sjoh197 Posted March 19, 2019 Report Share Posted March 19, 2019 I have POTS and have had terrible swelling for the past 2ish years and it is really starting to get in the way of my work, my day-to-day, things that involve my hands, or walking. The only time the swelling goes down is when I sleep. My hands also get pink and shiny where they are swelling. They used to have a neuropathic itch when they would swell, but I think my gabapentin made that go away. My feet and legs also really swell, and feel heavy and push against my shoes. I don't really know what to do. I have an appointment with Vanderbilt in May, but figured I'd see if people here have any advice. I attached a picture of my hand since I can't really convey what's happening. It's almost like an allergic reaction to moving. Any suggestions? Quote Link to comment Share on other sites More sharing options...
KiminOrlando Posted March 22, 2019 Report Share Posted March 22, 2019 Have they checked for autoimmune diseases? I'm sure Vandy will if nobody does first. Lupus, Rheumatoid Arthritis, Scleroderma can do that. I'm sure there are others. Quote Link to comment Share on other sites More sharing options...
Claire C Posted October 5, 2020 Report Share Posted October 5, 2020 On 3/19/2019 at 4:59 PM, sjoh197 said: I have POTS and have had terrible swelling for the past 2ish years and it is really starting to get in the way of my work, my day-to-day, things that involve my hands, or walking. The only time the swelling goes down is when I sleep. My hands also get pink and shiny where they are swelling. They used to have a neuropathic itch when they would swell, but I think my gabapentin made that go away. My feet and legs also really swell, and feel heavy and push against my shoes. I don't really know what to do. I have an appointment with Vanderbilt in May, but figured I'd see if people here have any advice. I attached a picture of my hand since I can't really convey what's happening. It's almost like an allergic reaction to moving. Any suggestions? Hi sjoh197. I am experiencing the same symptoms. My hands, legs, face and general body turn red and swell up throughout the day. I had all the allergy tests done as well as autoimmune but none of them presented any issues. My rheumatologist has concluded that it is blood capillaries swelling and flushing up to the skin. Did you manage to shed any more light on it since your post? Quote Link to comment Share on other sites More sharing options...
Muon Posted October 5, 2020 Report Share Posted October 5, 2020 MCAS can do that as well: MCAD Quote Link to comment Share on other sites More sharing options...
Ashc Posted October 6, 2020 Report Share Posted October 6, 2020 Turmeric tea is good for swelling. Also, have you tried hot/warm compress? Quote Link to comment Share on other sites More sharing options...
Claire C Posted October 7, 2020 Report Share Posted October 7, 2020 On 10/6/2020 at 12:36 AM, Muon said: MCAS can do that as well: MCAD Thanks, Muon - will look into this! Quote Link to comment Share on other sites More sharing options...
Claire C Posted October 7, 2020 Report Share Posted October 7, 2020 On 10/6/2020 at 8:15 AM, Ashc said: Turmeric tea is good for swelling. Also, have you tried hot/warm compress? Thanks, Ashc - I'll try the tea. No, I haven't tried a hot compress - I would have thought that would exacerbate the swelling, as I find that heat can be a trigger. Have you found this helpful? Quote Link to comment Share on other sites More sharing options...
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