Hi, my name is mrscowbag! — Scope | Disability forum
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Hi, my name is mrscowbag!

mrscowbag
mrscowbag Community member Posts: 6 Listener
daughter diagnosed with c.p at 13 right foot with osgoodschlatters of the knees and hypo mobility in lots of pain .... just been put on naproxen 500mg twice daily..... help don't know anyone else to talk to .... pain getting worse help

Comments

  • VickyS
    VickyS Community member Posts: 129 Connected
    Hi mrscowbag,
    Welcome to the Scope online community!
    I'm sorry to hear that daughter is in pain, have you been back to the consultant to see if there is anything they can do about it?
    Vickyxx
  • mrscowbag
    mrscowbag Community member Posts: 6 Listener
    been back to see g.p. twice this week ... they now think she has gout in right big toe 2 x
  • Noah
    Noah Community member Posts: 425 Pioneering
    Welcome - sorry to hear about your daughter's pain, I can sympathize, I remember how the muscle spasm pain at night at that age was so severe and totally unbearable. I find distraction, localised pain relief gel, regular baths or saunas and physical exercise like swimming and cycling help with my pain management. The first task is offen about trying to identify and understand the root cause, and then following a treatment plan. I hope the doctors are able to identify the root cause for you, rather than just prescribing pain relief.

    All the very best.


    Noah
  • mrscowbag
    mrscowbag Community member Posts: 6 Listener
    thank you ... hopefully when we see specialist will get answers ..... where u 13 when diagnosed x
  • Noah
    Noah Community member Posts: 425 Pioneering
    I was diagnosed with cp much earlier than 13. Yet I know there are some on the online community that haven't had a formal diagnosis until their 30's or 40's. I hope your daughters diagnosis is helpful and means that she can get the appropriate support and treatment available, to enable her to fulfil her potential and lead the best life possible.

    All the very best


    Noah
  • htlcy
    htlcy Community member Posts: 128 Pioneering
    hi there, sorry to hear about this. I was diagnosed with CP as a baby and have right spastic hemi affecting both my right arm and leg etc. I also have a spinal curvature associated with it and deal with chronic pain so I've tried a lot of different meds/techniques to keep this under control. Naproxen has been helpful to me, but not so much with the pain associated with CP. I recently started on a very low dose of baclofen to help with the CP pain, and this has worked wonders for me (it helps by relieving the tightness in the muscles associated with the condition). It may be worth enquiring about this? I also receive acupuncture on the nhs for my chronic back pain which works well (alongside solpadol, naproxen and other painkillers when needed) and I do know some people with CP who have found acupuncture in their affected limbs useful. If I were you I'd be tempted to ask for pain management; they assess your needs and you can try out a range of things to help, I have had pain management since 13 and it has been very useful; you don't realise what things are out there. Sending positivity and hope she can be a bit more comfortable soon. in the meantime encourage her to keep active (and I know this is hard when in pain) but it will help. Also heat is fabulous for muscle pain (I live with heatpads and heatwraps and thoroughly recommend them) as are hot baths if possible. It might take time but she will get there. Wishing you both the best :)
  • mrscowbag
    mrscowbag Community member Posts: 6 Listener
    thanks hitcy .... am taking daughter back to drs again tomorr she still in lots of pain and swelling back on right foot feel so helpless .... for a teenage she as no life for the pain . seen specialist at hospital now waiting for brain scan as they thing its more than her foot affected .... they have said after brain scan and c.p. confirmed for def she will be offered botox injections or surgery . im quite angry at how long process is taking { 2 years ] and more angry that she had involvement from physio etc when a baby due to been premature and not been able to sit walk etc until 18 months old . she even had to have special boots from hospital then ... asked specialist why it was not picked up then ..... reply was he would need a time machine to go back to when I was pregnant and some case so mild when little they don't show any signs until teens .... just wish I could take her pain away ...ANY ADVISE WOULD BE APPRECIATED xx

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