Things here at Team Cheetah HQ are pretty frazzled at the moment. We’re all tired and as such all have some degree of our Ehlers Danlos Syndrome flaring up with a variety of symptoms. It makes for an interesting family dynamic. I am in the worst pain I’ve had for some time having done that radical thing of bending over to pick up a pair of trousers and my L5 (that’s the 5th lumbar vertebra) going ‘ping’ leaving me with pain in my back, legs, hips and knees as well as the wrist, finger, jaw and neck pain that have been lurking for a while. I have always struggled with my Ehlers Danlos Syndrome and pain relief combo – getting the balance between pain levels and being able to function is one that I believe that many EDS patients find incredibly difficult.
For me, over the counter pain relief just does not work. Neither does a lot of prescribed analgesia either. My first line of attack when I’m in pain is Tramadol and at the moment that is barely touching the sides. I now have a choice – either I can go up a level (the Oromorph bottle is smiling at me from the cupboard) and reduce my pain but be fit for lying on the sofa and nothing else, or, stick with the Tramadol but still be at a level of pain that stops me sleeping and impacts on everything that I do.
I still have to be able to do the school run, go to work, drive and function as a reasonably on the ball human being. I can’t afford to take the time off work, miss a meeting about the children or feed the family entirely on ready meals. However, long term pain is tiring, depressing and all encompassing. Although it doesn’t show (apart from the fact I can’t walk very well at the moment) people with Ehlers Danlos Syndrome often have pain levels that others would end up in A&E with. When pain becomes ‘normal’ our tolerance to pain increases – you just get on with it, although that doesn’t mean that the fatigue, anguish and misery don’t go away.
One of the key features of EDS is that epidurals and local anaesthetic don’t work. There is still much research going on as to why this happens – some suggestions are that the body processes the drugs too quickly, others suggest that the pain messages don’t travel through the connective tissue to the brain properly and therefore the pain receptors that are blocked by analgesia just don’t get blocked. There are other theories – if I find a definitive answer, I’ll blog about it.
I can safely say that when having my children, the failure of my epidurals was one of the most terrifying parts of the experience. I didn’t have my diagnosis then so we had no idea why they weren’t working. At the time it was thought to be linked to my Symphisis Pubis Dysfunction (we now know caused by my overly lax ligaments mixed with pregnancy hormones) rather than anything else but no-one could offer any further explanation. I suspect the anaesthetists saw the correlation between SPD and epidural failure but didn’t think there was a further link to anything as it was disguised by the pregnancies. The Cheetah Keeper was born by Caesarian Section with me under General Anaesthetic as that was the only option. It’s also why I have had no surgery under local anaesthetic – I am not prepared to take the risk of it not working!
As much of the time as possible, I try to avoid analgesia. Having spent the best part of 2 years on Fentanyl patches (often used in palliative cancer care to provide a steady dose of opiates over time) and still not getting full relief, I weaned myself of those and everything else and try to work within my abilities. I’m also very keen not to medicate the children all the time.
Neither of the children can have brufen (nurofen, ibuprofen – whatever brand name you use) – it gives the Sealion Keeper nosebleeds and if the Cheetah Keeper had it, his nosebleeds would become significantly worse and even harder to stop. The magical properties of Calpol (paracetamol) are well known amongst parents but if I dosed the children up every time they said something hurt, I’d be constantly at the pharmacy and trying to buy it in by the litre.
We try to use a combination of distraction, ice, limited rest and as a last resort, calpol if the children are complaining of pain. They also know that most of the time, it’s their body telling them that they need to make that bit of them stronger. It’s a really hard balance to get.
For me, well, as the title of the post says, today I had Tramadol (and cereal and a cup of tea) for breakfast. Then some at lunchtime and some whilst the children were having their tea. I’m hanging on to go to bed for the next dose. I’d dearly love to have a stronger dose of pain relief tonight but, with the cruel twists that EDS brings, I can’t – because the Cheetah Keeper may well have another nosebleed during the night (like he did at 1.15am on Saturday and 1.50am this morning) or the Sealion Keeper may well reflux all over her pillow again requiring washing and clearing up of sick to be done in the middle of the night. I can’t deal with my own pain as I can’t risk not waking up to a bleeding nose or not being able to drive to hospital. And even if I did take something stronger, there’s no guarantee that my already flared up body would actually pay any attention to what the drug was trying to do. Ironically, the more flared up I am (and hence in more pain) the less the pain relief works.
Sometimes, I’d quite like a magic wand to make EDS go away.
If you have EDS or Hypermobility, how do you manage your Ehlers Danlos Syndrome and pain relief? What works for you? I’d be interested to know.