I have it in my hands; feet–the toes and top of feet are the worst, but it goes up past my ankles; face–mostly the cheeks; ears; arms; legs; eyes at times; back at times; and when I sleep, I wake up with feet and genitals–mostly buttocks on fire. I feel like they are literally on fire so badly that I want to run–where? I don’t know, it is just my first instinct upon waking. They are the worst 2 spots when I sleep. So, yes, I have it in my genitals.
What helps? Never sleep. I would do this if possible, trust me. I flare badly in less than an hour of sleep. I consider it a time to rejoice if I make it 1 1/2 hours. Here is what I do, I wear a nightgown without underwear. I do cover myself with a sheet around that area in bed, so I am not flashing anyone. It does help. I try to wear a nightgown as much as I can during the day if I am really bad. I also use a fan and elevate my feet as much as possible and keep my house at 69, although I am upstairs, so it is a bit warmer. I have heeded the words of the folks everywhere and have not used ice or cold water. It does not always happen to my genitals when I sleep if I do the above. In fact, it is much milder when it does.
I also take 300 mg. of Gabapentin, Cardevilol, and Lisinopril. I take Spironolactone, Vitamin C, Magnesium, and a Multivitamin. I take 2 extra strength Tylenol when it is bad and take 600 mg of ibuprofen sometimes, too (although I think this sometimes causes a rebound.) The meds are for various things. I do not take Cymbalta, only because of the horror stories I have heard at various sites, although it is prescribed.
I know it helps to keep my blood pressure down, but nothing helps all the time. The thing that helps the most is the oxycodone I take 5 times a day. It does not work for all 5 hours, but it usually cools things down for a bit so I can think for a while. It also works best on the genitals, but God help me if I fall asleep. It is, however the best thing for the genitals. Morphine did not help unless in combination with oxycodone. Morphine made me feel weird, too. I also take Xyzal for allergies and a small dose of Lipitor.
Once, when I was out with my SIL, and she found out the symptoms I had, she said, “It sounds like an allergy,” so I tried a generic Benadryl. It did help a bit. I see that people take it 3 times a day. I have taken it once or twice a day during a body flare and it does help somewhat. If nothing else, it gives me hope that in a half hour or so I may feel somewhat better.
I sometimes go on a med holiday and stop all but the oxy and BP meds because I wonder if something I am taking is aggravating the EM. I only do this to give myself some hope that something different may help. I also stay hydrated as much as possible. I am sorry if this is TMI, but I know how bad genital flares are and wanted to give you as much information as I have found for myself. I am in no way suggesting this will work for anyone else.
The PM doctor wants to try HBT, but he wants to check around to see if this will make things worse. (Good luck finding some doctors to check around with, I say, but not out loud.) He also wants to do IV Ketamine, but of course, the insurance does not pay for it and it is $500. a pop–it is for the RSD/CRPS which I also have. Good luck.
I am reminded of a joke I heard and used to repeat as a child. There was a woman who pronounced the word ‘aspirins’ as ‘ass burns.’ One day she was shopping and had a horrible headache. She got on the bus and sat next to an open window hoping to get some relief. She went into the bag that contained her newly purchased aspirins hoping to get rid of her headache. As she was trying to open the packaging, the whole bottle of aspirins flew out the window. She ran up to the bus driver and yelled, “My aspirins, my aspirins” (sounding like ‘my ass burns, my ass burns.’ He said, “Stick it out the window and let it cool off for a while.” When it really hurts, I say, “My ass burns, my ass burns, well stick it out the window and let it cool off for a while,” to myself, of course. This helps, as it brings a chuckle of a childhood memory. Although this only helps my mind, it does take the enormity of what is happening down some.
Hope this helps.