having surgery will cut me on tummy pull rectum up n tack down. He tried yo-yo insert it but fell back out and so did ER SO SURGERY ANSWER JUST LONG WAIT DUE TO PANDEMIC n they were not allowed to do surgery till 3 weeks ago. My son in law install bidet to keep organ clean sensative to touch n using tins baby wipes it bleed a lot. Why don’t you have surgery? Pain is terrible esp when I have to have bm. Taking miralx to keep soft n better. Diet simple. On bed rest. Thank you for writing, can write again. Ellen

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I went in for the “big” surgery, pelvic floor, in 2015 and the surgeon perforated my colon and it took three surgeons all day to save my life and I ended up in a stoma bag. It was a shocking and painful experience. I have had some bad surgeries but nothing to compare to that. So I have been emotionally and physically healing from all that. I’m blessed because 4 1/2 months later I was able to have a reversal but the prep for that is not for sissies. What is the day, ‘what doesn’t kill us will make us stronger!’ Lol.

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@adlttl123

I went in for the “big” surgery, pelvic floor, in 2015 and the surgeon perforated my colon and it took three surgeons all day to save my life and I ended up in a stoma bag. It was a shocking and painful experience. I have had some bad surgeries but nothing to compare to that. So I have been emotionally and physically healing from all that. I’m blessed because 4 1/2 months later I was able to have a reversal but the prep for that is not for sissies. What is the day, ‘what doesn’t kill us will make us stronger!’ Lol.

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How sad I pray my surgery will go better got my date today April 6th. A 3 hr surgery.
He will cut me n staple end of long intestine hope n pray I will be ok in the end pray I will

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@ellen307

How sad I pray my surgery will go better got my date today April 6th. A 3 hr surgery.
He will cut me n staple end of long intestine hope n pray I will be ok in the end pray I will

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Keep in touch and I will pray you through it. I am fine I healed well from all of it. We just have to do what we have to do. My surgery should not have gone that badly it was because of the surgeon. Please keep in touch. Diane. 🙏🏻🙏🏻🙏🏻

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@shack76

I have a completely different set but I'm up to four; Graves, Celiacs, (I can't remember name of the being skin disorder it start with a V…I don't have a bad case) most recently achalasia. The issue I'm currently dealing with is I've had some sort of reaction do the surgery from achalasia that is effects my nerves. It was worsened by the Covid Vaccinations. It's very difficult to find doctors who will look at the whole pitchure.
To be completely transparent I tried going to Rochester in October and the doctors I dealt with were not interested. And I got no explanation. I don't even know why the place gives patients doctors email addresses through the portal because they don't answer. My experience at Mayo was awful and I would never suggest anyone go there for anything as complex as multiple autoimmune syndrome. The doctors I dealt with seemed to believe drawing electronic records replaces talking to patients. Some of the records they drew on me were wrong (Mistake in electronic records are not uncommon .Jow much I don't know, but the evidence from the clinic notes they wrote on the portal was clear that some of the records were incorrect) and because they didn't want to listen to us, they didn't understand the context of others diagnosis. In the end they gave me some advise that would have been dangerous. All I left was a large bill and little in the way of help. I probably started in the wrong department was never giving the chance to see anyone outside the department. Just what was set up in advance.
I hope this is not standard practice for the greatest hospital in the world (I'll never be back to find out) but what I experienced was complete assembling medicine. This completely the wrong approach for anyone dealing with a complex diagnosis. Drawing electronic records and cutting edge technology does not replace talking to your patient. They didn't even give me an appointment after they finished the testing, just a short phone call with Fellow.
These kind of experiences ruin patients trust in medicine and make it harder to go back to doctors.
My mistake was not researching the place before I went to Minnesota. If I had I would have stayed away. It looks like the University of Washington's Medical Center could be better, in the meantime there is a neurological pain specialist close to me worth trying.

