u/Ketosisssss

In 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick or foods (histamines?). For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. Doctors understandably always suspect anxiety, but it’s not (though these attacks DO generate anxiety afterwards). The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this or have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.

Post covid 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick. For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this and have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.

Post covid 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick. For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this and have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.

Post covid 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick. For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this and have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.