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Spastica diplegia in adults

I'm 39 and have a diagnosis of spastica diplegia as a child I had my Achilles' tendon stretched in both legs and my left big toe straightened. I was also treated with splints and callipers on my left leg. As an adult it was discovered my knee caps are too high (practically in my thighs) and dislocate once needing to be surgically repaired. Following the birth of my third child (5 months) I developed tendonitis in my right ankle. I suffer constant pain in both legs and knees, hands and arms which this lump in my ankle is just contributing to. My Drs just seem to fob me off with cocodomal and don't seem to believe how much pain I'm actually in. My mobility is worsening and I'm falling over my feet more because I'm getting tired quicker so my feet turn in more. Sorry for the ramble but does anyone have any advice regarding medication, splints or even homeopathic remedies I'm due back to work in September as a shop assistant I can't afford not to go back and I'm worried about how I'll manage. I just want to play with my two little boys and go shopping with my teenage daughter more easily without worrying about how the simplest of tasks will affect me in an hour. Thank you

Replies

  • RockyRocky Posts: 76Member Listener
    Hi Julie, sorry to hear you are in so much pain and having such difficulties. Spastic Diplegia is a form of cerebral palsy affecting two limbs - usually the legs. I expect the treatment you had as a child helped somewhat but the effects of cp can get worse as you get older but the answer is not to give you more and more painkillers. It might be helpful if you can a) ask your doctor to review your medication explaining that you are in constant pain and this is really affecting your daily living and b) ask him to refer you to a specialist and possibly asking for a gait analysis. Even a referral to the orthotic clinic and seeing if something simple such as shoe supports may help.
    Are you having anything like physiotherapy? That may help. It is hard for disabled adults to get physio on the NHS so you may have to consider paying privately if you are able but it is worth asking. I am not sure any complementary or homeopathic remedies would help with musculoskeletal issues but they may help with pain relief and enabling you to relax.
    Being a shop assistant will, I presume, mean standing a lot which could exacerbate your condition. You should discuss this with your employer and ask if they can make reasonable adjustments. For example, could you sit down to do your job even if it for only part of the day or can they give you different duties which would mean your standing and walking will not be affected so much?
    The other thing to maybe consider is asking Social Services to undertake an assessment of your care needs. Hope this is of some help.
  • helpathandhelpathand Posts: 17Member Connected
    Hello Julie, I have found Jacuzzi's and massage both helpful. My last masseuse also had tendon issues herself so understood. Sadly both cost money. You are pretty amazing having 3 children and working. If you could get tax credits and work less hours that could also be an option.
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