Rare Disease Day 2013: Tips on POTS and EDS

Living with a rare disease isn't easy. Not least because getting the right diagnosis, treatment and management advice is often a long road.

Technically, I have 2 rare conditions.

One is Postural Orthostatic Tachycardia Syndrome (POTS). The other Ehlers Danlos Syndrome, hypermobility type (HMS/EDS). My POTS is secondary to HMS/EDS so I like to think I only have one condition. It makes me feel better.

Stickmen showing some symptoms of HMS/EDS, used courtesy of www.hypermobility.org

 

The symptoms of POTS: commissioned by www.POTSuk.org

So, in celebration of the day I thought I'd share some of the management tips for HMS/EDS and POTS which I wish I'd been told from the start (and which I hope to include in the new editions of 'You know you have HMS/EDS, and You know you have POTS when...): (They may not apply to everyone, but perhaps they'll help someone)

1. For regular activities, a symptom increase lasting an hour or so is fine. Lasting days is not.
2. Stop an exercise when you can no longer control the movement perfectly.
3. Walking/housework/daily living activities don't count as exercise if done with exhausted flop. They do count if done with good posture & joint positioning, controlled, precise movements.
4. Put the effort into learning to maintain good posture and joint position. It will help with everything.
5. Once you've built reasonable core strength, fidgeting on a gym ball with core muscles super active when watching TV can reduce symptoms better than lying on the sofa.
6. Make tea like a ballet dancer - with controlled, precise movements relying on muscle control.
7. Exercise is very important in POTS. Aerobic exercise is good. All the experts tell you this. What they didn't say is that working on core stability through pilates type exercises would help even more.
8. A relaxed, half lying, flopped position always escalates my symptoms
9. Lying down completely horizontal, or with head below heart, recharges effectively. Going for 'semi-lying' doesn't.
10. Lying down randomly (park benches, low walls etc.) is vital for enjoyable days out. Who cares what it looks like when it makes a social life possible?
11. Manage the little symptoms and one can do so much more - and 'crash out' so much less.
12. Ignore little symptoms, they become big symptoms and take far longer to get under control.
13. Support stockings are OK, but Spanx and professional running tights (e.g. Skins) are awesomely alive-making. So are wetsuits. But wetsuits make you look a bit foolish when worn into town.
14. Cooling vests are awesome.

(Note: this is not medical advice. This is 'stuff I've learnt about my body'.)