Burning and weakness

[zerohours000]

I woke up today with the worst burning sensations all over my body.  It was awful.  My hands feel so darn weird.  Not weak but like I definitely notice I'm having issues with certain fine skills with them.  I was having two ok days and then this.  The burning is everywhere and so annoying.  I take gabapentin but doesn't seem like it's holding it at bay.  Does anyone else have this burning all over?  I get it in my toes, my hands, my forearms, my ears, my head/brain, ears, chest, face.  It's so awful and stress obviously makes it worse but now it's affecting my ability to even type or write.  Or just sit there peacefully.  Is it neuropathy or something else?  What makes this all so odd is I'm not a typical autonomic case.  I don't have POTS, NCS, OH, etc.  I have dismotility issues for sure, this stupid nerve pain/neuropathy, trouble sleeping, and of course my mood is soured tremendously.  But to think I'm losing my motor functioning would be also terrible.  It just never ends.  

[WinterSown]

It sounds like parasthesia. I get it from blood pooling in my extremities. https://en.wikipedia.org/wiki/Paresthesia

[zerohours000]

12 hours ago, WinterSown said:

It sounds like parasthesia. I get it from blood pooling in my extremities. https://en.wikipedia.org/wiki/Paresthesia

What's crazy is I have a bunch of doctors saying I still don't have autonomic dysfunction.  I even contacted the lady who runs Dysautonomia International, told her the neuro I saw who signed off on my tilt table test, and she said "No.  He would not miss it."  So if not autonomic dysfunction --- what???  I'm so confused.  Thanks as always Winter.  

[WinterSown]

You don't have to have dysautonomia to have parasthesia. Not everything is caused by dysautonomia even though so much is. I am 60 and along with dysautonomia I have a whopping case of all my organs being sixty years old. With me, Is it dysautonia or the effect of natural aging? It's quite often both 😞  Quite a conundrum but it doesn't matter the cause as my doctors are wonderful souls and still treat the symptoms. I have had some relief from physical therapy and exercise giving me better overall perfusion.  Aspirins help me with the pain just fine, and if I am also shaking bad I take a milligram of valium on orders of my EP,  it's a muscle relaxant. I rarely get parasthesia without some tremors but when it is bad I need the valium. 

 

[zerohours000]

7 minutes ago, WinterSown said:

You don't have to have dysautonomia to have parasthesia. Not everything is caused by dysautonomia even though so much is. I am 60 and along with dysautonomia I have a whopping case of all my organs being sixty years old. Is it dysautonia or the effect of natural aging. Quite a conundrum but it doesn't matter the cause as my doctors are wonderful souls and still treat the symptoms. I have had some relief from physical therapy and exercise giving me better overall perfusion.  Aspirins help me with the pain just fine, if I am also shaking bad I take a milligram of valium on orders of my EP, it's a muscle relaxant. I rarely get parasthesia without some tremors but when it is bad I need the valium.

True.  I just wonder what all this is...and then I question why I'm even on these forums and other groups?  I'm only 33 so I'm entirely sure what's up.  Dysautonomia seemed to matched at the time, and even my first neuro said yes, then no, and then definitely no once the ttt came back.  I have an appointment with a rheumatologist in 2 weeks so maybe they can shed some light on all of this.  I'm secretly hoping it's something like functional b12 deficiency.  My mother is extremely non-anemic b12 deficient, and everyone on my dad's side supposedly has this MTHFR gene mutation.  But I don't know the full science behind that and have heard conflicting things about it.  : (

[zerohours000]

5 minutes ago, POTSGIRL123 said:

also if you have that how do you get the b 12 into the cellular level...with the IV ??? 

Injections or maybe the sunlingual pills could help. 

[zerohours000]

I still have the burning.  But I think it's because of nerve damage or something like that.  I'm also at work right now under nothing but fluorescent lights.  Today has been a very poor day for me, after a few not so poor days.  The burning has never been this bad.  

[Pistol]

@POTSGIRL123 - have you had your iron checked? You can have a low-normal hematocrit and hemoglobin but have low iron or ferritin and then you can have same symptoms as anemia. 

[MomtoGiuliana]

With your family history of B12 deficiency I would definitely pursue that question with your doctor.  I am sorry they were not willing to run more tests on this.  Your symptoms (burning etc) do sound like they are consistent with low B12.  I was having burning and other sensations in my extremities until I took large dose B12 for several weeks.  Perhaps you need to try to see a hematologist or someone with expertise in vitamin deficiencies.