Philip

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Hi Philip. I just joined this site a minute ago and yours is the first thing I've read.
I'm sorry you had that experience. Some doctors don't realize that the size of their ego matters. In my case it is the neurologist who have outgrown their britches. I've seen many over the last 20 years and I've never been so categorically dismissed by any other group of people. After my last attempt to meet one ended with me crying in my car for over an hour before I felt well enough to drive home, I have taken a break from doctors. That was about 18 months ago.
So I've been out of my meds for about 6 months now and the SSA wants to schedule a disability progress review and I've moved to another state…so I've managed to get backed into a corner due to the anxiety I get from having to rely on the mercy of a medical professional who would probably rather be my coroner.
The insurance regards neuros as MS Specialists but almost all that I have been referred to specialized in geriatric sleep disorders and their knowledge of current Multiple Sclerosis treatments couldn't fill a thimble.
I hope you find a doctor that respects you and respects your wishes regarding treatment over his own personal prejudices.
Sometimes, no matter how educated your doctor is, the patient actually has a better understanding of what works for themselves. Especially when they live with a chronic condition. Some doctors will lie straight to your face instead of admitting that they won't prescribe you something because they think you look like you will abuse it. Better to know in the very beginning that they think you are unworthy of their time.
Really they have no business treating patients this way. If they don't respect me as a person then respect my diagnosis and deny me nothing that is routinely used and indicated for my disease.
And my first contribution on this site probably violated something so it may also be my last.
Good luck to you with your search.
Laurie

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@scabonmybrain

Hi Philip. I just joined this site a minute ago and yours is the first thing I've read.
I'm sorry you had that experience. Some doctors don't realize that the size of their ego matters. In my case it is the neurologist who have outgrown their britches. I've seen many over the last 20 years and I've never been so categorically dismissed by any other group of people. After my last attempt to meet one ended with me crying in my car for over an hour before I felt well enough to drive home, I have taken a break from doctors. That was about 18 months ago.
So I've been out of my meds for about 6 months now and the SSA wants to schedule a disability progress review and I've moved to another state…so I've managed to get backed into a corner due to the anxiety I get from having to rely on the mercy of a medical professional who would probably rather be my coroner.
The insurance regards neuros as MS Specialists but almost all that I have been referred to specialized in geriatric sleep disorders and their knowledge of current Multiple Sclerosis treatments couldn't fill a thimble.
I hope you find a doctor that respects you and respects your wishes regarding treatment over his own personal prejudices.
Sometimes, no matter how educated your doctor is, the patient actually has a better understanding of what works for themselves. Especially when they live with a chronic condition. Some doctors will lie straight to your face instead of admitting that they won't prescribe you something because they think you look like you will abuse it. Better to know in the very beginning that they think you are unworthy of their time.
Really they have no business treating patients this way. If they don't respect me as a person then respect my diagnosis and deny me nothing that is routinely used and indicated for my disease.
And my first contribution on this site probably violated something so it may also be my last.
Good luck to you with your search.
Laurie

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Hi Laurie, welcome. Do you live with multiple sclerosis?

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@becsbuddy

Good morning @mamafluh and welcome to Mayo Clinic Connect. I’m sorry you’re still dealing with covid-19 and the after effects. Many folks continue to have problems. There are a couple of discussions you may want to read through to see how other people have coped. You can also e-meet other members who may be able to answer your specific questions.
https://connect.mayoclinic.org/group/post-covid-recovery-covid-19/
You said you’re also experiencing multiple autoimmune diseases. May i ask what they are?

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My first try at participation in this chat. No, I do not claim official diagnosis of autoimmune disease due to Covid. What I am trying to learn: is there a connection to my covid19 Pfizer vaccine and subsequent diagnosis approx two months later with CHF and severe anemia for which I required hospitalization. Furthermore, after treatment which included two IV infusions of iron, my blood labs rebounded but now have taken another nose dive. This is all despite a complete worrkup by gastroenterology which showed no GI bleeding and nephrology which showed my lab readings had returned to near normal. I am an octogenarian who has never had this anemia problem before.

