…and other things your doctor has absolutely no clue about.
So, I haven’t blogged in a while and frankly I’m utterly bored of social media seeing the same Twitter fights and the same insta-posts of the same people doing/saying the same things over and over like a hellish physio Groundhog Day. Honestly, if there is an afterlife, the ‘bad area’ will be populated by Physio-bros arguing over the BPS model of pain experience while badly demonstrating the bird/dog. But anyway, I decided to offer my current perspective and more of my lived experience as a therapist, movement teacher AND chronic pain patient. There aren’t many of us around who get thousands of followers because generally, we are just out there actually helping people and spending the rest of the time helping ourselves because chronic conditions can be like another full-time job and who has time or energy to add more into that mix!? As an extra layer, women online are still subject to the most hideous misogyny and generally belittled and told to back off even when their experience is far greater… 2023 hey! So, here in the safety of my own space which no one reads I thought I’d update my situation and hope that my experiences might resonate and offer some comfort to those experiencing similar challenges.
Have you been driven mad by the insinuation that exercise is a cure for chronic pain? Have you REALLY questioned your doctor or specialist as to what they mean by things like “keep a strong core for back issues”? Because I have, and I can tell you the truth!
EXERSISE DOES NOT CURE CHRONIC PAIN. Now, you might be reading this thinking thank god, now I can just lay down and stop everything, but no, I’m certainly not saying that. I’m just acknowledging that it is not this panacea of treatment people often seem to suggest. As an ex-dancer and now PiIates instructor I know movement and what it takes to get truly physically conditioned and it’s no mean feat. Add into that mix pain, inflammation and crushing fatigue and you have a real uphill battle with your body. My issue with most of the medical profession is that they often seem to squarely lump the burden of getting better with the patient rather than recognising that these INCUREABLE conditions are no one’s fault and we all have different needs in dealing with them. The last time a rheumatologist said I needed to “strengthen your core for your back pain” I looked him square in the face and said; “I can plank for 10 minutes, what does my time need to be to make the pain go away?”. He fell silent and chose not to respond. So, I politely suggested that a better way to communicate with patients in my position is just to admit there is nothing more he has to offer i.e. TELL THE TRUTH and encourage people to keep moving the best they can. Do not dangle imaginary carrots that infer if we were to just to do a bit more and make more effort then we get better. It’s just not the case. There are no real answers at this point in medical knowledge, so let’s find a coping strategy. People respect honesty and admission of limitations so say it with me: exercise does not cure chronic pain, but it sure as hell helps you to live better, DON’T give up completely!
Wait, I thought you said it’s not a cure, so why bother?? Well, yes, it’s not a cure, but I’m not advocating complete and total immobility. Of COURSE I advocate for movement but we need to be smart about it and, above all, personalise. In a recent online discussion hosted by NASS, the brilliant charity I am involved with, we had a super doctor talking about various options around medication for arthritic conditions. He was very much in agreement that the way medication is heading for all sorts of diseases is in a more personalised way. Remember, that even when it comes for dosages for common medications they are based on the needs of a standard adult male. Women are often underrepresented in medical trials as hormone fluctuations can interfere too much with the data (I have another blog about this so won’t dwell) but it’s not just sex; your blood group, genetics, gut microbiome, history and environment all factor into how you react to medications, so of course we need to personalise where possible. The same applies, I think, to exercise plans. Chronic conditions (particularly inflammatory ones) vary so much from person to person in presentation as well as the frequency of symptoms so nothing is a perfect formula to living well. Obviously, there are the basic common-sense things like keeping hydrated, eating well, no smoking etc but beyond that, it’s a minefield of different advice and often toxic positivity or a sales pitch of a simple-looking answer.
The last time I posted about this topic I had a comment from a random yoga teacher saying “yeah but you know exercise helps right?”… it was just such a perfect example of what happens online where totally unqualified people think they can help but are totally clueless and desperate people who are not getting truthful answers and/or meaningful help from the medical community turn to these folks who offer a “solution”. I mean I’ve seen people offering to “fix” back and hip pain with their 6-week piriformis course, I mean its just madness I don’t have time to rant about that one here but it’s just the tip of the nonesence-iceberg. Be honest, if your rheumatologist had said; “look, I’m so sorry we can’t take this pain away and there is no cure eight now but I’ll offer you everything I have to make your life better, we will keep trying and let’s find what helps you manage.” it would make things so much easier and people would feel less adrift searching online for answers which aren’t there.
Anyway, back to my current situation and the reason for this Easter blog! Those who follow me will know I’ve moved to the other side of the world in the last year, right after buying a renovating a house so it’s been a stressful time to say the least. It was the perfect formula for things to go wrong as we all know stress is a trigger, BUT it also meant I have done much, much less exercise than I usually would. I went from teaching 6 classes a week + a full complement of sports massage clients + regular yoga practice to teaching maybe 2 online classes while trying to find work in a strange land! It’s warmer where I am now but also very damp so it’s been a real adjustment. On paper it should have been a recipe for disaster however my joint pain has been FAR less troublesome… until this week.