[zerohours000]

1 minute ago, MomtoGiuliana said:

With your family history of B12 deficiency I would definitely pursue that question with your doctor.  I am sorry they were not willing to run more tests on this.  Your symptoms (burning etc) do sound like they are consistent with low B12.  I was having burning and other sensations in my extremities until I took large dose B12 for several weeks.  Perhaps you need to try to see a hematologist or someone with expertise in vitamin deficiencies.

Yes.  I was hoping that’d be the case too.  Especially given how non invasive a uMMA test is.  But the problem is is I don’t have low b12 but high b12 (which I also heard could cause burning).  

[Clb75]

Have you had a test for small fiber neuropathy? I remember from a previous post they ran a nerve conduction test and emg, but these only test for large fiber damage. You can have a negative nerve conduction test but have small fiber damage and have the burning and tingling feeling. They typically do a skin biopsy or a qsart test for small fiber damage.

[zerohours000]

6 minutes ago, Clb75 said:

Have you had a test for small fiber neuropathy? I remember from a previous post they ran a nerve conduction test and emg, but these only test for large fiber damage. You can have a negative nerve conduction test but have small fiber damage and have the burning and tingling feeling. They typically do a skin biopsy or a qsart test for small fiber damage.

I haven’t had those tests yet.  : /

[WinterSown]

12 hours ago, zerohours000 said:

True.  I just wonder what all this is...and then I question why I'm even on these forums and other groups?  I'm only 33 so I'm entirely sure what's up.  Dysautonomia seemed to matched at the time, and even my first neuro said yes, then no, and then definitely no once the ttt came back.  I have an appointment with a rheumatologist in 2 weeks so maybe they can shed some light on all of this.  I'm secretly hoping it's something like functional b12 deficiency.  My mother is extremely non-anemic b12 deficient, and everyone on my dad's side supposedly has this MTHFR gene mutation.  But I don't know the full science behind that and have heard conflicting things about it.  : (

It was beneficial  to both my mental and physical health that I ended my membership in FB POTS groups. So  much uncontrolled misinformation and many had seemingly adopted the tone that it was better to be there complaining and being ill in camaraderie than discussing the ways and means of returning to health. I thought the posts about 'my pillbox tower is taller than yours' were self-defeating. And, hide from the anti-exercise harpies who demand a trigger warning in any post that mentions exercising to improve your health. The only dysautonomia group I still visit at FB is an exercise and nutrition group. I need reliable content and education in a more encouraging setting. That's why I am here.

[zerohours000]

22 minutes ago, WinterSown said:

It was beneficial  to both my mental and physical health that I ended my membership in FB POTS groups. So  much uncontrolled misinformation and many had seemingly adopted the tone that it was better to be there complaining and being ill in camaraderie than discussing the ways and means of returning to health. I thought the posts about 'my pillbox tower is taller than yours' were self-defeating. And, hide from the anti-exercise harpies who demand a trigger warning in any post that mentions exercising to improve your health. The only dysautonomia group I still visit at FB is an exercise and nutrition group. I need reliable content and education in a more encouraging setting. That's why I am here.

Agreed.  Would you mind linking to that FB group?  I’m on the Dysautonomia International FB group for Massachusetts.  And one on Reddit.  But it’s so POTS-dominant that I probably only get a small % of useful tips and then ideas.  

[WinterSown]

I will PM you. 

 

[Debbie Rose]

I had burning of my feet years before I developed the parathesia-numbness, tingling and loss of senstion of bothe my feet and 1/3 up my legs...they tell me it "could" be my dysautonomia but since I have alot of back issues it could be that too. Have not ha EMG to fine tune it. Its a bother but not worth the out of pocket $$ to find out why

[blizzard2014]

7 hours ago, WinterSown said:

It was beneficial  to both my mental and physical health that I ended my membership in FB POTS groups. So  much uncontrolled misinformation and many had seemingly adopted the tone that it was better to be there complaining and being ill in camaraderie than discussing the ways and means of returning to health. I thought the posts about 'my pillbox tower is taller than yours' were self-defeating. And, hide from the anti-exercise harpies who demand a trigger warning in any post that mentions exercising to improve your health. The only dysautonomia group I still visit at FB is an exercise and nutrition group. I need reliable content and education in a more encouraging setting. That's why I am here.

