It’s pretty fitting that this month is EDS Awareness Month as I’m struggling somewhat with my EDS at the moment. I’m particularly struggling with the pain aspect of having EDS.
Now I’m no stranger to pain, and don’t remember life without it, so it’s not surprising that from time to time it gets too much. The lower half of my body doesn’t work terribly well, and unless I lay down without moving all day every day, I’m causing irritation to these joints whenever they get moved, and that’s if they manage to stay in place! I’m only 28 (for the next month anyway), so although that does seem appealing sometimes, realistically I want to be able to live and see the outside world. I’ve spoken before about volunteering, and this month I’ve had hospital appointments every week so between the two, May has not been kind to me.
I take some pretty hefty pain killers and have done for the last 6 or so years. Before that I resisted until it got to the point that I couldn’t really function properly. Just because my body can and seems to have an obvious dislike of me, I am allergic to anything morphine based. This cuts out a huge amount of drugs that I can take that will actually help. I have Fentanyl, which is a synthetic morphine so I can tolerate it, and I have it in patch form. This means that I can whack it on and forget about it, changing it every 3 days. I want to say it works, I definitely noticed the difference when I cut it out for a year especially with my back, but I know that my body can only cope with it up to a certain amount. At the moment I’m about one step away from being at that limit, so I hope things start to improve rather than get worse. It’s not something that can be used as a quick short term fix, it’s an analgesic that your body needs to get used to, and will not enjoy being taken off quickly. The side effects are horrid. My gums bleed, I have unstoppable mouth ulcers (one christmas as few years ago I had upwards of 30 ulcers), my hair has turned white blonde and the worst one – I have lost my memory. I’ve done a blog post on my memory before which I will link here, but I am off for a head CT this week to check that it definitely is the fentanyl and not something more sinister. The thought is that the way that my body metabolises the drug has affected the way that my brain stores things. It’s relatively rare, but not unheard of and hopefully there will be something that can stop it from getting worse as it’s unlikely to reverse the damage that’s already been done. I’ve lost a lot of childhood memories, my short term memory doesn’t really exist and I’ve stopped being able to understand the meanings of words, or the lots of the words themselves!
Interestingly, during rehab in Stanmore (see previous post), we had a talk on drugs and they mentioned that EDS sufferers tend to metabolise some drugs differently to other people, causing them not to work as well or even causing more pain. Now, I’ve gone through all my notes from being there and searched the internet but I can’t find the research to back this up, or which drugs in particular they might be but I have a feeling it was paracetamol/morphine or something similar to that. If I manage to find anything I will definitely add it in later.
As well as the fentanyl, I also take a couple of drugs that target the nervous system. I appear to have some pretty dodgy nerves going on in me, they aren’t always in the right place and fair few of them have been damaged into not working either by dislocating joints or surgical error. These are called Duloxetine and Gabapentin. I’ve tried a number of others, but not got on well with them (can you see a running theme!?). I’m on the maximum dose of both, so there’s no going higher! They give me just as nice side effects – I get the shakes with the duloxetine and the gabapentin has left me with a weight gain, nausea and headaches. Although the fentanyl seems to even out the weight gain so they work well together from that point of view! I think it’s because the gabapentin slows my metabolism, while the fentanyl speeds it back up so I am normal with the two of them back together, huge when not!!
Another form of pain killer that is widely used with joint and ortho pain is local anaesthetic. On numerous occasions I’ve been given a local anaesthetic in to the joint while having another procedure that’s never worked and now I know why. Research has been carried out and has found that some people with Hypermobile EDS find that local anaesthetic has an insufficient effect on them. I’ve not found out the reason for this, but I definitely understand!!
EDS is often referred to as an ‘Invisible Illness’ because sufferers can look like there’s no problem. I’ve been told I can’t be that bad because I’ve got make up on (?!). But usually it’s because we’ve got really good at hiding how much it’s hurting inside and trying to think about other things while staying positive. The cocktail of drugs that they’re taking might be working and they don’t feel too bad. But then other days those drugs just aren’t strong enough and we need a break.
So at the moment I’m struggling. I can only liken some of the joint pain to imagining a chicken leg being pulled off a chicken carcass over and over again. That’s what it feels like is happening inside right now, and I appear to have a knife being gouged up and down my lower back too. But hopefully in the next couple of days things will begin to get better, and I’ll be ok again.