I have (at last) been to see the dermatologist. I have a diagnosis of Physical Urticaria (PU). I have blogged about my itching before (first time nearly a year ago, as well as here, here and here) and thought i had Aquagenic Pruritus. I asked her about that and she was a bit dismissive and seemed to think it was pretty much the same thing, or was covered by PU. Well, at least i have a diagnosis of some kind and not just one i had to work out for myself due to GPs being dismissive for many years. Maybe i should have been more assertive, but after you tell a doctor about something and they tell you there is nothing to be done, it is easy to not try again, especially when you have plenty of other health issues vying for attention and you already feel like you annoy them just by talking about more than one thing at a time.
Anyway, things got so bad i had to get help and my POTS specialist was the one to refer me in the end. It took 4 months to be seen, and they have been a tough four months. When you wait so long for an appointment about something so painful and distressing you cannot help but build it up into a day of massive expectation, hope, fear, etc. I knew it would be a let down and that rarely do doctors engage in a way that reflects the severity of the problem, nor the traumas suffered in order to get to the point of seeing them. But it was ok.
I have been given some anti-histamines to try. Some non-drowsy for the day and some drowsy ones for the night. She did not engage with my existing conditions, even when i assured her i was used to navigating the mornings from a drowsy point of view already (no i won’t operate heavy machinery – like i could!). The fact that no-one (medical) has ever thought to suggest anti-histamines before shows how little attention this problem has been given in the past. In reflection this annoys me and maybe i should be making more of a fuss about other long-standing problems! I tend to just focus on the most pressing issue at any one time, but still i seem to be forever attending appointments. It is a hard balance and i don’t want to be labelled as a time-waster, nor do i want to be jangling full of more medications than i need to. I have taken antihistamines before but only as sleeping tablets and probably too sporadically to notice any difference, so hopefully I have been wrong in thinking they won’t work… the dose I have been given is certainly higher so we shall see.
There was no discussion of why I was getting this so badly, or why it may be worse now. I asked if it could be connected to my existing conditions, she said “maybe”, in an “I don’t know or care” kind of way. I notice that in my previous posts I have talked about increased pain of other types at the same time as bad phases (bladder discomfort, muscular pain, skin tenderness and feeling bruised/tender in many points). This still holds true for me and i cannot believe there is no connection. The POTS specialist wondered if the Midodrine was making it worse. No answer on that from the dermatologist who could not even find it in her book of medications to check if safe for me to take antihistamines with it. We assumed it would be fine.
She seemed surprised the Capsaicin cream has been helping me but it’s not something she recommends to people, so i have to stop that. I am a bit wary as it is the only thing that has got me through the last month or so. I still itched with it, but it was much less frequent and intense. I hate it actually, it’s burning nastiness, but it was all that worked and better to have a nasty burning pain sensation when awake already, at a time of my choosing, than an itch attack when trying to sleep!
So, i have to go back in 6 weeks to see how things are. I really hope i can tell her that it is working. I hope i can be sleeping on any bedsheet from the cupboard not just the one that is the oldest and smoothest that doesn’t wrinkle under me so much, that i can shower (yeah right – i can’t believe that could happen after all these years!), that i can pull on socks in a carefree manner, let my leg hair grow, or shave it off and have no consequences either way, that i can have a cool bath/shower, have a bath without adding bicarbonate of soda, that i can allow drafts to run up my PJ legs, not have to rub in capsaicin cream three times a day, lie on a lumpy mattress without sweeping all the grit out of the bed before getting in and have no pillow between my legs, not have to jump into my PJs and dash to the toilet in the night to try to avoid too much temperature change to my legs, that i can get out of the bath and dressed and “go” rather than lie in bed for ages afterwards waiting for the itching to pass, that i can allow dead skin to build up and not bother moisturising, that i can scrub at it gently to exfoliate it without fear, scratch randomly without major over-reaction from my skin, use any soap or bubble bath I want, never see any emollient clogging the plug hole again, wear fabrics other than the smoothest ones, wear knickers with bulky seams and lie on my side in them, go and stay somewhere other than home without fear of all the above factors making it a trauma, and live without wasting energy on all these things and the exhaustion caused by stressful pain and disturbed rest/sleep. I wish. I hope. I really don’t believe it can be this simple, but i hope these tablets work.