Ehlers-Danlos Syndrome strikes again

I had an MRI recently on my hips. There was a choice of either the knees or the hips, as I’d complained about pain in both areas to my rheumatologist. I chose the hips, because they’d been painful for longer. Results showed that the cartilage in the hip sockets is ‘frayed’. This explains the agonising pain I’ve been experiencing for the past few months. It turns out that my hip joints go into the sockets at a different angle than other people. Why? Because of Ehlers-Danlos Syndrome, a genetic connective tissue disorder. My worst fear had been that the pain was due to rheumatoid disease/arthritis, so I should be relieved. The news came as a real surprise. It seems that erosive joint damage caused by RD only affects my hands and wrists at the moment, which is not what I’d expected at all. However, it does confirm that Ehlers-Danlos Syndrome is arguably just as serious for me as rheumatoid disease.

How can I prevent my hips deteriorating? Physiotherapy is the suggested way forward, as surgery is always the last resort where EDS is concerned. Poor healing skin and excessive bleeding are two reasons why I’m reluctant to choose surgery. Another reason is previous operations on my feet have not been entirely successful. Perhaps all the training I did for the fundraising ‘Superhero 5km walk’ several months ago contributed to this problem. On the other hand, it could have happened anyway. At least I know what it is and what to do about it which is all that matters.

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I’m possible, not impossible

‘Realistic goals’ is an expression you hear a lot when you have rheumatoid arthritis. If you are used to being super active every day it takes a bit of readjusting to the idea that you can keep active, but not as much as before. Articles on walking for fitness often cite the figure of 10,000 steps a day as the ideal for an average adult. But let’s face it, how many people actually a) wear a pedometer to keep track of their activity or b) even manage to reach this figure? It’s more helpful to think about time and quality of movement rather than the number of exercises you perform.

Yesterday I attended a session on ‘Exercise and Rheumatoid Arthritis’ which was fascinating. Even though I knew the reasons why it was such a good thing, it was valuable to be reminded that it’s not just about easing joint stiffness and improving the range of motion in a joint, but also about keeping your heart healthy and maintaining bone density.

Another useful reminder was thinking about the different exercise types: stretching, strengthening, fitness and balancing. Out of all of these, apparently there is less evidence around balancing as being beneficial for people with RA, but it’s still worth doing. With stretching, the key is to stretch ‘to the point of muscle fatigue’, starting slowly with a 5 second stretch and gradually building up to a 30 second stretch 3 times a week. Easier said than done, as I have definitely over-stretched in the past and regretted it later on! The physio suggested Nordic walking, which sounds intriguing, where you walk with special poles (a bit like ski poles). Definitely something I’m considering.

Strengthening can be as simple as bending the arm and lifting it up, starting without a weight initially, then moving on to do the exercise with a small weight (such as a filled water bottle). Or lifting the legs one at a time while sitting down.

When it comes to balancing, writing your name in the air with your hand or leg seems a fun activity to do – I haven’t tried it yet but planning to do so this evening! Fitness is an interesting one because I used to run every day for an hour but at the moment that just isn’t possible (swollen knees, painful hips etc). The key is to make yourself a little breathless so that you can still talk to someone for 5 minutes. I think walking up stairs or walking fast is a good way to do this as it’s a low-impact activity on the joints. Doing 30 minutes of physical activity 5 times a week may not seem achievable at first, but when you break it down into 5 minutes climbing the stairs, swimming, or walking 5 minutes down the road, it soon adds up.

Although it’s obvious, it was useful to be reminded to cut down the level of exercise if I’ve overdone it, and to take a day off if my joints are swollen or painful. Not forgetting non-slip, shock absorbent footwear – often stylish these days as well as practical.

I left the hospital feeling motivated to stick with the current exercise plan and to consider trying other options (Nordic walking is at the top of the list). A few days ago, I came across an apt description for the way I’m feeling now, which ties in brilliantly with what I learnt in this session – the slogan ‘I’m possible, not impossible’.

Hydrotherapy

Yesterday, when I went for a physiotherapy session, I was offered the chance to try hydrotherapy. As luck would have it, although there is normally at least a 4 week waiting list, amazingly a slot was available the same afternoon. So I turned up a few hours’ later and got into the pool with the physio and one other female (older) patient.

Being immersed in hot water relaxed my joints immediately. The water was warmer than I expected (about 34 degrees celcius). Our physio spent time with each of us in turn to run through exercises, which we practised on the spot. One of these was ‘cycling’ while sitting down on a special underwater seat; another involved walking from left to right while holding the bar. I have a tendency to over-extend my joints (due to hypermobility) so had to work hard to avoid that. By the end of the session, I was exhausted as you don’t realise how much energy you’re using up just doing what initially seem like simple exercises. At the same time, it was fun and we had one or two laughs along the way.

Although it’s too early to say what difference it’s made, my joints did feel less painful while in the pool and I did feel better afterwards. As I’m waiting to go on another drug (Sulfasalazine) which won’t be for another few weeks (I need to have an MRI first), it will be interesting to see what impact this treatment (and other non-drug options) have in the meantime.

Physio

For the past few months I’ve been having regular physio sessions at hospital. Because I have Ehlers-Danlos Syndrome Type 3 (hypermobility) on top of Rheumatoid Arthritis, this means my legs and arms are more bendy than most people’s. Plus, apart from chronic pain throughout my body, my back feels ‘floppy’ as my core stability (if that’s what it’s called) isn’t great.

The first time I went, I was given a back brace which I wrapped round my lower back. It looked strangely like a corset. Amazingly, as soon as I put it on I found it easier to stand and move around (normally it takes so much effort just to stand still). Wearing it has also helped alleviate lower back-pain. It’s easier to wear out and about in winter than the summer as I prefer to wear it under my clothes than on top!

When it comes to the exercises, I always want to push myself harder. So the physio will ask me to lean against a wall and slide down to a 45 degree angle, rather than 90 degree angle, and hold the position for a few seconds. Another exercise I’ve been doing while making herbal tea is ‘gluteal strengthening’ – in other words, clenching the buttocks. Also walking backwards, sliding each foot along the floor. Using a bottle of shampoo in one hand and conditioner in the other instead of weights to exercise the muscles in the shoulders (deltoids) and arms (biceps and triceps). These are just some of the exercises I’ve been doing. Although at first it doesn’t feel as if it’s achieving much, I know that cumulatively it’s starting to work as I feel like I have more strength in my muscles. Not sure if there’s a definitive way to measure that though.

One hazard of sliding up and down the wall and holding the position is that if you’re wearing blue jeans (or anything with a strong colour for that matter), it will rub off on the wall. This happened when I stayed with my sister for a few days and her boyfriend noticed a vertical mark in the sitting room, saying: ‘What’s that blue line?’ I was mortified as I suddenly realised that was due to my exercises! Luckily we all saw the funny side and it came off easily with water. I’m looking forward to seeing which exercises I’ll be trying next, as I find it helps distract from the chronic pain as well as there being something slightly comic about the whole situation. It really is a laugh or cry situation when you have multiple chronic health conditions, and my mid-year’s resolution is definitely to do more non-medical things and have more fun.