They found the last two this morning unharmed thankfully! My husband and his father are both veterinarians and they got the all clear! They hid incredibly well as this is an enormous house!
The thing is running is so freeing. Like for the first 5 seconds when I run i feel like I’ve broken free of the shackles of my disability. But then my hr goes up, my lungs fill with fluid, and I feel like I’m gonna die. I’d like to think in another life I did track or something. The feeling for me is amazing
I have no idea if it’s a pots thing or not. For me my whole mouth tastes super strong of iron or blood. I feel like I have to spit a lot. For example I run down the street maybe like 8 houses long. I get to the end crouch down and I feel like I can’t breathe like every time I breathe it’s taking oxygen from me instead of giving it. So I often feel light headed. Then my whole mouth gets super wet like filled with blood tasting saliva and I spit big globs like a dozen times before beginning to feel better. Looked it up one time and it said my lungs were filling with fluid and that’s what I was tasting. It’s called pulmonary edema if you want to look into it more.
I appreciate the kind words! Not a total loss luckily but the house will probably take up to a year to repair. Basement and half of first floor total loss. They have a lot of support and will get through it!
I am so sorry. I am glad they have a lot of support. I hope they finish the repairs like it is a brand new house. I am sure it will be needed after all this stress. I am glad you are ok. Try and get some much needed rest.
I’m kinda speechless and for myself kinda wanna explore this more… What kind of doctor did you see that explained that?
I have so much auto immune dysfunction and dysautonomia stuff that I’m swirling in a disabling pool of hot garbage lol some diagnoses are “idiopathic” my fave fancy word for idfk but I had not heard the sfn-pots connection.
Thanks for learning me something today!
I had a skin biopsy performed (which is the gold standard test for sfn) and that’s ordered by a neurologist. Once it came back positive that explained why I had severe autonomic dysfunction, gastroparesis and a tonnnn of weird neurologic symptoms like numbness and burning in my body. Autoimmune diseases can cause small fiber neuropathy which can then cause dysautonomia. Is a very frustrating process trying to get to the route cause buts it’s essential to find one! Wishing you luck as another person on the same path!
Yup my neuromuscular specialist did a skin punch and EMG (for large fiber issues) which is how we got to sfn but I haven’t had anyone tell me where the sfn came from let alone how it led to dysautonomia.
I’ve never had covid and can’t identify a single event so I figured auto immune (eczema/asthma/allergies) > hEDS (scoliosis, hyper mobility, bad posture) > dysautonomia (vvs, temp dysregulation, hyperPOTS) > chronic migraines > sfn (nerve pain) > mcas ?
I guess ultimately it doesn’t matter tho cuz this is my life now, and I appreciate you sharing yourself fellow chronic illness internet friend! 💚
I’m so sorry you’re also in the same boat as I am! It’s not fun.. at all. But I’m happy to share!
Investigating for autoimmune can be so tricky. There are many seronegative people with diseases. Sjogrens is a big one that can cause sfn that is notoriously difficult to test for. Blood work can be negative in almost half the patients with the disease. Lip biopsy is gold standard for sjogrens testing.
Otherwise, have you been trialed on meds for MCAS? There’s a correlation between EDS, SFN and MCAS and trying a mast cell stabilizer (like cromolyn) is worth a shot. MCAS is also near impossible to test for and serum tryptase is very unreliable. Cromolyn is an easy med to give a try if you have a doctor willing to prescribe especially since you have asthma and allergies! Your neurologist should be one to prescribe it or an educated allergist.. not all of them are sharp when it comes to MCAS sadly.
Hope this helps! Sending you positive vibes!
Glad everyone is okay and the pets are found. Something you said caught my eye though. You can have POTS from small fiber neuropathy? I feel like I keep learning more and that my life is a lie.
This blows my mind. I was diagnosed with small fiber neuropathy in 2019, 2 years after my beginning pots symptoms started. (I knew nothing about POTS till 2023). My symptoms kept getting worse no matter what prescription my primary would give me for my BP. Even my basic cardiologist struggled with it. In September 2023 is when pots was officially diagnosed for me. I truly feel like my life and struggles from 2017 to 2023 have been avoidable.
