Need to find out what's wrong with me

@jeffrow

I have taken Clonazepam 1mg (Klonopin) for 13 years, at bedtime, for anxiety. I have idiopathic peripheral neuropathy, both small fiber neuropathy and autonomic neuropathy, for which I've been attempting to treat for several years. I had a spinal cord stimulator implant in June, which has reduced the burning pain in my feet.

Some of the symptoms you described are similar to those of autonomic neuropathy. I suppose that you or your doctors have considered that possibility.

I wish that I lived close to a Mayo Clinic. I think they would quite possibly figure out what's really going on with my health in a short period of time. Instead, I've moved at a snail's pace to learn that I don't have a lot of diseases, from a parade of specialists over the course of ten years. But, Oregon is a long way from any of their clinics.

I hope that you find solutions soon. It's not easy to live for years with symptoms such as yours. May you find good health in 2018.

Jim

Hi Jeff (@jeffrow), welcome to Connect. I'm glad you found us and I'm hoping one of our members will be able to offer some suggestions for you or share their experience with their similar health problems. You certainly have a lot on your plate. Some days I can relate about feeling like a 90 year old but then at 74 I'm a lot closer than you are. You are doing a good thing here by asking questions and learning as much as you can.

I’m tagging other Connect members that may be able to provide you with more information. @JustinMcClanahan, @kdubois, @kanaazpereira, @lisalucier, @colleenyoung are you able to offer any suggestions for @jeffrow?

If it is a possibility to make an appointment at Mayo Clinic, they are extremely good a diagnosing hard to diagnose health issues. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

The following TED talk by TED Fellow Jennifer Brea may be helpful:
“What happens when you have a disease doctors can’t diagnose” – TED talk by Jennifer Brea who became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.

Hoping you find some answers soon.

John

I want to add, as too many don't know, they tested negative, or had covid before anyone knew it was here, all of your above issues are ON the list of long covid symptoms. That you had them previously is why comorbidity is a factor with the virus.

You will not find one longhauler who has not been in your shoes. The high pulse, like me, can be POTS. burping like a sailor on leave drinking 25¢ beers is my new normal. Can barely control burping to even be polite. Guess it's good I'm rarely in public.

Anything that can get worse because of increased inflammation, will. All autoimmune issues can go thru the roof and stay there.

If you don't know if you had it, an IGG blood test (not antibody test which can be influenced by vaccine status) will be positive ONLY if you actually had covid - except sometimes if it's really high, it can mean you have a very active autoimmune thing going on, which of course is also COVID.y IGG, though I tested neg, was off the charts

Another test is your cytokine level. This will tell the degree of inflammation in your body. With some illnesses, like the CRPS I have and fibro too, my cytokine level is always elevated but COVID is like cytokine on steroids in my blood. Adrenal, cortisol etc activation results. Close to PTSD levels of symptoms of anxiety etc.

"Cytokine storm" is what kills people in the ICU with COVID. Not the virus itself. Our bodies response to it while fighting it off. Increased cytokine, bradykine, etc are normal when fighting of an infection/virus. With esp COVID, which is part of what makes it different in humans, our own bodies natural response, is what kills.

Did you have COVID when things blew up recently. To connect with longhaulers, who also go thru sometimes years now of testing with all normal results but many having exactly what you are and more, go to the Facebook group for longhaulers. You may find other weird things you didn't even notice or blew off as too weird to even mention to a doctor. Incontinence etc. Whodda thought? Inflammation affects every organ.

Esp now, with the status of people thinking it's over, doctors have moved past considering longhaulers or don't know enough about the possible hundreds of sequelae.

COVID settles whereever ACE receptors exist. Mostly lungs and stomach, hence new murderous GERD for some, as well as "IBS" symptoms. Fibro and chronic Fatique etc are very common new illnesses that are prevalent among longhaulers. It's very frustrating and also worthy of consideration. The milder the case of covid, which the last year can mean just calling it a cold, the higher the percentage of longhaulers. Right now, our ranks, and Disability claims are thru the roof. Long COVID, on a special list with Social security Disability to fast track thru, are swelling greatly! A mild case doesn't mean for ANYONE you will have a complete recovery. Many of us are seriously changed for life even when they were marathoners before. Post COVID syndrome covers all of your worsened symptoms. Sorry and worthy of adding to the mix for mental health frustration reasons if nothing else.

When you can't get diagnosed with a crazy basket of symptoms all at once, people need to think longhaulers, esp if vaccine didn't exist in your life or like me, in July of 2020, there was no vaccine. Most are a year or more doing rule out lab work with every single thing negative but clearly, worthy of doing until the tests are so obscure and expensive you are searching for a needle in a hay stack. Too many realizing when seeing the vast list of symptoms people are experiencing, it's too on the nose to not be it.

Best of luck. It's very frustrating and not enough people understand that longhaulers can happen even when you didn't even know you had it. Sometimes, the milder the case, the increased % risk. Right now, it's 30% who end up with post COVID syndrome and have a forever changed life. Suicides have also increased from frustration and inability to accept living in a now incredibly disabled body.

