Cerebral Palsy
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Hi, my name is Welshjayne2021! Does anyone have advice on dealing with Post-Impairment Syndrome?

Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
edited March 6 in Cerebral Palsy
Hi, I’m Jayne and I live in sunny South Wales, with my youngest daughter and my husband.  My eldest daughter and son live with their partners. I have had CP from birth and basically just got on with life until recently.  Over the last couple of years, my mobility has been in decline, not to mention the muscle stiffness, the pain and the overwhelming fatigue.  I have just read the article about “Post Impairment Syndrome” and suddenly, “the penny drops” it all make sense.  My Gp has referred me to a Rheumatologist, but from my research (I research everything) on rheumatoid arthritis, my symptoms don’t fit the bill. Post Impairment Syndrome explains so much.  I would be happy if anyone could suggest ways of dealing this new challenge to my life, I would be very grateful. Thank you in anticipation.
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Replies

  • Tori_ScopeTori_Scope Posts: 5,644

    Scope community team

    Welcome to the community @Welshjayne2021 :) It's great to have you with us!

    Our Specialist Information Officer for CP @Richard_Scope wrote a blog post on post-impairment syndrome, which you might find helpful. I'm sure he'd be happy to have a chat with you about this too!
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  • Richard_ScopeRichard_Scope Posts: 2,871

    Scope community team

    Hi @Welshjayne2021
    How are you? I have CP too and can relate to the mobility decline in the last four or so years. I don't experience fatigue but get the knee pain like you wouldn't believe! To manage this I do lots of stretches and take a magnesium supplement (please consult a medical professional before taking a new supplement), 
    Also, women living with CP can experience more pain and stiffness/spasms during their periods or entering menopause. Ask your G.P. to check your vitamin B12 levels as well. I can see that my colleague has shared the Post-Impairment information with you so I'll share the information I have on Fatigue and Ageing with CP
    I hope that helps you a bit but I'm around for a chat about all things CP.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
    edited March 5
    Hi @Richard_Scope. Thanks for your reply.  I failed to mention in my post that I am nearly 63 and in fact I believe that going through the menopause was the catalyst to my decline.  From what I read, I have been lucky in retaining mobility for as long as I did.  As a mother of 3 very energetic children, I had to keep up. I also became very active my children’s school becoming Chair of the PTA and a school governor for the best part of 12 years, along with running a house as my husband worked full time.  I walked independently, was able to use public transport, and lived life to the full. I very naively thought that I would continue on the way I was.  Don’t get me wrong, I still have a good quality of life, but I am not in control and I don’t like it. I still try to help around the house, but to be honest I am too slow and just get in the way.  I feel like I letting the side down.  My mental health is in my view fairly stable, but I do feel guilty about not being the person I was 10-15 years ago.  That’s why I am interested to know if anyone else feels the same or is it just me.  Thanks, Jayne
  • StayceStayce Member Posts: 681 Pioneering
    Hi @Welshjayne2021

    If it helps, I agree with you (and have also found myself ) that it’s hard dealing with mobility changes, as nobody says this is going to happen and nothing really prepares you for it. 

    I think the GP referral to the Rheumatologist is a good one. I am under a rheumatologist due to my CP - They can help with diagnostics such as scans, ultrasound, nerve testing which will help diagnose post impairment syndrome  and they can also provide intramuscular injections and steroid/ cortisone injections which can help immensely if you’re in pain and/or have any swelling or inflammation 

    Hope this helps
  • Welshjayne2021Welshjayne2021 Member Posts: 85 Courageous
    Hi Stayce. 
    Many thanks for your comments, they are very helpful. I am only being referred to a Rheumatologist because of a trace finding in a blood test. But I will go along to see what they have to say.  At least finding out about Post Impairment Syndrome, makes me feel a little better.  I feel quite guilty about not being able to do what I used to as a wife and a Mum. I told my husband, who has a very sick sense of humour, turned around and said “Well at least we know now, you’re not taking the p###”. As I say, thanks for your help. Hope to speak with you again.
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