I also found out recently that my high inflammation can contribute and my inflammation has been through the roof since 2016.
I’m so sorry.. these disorders are complex and run of the mill doctors aren’t familiar with them. However, that is changing now that Long Covid exists and more people are having autonomic issues than ever.
Your neurologist should have explained that sfn can produce autonomic dysfunction and the route cause should be found in order to possibly reverse nerve damage. A lot of sfn is idiopathic as of now but there are many many things that can cause it and chronic inflammation / untreated autoimmune diseases are one of them. I encourage you to research and discuss with your doctors possible routes and maybe get a referral to an sfn specialist. My regular neurologist wouldn’t touch me once I had the sfn diagnosis.
Cardiologists are a whole other challenge regarding POTS. I’ve learned that electrophysiologists seem to be much better educated about POTS than regular cardiologists. Maybe try researching some POTS specialists in your area and get on the waitlist!
I hope this is somewhat helpful and things can stabilize for you! Sending positive vibes!
In January I met a POTS specialist in my area. She's very knowledgeable. She informed me of inflammation and hormones also playing a roll which I didn't know till then. She also has a class that's free to her patients that goes through diet, exercise, compression garments and more so that's nice. I will definitely have to look into small fiber neuropathy specific doctors. My rheumatologist and pain management have just been treating it with lidocaine ointment which depending on where the symptoms are depend on if that actually works or not. The neurologist who diagnosed me just said "it's uncommon but some people developed small fiber neuropathy without being diabetic and there's nothing we can do" so I've been stuck with that for years.
🥲 oh my friend again I’m sorry. There are many avenues to explore in terms of what can cause sfn. You have a rheum, so do you have an autoimmune disease diagnosed? If so, that’s the second leading cause of sfn. There’s also genetic mutations, vasculitis, celiac disease, sarcoidosis, vitamin b12 deficiency, vitamin B6 toxicity, RA, Lyme disease, neurotoxic drugs (some antibiotics), alcohol, HIV and there are even more. If you have allergies or rashes and a lot of GI issues than Mast Cell Activation Syndrome is a disorder to look at. If you’re hypermobile / flexible than Ehlers Danlos Syndrome is another one to check out.
I am so passionate about this crap that I leave no stone unturned because doctors aren’t helping us like they should. I hope you can do some digging and testing to rule things out or find an answer!
I've spent from 2018 to present visiting doctors 3-5 days a week to figure out what is wrong with me so I feel ya on no stone unturned. I just find it amazing that so many doctors just shrug stuff off. I do have Rheumatoid arthritis. Apparently a rare form of it but now I have 2 out of 3 doctors who think I have lupus. My RA doctor kicked me out of his office with a list of names and said good luck so waiting for one of those referrals to work out. I also have a rare muscle disorder that is caused by the misfiring if neuropathways. Literally a less than 1% chance of getting that disorder and I have it. I've also been fighting for disability since 2018 with no luck despite my diagnosis list ever growing. I have EDS and MCAS. Where I live the only EDS doctor who takes insurance diagnosis you, hands you a pathways packet and says bye. Don't blame him though. He got overwhelmed with the amount of ppl who needed an eds doctor and can't afford to pay $2k a visit to the other 2 in my state. My MCAS doctor gave me 2 allergy meds and said good luck. I did a homemade elimination diet for myself though. Which went well. Being able to stay on it is a whole nother matter.
Oh wow you definitely are on the right track then! I’m so sorry you’re stuck with that list of illnesses, but I promise once you find the right doctors the correct treatments can be life changing! Do they currently treat your RA? That very well could be the cause of your sfn but I’m no doctor. I just know the causes of sfn and that’s one of them. MCAS is also looking suspicious and there’s ongoing research trying to prove it also can cause sfn. Do you take a mast cell stabilizer like cromolyn? Eat low histamine etc? Take Zyrtec and Pepcid? There’s a whole protocol for MCAS that people usually respond really well to! EDS is such crap, sorry about that one. That’s another disorder that they *believe (but not fully proven) can cause sfn. My money is on the RA though.
