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Long haul Covid Symptoms

S

SRcombs

Peer Supporter
OK, so I'm going to preface this story with that I'm aware I'm going to sound like a conspiracy theorist, but here is what I've been going through. I overcame a diagnosis of Fibromyalgia with help from TMS wiki and the Curable app a couple of years ago. In Jan 2021 I contracted Covid. Had a fairly mild case. No major respiratory problems, just a lot of fatigue and sore eyes. Took me about till April before I really started feeling myself again however. Then in June I got my first dose of the vaccine, the very next day two things happened. I started having excruiating pain running down my left arm and my sense of smell became weird. Since the arm pain was the biggest thing, I'll discuss that first. By day two of the pain I was getting scared so my husband took me to the emergency room where they told me I'd pulled a muscle and gave me steriod shots. Didn't help one bit. I suffered for two more weeks with no sleep (it seemed to get worse at night) when my Chiro suggested I go get an MRI. The only way I could even go to work was by taking hydrocodone. Long story short, the MRI showed that I had a ruptured disk and that the disk itself had slid into the spinal canal and was pushing on my spinal cord, hence the excruiating pain. Surgeon rearranged his schedule to get me in quickly. Had surgery June 14th and it was 100% successful. Woke up from surgery with just a sore neck but no pain radiating down the arm. Now, on to the second thing. My taste. I kept noticing that more and more things tasted weird/wrong. I would think things were spoiled and have my husband taste them only to have him tell me they were fine. Everything started to smell bad. Soap, shampoo, perfume, flowers, food cooking. EVERYTHING! I then had my second Covid shot and it got considerably worse. To the point that the only things that really taste/smell good now are grapes, cherries, cheese, vanilla ice-cream, bread and butter and A & W rootbeer (must be A & W, all other brands are foul) Found out I have something called Parosmia, which is a distortion of your taste and smell. The the theory being that Covid damaged my olfactory nerves (which makes no sense to me since my smell and taste were fine for months after Covid and then went south after the vaccine). Then 2 weeks after the 2nd shot I started having numbness/burning in my feet and legs. Called my surgeon. He said it coulddn't be from the neck surgery. Have now seen a neurologist who believes it might be periphial neuropathy. Supposed to have some nerve tests in two weeks.

Here's where the conspiracy theory part comes in. I think the shots did this to me. I think it gave me long haul. I want to NOT believe it. To believe this is all TMS brought on by the stress of the last two years, but I can't convince myself of it. There are no real tests to run for long-haulers. I know Nicole Sachs did a whole podcast on long-haulers and I've listened to it multiple times, but I'm still not sure that I don't have something seriously wrong with me and that it was brought on by the vaccine.

Someone help give me some perspective. I feel like I won't be able to move on with my TMS beliefs until this is addressed and I can convince my brain that I haven't been damaged somehow by the vaccines.

Thank you
 
SRcombs

Reading your story, I can see your confusion. There are indications some/all of your symptoms are mind-body, and others that they might be related to Covid infection and or vaccine injury.

Neuropathy, pain, strange smells --I think all your symptoms can certainly be TMS, once obvious underlying physical causes have been eliminated.

I have no personal experience here, but would suggest you treat this as mind-body and go the TMS route, or treat as Covid and vaccine injury to see if treatments do any good, and if the treatments make no difference, take on a strictly TMS approach.

In the TMS approach, I wonder what might need to be "worked on" or what stressors or triggers you might be aware of. You no doubt learned a huge amount regarding self-treatment already. What else wants to be seen, understood, held in your life since your successful, initial work?

Here are a couple of "treatment" ideas:
https://covid19criticalcare.com/wp-...-Protocol-for-Long-Haul-COVID-19-Syndrome.pdf

There is also Bruce Pattersons work for treatment of long covid and vaccine injury.

Andy
 
Unfortunately, I have been through the above Covid Long haulers protocol and it has not helped. But everything I've read about nerve damage, especially to the olfactory nerves, says it is slow healing. Could take a year or two. I'm going to have a ENG in a couple of weeks to test nerve function. If it comes back that there is no nerve damage I'm going to treat as TMS. I guess it's just difficult because we still know so little about the long-term effects of Covid and the vaccines and I have a feeling we will not know for several years. It's just frustrating. I've been to an ENT about the smell issue and they say that currently the only treatment that shows any promise is smell training, which I've been doing all this time, but even with that it is slow going.

I will look up Bruce Patterson's work on Long haul. Have not seen his stuff.

Thank you for your encouragement.
 
I'm glad you're working through this, a piece at a time. I think it is all you can reasonably do.

Dr. Been who has done a lot of work on this, including treatment, mentions two things: most long-haul symptoms do seem to resolve over time, and also there is a CoQ10 treatment for loss of smell, but I'm not sure the protocol...

We know stress, worry, fear, catastrophic thinking, future thinking ---all elements which are common, don't help symptoms. So working on your basic TMS approach--maybe cultivating a sense of safety, doing things you want to do, clearing relationships, allowing pleasure, connection, mindfulness, etc. in the meantime can only be helpful, even it you're not completely in the TMS camp on this. The phrase "I don't know anything about that" might help when you're future thinking or worked up.

Good luck in this!
 
Here is an article finding improvement with long-Covid using vagus nerve stimulation. This intervention points toward the "psychological" as an underlying cause of long-Covid. Importantly, the subjects found improvement in symptoms without the inflammatory markers changing... So here we have "physical" conditions not changing, but symptoms changing. The Polyvagal theory posits the sense of safety, down regulation of survival cascade by vagal nerve is helpful in all kinds of wellbeing and symptom treatments.

https://emrespublisher.com/open-acc...-long-covid-syndrome-a-pilot-study-100011.pdf
 
SR, Please keep us posted on how you are managing. I did not get CV but have had many of the physical symptoms on two occasions prior to the vaccine, (although most were mild), and I know that I am very prone to 'feeling your pain' so to speak. I also recognize that the last two + years have been purgatorial (if there is such a word), at best. I have had two sisters die (not from CV), plus have been isolating from most people as well. Adding to that, my pets (cat and dog) are very aged and unwell. . .veterinarians are a big part of my life of late.
I did get the vaccines & booster......very little reaction.. .just a mild reaction on the 2nd dose. But, my granddaughter had bad reaction......she was/is a hospice nurse. She recovered though. I have been told by a nurse (who was giving me a CV jab) that many in the medical community have noted that when someone has a bad reaction to the vaccines that it is believed that that person has already had CV! Every one of us has a story . . .for me, I just try to carry on. .'one day at a time' so to speak, recognize my own proclivity to 'feel the pain' and go from there.
 
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