The "old people back up and bow to me when they see me getting my 10 scripts filled at Wal-Mart!" My mountain of used pill bottles can fill an entire landfill all by themselves lol! sometimes humor is the best medicine, but it is easy to get lost in your disease and forget that the ultimate goal if to get better. Sometimes people aren't ready to hear the truth and get themselves up and exercising and moving in the right direction. They get stuck in a rut for many weeks, months, and sometimes even years. Then you have the big fights over those who use meds vs those who use diet and exercise. The anti pain med peeps bashing those who use pain meds for their chronic pain. Patients running wild on one another can become very unproductive. 

[zerohours000]

5 minutes ago, blizzard2014 said:

The "old people back up and bow to me when they see me getting my 10 scripts filled at Wal-Mart!" My mountain of used pill bottles can fill an entire landfill all by themselves lol! sometimes humor is the best medicine, but it is easy to get lost in your disease and forget that the ultimate goal if to get better. Sometimes people aren't ready to hear the truth and get themselves up and exercising and moving in the right direction. They get stuck in a rut for many weeks, months, and sometimes even years. Then you have the big fights over those who use meds vs those who use diet and exercise. The anti pain med peeps bashing those who use pain meds for their chronic pain. Patients running wild on one another can become very unproductive. 

Spot on.  The worst, however, I feel, are the snake oil salespeople selling “cures” for things.  Like lupus.  There ain’t no cure for that.  Maybe in the future there will be but right now drinking green shakes isn’t the cure.   I don’t trust pharmaceutical companies but I trust in the science behind them.  Some people need those meds just like I need my gabapentin.  The inter-patient fighting is dumb.  We have this wonderful resource in each other’s experiences, this giant working brain called the internet; we should be using it to help each INDIVIDUAL get the best treatment for themselves, not use it to chastise others.  I just want everyone, including myself, to be well (whatever version of that that may exist with resources possible).  It’s daunting, and maybe in some other society we’d have a better shot, what with for-profit driving or limiting both medical research, but that ain’t here yet either.  

[blizzard2014]

31 minutes ago, zerohours000 said:

Spot on.  The worst, however, I feel, are the snake oil salespeople selling “cures” for things.  Like lupus.  There ain’t no cure for that.  Maybe in the future there will be but right now drinking green shakes isn’t the cure.   I don’t trust pharmaceutical companies but I trust in the science behind them.  Some people need those meds just like I need my gabapentin.  The inter-patient fighting is dumb.  We have this wonderful resource in each other’s experiences, this giant working brain called the internet; we should be using it to help each INDIVIDUAL get the best treatment for themselves, not use it to chastise others.  I just want everyone, including myself, to be well (whatever version of that that may exist with resources possible).  It’s daunting, and maybe in some other society we’d have a better shot, what with for-profit driving or limiting both medical research, but that ain’t here yet either.  

I still get the anti-big pharma friends online tell me I do not need meds. All I need is a low carb gluten free diet and herbs to control everything lol. I don't have the luxury of hating on big pharma anymore. Big pharma has been saving my life for over 6 years now. I wouldn't be alive without big pharma. I love the people who come on the diabetes forum touting a low carb diet as being a cure to reverse your diabetes lol. Sure, going low carb lowers your blood sugar, but it does not cure you. As soon as you go out and eat a few bigmac's, your blood sugar will be back up into the high 200's again. That is unless you use insulin like I do. The anti-depressants and giving everyone (even those with low heart attack risk) atorvastatin is sort of controversial, but not all of the meds we take for serious medical problems. 

[WinterSown]

I was at PT some weeks back and the woman next to me couldn't keep her nose in front of her own face and leans over to tell me that if I would put essential oil behind my ears I would get better and would not need my drugs or PT. She's telling me scented oil will replace exercise; all the while the DPT was right behind us. Holy Hannah! Later I told him he was better than oil behind ears and I got the best massage of my life. 

 

[zerohours000]

4 minutes ago, WinterSown said:

I was at PT some weeks back and the woman next to me couldn't keep her nose in front of her own face and leans over to tell me that if I would put essential oil behind my ears I would get better and would not need my drugs or PT. She's telling me scented oil will replace exercise; all the while the DPT was right behind us. Holy Hannah! Later I told him he was better than oil behind ears and I got the best massage of my life. 

 

My aunt is into a lot of quackery.  She has issues with her ANS and keeps saying I need a “functional doctor.”  I was sad that Cleveland Clinic even added a functional medication sector.  Which to me is new age hokum.  I’m not saying it doesn’t have some benefit but it’s not science and it’s not medicine.  