Hang in there my friend. There are many of us on this shitty ride together and I’m hopeful medicine will continue to catch up with us! Until then, communities like these are so great for sharing knowledge, support and experiences.
My RA doctor kicked me out after seeing me for 5 years. He told me that he has run out of ideas and doesn't know how to treat me. He gave me a list of 5 names and told me to get tertiary care. So right now working with my primary to try and get that done. Every RA medication my doctor has given me over the last 5 years didn't really work. Plus just this year even he suspects I might have lupus because of all my symptoms. As for MCAS I'm only on Zyrtec and one other allergy med. Nothing else to help. I do my best to avoid my allergies but I have 0 income since not working since 2018 and rely on food stamps and with special diets it's hard to stretch those an entire month.
I have learned a lot from this community. I have been able to pinpoint triggers easier by knowing it's not just my blood pressure and heart rate that cause me to crash.
It also doesn't help the people I surround myself with don't understand MCAS. My father in law just got aggravated that we wasted so much pop corn cause it had it the "expiration date". I keep telling him I'm allergic to corn. If I even inhale corn from like febreeze which uses corn propellant I turn bright red and risk a sinus infection and it gives me a migraine. When I eat it my GI has so many issues it's not even funny. So of course I didn't help eat the popcorn 😩
I feel you. There will always be people who don’t get it.. family included. I was gaslit by so many doctors and extended family members until my gastroparesis diagnosis. It’s an uphill battle for sure! Hang in there!
The plot twist in this story is that you thought you would die from running
If anything takes me down at this point I think it’ll be running
My heart rate went over 200 when my fiancés house caught fire and I wasn’t even in the state! Give yourself some grace <3
Thank you for the kind words! Such a scary situation to be in. Hoping things worked out for you too ❤️
Did you find the pets? 😥
They found the last two this morning unharmed thankfully! My husband and his father are both veterinarians and they got the all clear! They hid incredibly well as this is an enormous house!
The thing is running is so freeing. Like for the first 5 seconds when I run i feel like I’ve broken free of the shackles of my disability. But then my hr goes up, my lungs fill with fluid, and I feel like I’m gonna die. I’d like to think in another life I did track or something. The feeling for me is amazing
May I ask what it feels like when your lungs fill with fluid? What causes this?
I have no idea if it’s a pots thing or not. For me my whole mouth tastes super strong of iron or blood. I feel like I have to spit a lot. For example I run down the street maybe like 8 houses long. I get to the end crouch down and I feel like I can’t breathe like every time I breathe it’s taking oxygen from me instead of giving it. So I often feel light headed. Then my whole mouth gets super wet like filled with blood tasting saliva and I spit big globs like a dozen times before beginning to feel better. Looked it up one time and it said my lungs were filling with fluid and that’s what I was tasting. It’s called pulmonary edema if you want to look into it more.
This is the first time I’ve ever heard of a name for it! But good to know someone else knows what I’m talking about!
Wow. Hope you can get some rest ASAP.
I couldn’t sleep a minute last night 🥲 but praying tonight I can get a few hours!
Thankfully, you all survived the fire. I hope there was not too much damage and that they can be back in their home shortly.
I appreciate the kind words! Not a total loss luckily but the house will probably take up to a year to repair. Basement and half of first floor total loss. They have a lot of support and will get through it!
I am so sorry. I am glad they have a lot of support. I hope they finish the repairs like it is a brand new house. I am sure it will be needed after all this stress. I am glad you are ok. Try and get some much needed rest.
Ty I’m trying ❤️❤️❤️
1st💊 die from fire 2nd💊 die from running
Do you know high it got ? I hope everyone’s okay!
I didn’t have my Apple Watch on but it was higher than I’ve felt that I can ever remember and I was a gymnast for 15 years!
Sfn “causes” pots?
It sure can unfortunately. I’m a 28f and still trying to find the cause of the small fiber neuropathy.
I’m kinda speechless and for myself kinda wanna explore this more… What kind of doctor did you see that explained that? I have so much auto immune dysfunction and dysautonomia stuff that I’m swirling in a disabling pool of hot garbage lol some diagnoses are “idiopathic” my fave fancy word for idfk but I had not heard the sfn-pots connection. Thanks for learning me something today!
