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Autonomic Neuropathy - Looking to talk with others

Posted by notavailible @kathyzendner, May 12, 2016

Hi, I have only been on this site a few times. I was diagnosed 11/2015 with Autonomic Neuropathy. My health continues to deteriorate. I'm a Veteran(US Navy) so most of my medical care is through the VA. I made a drastic choice to try to save my life. I recently(still in the process) moved from Oregon to California(San Francisco area)in order to receive better health care. I had to leave my family behind. I'm in hopes of eventually being referred to UCSF through the VA. My Oregon Health Sciences Univ. specialists told me I need to be seen by the top Neurological specialists. My Autonomic Neuropathy is affecting my entire body. I had feeding tubes put in place 1/2016. I suffer from horrendous bone pain, that wakes me up constantly. Now in the last month if I pick up an item as light as a laptop case, I have blown veins in my hands and fingers 3 times. My GI specialist in Oregon said that next to be affected will be my blood pressure. My thermostat is also gone. I can freeze and shiver in 74 degree weather. Or sweat horribly in 34 degree weather. I actually drench through my clothes into furniture! I'm also Hypothyroid. My toes are gone, my fingers too. They burn and throb 24/7. I'm not diabetic. I was an athlete my entire life. I'm a white female 62 3/4 years old. I'm looking for any one else who has been diagnosed with AN(Autonomic Neuropathy) I have been on several pain meds including Cymbalta which did help some with my bone and joint pain. However since I now have feeding tubes I can't take Cymbalta as it plugs up my feeding tubes. I have already tried Lyrica, and Gabapentin with no help. I am also interested in yoga, and healing oils or creams for my feet and hands. I am very frustrated at this point. My body is literally falling apart. I hope someone will read this message and respond. I am looking into support groups in my new hometown. I currently have very little internet time where I'm staying. I will be moving 5/14/16 to my new home. Hopefully I will be able to visit this site regularly to meet other people. There may be a delay in my responses until I get a better internet connection next week. I would like to talk with anyone who has non-diabetic neuropathy and chronic pain. Thank you, Kathy Z

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Alyse Brunella | @alysebrunella | May 13, 2016

Hi @kathyzendner, and welcome to the Autoimmune Diseases group. You have been on quite the journey – and I appreciate you sharing your condition and story on Connect. I’m tagging a few members who are active in discussions around neuropathy. @bobsconnect @johnwburns @cputans, Kathy would love to hear your experiences and talk with you all about neuropathy and pain.

I’m also including the link to the discussion group: Anyone here dealing with peripheral neuropathy? (https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/)
There is also a Chronic Pain group that you might find helpful and supporting: https://connect.mayoclinic.org/group/pain/

@kathyzendner, you mentioned practicing yoga. Have recently started practicing?

Please keep the group posted on the support groups you find locally in San Francisco.

REPLY
1 reply
mojoearle | @mojoearle | May 13, 2016

Hi! I just have to tell you that you are not alone. I'm 33 almost 34 and was a major athlete my entire life and I was also diagnosed with Autonomic neuropathy in 2015 at the Mayo Clinic in Scottsdale and I am also getting ready to go through chemotherapy for my thyroid gland and was diagnosed with Hashimoto's in 2015 as well, along with many other medical conditions. I hate that I am not even 34 years old and dealing with all of this medical stuff and it's really hard for me to explain to friends and family members about my health and I haven't been able to work in almost 5 years! I have not tried Cymbalta, but that's because my heart won't let me and I hate having to rely on heavy doses of narcotic painkillers and worry about running out and going through withdrawals NOT because I'm addicted to them but because after being on them for so so many years my body is definitely dependent on them. I have such bad bone pain and muscle aches and spasms and I have had 16 surgeries including hip and knee replacements. I also have EDS or Elhers-Danlos Syndrome and I can't help but worry that I brought a lot of my serious chronic health problems on myself after being way too hard on my body for decades being too underweight and pushing myself way too hard in many sports; even though I know I didn't really cause all of my problems.
Ahh...... I GOTTA GO TALK TO ONE OF MY 50 DOCTORS ON THE PHONE RIGHT NOW BUT WILL COME BACK TO THIS THREAD ASAP