[WinterSown]

14 minutes ago, zerohours000 said:

My aunt is into a lot of quackery.  She has issues with her ANS and keeps saying I need a “functional doctor.”  I was sad that Cleveland Clinic even added a functional medication sector.  Which to me is new age hokum.  I’m not saying it doesn’t have some benefit but it’s not science and it’s not medicine.  

Some herbs are very helpful. I grow horehound and when I chew up some leaves my chest clears and I breathe easier--one of my symptoms is Sudden Onset Mucus (my own term) and the horehound does a great job keeping it under control. But I made a bad herb mistake about ten years ago. I had a stuffy nose and sinuses and a whopping headache. I don't know why I did this but I think in desparation you are not always thinking clearly.  I took some feverfew leaves and put one in each ear. In a moment my nose cleared and my headache vanished, I felt great. I started walking into the house, went about five feet and thought I was going to croak. Everything was shaky blinky haywire. I instictively removed the leaves from my ears and immediatley felt better. Just because it is natural doesn't mean it is safe. Two tiny leaves had enough drug to nearly send me to the hospital. Ugh. Lesson learned.

[zerohours000]

27 minutes ago, blizzard2014 said:

I still get the anti-big pharma friends online tell me I do not need meds. All I need is a low carb gluten free diet and herbs to control everything lol. I don't have the luxury of hating on big pharma anymore. Big pharma has been saving my life for over 6 years now. I wouldn't be alive without big pharma. I love the people who come on the diabetes forum touting a low carb diet as being a cure to reverse your diabetes lol. Sure, going low carb lowers your blood sugar, but it does not cure you. As soon as you go out and eat a few bigmac's, your blood sugar will be back up into the high 200's again. That is unless you use insulin like I do. The anti-depressants and giving everyone (even those with low heart attack risk) atorvastatin is sort of controversial, but not all of the meds we take for serious medical problems. 

I don’t have that luxury either.  Diet and exercise are good regardless.  But to be a cure-all or even a preventative cure-some is a wide net to cast overva systemic problem, which affects everyone differently.  When foodies subscribe to diet as a cure-all they entirely overlook industrial farming practices generally. For example, farms overfarm and the soil is depleted and thus are their crops are.  Yes, processed food is bad but unless one is growing their own food, it’s likely to be depleted as well.

[zerohours000]

27 minutes ago, WinterSown said:

Some herbs are very helpful. I grow horehound and when I chew up some leaves my chest clears and I breathe easier--one of my symptoms is Sudden Onset Mucus (my own term) and the horehound does a great job keeping it under control. But I made a bad herb mistake about ten years ago. I had a stuffy nose and sinuses and a whopping headache. I don't know why I did this but I think in desparation you are not always thinking clearly.  I took some feverfew leaves and put one in each ear. In a moment my nose cleared and my headache vanished, I felt great. I started walking into the house, went about five feet and thought I was going to croak. Everything was shaky blinky haywire. I instictively removed the leaves from my ears and immediatley felt better. Just because it is natural doesn't mean it is safe. Two tiny leaves had enough drug to nearly send me to the hospital. Ugh. Lesson learned.

Yikes.  I mean.  There is something to the idea of “all natural” but not at the cellular level.  Like my aunt truly believes in naturopathic medicine.  But she is also not suffering like some on here suffer.  Her symptoms are somewhat like mine, minus the muscle twitches and burning.  She has sleep issues, stomach issues, and muscle cramping and pains.  She doesn’t have OI or POTS.  And I think she takes that for granted a bit as to the extent naturopathy is valid.

[WinterSown]

22 minutes ago, zerohours000 said:

Yikes.  I mean.  There is something to the idea of “all natural” but not at the cellular level.  Like my aunt truly believes in naturopathic medicine.  But she is also not suffering like some on here suffer.  Her symptoms are somewhat like mine, minus the muscle twitches and burning.  She has sleep issues, stomach issues, and muscle cramping and pains.  She doesn’t have OI or POTS.  And I think she takes that for granted a bit as to the extent naturopathy is valid.

There is still a lot to be said for placebo effect. Stong belief can stimulate the body in wonderful ways. Hubs has been getting THC gummies for his 91yo mom. To me they are overpriced candy, does nothing for me, but MIL thinks she has less pain from them. So we bought her all the flavors. If she is happy then he's happy. #OverpricedWin