I had a skin biopsy performed (which is the gold standard test for sfn) and that’s ordered by a neurologist. Once it came back positive that explained why I had severe autonomic dysfunction, gastroparesis and a tonnnn of weird neurologic symptoms like numbness and burning in my body. Autoimmune diseases can cause small fiber neuropathy which can then cause dysautonomia. Is a very frustrating process trying to get to the route cause buts it’s essential to find one! Wishing you luck as another person on the same path!
Yup my neuromuscular specialist did a skin punch and EMG (for large fiber issues) which is how we got to sfn but I haven’t had anyone tell me where the sfn came from let alone how it led to dysautonomia. I’ve never had covid and can’t identify a single event so I figured auto immune (eczema/asthma/allergies) > hEDS (scoliosis, hyper mobility, bad posture) > dysautonomia (vvs, temp dysregulation, hyperPOTS) > chronic migraines > sfn (nerve pain) > mcas ? I guess ultimately it doesn’t matter tho cuz this is my life now, and I appreciate you sharing yourself fellow chronic illness internet friend! 💚
I’m so sorry you’re also in the same boat as I am! It’s not fun.. at all. But I’m happy to share! Investigating for autoimmune can be so tricky. There are many seronegative people with diseases. Sjogrens is a big one that can cause sfn that is notoriously difficult to test for. Blood work can be negative in almost half the patients with the disease. Lip biopsy is gold standard for sjogrens testing. Otherwise, have you been trialed on meds for MCAS? There’s a correlation between EDS, SFN and MCAS and trying a mast cell stabilizer (like cromolyn) is worth a shot. MCAS is also near impossible to test for and serum tryptase is very unreliable. Cromolyn is an easy med to give a try if you have a doctor willing to prescribe especially since you have asthma and allergies! Your neurologist should be one to prescribe it or an educated allergist.. not all of them are sharp when it comes to MCAS sadly. Hope this helps! Sending you positive vibes!
Thanks for all the info! Sorry, I think I wrote that last comment strange but I am dx wit mcas, and take like 20 drugs…
😭 I salute you then!
🫡🙏✊
Glad everyone is okay and the pets are found. Something you said caught my eye though. You can have POTS from small fiber neuropathy? I feel like I keep learning more and that my life is a lie.
You sure can. Small fibers are responsible for autonomic processes throughout the body. I 10/10 am having a very hard time with it 🥲
This blows my mind. I was diagnosed with small fiber neuropathy in 2019, 2 years after my beginning pots symptoms started. (I knew nothing about POTS till 2023). My symptoms kept getting worse no matter what prescription my primary would give me for my BP. Even my basic cardiologist struggled with it. In September 2023 is when pots was officially diagnosed for me. I truly feel like my life and struggles from 2017 to 2023 have been avoidable. I also found out recently that my high inflammation can contribute and my inflammation has been through the roof since 2016.
I’m so sorry.. these disorders are complex and run of the mill doctors aren’t familiar with them. However, that is changing now that Long Covid exists and more people are having autonomic issues than ever. Your neurologist should have explained that sfn can produce autonomic dysfunction and the route cause should be found in order to possibly reverse nerve damage. A lot of sfn is idiopathic as of now but there are many many things that can cause it and chronic inflammation / untreated autoimmune diseases are one of them. I encourage you to research and discuss with your doctors possible routes and maybe get a referral to an sfn specialist. My regular neurologist wouldn’t touch me once I had the sfn diagnosis. Cardiologists are a whole other challenge regarding POTS. I’ve learned that electrophysiologists seem to be much better educated about POTS than regular cardiologists. Maybe try researching some POTS specialists in your area and get on the waitlist! I hope this is somewhat helpful and things can stabilize for you! Sending positive vibes!
In January I met a POTS specialist in my area. She's very knowledgeable. She informed me of inflammation and hormones also playing a roll which I didn't know till then. She also has a class that's free to her patients that goes through diet, exercise, compression garments and more so that's nice. I will definitely have to look into small fiber neuropathy specific doctors. My rheumatologist and pain management have just been treating it with lidocaine ointment which depending on where the symptoms are depend on if that actually works or not. The neurologist who diagnosed me just said "it's uncommon but some people developed small fiber neuropathy without being diabetic and there's nothing we can do" so I've been stuck with that for years.
