zatchbell322 Posted May 29, 2011 Report Share Posted May 29, 2011 Hello All,As I stated before I am new to this forum and am really glad I found it! I have recently been diagnosed with POTS after a few years of unexplainable symptoms. It took me going to the ER and being seen by a cardiologist to finally get some answers. A little back round about me - I am a 23yr old female. I recently had an ablation to rule out SVT, my DR found nothing to ablate so she has determined I have POTS (After ruling other things out) . I am taking midodrine 3 times a day. But one symptom I have always had and none of my dr's have been able to explain is skin pain, literally I feel like I have a sunburn all over my entire body but nothing visible. It gets so bad that it hurts to wear clothes, especially across my back and arms. Now I haven't spoke to my current dr in detail about this since being diagnosed with POTS. I am going into the dr this week so we will discuss it. Anyone have symptoms like that? Quote Link to comment Share on other sites More sharing options...
juliegee Posted May 29, 2011 Report Share Posted May 29, 2011 Yes, for me that's been a sign of an "allergic" reaction. I get it the worst on my shoulders- feels like a bad sunburn. Wonder what would happen if you took an antihistamine? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 29, 2011 Report Share Posted May 29, 2011 That symptom started for me about 2 years after the postural tachycardia. I have burning in my feet, hands, face and mouth. I also have a strange metallic taste in my mouth. When I get too warm, stressed, or do too much, then the burning spreads toward my torso. There are some days that any clothing feels like sandpaper. Benadryl helps somewhat, but I've tried other H1 blockers and even added an H2 blocker for a few months but got no relief.I was diagnosed with small fiber neuropathy. I've found gabapentin to be helpful, and recently started paxil which helps a bit too. I do find that the better my POTS/pooling is controlled, the less skin pain I have. So for me that means exercising as much as possible, lots of salt and fluids, compression hose, staying cool, and avoiding stress. Quote Link to comment Share on other sites More sharing options...
zatchbell322 Posted May 29, 2011 Author Report Share Posted May 29, 2011 Stress has definitely been a factor for me, the more stress the worse my symptoms are. I think I might be allergic to bendryl. I have taken it twice (within the past few years) for actual allergy things ( runny nose, watery eyes) and woken up the next day feeling terrible - skin pain, fatigue, headache etc. I spoke to a dr I had in the past about it (the skin pain) and he told me the nerves in my skin had created a memory from when I had scarlet fever a few times as a child. This was the same DR that when I told him I was having palpitations lying down and an elevated heart rate he just put me on HBP meds.... Quote Link to comment Share on other sites More sharing options...
janiedelite Posted May 29, 2011 Report Share Posted May 29, 2011 "I spoke to a dr I had in the past about it (the skin pain) and he told me the nerves in my skin had created a memory from when I had scarlet fever a few times as a child. This was the same DR that when I told him I was having palpitations lying down and an elevated heart rate he just put me on HBP meds..."Oh my! I ended up going to a neurologist who is a small fiber neuropathy specialist. He got me into Mayo, but has treated me himself ever since. Quote Link to comment Share on other sites More sharing options...
kclynn Posted May 30, 2011 Report Share Posted May 30, 2011 My son had a very bad phase of skin pain over the winter. If I lightly touched him anywhere he was in agony. That seems to have gotten better, but was there for a couple of months. Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted May 30, 2011 Report Share Posted May 30, 2011 I have noticed that many people on the mastocytosis forums list severe skin pain as one of their symptoms. I am lucky not to have that one. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted May 31, 2011 Report Share Posted May 31, 2011 Is it a burning pain or a super sensitivity? I have cutaneous allodynia:"Cutaneous allodynia: Pain resulting from an innocuous stimulus to normal skin or scalp. The stimulus that triggers allodynia is not normally painful. The pain can be provoked by combing or brushing the hair, shaving, showering, wearing glasses or earrings. The pressure of a single strand of hair reportedly can feel like a jab with a white-hot knife. Cutaneous allodynia is believed due to a transient increase in the responsiveness of central pain neurons that process information arising from the skin. It is commonly associated with migraine. From allo- meaning other + -dynia meaning pain." I only get it when I am having a migraine, but then even the softest clothes feel like sandpaper. Mine is only one sided. Quote Link to comment Share on other sites More sharing options...
zatchbell322 Posted May 31, 2011 Author Report Share Posted May 31, 2011 I've never heard that term before in all the months I have told different doctors. It's more of a burning pain, I think..kind of hard to explain. The best way for me to describe it is a really bad sunburn across my back and arms (sometimes other areas like my stomach and legs too). Clothes and even someone touching my arm makes me jerk away. I have been prescribed meds for migraines but the pain doesnt always accompany them. When I was younger I remeber having the pain when I had a fever, now it is completly random, but always accompanied by other symptoms (blacking out, dizzyness, nausea etc.) Quote Link to comment Share on other sites More sharing options...
abetterjulie Posted July 8, 2011 Report Share Posted July 8, 2011 I am having this tonight. I have had it before, and sunburn is a really good description. I used to only get it in my legs, but now it is also my back and ribcage area. I seem to run a low-grade fever with it. I just checked and it was 100F. Anyone else have that part? Quote Link to comment Share on other sites More sharing options...
lizababy Posted July 8, 2011 Report Share Posted July 8, 2011 Do you mean where your body is cool but it almost feels like your limbs are on fire? That is what I call it at least. I am not sure if it is isolated to my skin. I just know that I will have my house at a cool 68-70 degrees but my face or arms or legs will feel like they are on fire while the rest of my body is perfectly comfortable, almost cold. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted July 8, 2011 Report Share Posted July 8, 2011 If you read up on small fiber peripheral neuropathy it could be that as well. Along with hypotension which usually causes the black outs and dizzyness, sounds also like nerve damage. Skin biopsy for small fiber nerve damage will diagnosis it. The doctor to see is a neurologist, but not a regular one, but one who treats neuro muscular autoimmune disease. There aren't a lot of them, but if you call and ask if they do skin biopsies for small fiber neuropathy, you have one that knows about the condition. Quote Link to comment Share on other sites More sharing options...
Godsgal Posted July 8, 2011 Report Share Posted July 8, 2011 I have gotten the skin burning thing as well and I have the mast cell problems. I wonder if the antihistamine would help you as Julie mentioned. I can't wear tight clothes, lacy or itchy clothes, elastics, and cold icy washcloths help me a lot. Quote Link to comment Share on other sites More sharing options...
abetterjulie Posted July 8, 2011 Report Share Posted July 8, 2011 ...and cold icy washcloths help me a lot.Funny, I have found that heat helps me most. I have one of those buckwheat hull cloth bags you heat in the microwave. Of course, the problem is when it is larger areas! I need to get a body-sized one, lol. Quote Link to comment Share on other sites More sharing options...
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