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  • #190018
    Sudden Deterioration

    Hi all. Not actually from the UK, I am Irish, but could find no equivalent resource for Ireland. I am 37 and was diagnosed with FSH MD as a child. Thus far, I have lived with the condition very well with minimal disruption to my life as I am a minor case. Difficulty with shoelaces and handwriting has been about it. However, in recent times I have had pains in my right wrist which makes it awkward to carry things or, without wanting to put too fine a point on it, wipe my bum. It was an issue months ago, then went away and has become really bad in the past week. My left wrist is absolutely fine, but I am right handed so I guess that isn’t too surprising. I find it a bit strange that this would suddenly happen in my 30s after living with this so well all along. It could be something else of course but I assumed it was related to my FSH. Has anyone else noticed sudden deteriorations like this? If so, did it persist? and how did you manage it? Many thanks.

    Doniedaff
    Participant
    Posts: 0
    Joined: 01/10/2020
    #190032
    Reply To: Sudden Deterioration

    Hello again. I cannot say I have ever noticed sudden deterioration with my FSH, except when, as now, I get very ill and I get exceedingly weak very quickly. I also have a, so far, unexplained. rash, which when it recurs, does the same thing. I think at this point I should ask if you are under the care of a Neurologist, who could give you much more specific advice on your body. If you are not, then it would be worthwhile getting a referral, albeit expecting a delay because of the virus.
    I gave up on shoelaces a few decades ago when I started wearing sandals. I use the velcro to fasten them to the point when I can take them on and off without bending down. AS I never wear socks it removes an awful lot of complications. As far as writing is concerned mine is getting even worse than when I worked in the NHS. Are you getting physiotherapy at the moment?

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #190052
    Reply To: Sudden Deterioration

    Hi and Welcome to Forum

    I have CMD rigid spine. I have notice that my deterioration comes in 5-7 year blocks. can jog along with little change then have to make bigger adjustments to routine or aids. I have found that I dont recover from injury well. Like yourself I have wrist pain and hand release issues following a sprain that went untreated.

    """""""What doesn't kill you makes you stronger""""""

    Cat Cat
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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