got mine diagnosed 1.5 years ago after 6-7 months of going in and out of hospital at a non specialist hospital...
For me it started out with a 1x1 cm wound on the top side of my foot, i went to the doctor who tought it was an infection so she gave me some penicillin.
7-8 days went by and nothing happend, didnt get worse or better until one evening, where my leg swelled up to like 2-3 x size, and the wound grew from 1x1 cm and 2mm deep. To 7x7 cm and 5-6mm deep. That took like 12hrs and i had never seen anything like it, so needles to say, i was scared out of my mind=)
Next morning i got a hold of the doctor, who got me shipped off to the hospital, where they threated the swelling in my legs, and gave me more penicillin or something simmilar via drop, as they kept insisting it was an infection.
3 months later(without any proper pain treatment) and lots of horrible painful trips to the emergency doctor, where they insisted i keept taking penicillin, my own original doctor who had been sick for the last 3 months finally returned. He got me into a dermatologi part of the hospital, for treatment and diagnostics...
Sadly in hindsight they had little idea what they where doing, first they put me into full sleep to be able to do a full scrub down of the now 4 wounds on my right leg. I later found out that is pretty much the worst way to go around cleaning the wounds, as the trauma caused can cause the pyoderma to into overgear. At the same time we discovered that the 3months treatment of penicillin i wrongly got(was never infected) had caused me to develop allergies, wich showed its ugly face, with me beeing nearly unable to breath for a good 40min after waking up. I know now they had it all under control, but when like 6-8 nurses and 3-4 doctors are looking STRESSED and talking about stuff like a respirator, and all you can do is gasp for air and whisper spit, whenever you coughed up something unpleasent, its pretty scary=)
Anyway 2 hospital stays later they gave up on finding out what was wrong with me, and send me off to one of the specialist places in Denmark, for such things. I got scheduled for a 1-2hr exam, so i only brought stuff for such. But after 2-5minutes into the check up, the main doctor there told me, that i should not expect to get home in the next 4-5 weeks. Based on his experience it took him about 10 minutes to be 99% sure of what I had. And he immedietly put me on prednisolon, where i started out at 50 or 60mg a day.
So just about 6month, 4 attacks and A LOT of wasted time and frustrations im finally in treatment, and it worked so well... in 5 weeks my wounds where nearly gone and i was down to like 25mg of prednisolon a day. However due to the side effects i gained 25kgs, got acne terrible bad in my entire face, and was barely able to sleep(1 week i had as little as 6hrs). And thats only a few, but must note worthy side effects from the prednisolon, and dont even cover the about 10-12 other drugs i was getting. =)
3months after i got home, we swapped over to something called sandimmun instead of prednisolon, the advantage here is WAY WAY less minor side effects(such as acne, weight gain, sweats and so on, that prednisolon has). That has for me worked quite well, the only problem is that we cant quite get rid of the wounds entirely. Everytime they are nearly healed it seems like something goes wrong. The last 0.5 cm of healing seems 10x harder then the first 5-6 centimeters. Something that is quite frustrating=)
Im now hitting the 2 year mark for the start of all of it, i have 2 out of 4 wounds left, and a VIP pass to the clinic that handles me=) so everytime it goes wrong we catch it fast, react properly and stop it before the wounds manage to get really big again. I had a treatment for the acne, so thats all gone now(YAY). And on my own effort i lost 35-40 kilos, going from 115-118kilo down to into the 75-80kile range, wich i more fitting for one my size=)
I still struggle a lot with my back and knees, the long time i went undiagnosed, and in heavy pains, forced me to limp around, wich overworked wichever leg was forced to carry the xtra wieght, and the bad posture you have when walking like that caused my back to go bad also. Weight loss and now regular weight training is very slowly helping that tough.
So fare we havent found the underlying illness(such as crohns) that often cause it, and thats despite having had x-rays, ultra sound, many 100s of blood and urine samples taken, also the one where they poke a needle in your back for a sample from the spine or that area atleast. Also had the one where you get a camera up, well where the sun dont shine. Everything comes back negative or at most could be, but most likely aint ansewers. At the moment im waiting for a test result from the one where you swalling a tiny camera that checks your small intestines. So lets see.
More specifically to the OP, my pyoderma has also been very painful, random but painful, i could have 12hrs with 0 pain and then it would go off the charts... where it hurts like mental for 5seconds and then not at all for 5 seconds... was so bad it could make my leg cramp up at times. After seeing the specialists, i was put on 30mg of depo morfine(long working), and up to 30mg of fast working morfine i could take as needed. Both in 3x10 mg tablets. That was able to take the egde of it, but the key is really intensive wound care... We use something called Emla(atleast in Denmark) wich is a white creme that numbs the area its applied too locally, allowing the home nurse to actually remove all the stuff that aint supposed to be there.
Over 75% of my pain goes away the second we get: The attack knocked down and the wound cleaned up.
During the attacks I found that if i was able to apply pressure with the back of my other foot at just the right places, i could sometimes subdue the pain quite a lot, atleast short term. Also if it was really bad i would sit up and sleep, because for some reason, going from sitting up to laying down, makes something happend in your foot that hurts like ****.
If you like me also have a lot of problems with your foot/feet swelling up due to water getting trapped in your legs, getting rid of that with compressions should help also. I have compression binds or compression socks on every minute of the day im awake.
In the early phase where i didnt have pain killers or any small tricks to try, my only 3 solutions was: A: distraction B: lay crying in my bed C: plain and simple alcohol. Cant recommend 3 tough, but i did use it on rare ocassions.
anyway i think i just made a pretty bad wall of text, and as im not native in english it might be xtra messy, so ill stop here and if you need me to retype something more clearly or have questions ill continue there=)
... Hugs