My symptoms had been really quite easy to manage with the small amount of work hours + just daily walking about a new city, to the point I even reduced my regular medication for a time before deciding on the very minimum dose I can cope with well. But I had noticed in recent months that I felt much weaker than usual, I felt a bit flabby and quite wobbly standing on one leg where usually this is very comfortable for me and something I know I need to maintain due to the horrendous damage to my sacroiliac joints. Hip stability is always on my agenda so I decided it was time to get back into training for myself and signed up to a local yoga studio. I attended 3 lovely classes in the last 2 weeks and by the 3nd class I already felt stronger even though they have been much more gentle than I’m used to and lasted only 45 mins to an hour. I’m so mindful of my body and not to push it by starting slowly with any new regimen, however that 3rd class on Friday also encouraged a little more stretching and I allowed myself slowly open up just a little more, something totally encouraged in our profession and in the medical advice so it’s exactly what I “should” be doing to keep my disease at bay right? After the class I went to lunch with my partner and commented how I felt pretty good but said “we’ll see about the consequences tomorrow” fully aware it might be quite sore. We clocked off for the Easter weekend looking forward to working a bit more on Monday, but no, it was not to be. Saturday I was stiff as hell, as usual I tried to keep going about my day taking some NSAIDs but the joint pain increased in my lower back to the point I had to rest completely, early night, exhausted. Sunday, continued taking the anti-inflammatories and stayed home, mostly horizontal, in lots of pain which now started to worry me – another early night. Monday I am still in lots of pain and still walking like a penguin, but I’ve been here before, I’m in spasm, I know what to do. Out comes the softer of my massage balls and I lay on the floor giving myself my fail-safe glutes treatment for just a few minutes, gently relieving the tension which felt great! I’m still in pain but I think it will continue to ease so I prepare to go to work and do my usual of feeding the cats but as I empty their water bowl into the sink, while simply standing still, an electrical spasm – like a tazer to the pelvis – jolts me with such ferocity I nearly vomit into the kitchen sink. I clutch the edge as tears immediately sprung forth and my partner runs to my side hearing the yelp, thank god he’d been to the gym this week as he slowly helps me shuffle to the bed baring my full weight on one arm (he’s an absolute hero in these situations and again, thank god it’s a bank holiday and I was not alone).
This level of pain and debilitating inflammation has not happened in a really long time. I’m completely incapable of moving from the bed until the codeine kicks in. Yup, I said it, the dirty opiates I carry with me for this very situation. Before my diagnosis of AS I functioned on 4 x 60mg tablets a day for months at a time (more than prescribed for giving birth). No, I was not addicted and no I do not feel “high”, it enabled me to walk, work and function. It’s incredible that these very effective medications are now being eliminated from so many practices because there have been some issues (particularly in the US due to the commercialisation of the pharma “industry”). Opiate pain medication in appropriate doses WORKS. It works for severe pain really REALLY well and funnily enough, those of us with these incurable conditions really really like being able to function so they are absolutely necessary. Writing this I’m on my 2nd dose today and not able to sit so I’m typing in bursts while kneeling and taking breaks to walk slowly around the apartment trying to stand up normally again. Without this medication to make movement possible right now, I feel sure I would be stuck in bed for at least a week.
Now, thanks if you have actually read this far, I know it’s a lot and I’m not here just to describe how awful this experience is because it is what it is, but I have just one final point to address just to leave you think about: What I am experiencing and how I’m dealing with it is from my perspective as a professional in the physical therapy industry, having 12 years+ experience in dealing with my condition, do everything sensibly and I am STILL really disabled, missing work and in enough pain to need assistance after just a lovely yoga class which was well within my physical capabilities. So, other professionals out there, if you were a newly diagnosed patient having been advised to exercise and this was the result; why would you ever, ever do this again?? And why would your patient take anything you say seriously if your “treatment option” caused this reaction??! How would I cope if I had no proper medication to get me standing up again? What if I had no one to carry me to safety? If I lived alone, had no financial security or children to care for then I would never ever exercise again. Stop telling people in pain they are “fear-avoidant”. We’re not scared of the pain, we live with it daily. We are scared of being completely disabled for a week after a flippin’ yoga class. Whether someone wants to join my Pilates classes, go to the gym or if they are happier just going for walks, that’s OK. Let them do that. We are all different and we need to manage this the best way for us. Yes, some people still run marathons and good for them, that’s fantastic, but some people need to potter round their garden with a supply of tramadol. That’s the reality.
Of course, I know this will pass. I know I’ll be back at yoga later in the week when I can stand up properly again but that’s because I’ve been here before. My disease in incurable and progressing and there’s nothing that I can do about that. But without this knowledge and experience, then I wouldn’t go back and I would be incredibly scared and angry with this situation. What I have to accept is that I will not be doing 3-hour classes on retreat in India again, it’s too much. Not being as strong as I was 5 years ago is acceptable. I need to keep active but that looks different for me now. My goals have to be different and the intensity has to come down and that’s OK. Personalisation is key and people should set their own goals. Your pain will not go away if you can squat another 5kg, you don’t need to be constantly pushing the boundaries. But you do need to stay consistent and your confidence in dealing with these inevitable set-backs really needs that training! So whether you are walking, running, lifting or rolling around on a gym mat, keep at it, at your pace and don’t let anyone tell you it’s not enough.