I didn't barely have even a cough the first three months until it travelled to my lungs, mostly just a sore throat for a month and a negative test but a huge flair of my pain condition. Low 02 in the high 80s. High pulse and BP over time with any activity. Eventually kidney stones probably from dehydration. A collapsed lung. Too many overweight people are being told if they lose weight they will be fine. (fat shaming is huge. Shame is huge among longhaulers.)

At this point after two infections with COVID, I sleep with oxygen and mostly bedridden deciding to get a wheelchair. Short of breath just walking to the kitchen. Can no longer empty the dishwasher even. Total constant Fatique. Too many don't understand or have felt like it wouldn't be them. Good luck.

There is a long COVID thread here but the FB group is seriously very active and asking questions there can give you hundreds of responses of "me too."

I want to add, as too many don't know, they tested negative, or had covid before anyone knew it was here, all of your above issues are ON the list of long covid symptoms. That you had them previously is why comorbidity is a factor with the virus.

You will not find one longhauler who has not been in your shoes. The high pulse, like me, can be POTS. burping like a sailor on leave drinking 25¢ beers is my new normal. Can barely control burping to even be polite. Guess it's good I'm rarely in public.

Anything that can get worse because of increased inflammation, will. All autoimmune issues can go thru the roof and stay there.

If you don't know if you had it, an IGG blood test (not antibody test which can be influenced by vaccine status) will be positive ONLY if you actually had covid - except sometimes if it's really high, it can mean you have a very active autoimmune thing going on, which of course is also COVID.y IGG, though I tested neg, was off the charts

Another test is your cytokine level. This will tell the degree of inflammation in your body. With some illnesses, like the CRPS I have and fibro too, my cytokine level is always elevated but COVID is like cytokine on steroids in my blood. Adrenal, cortisol etc activation results. Close to PTSD levels of symptoms of anxiety etc.

"Cytokine storm" is what kills people in the ICU with COVID. Not the virus itself. Our bodies response to it while fighting it off. Increased cytokine, bradykine, etc are normal when fighting of an infection/virus. With esp COVID, which is part of what makes it different in humans, our own bodies natural response, is what kills.

Did you have COVID when things blew up recently. To connect with longhaulers, who also go thru sometimes years now of testing with all normal results but many having exactly what you are and more, go to the Facebook group for longhaulers. You may find other weird things you didn't even notice or blew off as too weird to even mention to a doctor. Incontinence etc. Whodda thought? Inflammation affects every organ.

Esp now, with the status of people thinking it's over, doctors have moved past considering longhaulers or don't know enough about the possible hundreds of sequelae.

COVID settles whereever ACE receptors exist. Mostly lungs and stomach, hence new murderous GERD for some, as well as "IBS" symptoms. Fibro and chronic Fatique etc are very common new illnesses that are prevalent among longhaulers. It's very frustrating and also worthy of consideration. The milder the case of covid, which the last year can mean just calling it a cold, the higher the percentage of longhaulers. Right now, our ranks, and Disability claims are thru the roof. Long COVID, on a special list with Social security Disability to fast track thru, are swelling greatly! A mild case doesn't mean for ANYONE you will have a complete recovery. Many of us are seriously changed for life even when they were marathoners before. Post COVID syndrome covers all of your worsened symptoms. Sorry and worthy of adding to the mix for mental health frustration reasons if nothing else.

When you can't get diagnosed with a crazy basket of symptoms all at once, people need to think longhaulers, esp if vaccine didn't exist in your life or like me, in July of 2020, there was no vaccine. Most are a year or more doing rule out lab work with every single thing negative but clearly, worthy of doing until the tests are so obscure and expensive you are searching for a needle in a hay stack. Too many realizing when seeing the vast list of symptoms people are experiencing, it's too on the nose to not be it.

Best of luck. It's very frustrating and not enough people understand that longhaulers can happen even when you didn't even know you had it. Sometimes, the milder the case, the increased % risk. Right now, it's 30% who end up with post COVID syndrome and have a forever changed life. Suicides have also increased from frustration and inability to accept living in a now incredibly disabled body.

I didn't barely have even a cough the first three months until it travelled to my lungs, mostly just a sore throat for a month and a negative test but a huge flair of my pain condition. Low 02 in the high 80s. High pulse and BP over time with any activity. Eventually kidney stones probably from dehydration. A collapsed lung. Too many overweight people are being told if they lose weight they will be fine. (fat shaming is huge. Shame is huge among longhaulers.)

At this point after two infections with COVID, I sleep with oxygen and mostly bedridden deciding to get a wheelchair. Short of breath just walking to the kitchen. Can no longer empty the dishwasher even. Total constant Fatique. Too many don't understand or have felt like it wouldn't be them. Good luck.

There is a long COVID thread here but the FB group is seriously very active and asking questions there can give you hundreds of responses of "me too."