Jessica_ Posted June 14, 2018 Report Share Posted June 14, 2018 Anybody else? Sometimes my upper/middle back gets this very warm sensation. Before I crashed a year ago with all of this I had this symptom but only when I took a deep breath. Now it’s there most days especially if I’m stressed. Sometimes it feels like it’s on fire Thoughts? Quote Link to comment Share on other sites More sharing options...
jklass44 Posted June 14, 2018 Report Share Posted June 14, 2018 Hmm hard to say. Does it feel like the burning is closer to the surface like on the skin (allergies?) or deeper like nerve pain? My entire back felt like it was on fire during a shingles flare up... Depends though because you say this has been a symptom before when you took deep breaths. Maybe an X-ray would help to rule out any problems with the lungs. Sorry I'm stumped!! Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted June 15, 2018 Author Report Share Posted June 15, 2018 Dang! I was hoping I would find somebody who had the same thing since a lot of us share similar symptoms! I’ve had multiple chest X-rays this past year before diagnosed with Dysautonomia with all my ER visits not knowing *** was going on with my body. So yes, this isn’t a new symptom it just seems more prominent since my OI exploded. It’s dedinitely a deeper sensation but I wouldn’t call it pain, just a hot feeling in my middle back. I’ve often wondered if my adrenals are literally on fire Lol Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted December 22, 2018 Report Share Posted December 22, 2018 On 6/14/2018 at 9:03 PM, Jessica_ said: Dang! I was hoping I would find somebody who had the same thing since a lot of us share similar symptoms! I’ve had multiple chest X-rays this past year before diagnosed with Dysautonomia with all my ER visits not knowing *** was going on with my body. So yes, this isn’t a new symptom it just seems more prominent since my OI exploded. It’s dedinitely a deeper sensation but I wouldn’t call it pain, just a hot feeling in my middle back. I’ve often wondered if my adrenals are literally on fire Lol Did you ever find out what this was? I have something similar. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 3, 2019 Author Report Share Posted January 3, 2019 On 12/21/2018 at 10:54 PM, potsiebarbie said: Did you ever find out what this was? I have something similar. Unfortunately no. I have mentioned it to a few doctors in the past and nobody knew what it could be. It must not be too serious since I have had a CT scan, lung X-ray and brain MRI in the past year and they were all normal. Us potsies are just unique 😉 Quote Link to comment Share on other sites More sharing options...
Help4Me Posted January 3, 2019 Report Share Posted January 3, 2019 it could be a spinal fluid leak.....you may want to ask your doctor about it and possibly ask for an MRI of your spine..... Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 4, 2019 Author Report Share Posted January 4, 2019 On 1/3/2019 at 10:19 PM, Help4Me said: it could be a spinal fluid leak......you may want to ask your doctor about it and possibly ask for an MRI of your spine..... Yikes! Is that the same as a CSF leak? I was checked for CSF leak with a brain MRI and it was normal. I have had this tingling since 2013 so it started before my Dysautonomia. It was after I gave birth to my daughter so maybe it has something to do with my epidural? Now you have me thinking.... Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted January 4, 2019 Report Share Posted January 4, 2019 1 hour ago, Jessica_ said: Yikes! Is that the same as a CSF leak? I was checked for CSF leak with a brain MRI and it was normal. I have had this tingling since 2013 so it started before my Dysautonomia. It was after I gave birth to my daughter so maybe it has something to do with my epidural? Now you have me thinking.... Mine was after my last delivery too! Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 4, 2019 Author Report Share Posted January 4, 2019 13 hours ago, potsiebarbie said: Mine was after my last delivery too! OMG maybe we are finally on to something with this! I’m going to ask my neuro when I see him next week about it. I will let you know what he thinks, not that I’m always taken seriously so I won’t get my hopes up 🙄 Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted January 4, 2019 Report Share Posted January 4, 2019 1 hour ago, Jessica_ said: OMG maybe we are finally on to something with this! I’m going to ask my neuro when I see him next week about it. I will let you know what he thinks, not that I’m always taken seriously so I won’t get my hopes up 🙄 Yes! Please lmk. None of my doctors take any of it seriously, because I have a history of anxiety. I feel like my pots either started, or at least made itself known after this last c section too. This was my third and last. My first two were emergencies. This one was scheduled. Yet, this one brought the most problems. The surgery took 2-3x as long because I kept "oozing" blood (that's how my ob phrased it). It was so traumatizing for me. I had to be given a clotting med during the operation. I also had my fallopian tubes removed. I do feel like the anesthesiologist had to stick me twice. And for some weird reason he wanted to do an epidural instead of spinal, but I insisted on spinal given my past experiences. IDK. Sorry for babbling, but I can't help but think it's related. Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 5, 2019 Author Report Share Posted January 5, 2019 6 hours ago, potsiebarbie said: Yes! Please lmk. None of my doctors take any of it seriously, because I have a history of anxiety. I feel like my pots either started, or at least made itself known after this last c section too. This was my third and last. My first two were emergencies. This one was scheduled. Yet, this one brought the most problems. The surgery took 2-3x as long because I kept "oozing" blood (that's how my ob phrased it). It was so traumatizing for me. I had to be given a clotting med during the operation. I also had my fallopian tubes removed. I do feel like the anesthesiologist had to stick me twice. And for some weird reason he wanted to do an epidural instead of spinal, but I insisted on spinal given my past experiences. IDK. Sorry for babbling, but I can't help but think it's related. You aren’t babbling and even if you were I wouldnt care because it’s nice to talk to people who actually understand what I’m going thru! I’m sure it’s from the epidural.. I just wonder what it did and if it’s harmful. I will for sure let you know what my neuro says (if anything) Lol Quote Link to comment Share on other sites More sharing options...
potsiebarbie Posted January 15, 2019 Report Share Posted January 15, 2019 On 1/4/2019 at 8:04 PM, Jessica_ said: You aren’t babbling and even if you were I wouldnt care because it’s nice to talk to people who actually understand what I’m going thru! I’m sure it’s from the epidural.. I just wonder what it did and if it’s harmful. I will for sure let you know what my neuro says (if anything) Lol Did you see your neuro yet? Quote Link to comment Share on other sites More sharing options...
Jessica_ Posted January 19, 2019 Author Report Share Posted January 19, 2019 On 1/14/2019 at 5:56 PM, potsiebarbie said: Did you see your neuro yet? Unfortunately no, I had my appt written down wrong and I don’t seem him til Feb 19. Counting down the days! Quote Link to comment Share on other sites More sharing options...
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