Genital Erythromelalgia

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1

Hello Everyone, I am a little worried and a little confused. I really do apologize if this statement is a little graphic.

But I would really love your advice and please inform me if you have heard of these types of symptoms in individuals.

From Jan 18 I have experienced red hands and feet with small peeling bumps mainly on my fingers.

This is the embarrassing bit…I also have the same symptoms on my genitals…They get very red and hot and start to burn just like my hands do. Occasionally my ears and face flare and get red and hot too. This all started when I went through a massive amount of emotional stress lasting about 3-4 months.

This happend to me once before when I was 22 I am now 30 I think it lasted a year or 2 and disappeared. This time the flaring is more intense my GP has no idea where to start however he has ruled out eczema or any skin problems. and I have now pushed for a rheumatology appointment. I have found a few articals recently that a type of erythromelalgia can appear in the genital region too.

Following this there have been some success rates following the use of Carvidilol, known as Corag it is a beta blocker that has a massive affect of antioxidants and anti inflammatory properties along with blocking beta 2. It sems to be a very rare occurrence and I feel a little alone and lost regarding this problem.

It is very uncomfortable especially if it flares I just hope I can resolve this issue. I will keep fighting until I resolve this affliction.

But has anyone else heard of genital erythromelalgia? and if stress can cause erythromelalgia as a secondary condition?

Just need a lil hope boost. Thanks guys

2

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.

3

Hey, thanks for getting back to me.

You are a string person to go through all that.

I just wanted to say that carvedilol is a vasodilator and can make erythromelalgia a lot worse :frowning: the same with magnesium.

There are afew different types of erythromelalgia. And obviously the cause can be different for everyone.

I would revisit your medication to see if changing them may help.

Stay positive something will work for you.

I have heard that EM can be secondary to CRPS. Where do you have that located?

4

The CRPS is in my feet. I also have brachialplexopathy on my right arm. I had been taken off Cardevilol by the doctor who diagnosed my EM and he put me on a beta blocker. My allergist had already told me not to go on a beta blocker because the epi pen would not work and also, he said people with bad allergies should not use beta blockers because the epinepherine that may be administered would not work.

My PCP put me back on the Cardevilol because it controlled my BP better. He did this after I stopped seeing that cardiologist who works with the ANS. I had stopped seeing the doctor because he was doing Circulator Boot Therapy on my feet 3 times a week for 45 minutes each time. Boy did that hurt. It also gave me a horrible rash that looked like blood coming through the bottom of my legs. Also, you cannot get out of them by yourself and there were long periods of time where no one was in the room with me. Should something happen, I could not move or get out of them. I am a hospital worker myself, although I cannot work now. I knew how dangerous that was.

Thanks for getting back to me. At the risk of being fresh, how are your genitals doing?

5

For some reason, it changed my name in the last message. I am Stllrng7.

Also about the Magnesium. I do take a break from that for a few days, like I said, but that is for the horrible cramps in my feet and toes and that comes crashing back when I am not on the magnesium, so that is also a trade off. My feet and toes cramp up in an unnatural position and do not move for some time. That is horribly painful. It makes me scream ‘ow’ out loud because it catches me by surprise when it happens and I am sometimes driving when it happens, so going without the magesium is dangerous for me.

Thanks for telling me about those meds, though. You never know when the doctor can find another med that works for me and is compatible with EM.

6

I must say I am doing better then I did when this all first started.

However, it is still here. I believe I may have small fiber neuropathy. From what I am not sure. But maybe healing occurs over time. :slight_smile:

I am on lyrica which seems to help with the pain. I AM JUST HOPING THIS GOES I TO REMISSION SOME HOW :slight_smile:

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What is the basis for the diagnosis of both CRPS and EM and not simply one or the other?

8

My Mom is on Lyrica. She does not have EM. I can tell she is very foggy. That is the only reason I have not tried it. I am lucky, the oxycodone makes me more focused and does not make me drowsy at all. The doctor told me he has seen that in some other patients. Did you get brain fog from Lyrica?

Good luck. Hope you get well and soon.

9

Hello Stllrng7. I agree with Dave000 that vasodilators and beta blockers does make the EM worse, although again not for everyone. I suggest you go on trying for something else sor your bp. I had bad experiences with them. Tried a lot of bp meds and everything aggrevates the EM. A good diuretic is the best the dr trying now to assist the enalapril in controling my bp. Why don’t you try Lyrica and see if it works for you. I am using it from the onset of my EM and a while ago thought it didn’t help until I started to wean myself from it, realize it make a huge difference! It have a bit of sedating effect but your body get used to that and I rather take the bit of brain fog than the pain. No use to try too low a dosage then it doesn’t help. I started on 75mg at night and after a month or so add another 75mg in the morning. As everyone can tell you it differs from person to person. A long and hard road with trial and error for something that gives relief. I feel for you, hope there is some relief for you soon, sleeping is a rare luxury for us.

10

Be wary of taking diuretics for EM. EM for many worsens with dehydration as it makes the body’s cooling system less efficient. If you start diuretics for EM make sure to keep some pedialite or gatorade stocked in the fridge.

11

Thank you for your responses. The diuretic helps the lymphedema.