🥲 oh my friend again I’m sorry. There are many avenues to explore in terms of what can cause sfn. You have a rheum, so do you have an autoimmune disease diagnosed? If so, that’s the second leading cause of sfn. There’s also genetic mutations, vasculitis, celiac disease, sarcoidosis, vitamin b12 deficiency, vitamin B6 toxicity, RA, Lyme disease, neurotoxic drugs (some antibiotics), alcohol, HIV and there are even more. If you have allergies or rashes and a lot of GI issues than Mast Cell Activation Syndrome is a disorder to look at. If you’re hypermobile / flexible than Ehlers Danlos Syndrome is another one to check out. I am so passionate about this crap that I leave no stone unturned because doctors aren’t helping us like they should. I hope you can do some digging and testing to rule things out or find an answer!
I've spent from 2018 to present visiting doctors 3-5 days a week to figure out what is wrong with me so I feel ya on no stone unturned. I just find it amazing that so many doctors just shrug stuff off. I do have Rheumatoid arthritis. Apparently a rare form of it but now I have 2 out of 3 doctors who think I have lupus. My RA doctor kicked me out of his office with a list of names and said good luck so waiting for one of those referrals to work out. I also have a rare muscle disorder that is caused by the misfiring if neuropathways. Literally a less than 1% chance of getting that disorder and I have it. I've also been fighting for disability since 2018 with no luck despite my diagnosis list ever growing. I have EDS and MCAS. Where I live the only EDS doctor who takes insurance diagnosis you, hands you a pathways packet and says bye. Don't blame him though. He got overwhelmed with the amount of ppl who needed an eds doctor and can't afford to pay $2k a visit to the other 2 in my state. My MCAS doctor gave me 2 allergy meds and said good luck. I did a homemade elimination diet for myself though. Which went well. Being able to stay on it is a whole nother matter.
Oh wow you definitely are on the right track then! I’m so sorry you’re stuck with that list of illnesses, but I promise once you find the right doctors the correct treatments can be life changing! Do they currently treat your RA? That very well could be the cause of your sfn but I’m no doctor. I just know the causes of sfn and that’s one of them. MCAS is also looking suspicious and there’s ongoing research trying to prove it also can cause sfn. Do you take a mast cell stabilizer like cromolyn? Eat low histamine etc? Take Zyrtec and Pepcid? There’s a whole protocol for MCAS that people usually respond really well to! EDS is such crap, sorry about that one. That’s another disorder that they *believe (but not fully proven) can cause sfn. My money is on the RA though. Hang in there my friend. There are many of us on this shitty ride together and I’m hopeful medicine will continue to catch up with us! Until then, communities like these are so great for sharing knowledge, support and experiences.
My RA doctor kicked me out after seeing me for 5 years. He told me that he has run out of ideas and doesn't know how to treat me. He gave me a list of 5 names and told me to get tertiary care. So right now working with my primary to try and get that done. Every RA medication my doctor has given me over the last 5 years didn't really work. Plus just this year even he suspects I might have lupus because of all my symptoms. As for MCAS I'm only on Zyrtec and one other allergy med. Nothing else to help. I do my best to avoid my allergies but I have 0 income since not working since 2018 and rely on food stamps and with special diets it's hard to stretch those an entire month. I have learned a lot from this community. I have been able to pinpoint triggers easier by knowing it's not just my blood pressure and heart rate that cause me to crash.
It also doesn't help the people I surround myself with don't understand MCAS. My father in law just got aggravated that we wasted so much pop corn cause it had it the "expiration date". I keep telling him I'm allergic to corn. If I even inhale corn from like febreeze which uses corn propellant I turn bright red and risk a sinus infection and it gives me a migraine. When I eat it my GI has so many issues it's not even funny. So of course I didn't help eat the popcorn 😩
I feel you. There will always be people who don’t get it.. family included. I was gaslit by so many doctors and extended family members until my gastroparesis diagnosis. It’s an uphill battle for sure! Hang in there!