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@yoz – This must be very unsettling to have CHF and severe anemia pop up out of nowhere!
It’s reassuring that you don’t have evidence of GI bleeding.
I think you should consider seeing a hematologist next. A hematologist can pinpoint why you are anemic.
Even though we don’t know all side effects of the Covid vaccine, I’m suspicious that the vaccine triggered an immune reaction. I

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@yoz

My first try at participation in this chat. No, I do not claim official diagnosis of autoimmune disease due to Covid. What I am trying to learn: is there a connection to my covid19 Pfizer vaccine and subsequent diagnosis approx two months later with CHF and severe anemia for which I required hospitalization. Furthermore, after treatment which included two IV infusions of iron, my blood labs rebounded but now have taken another nose dive. This is all despite a complete worrkup by gastroenterology which showed no GI bleeding and nephrology which showed my lab readings had returned to near normal. I am an octogenarian who has never had this anemia problem before.

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@yoz, you may wish to connect with other members in this related discussion about vaccination and anemia:
– Iron Depletion in Blood related to COVID? https://connect.mayoclinic.org/discussion/iron-depletion-in-blood-and-covid-vaccine/

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@shack76

I have a completely different set but I'm up to four; Graves, Celiacs, (I can't remember name of the being skin disorder it start with a V…I don't have a bad case) most recently achalasia. The issue I'm currently dealing with is I've had some sort of reaction do the surgery from achalasia that is effects my nerves. It was worsened by the Covid Vaccinations. It's very difficult to find doctors who will look at the whole pitchure.
To be completely transparent I tried going to Rochester in October and the doctors I dealt with were not interested. And I got no explanation. I don't even know why the place gives patients doctors email addresses through the portal because they don't answer. My experience at Mayo was awful and I would never suggest anyone go there for anything as complex as multiple autoimmune syndrome. The doctors I dealt with seemed to believe drawing electronic records replaces talking to patients. Some of the records they drew on me were wrong (Mistake in electronic records are not uncommon .Jow much I don't know, but the evidence from the clinic notes they wrote on the portal was clear that some of the records were incorrect) and because they didn't want to listen to us, they didn't understand the context of others diagnosis. In the end they gave me some advise that would have been dangerous. All I left was a large bill and little in the way of help. I probably started in the wrong department was never giving the chance to see anyone outside the department. Just what was set up in advance.
I hope this is not standard practice for the greatest hospital in the world (I'll never be back to find out) but what I experienced was complete assembling medicine. This completely the wrong approach for anyone dealing with a complex diagnosis. Drawing electronic records and cutting edge technology does not replace talking to your patient. They didn't even give me an appointment after they finished the testing, just a short phone call with Fellow.
These kind of experiences ruin patients trust in medicine and make it harder to go back to doctors.
My mistake was not researching the place before I went to Minnesota. If I had I would have stayed away. It looks like the University of Washington's Medical Center could be better, in the meantime there is a neurological pain specialist close to me worth trying.

Philip

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Hi Phillip, I just saw your post and I’m curious about what was done for the achalasia? I was just dx along with severe malabsorption with 50lb weight loss since February.
I have horrible, chronic chest pain all the way round. I’m good as long as I don’t eat or drink, lol.

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@cheryl46

Hi Phillip, I just saw your post and I’m curious about what was done for the achalasia? I was just dx along with severe malabsorption with 50lb weight loss since February.
I have horrible, chronic chest pain all the way round. I’m good as long as I don’t eat or drink, lol.

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Welcome @cheryl46, I'm not sure @shack76 is still following Connect so I thought I would jump in case he doesn't see your reply. There is another discussion on achalasia mentioning weight loss that I think you might find helpful reading what others have shared.

Achalasia type 111: https://connect.mayoclinic.org/discussion/achalasia-type-111/

You might also find the following article helpful — " Achalasia can cause considerable weight loss and malnutrition. People with achalasia …" — Achalasia: A Disorder of the Esophagus: https://my.clevelandclinic.org/health/diseases/17534-achalasia

Have you looked into any specific treatments?

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I’m on Levbid ER bid with no success. GI doctor mentioned Botox but I haven’t found that to be very successful.
Achalasia probably has caused some weight loss but I’m also battling with pancreatic insufficiency (malabsorption). I’m taking Creon with meals and snacks which has slowed down everything going thru me but it’s a catch 22 because when I eat I have severe pain in chest, back, Luq and Ruq pain.🤷‍♀️
It will be a year next month since I had Covid but it seems every couple of weeks I add new symptoms.
I’m seriously thinking about traveling to Mayo and get 2nd opinion.

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