PLEASE share what helps for severe anxiety & burning skin feeling

Posted by summerof42 @summerof42, Sep 24, 2023

Suffering now for 3 yrs now. Every week brings on an unbearable new symptom. I just can't go on like this. I can't get any help from the numerous doctors and specialists I've seen, to include Mayo. My 40+ symptoms and pain are unbea

Like many of us, I was such a very, very healthy and active person pre-covid. I hate this beast that has robbed me of my life. Why would anyone create such a horrible virus and weapon. I worked so hard in saving for retirement and looked so forward to that day. I want my life back. rable.

As I type, I am experiencing. indescribable and so such painful burning sensations of my skin everywhere along with nerve pain. On a scale of 1-10. . . and 20! This includes pain even in my eyes.

My anxiety is off the charts which I have never experienced in my life, pre-covid. I can't even lay down and close my eyes to rests because the min my eyes close, I'm jolted into what feels like a "fight or flight" mode which I'm in 24/7.

Please, if anyone on this forum has the same terrible symptoms and found relief, please chime in for support. I'm pacing around the house due to the pain, I can't lay down, it's worse and I just want to scream.

Every day, all day I pray to our Dearest Lord Jesus for help. Being alone and so scared doesn't help.

Why is it most everyone in the world gets covid, some even 2+ times and recovers fine, and we're suffering so? I wasn't vaccinated, but I know others that weren't as well, and they recovered.

I keep thinking, "if I only had been vaccinated, I wouldn't be living in such torment. or when I had covid if I had received the monoclonal antibodies, but my doctor would order it and told me I would be fine. Wrong!

I'm in such agonizing pain and down to 89 lbs now and no help anywhere.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

covidstinks2023 | @covidstinks2023 | Oct 4, 2023

Just a thought....Fibromyalgia causes you to burn as well.

2tnt | @2tnt | Oct 4, 2023

I am receiving treatment and it is working. https://medhelpclinics.com/service/long-covid-clinic

knoyes01 | @knoyes01 | Jun 2 8:44pm

In reply to @2tnt "I am receiving treatment and it is working. https://medhelpclinics.com/service/long-covid-clinic" + (show)

May I ask what kind of treatment and how long before it started to work?

2tnt | @2tnt | Jun 2 9:38pm

Triple therapy. 2 blood thinner s and one anti platelet. Did it for 5 months. I just added cromolyn which has been helping with mscas which helps lessen the vertigo and burning sensations.

j77 | @j77 | Jun 2 10:56pm

Have you tried Cymbalta yet?A girl from another support site used it and she was in so much unbearable pain she could not walk any longer.She said since it alters the way your brain perceives pain and she is 100 percent better now and her walking is perfect.I am thinking about trying it.That is exactly what is going on with me.I can barely walk.My muscles are in so much pain and I just don't have the strength in my core,back,shoulders,etc.You would think I have severe arthritis or scoliosis,but doctors can't find anything.Since covid attacks everything including the brain who knows what it does.I guess you just have to try things to see if it works..Cymbalta is usually used for Fibromyalgia and chronic fatigue,but I believe covid can bring these on and if reactivated epstein barr in you that can bring on chronic fatigue symptoms.I believe chronic fatigue and Fibromyalgia are very really diseases,but I think they are brought on by undiagnosed infections and autoimmune diseases.The Doctors will not be able to help because alot of covid symptoms don't show up on alot of conventional tests.Your painful eyes might be Sjogren's.I have the same thing,but I will have to go to a Sjogren's specialist.Sjogrens can be hard for even a Rhuematologist to detect.I was healthy too and exercised all the time.I don't understand why the healthiest people got it the worse.Also I am not sure if you have lost so much weight because of pain or not actually being able to eat,but I could not eat at the beginning of my symptoms because the muscles in my throat would not work.I am 5'11 and was barely over 100 pounds.My primary thought to give me steroids which gave me the strength to eat again.

cjm58 | @cjm58 | Jun 3 2:58pm

In reply to @summerof42 "Thank you laurasn. I'm sorry to hear about your lung disease. Truly, don't you get so..." + (show)

@summerof42

Thank you laurasn. I'm sorry to hear about your lung disease. Truly, don't you get so angry at times over this virus that was created and robbed us of our life?

Thank you so much Brenda for your prayers.

Every week is another nightmare. Last week I developed a cold sore and I am 68 yrs young and have never had a cold sore in my life.

This week I have Oral Candidiasis and tongue is all coated and sore to include my esophagus, so I'm sure it spreat further since I noted the coated tongue when I went to see a new PCP (praying he could help) months ago and also showed him the red spot in back of my throat with the white/creamy center. He was of not help, wouldn't really say much other than its probably just a tonsil stone. Wrong! At the end of the appt he said I don't believe in Long Covid and it's just anxiety. OMG! Now, here I am left w/o a good PCP. Not to mention, I live in WI and he's in IL, but I was willing to travel if it meant good care and treat.

When I told him about my constant stomach and flank pain he said go see a GI specialist. I told him I've gone that route, tested extensively with Ultra sounds, CT scan and MRI all to no avail, even a HIDA scan of my gallbladder. GI wants me to do a CT scan (yes, let's swallow more radiation, which I did so many times, not to mention the HIDA scan and MRI dyes, etc) and wants me to get a colonoscopy. I told him I'M DOWN TO 89 LBS NOW and the prep for the colonoscopy and weight loss would make me collapse. He doesn't care.

I reached out to him regarding the oral thrush and he said I would have to come into the office, even though I sent him very clear pics, but' I'm too ill to even leave the house at this point. My internal trembling in my chest, pain, etc has now taken a toll. I'm sure given the extreme weight loss has damaged my organs as well.

