I hurt.

Like, a lot. In a lot of places, a lot of the time. My neck, my shoulders; those are normal and those have been problems for me pretty much forever. Which I have always assumed is because my spine is no pulling it’s weight, so to speak, and my muscles and trying to compensate. But muscles are not designed to do the work of bones.

Over the last year or so, the catalogue of body parts that hurt on a regular basis has expanded considerably. My hips and lower back and gluteal muscles have become a pretty much permanent fixture in the list. It is not unusual to wake up with them already aching. There is no bounding out of bed ready to greet the day with enthusiasm and energy. I carefully sit up and prepare myself to stand and get a supporting hand-hold on the bed or the windowsill. And then with a soft grunt, I do it.

I rarely bend to do something now without first bracing myself on something first. Where I used to move between tasks every while to stop things from getting stiff, I now move between them because the resulting pain has reached a “I can’t quite ignore this” level. When it is a particularly bad day, the pain radiates from my lower back down to my calf muscles. Did you know you could get knots in your ass? Not cool. The sides of my hips are tender because of something the physio tells me is called bursitis. He does a thing to help loosen all the tissues around the side of the bone there, but that in itself is not particularly pleasant. He puts deep, firm pressure onto the tender points which makes me sick my breath in and concentrate to keep still. Afterwards, it does feel better, though. I can walk for a little while without every step causing tendrils of shooting pain around the sides of my hips and my lower back.

The hips are the worst, but my upper body has weakened too. Reaching up or trying to lift heavy things is a thing of the past. We got a new microwave and I could not carry the box up the stairs. Stephanie did it. But not that long ago it would have been something I managed with ease.

So I have been noticing this happening and also noticing that many of the people in the Scheuermann’s Disease groups I am in on Facebook have similar complaints. So I have tried to keep moving as much as possible without making things feel worse and been thinking that basically I have reached the end of the relatively complication free time I have enjoyed up til now, and these are the result of a body trying to compensate for it’s main support structure being not quite right.

The number of things I struggle with now and the number of things I can’t do that I used to be able to do is overwhelming and dispiriting when you think about it in great detail. I am struggling to manage with the normal household tasks involved in being a mother and wife. Even ignoring all my head problems, the prospect of being able to find some kind of external employment that generates income but does not generate pain and exhaustion seems impossible. What can I do when I can’t stay in any one position for more than a quarter of an hour without the pain ramping up to the non-ignorable level? And so I made a choice to try applying again for the DSP. I have found out a lot more about the inner workings of the process and discovered that you must have professional documentation for basically every type of task you cannot do or cannot do without pain or can only sustain for a short time. (They don’t tell you this though.) So to begin with I went to see the doctor. I thought maybe getting an updated x-ray would be a good start. (They don’t like medical data older than 2 years apparently, and the last spinal x-ray I had was in 2015.)

Except.. once I described all that I have had happening and the ways in which I have become weaker and unable to do things normally, he said.. “Well, wait. I don’t think this is necessarily to do with your back. The symptoms from the kyphosis shouldn’t cause you that much trouble and not that quickly. Sounds like something else is going on.”

He has ordered a bunch of tests for various auto-immune/inflammatory/jointy type things. I have to go back to see if they show anything.

I really don’t know what to expect. See, a common and almost universal thread through the fb groups is that people are struggling and having similar types of problems as me but when they try to speak to a doctor about it, the doctors invariably say, “..but Scheuermann’s shouldn’t be causing that type of pain.” And they are basically dismissed as being whiny hyperchondriacs and left to continue struggling with the added bonus of having their experience invalidated by the people they go to for help.

So it would be great if his tests show up something that could explain this rapid decline into decrepitude that I am experiencing; but a large part of me is really expecting that they won’t, based on the experiences of hundreds of others in the same boat as me. I do understand that a correlation does not equal a causation and just because we all happen to have SD and we all happen to have debilitating pain in similar places does not mean it is caused by the SD. But I also believe that when there are a lot of people with the same condition reporting the same experiences, hearing “but it shouldn’t” does not cut the grade, ethically as a medical practitioner who is essentially telling the patient “my books say differently so you are wrong, go away,” nor scientifically – when patterns like this can be seen but not explained, they warrant investigation. But each of us around the world see our own doctors and they don’t see the patterns and probably don’t have the resources to make research happen, anyway.

And even if the tests do show something, that is not a guarantee that it could be fixed. Sometimes I envy those people who have had healthily uncomplicated lives and who have the untarnished belief that when something doesn’t feel right in your body, you can go to the doctor and they will fix it for you.