*I have been writing this post for at least a couple of months, so it is a while now since the really bad itching attacks. It has been quite reasonable and well-behaved over the festive period, i am happy to report! But anyway, here follows an update on a very uncomfortable symptom flare up i have had these last few months… it really has felt like the last straw at times on top of every other symptom i have had during this difficult time…*
I have talked about my itchy skin problem before, see this post (mostly the second half). I did not mention Aquagenic Pruritus then because i had half forgotten about it, and half was not sure it was worth mentioning as a diagnosis in itself, though i explain the basic issues that constitute it. I found some information about it a long time ago and thought that it sounded like what i had, but when i went to the doctors they just said they had not heard of it, gave me some emollient to try using instead of soap in the bath, and that was that.
The last few months the itching has been bad. Very bad. It has been getting gradually worse. Usually it is just a bit itchy after a bath, but if i stick to my routines and rituals and shave my legs every other day it stays more or less under control. More recently it has been flaring up so that i have itching whenever i am in bed, and if i don’t shave every single day (even if i do). It has spread from my lower legs to my thighs and upper arms (where i don’t shave – it is not caused by that) and can be triggered by pressure of lying on the skin. Some clothing (for example putting on socks, jeans) can trigger an attack which can leave me sitting/lying waiting for the episode to end for some time. I would just note here as well that it is widespread pain, and feels under the skin, not your normal little itch that needs a scratch. It is a strange sensation but i am not sure that “itch” really covers how distressing it is!
It was all getting very stressful. This extra bathing/shaving/having attacks in bed several times per day was really dominating my life. There was only one sheet i could lie on in bed that was smooth enough not to create itching and pain, and the others are not exactly rough, just normal cotton sheets! It is often worse in autumn but never this bad, and never with so much itching that seemed unrelated to water. I mentioned it to my POTS specialist last visit and she said it was probably just another symptom of my Autonomic Nervous System not working properly, but she did not suggest anything i could do about it. She said it may be a side effect of my medication, but seeing as it is not new to me (and i have been on the medication, granted at lower doses for over a year with no obvious connection) i was doubtful. I was looking on the internet and rediscovered this Yahoo Group which has a messageboard with others who suffer from this painful itching too: http://health.groups.yahoo.com/group/aquagenicskin/ On it i found some information about research that has been done (not a lot as it is a very rare condition) and found that one found that putting Bicarbonate of Soda into the bath helped some people. I tried it and YES! it has helped me!
It is not the whole answer. I am maybe back to where i was before this very bad period of the past few months. I still need to shave almost every day or it can be worse, and i am still lying on only the smoothest sheets but the attacks are milder and less stressful and long-lasting. I found when i had flu this last week it was worse, i think due to sweat (well it is water, even if i made it myself!) on my legs, maybe that washed away the bicarb effect or just triggered an itch response. Bicarb is alkaline so it may be that which helps, i do not know. I could not read the actual research paper, only the abstract, so any theories as to why it works and suggested amounts to use have passed me by. I use about half a tub in each bath (100g). Of course i cannot shower still, which limits my ability to go anywhere without access to a bath. It is also time-consuming to bath all the time, then lie down for a while and it’s all very energy-consuming as someone with ME. Pain and physical discomfort are very energy-sapping.
I did go to the doctors armed with printed off information about Aquagenic pruritus and hoped to get a dermatology referral, but i only saw a locum and he said i should wait to see a GP from the practice. He did give me a prescription for Capsaicin cream (which i asked to try, based on other research i read). I used it but i am not sure if i used too much or if more experimentation is required (i am not keen!). It seemed ok to begin with. I did a patch test and all seemed well for several hours so i put it all over my lower legs. That night my legs were hot and i had to keep putting them outside the covers to cool off. Even later the next day, when i thought the effect would have worn off i had a bath and it was so painful, like burning! Like bathing with sunburn! The cream’s active ingredient comes from chillies by the way! apparently with regular use the burning gets less, but i am not sure i will get that far. It was a change from itching but almost as unpleasant!
I would still like to discuss my options with a dermatologist. I doubt they know much about it as it is so rare, but they may be able to suggest something. My main problem is that my leg hair seems to be a trigger and I have looked into laser hair removal but it is very expensive. I am wondering how hard it would be to get it done on the NHS! I think it would be hard to justify as a health need, despite the very long time i have had these problems… I do not know how much benefit it would give me until i tried it really. Also the health warnings on the “do it yourself at home” laser machines are frighteningly long and i am not sure i want to risk damaging my skin or making the irritation worse. They also mention vascular problems which i may qualify as having. I need professional advice on it but i do not know if there is anyone who can understand my special circumstances…
I have been to the doctors since, but have not mentioned it as there have been other more pressing issues to discuss and time is always short. I need to make an appointment specifically to talk about this issue, but I am not sure when i will get to it. Probably next time it gets really bad i will move it up the priority list!