As I’ve mentioned in my weekly round-up posts, for the past three weeks I’ve been having a humongous pain flare which came out of nowhere and could be caused by a number of things. It’s body-wide. My back hurts from my neck to my coccyx, my entire pelvis hurts, I have burning muscle pain in my thighs, burning pain in my knees, shooting nerve pains all the way down both legs to my toes (particularly in my calves), stiff ankles, burning elbows, a sore ribcage and burning wrists. I have so many tender (like, fucking ouch!) trigger points that I can’t even count them. I am not a happy chickie.
In respect of hEDS, physiotherapy is the main tool used to prevent pain and injury, but because I also have M.E. any kind of targeted exercise is out of the question. Trust me when I say I tried for a whole year to do gentle physio exercises designed specifically for hEDS and failed miserably as it made my M.E. ten times worse. In the end, even my physio had to admit defeat and told me to not to come back 😉 It’s really frustrating to know that if you could exercise and strengthen your ligaments and muscles it might help but I’m stuck with the situation so I thought I’d do a post on how I personally cope with a pain flare.
Most people’s first instinct is to reach for pain killing drugs, but of course due to my MCAD and the hissy fit my mast cells have at anything even remotely drug related that’s not an option open to me which sucks in every conceivable way. So my only recourse is non-drug interventions.
1. Warm baths
Baths make my skin itch like crazy, but it’s worth scratching myself raw for the relief the soothing warm water gives. I’ve even been known to run a bath at 2am and stay in the water til it’s gone cold. Don’t underestimate the power of a bath. You might like to add a handful of Epsom Salts to the water as it can also help, though sadly my mast cells don’t like that either. I do wish they would fucking emigrate to Australia and leave me alone.
2. Topical pain relief
Despite not being able to take oral pain killing drugs I seem to have no issue with using topical pain relief, my favourite being Ibuleve speed relief max strength gel which is quite effective if you slather it on after a warm bath. My burning knees and thighs, though, respond better to cooling gels and I personally quite like Deep Freeze. I can get both of these with my Tesco grocery delivery and can redeem my vouchers against them, which is great for the Ibuleve gel which is £9 per tube! In the past I’ve also used Weleda Arnica massage balm and found it soothing.
When I was first taped by my physio I thought it was a complete bloody waste of time, but I know better now and it’s actually quite useful during a pain flare. Kinesio tape mimics our skin, stretching as we move, but also helps to add strength to underlying connective tissue and allowing our own muscles and ligaments to relax. I was given Levotape by my NHS physio, but Kinesio Tape Tex Gold is the popular choice if you’re going to buy some (both available on Amazon). I have the 5cm wide beige tape and use a 25cm strip down each side of my spine on my lower back though you can tape any muscle or joint. Of course, living on my own it’s a bit fiddly to apply and get straight so if you’re taping your back you’ll need the help of a good long mirror and there are areas I simply can’t do, like my upper back and shoulders. The only drawback is no matter which tape I use it peels off easily – I just seem to have the kind of skin which nothing sticks to – and despite what you might read in reviews there’s nothing worse than bathing wearing kinesio tape and having the wet tape next to your skin (if it stays on that is, mine usually peels off in the tub). It’s not cheap either at over £10 a roll but for me it’s worth the cost. You can view various taping methods on Youtube if you just type in Levotape kinesiology tape, or there is some useful taping advice for EDS in these slides from Pradeep Chopra which also contains some excellent information on pain.
Just lately I’ve been wearing just about every type of joint brace available! During a flare your joints need extra stability to avoid further injury but braces also let your ligaments relax and heal. I wrote a long blog post on splints and braces, which I’ve recently updated here.
