Pain in Noonans Syndrome and its management. A patients perspective.

Pain in Noonan Syndrome and its management. A patients perspective

I am in pain all day every day, but I have learnt to cope with it. I feel the following have helped me manage the pain as best I can:

  • Having a good pain regimen is paramount
  • Having supportive Doctors (both GP and specialists) who you can call upon in a crisis or exacerbation.
  • Having a good PMA (‘Positive Mental Attitude’)
  • Understanding my condition whether it be NS or anything else.
  • Educating my Doctors
  • Being an advocate for myself – and push to get the medical care you need.
  • Meeting others with the same condition, or using the Internet for communication
  • Having a supportive family and friends.
  • Never give up!

Pain Relief Suggestions

  • Drench a towel in cold water and microwave until hot (keep checking every 10 seconds or so). Microwaves vary, so make sure you keep checking. Using kitchen tongs, grab the towel and put it inside a dry towel (or even 2 if it is too hot with one towel). Put this ‘pack’ on the back, joints or muscles. NB: Please check with your physician that this is safe for you.
  • Good old Hot Water Bottle and any warmer ( I like the pack where you click a metal ‘coin’ inside and within seconds, it heats up, and when finished, all you have to do is boil the pack, let it cool, and then you can use it again)
  • A hot bath can do wonders (but be careful if you are using pain relief patches as the heat can affect the dosage going through the skin)
  • Simple stretching exercises (I got mine from my physiotherapist)
  • Getting up from sitting regularly. At work, I used to get up every 10 minutes or so, just to walk around.
  • If your hands are a problem, and you have an office job or a job which involves typing and using a mouse, I found a TrackBall mouse to be of great benefit and an ergonomic keyboard.

Swimming is great to relax muscles and is gentle on your joints. I like a pool which is a little warmer than most, as I find the normal temperature of pools makes my pain worse.