REPLY
1 reply
notavailible | @kathyzendner | May 16, 2016
In reply to @mojoearle "Hi! I just have to tell you that you are not alone. I'm 33 almost 34..." + (show)
@mojoearle

Hi! I just have to tell you that you are not alone. I'm 33 almost 34 and was a major athlete my entire life and I was also diagnosed with Autonomic neuropathy in 2015 at the Mayo Clinic in Scottsdale and I am also getting ready to go through chemotherapy for my thyroid gland and was diagnosed with Hashimoto's in 2015 as well, along with many other medical conditions. I hate that I am not even 34 years old and dealing with all of this medical stuff and it's really hard for me to explain to friends and family members about my health and I haven't been able to work in almost 5 years! I have not tried Cymbalta, but that's because my heart won't let me and I hate having to rely on heavy doses of narcotic painkillers and worry about running out and going through withdrawals NOT because I'm addicted to them but because after being on them for so so many years my body is definitely dependent on them. I have such bad bone pain and muscle aches and spasms and I have had 16 surgeries including hip and knee replacements. I also have EDS or Elhers-Danlos Syndrome and I can't help but worry that I brought a lot of my serious chronic health problems on myself after being way too hard on my body for decades being too underweight and pushing myself way too hard in many sports; even though I know I didn't really cause all of my problems.
Ahh...... I GOTTA GO TALK TO ONE OF MY 50 DOCTORS ON THE PHONE RIGHT NOW BUT WILL COME BACK TO THIS THREAD ASAP

Jump to this post

Hi Mojoearle, Thank you for your reply. I got my AN from living in an extremely, horrible, old, moldy house! I don't have Hashimoto's Disease, however I'm going to request a referral to an Endocrinologist as I have never been evaluated. Since I became sick my Thyroid levels are uncontrollable! Dose of Synthyroid up & down. My levels won't stabilize. Next up for me will most likely be home IV infusion of steroids. Something has to be done, as I'm losing my battle! I'm not looking forward to being on steroids though. My pain levels are off the charts. Also now I am blowing blood vessels in my hands just from lifting my lap top case! Scary! I still push myself every day. I do a lot of things I shouldn't, but I'm single, on my own so I have too! I do try to walk every day. I hope we stay in touch! Have a good week, ~Katt~

REPLY
notavailible | @kathyzendner | May 16, 2016
In reply to @alysebrunella "Hi @kathyzendner, and welcome to the Autoimmune Diseases group. You have been on quite the journey..." + (show)
@alysebrunella

Hi @kathyzendner, and welcome to the Autoimmune Diseases group. You have been on quite the journey – and I appreciate you sharing your condition and story on Connect. I’m tagging a few members who are active in discussions around neuropathy. @bobsconnect @johnwburns @cputans, Kathy would love to hear your experiences and talk with you all about neuropathy and pain.

I’m also including the link to the discussion group: Anyone here dealing with peripheral neuropathy? (https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/)
There is also a Chronic Pain group that you might find helpful and supporting: https://connect.mayoclinic.org/group/pain/

@kathyzendner, you mentioned practicing yoga. Have recently started practicing?

Please keep the group posted on the support groups you find locally in San Francisco.

Jump to this post

Thank you Alyse, I'm happy that I found this community. I have a lot to learn! I will look into the links you provided. I just separated from my husband of 42 years. I moved back home to Santa Rosa, CA. I have found one support group here so far. I just moved in to my new apartment on Saturday. I have a ton of things to get done along with unpacking. I will stay in touch. No yoga yet, I have to find an expert Yoga instructor who can work with someone of my age & my Autonomic Neuropathy. It's nice to meet you! ~Katt~

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