5. Heat pads, cold packs
Being allergic to pain killers I think I would have topped myself without my TENS machine over the years. I have back pain every second of every day but I can take the edge off enough to still be active using my TENS. I didn’t want an all singing all dancing one, so mine doesn’t do muscle stimulation or anything flash. It’s a Med-Fit 3 which has dual channels meaning I can use two sets of pads at once. I use the small 5cmx5cm square pads for stomach pain and the large 5cmx9cm rectangular pads on my back. The only downside to the machine I use is that it doesn’t have a timer. My last one did and it was great if I wanted to go to sleep with it on as it switched off after a set amount of time. My TENS runs on a 9V battery and even though I use it for several hours at a time for days on end the battery often lasts months.
7. Complementary Treatments
Things like acupuncture, reflexology, massage and dry needling are all popular choices for pain relief amongst people with EDS, but sadly my mast cells hate them all (I was bedridden for 3 months after trying cranial osteopathy) so they’re not avenues I can personally pursue. I still thought I’d include them, though, as I know many of you find them useful.
8. Resting, Stretching & Exercise
When we have injury or pain it’s a natural defence for our ligaments to tighten in order to protect the area and while this is important in the short term in the long run it can actually make pain worse. Very gentle, with the emphasis on very, stretching is important just so long as you don’t go overboard which is easy to do when we are already so flexible but will only exacerbate the problem. As I’ve aged stiffness has become a big issue for me and very gentle stretching has become increasingly important.
I admit to being torn on the exercise issue. Bedrest seems to be viewed as the Devil in physio circles, but for me it’s vital to survival and even my pysio now agrees that I need more rest than most everyone else and that when I’ve injured a ligament it will take longer to heal if I don’t fully rest it. So when I’m having a pain flare, like now, I do rest as much as possible for a good couple of weeks. Having said all that, living on my own it’s not like I have the luxury of taking to my bed and never getting up again so obviously I’m still active making meals, doing laundry, taking care of Bertie and looking after my parents!
When the acute phase of a pain flare, or injury, is over I do try my best to walk every day, M.E. permitting. I only usually manage about 20 minutes on the flat but at least it’s something and is as important for my heart, lungs and mental health as it is for my muscles and joints. It’s frustrating to not be able to do more, but I have to live with the diseases I have and that’s all I can manage without making my M.E. worse. Despite doing this short walk most days for nearly a decade I still can’t walk any further, which just goes to show that M.E. has nothing whatsoever to do with deconditioning and everything to do with the fact there is a fundamental problem with energy metabolism.
Despite trying nearly all the above suggestions my current pain is not under control. I’d go mad if I lay in bed focusing on how much I’m suffering, so distraction is the order of the day and I’ll do anything to take my mind off the pain. Crocheting, renting my favourite box sets, editing my photos on my laptop, listening to talking books…….anything so long as my mind is active. It helps more than you’d think and is one of the biggest tools in my pain armoury.
Living with a chronic pain condition is never easy and I’m not going to sugar coat the situation. Pain is never something you get used to and I often think that the older you get, and the longer it’s gone on, the harder it is to deal with as your emotional resources weaken and you just get plain tired. There are days I’m so fed up I curl up in a ball and have a good cry but let’s face it the pain is still going to be there when I’ve dried my eyes and wallowing in self pity is not going to make the pain go away. It has to be managed as best you can and then ignored as much as possible, which for me is the only way I get through. Healthy people who give advice on managing chronic pain need to live with it for a decade or two and then tell me how they’re coping! It affects every waking second of the day and at night prevents you from sleeping when you’re desperate to be unconscious for a few hours break.
It’s probably unrealistic to expect to be totally free from pain when you’re living with something like hEDS but it is still possible to enjoy a fulfilling life. Yes pain makes my photography challenging, especially as I struggle to bend or crouch, but if I manage my pain I can still enjoy my hobby. I try to remain as independent as possible at home though if I were honest I’d employ more help if I could afford it, and I do still force myself to get out and do stuff even when doing so is going to temporarily make my pain worse. It’s either live despite the pain or give up, become a hermit and wait to die and my life is too precious for that.