All because I could not get any doctors to listen to me for 3 yrs. I love life so much and this is all so hard. I really wanted to enjoy my retirement years. Last night my skin was on FIRE along with pain. I took Benadryl which helps a very tiny bit. If I call 911 the hospital won't know what to do and just send me home. Not to mention with the new Covid variant spreading like mad, the hospital is the last place we want to go!

Hugs

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I'm so sorry to hear this - it must be just awful for you.
Covid is real - guidelines for diagnosing long covid were recently released (heard about MD on long covid podcast)- so docs use patient symptoms to classify long covid (there are 10 + different diagnoses!) one of mine is "long covid 19 - dyspnea on exertion" and I have a separate one for blood pressure..
This doc created the app "VISIBLE" - track symptoms - show provider.

*** disclaimer - I'm not a healthcare provider - everything below is my long covid story - what I have learned over the past 2 years, and how my docs have been treating me...

Being asked to go in for an office visit in your situation seems unreasonable. - Do they do telehealth visits?- you sent pictures, and told them you are too ill to leave the house. One option would be to send written/email messages to them, describing symptoms, too ill to leave house for office visit, plus pics.

Is urgent care/immediate care available? Some do telehealth visits.

What I've learned/ my treatment over the past 2 years. Covid symptoms are related to the inflammation from the virus.

Pulmonologist said shortness of breath was bc the virus had triggered severe GERD (can cause cough and shortness of breath) and nausea.
He prescribed: albuterol inhaler (initially I used it every day, then as needed), and advair inhaler (for lung inflammation)
My primary doc put me on omeprazole and famotidine for GERD, and ondansetron for nausea (dissolvable tablet).
I also went to physical therapy to strengthen breathing muscles, and she had me do exercises for the vagus nerve. PT helped me immensely. I was able to increase physical activity - gave me hope.

I went to psychiatrist bc thought I was going crazy bc of the anxiety. I didn't know covid also affects the brain chemicals (neurotransmitters) and worsens/ leads to anxiety and depression. I didn't want to take meds- he gave me a very low dose med for anxiety to use as needed. It helps. I also use the app "Balance" to help with stress and anxiety - lots of techniques/strategies.

The fatigue (PEM- post exertional malaise) has been the worst part - it never goes away and can be debilitating.
I'm using the app "stresswatch" - monitors heart rate variability (HRV) - which is a direct indicator of fatigue. It sends notifications throughout the day - I change/stop what I'm doing to rest/sleep when I get "Pay attention" or "Overload" - I'm doing better at pacing activity/ getting the warning notifications less.
The good news is there is research addressing the symptoms.-
A couple of new things for the PEM, not fully researched or in use, but promising.

Providers- what providers/specialists are available in network? Read their bios/background, what they are interested in; maybe call office/insurer- what's experience with long covid.
(you probably already do this) but bring all test results/reports with you.

To help with med costs;
I use "Goodrx" - discount/cost less -
http://www.goodrx.com
I hope something here helps-

celia16 | @celia16 | Jul 1 6:45pm

I was wondering how you are doing. I have been diagnosed with post covid syndrome and Vitamin B12 deficiency. I’m not sure what causes my burning feeling on my skin. It’s intermittent and mysterious. Has yours continued?

heyjoe415 | @heyjoe415 | Jul 2 8:53am

Summer,

I am so sorry for what you are going through. Covid is a mystery and some people like you suffer disproportionately. I'm 69 now, vaxxed and boosted. Even so, I caught a mild case of Covid that lasted 5 days and was really like a common cold. I have no idea why some have such light symptoms and others like you suffer so much.

Anxiety is certainly understandable. Have you talked to your Dr about this? There are meds that deal with anxiety, and some of them are addictive and should be avoided. Even so, I would discuss with your Dr as it sure seems lie you need some relief.

One supplement I take that helps with anxiety is L-theanine. I buy this and all supplements only at pureencapsulations.com - the only supplement provider I trust.

L-theanine is not magic. I do think it helps with anxiety but not in a dramatic fashion. I hope you can get some help and find some relief. You certainly deserve it.

All the best to you Summer. Joe

cindisue | @cindisue | Jul 2 1:19pm

summerof42. I feel for you....because I know how terrible anxiety feels! People who have never experienced HORRIBLE ANXIETY, just have no idea how awful it truly is! The only thing, and the BEST anxiety medication is either Diazepam or Lorazepam or Xanax. But most regular doctors will not prescribe it because of it being addictive. But if it's the only med that will truly help some people.....who cares if it's addictive! Who cares if someone has to take it every day to control their anxiety ... it's about helping the people who suffer with extreme anxiety and giving them their quality of life back! I am very passionate about this subject and I'm telling you fellow anxiety sufferers, if your primary doctor won't prescribe you a benzodiazepine medication for anxiety, seek out a psychiatrist who will prescribe it. Don't give up. I tried multiple different meds and nothing works like Diazepam and Lorazepam. I've never taken Xanax, but know people who do, and that is also a very good medication. Good luck to you. Flurazepam and Lorazepam are great for sleep too.

dloos | @dloos | Jul 3 12:18pm

In reply to @cindisue "summerof42. I feel for you....because I know how terrible anxiety feels! People who have never experienced..." + (show)

I so agree! I take Klonopin in a small dose ( .25)most days. It doesn’t solve my health problems, but it makes it possible for me to have some quality of life.

Doctors are quick to prescribe SSRI and SNRI (also addictive), but now many doctors will not prescribe Benzos. I don’t understand the reasoning.

Antidepressants cause severe side effects for me, but I tolerate Klonopin and it helps me cope with my illness.
Isn’t that the goal?