Saturday, October 30th 2010

The return of itchy and scratchy… with a vengeance!

One of the things I really miss being able to do is scratch myself! Just think for a moment how many times we scratch ourselves during the course of the day. Well of course you can’t because quite often we do it subconsciously, never bothering to give it a second thought, our minds not even bothering to record the fact. It is only when the physical act of scratching the skin to relieve an irritation becomes impossible, does it rise in our consciousness ,and consequently our list of priorities! Don’t think that itching is a big deal? Okay, the next time you get an itch see how long you can resist scratching it!

Skin irritation and terrible itching has been something of an ongoing saga this year as the disease has slowly but inexorably robbed me of my remaining upper limb movement, thus leaving me helpless. Certain areas of the body seem to be more susceptible than others and recur at greater frequency. Back in April I mentioned the problems I was having with itchy legs, arms and back and how we were trying to combat it with E45 cream which didn’t prove that effective. It was only when we started moving to E45 itch relief cream and Cetirizine Dihydrochloride antihistamine tablets that we started to make some headway in getting the itching under control. We also discovered during my first visit to the hospice that washing in Aqueous cream also had a positive effect in suppressing the itching.

However, as time went by the itching returned, only this time it seemed to be predominantly around my waist and on the underside of my upper legs, normally when I woke up in the morning. First suspect was the glide sheet as all the body parts that were itching were pressed down on top of it. Could the plastic sheeting be causing the skin to heat up? Well we did find that by removing it the itching went down a little bit but failed to eradicate it altogether. The next step was to discuss the issue with my GP again who this time prescribed Doublebase cream and Loratadine antihistamine tablets as alternatives to what I had previously been taking. The thinking behind it was that maybe my body was becoming accustomed to the medication and therefore it was possibly losing its effectivity. Perhaps the trick was to alternate between two sets of medication.

Unfortunately we never got the time to fully test this theory before I was once again admitted to the hospice. Here the problem seemed to become even worse with new areas such as my wrists also becoming susceptible to itching. Some of the itching has been more or less on the surface of the skin whilst others are more deep rooted and at times drive me crazy. The funny thing is most of the itching occurs after I’ve been undressed and on areas of the skin that have been in close contact either with clothing (such as around the waist), or pressed hard against a surface (such as sitting in the wheelchair). As soon as this pressure is released and air can get to these areas of skin once again they begin to itch.

But not all of the itching is activated by relieving pressure on skin. In the case of my lower legs for example the itching occurs as my legs brush against the bed covers resting on top of them. It becomes something of a vicious circle; it starts with a slight itch so I move my leg slightly to alleviate the irritation. This movement causes the leg to rub against the bed sheet which in turn causes the leg to itch even more. And so the cycle repeats and I end up thrashing my legs about until I’m exhausted. So is my skin becoming hypersensitive?

Skin irritation does seem to be part and parcel of having MND judging from the information I’ve culled from forums on the Internet. I’m certainly not alone in this but unfortunately there is no universal answer and everyone that I’ve read about seems to have found their own solution indicating that the problem has its own form of uniqueness, like MND itself, for each person.

Here at the hospice I’ve had an opportunity to try some new medications. Dermol cream was the first one we tried but this didn’t seem to be very effective. Aqueous cream with menthol was a special order product that did prove effective on areas that I was unable to move such as my waist and the inside of my upper legs. However, it has the side-effect of cooling the skin to what feels like subzero temperatures! This in itself can feel very uncomfortable and it would often feel that I had a choice of either enduring about 15 minutes of terrible itching or about the same amount of time feeling absolutely frozen. However, even the cooling action of menthol proved ineffective on the itching in my lower legs as they brushed against the bedclothes.

The most recent strategy, combining a new type of antihistamine tablet that I take before going to bed, and using Dermol 500 lotion when I am washed in the mornings, seems to be yielding the best result so far. I certainly don’t itch nearly as much as I have been doing these past few weeks. Nevertheless there is still a certain amount of itching so the search continues for a treatment that will let me get through the day ‘itch free’.

Mark

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Thursday, April 15th 2010

Itchy and scratchy

If it’s not one thing it’s another lately isn’t it? I seem to be suffering quite badly this week from skin irritation. I’ve no idea why but my skin keeps itching and it drives me up the wall when there is no one around to give me a scratch. The last few nights have been terrible with my lower legs almost continuously itching and all I’ve been able to do is wriggle them slightly against the bed sheet which to be honest probably does more to irritate them. But any relief it gives me is short lived. Other areas of my body such as my back and elbows are even less fortunate as I cannot move these when lying in bed. The funny thing is that there is no red rash visible (unless I scratch it) and the skin looks quite normal. So far we’ve been trying cold damp flannels pressed against the skin which do seem to work for awhile but of course are no use during the night, and E45 cream which hasn’t been very successful so far. I’ve been trying to think if anything has changed such as shampoos, shower gels, bath foam, cleaning agents etc that might cause a reaction with my skin but nothing springs to mind. I tried contacting the MND Connect service today to see if it was something related to MND or something entirely separate. Unfortunately they weren’t much help and just suggested that it might be down to a change of medication (which I haven’t done) and that I should speak to my GP. Searching through the Build UK MND forum reveals a different picture as a number of people have raised the subject of itchy skin although the remedies being suggested are wide and varied. I’ll keep an eye on it over the next few days and if it’s no better I’ll speak to my GP. In the meantime Alli has been out and bought some Eurax cream which is supposed to be good at combating itchy skin. I shall be trying it this evening.

Decluttering

I’ve been having a bit of a tidy up in some of the living room cupboards these past few days as a sort of prelude to rearranging the downstairs and making it more suitable for me to live and work in. Well actually it’s Ann who’s been doing all the work bringing piles of stuff upstairs for me to look at and to decide what to keep and what to put in a charity bag for the local hospice. The whole exercise has been tinged with more than a little sadness as I’ve parted company with part of my book collection, in this case my movie memorabilia collection (I have a fascination with the technical aspect of films and how they are made) which stretches back more than three decades and into my teenage years. Because I’ve had such a lifelong love of books and enjoy reading it feels a little like I’m dismantling part of my life. But then I realise and point out to myself that these particular books have been gathering dust unread for many years and are merely occupying valuable space. I suppose I could of course have somebody put them all up in the loft thus freeing up the space I need, but what would be the point? I then point out to myself that the reality of course is that I simply no longer have the physical ability or most likely the time left to read all these books anyway. I guess I just can’t bear giving things away like this irrespective of whether I would make use of them or not. I think it’s because the material things around us that form our hobbies and interests also partly define us especially if these things have been accumulated over a lifetime. Or maybe I’m just a hoarder; perhaps there are some magpie genes in the family tree! smile_regular

Update on extension

Sue at In Touch contacted me today to say that they would be sending the plans and specification for the extension out to tender today. So hopefully before too long I should be visited by some builders to do their quotes. I’m being told that the return date for the tenders will be 6th May. Finally things are starting to move forward.

Mark

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