I was trying to find some real research on costs and benefits of non-medicine therapy (diet and exercise) and it’s pretty much all reliant on assumptions. Also no real follow up. Long term is not two years. Not when you are living with a genuinely long term disease.

For example, the bone loss thing. It’s a mix of factors (very good easy read but very long), but primarily the disease itself suppresses bone reformation- probably to prevent the joints becoming a big lump of bone.

Pretty much every negative effect of the disease is actually the body trying to stop the disease.

~`Low iron count? Iron is used in inflammation so this is a fast way to slow it down

~High ESR- again, clump those red blood cells together so the iron is hidden from being used for inflammation.

~Osteopaenia? endogenous glucocorticoids are released in inflammation, as anti-inflammatories. They do the same damage to bone as the pills we take. (I also suspect it is to prevent joint fusion/deformities. I’d like to see if that bears out but I’ve been impressed with how my accessory bones seem to have been resorbed first.

We also have poor nutrition. Now this is not to say we make poor food choices! here’s the thing: http://joe.endocrinology-journals.org/content/201/3/309.long

Chronic inflammation is frequently complicated by poor nutrition. This is partly due to inflammation directly inducing a highly catabolic state.

And:

It is predominantly manifested by a reduction in lean body mass.

The disease changes our metabolism and reduces lean body mass itself. There is so much focus on how we are less active, but yes, if I look back to my early years I noticed extreme body changes that did not correlate to previous exeriences.

Calcium and vitamin D are important in maintaining adequate mineralization of bone. Deficiency is associated with attempts by the body to overcome the problem by increasing PTH secretion.

Which leads to:

This increased RANKL expression increases bone resorption through an increase in osteoclastogenesis.

Basically there is a vicious cycle of bone resorption to try and make up for lack of calcium and Vit D. And these are first affected by poor absorption- usually due to gut inflammation.

Inflammation related bone loss is an important clinical problem and several approaches have been used in its prevention and treatment. One approach is to try to reverse the underlying mechanisms that cause the bone loss. Exercise and improved nutrition would seem to be logical treatments where reduced mobility and poor nutrition are implicated. Where exposure to therapeutic glucocorticoids is implicated, it would seem logical to try to reduce the dose given or use alternative anti-inflammatory agents. Unfortunately, these manoeuvres are usually not possible due to the nature of the underlying disease.

I love honesty like this. It means I can focus on treatments that work and not waste resources on treatments that don’t.

So basically if I could find a trainer to work with me every day and not only create a training schedule that works but is also adaptive and we can alter it at will that would be great.

The problem is I have no access to a trainer every day.

I have looked into local gyms and looked for specialised trainers. There are none.

At the moment the best recommendation is to just try and stop if you hurt yourself.

Well that’s going back to the driving without a fuel gauge thing. I think I’ll keep sticking to my low inflammation diet (which changes depending on how I respond to it- and it is personal it’s all about what causes me inflammation and that tends to be sticky starches and fats) and low inflammation exercise.

Luckily I live on a nice fairly flat area and I have walking routes that are very short, short, medium, and long. And generally I can tell at each turn if I can go the next distance.

I also try to avoid boosting iron but I do boost protein, B12, and folic acid to help build red blood cells. It’s helped a lot. Like a crazy amount. My anaemia is much lower. This is through diet not supplements.

Very lucky I can do this as I do not do well on red meat or completely vegetarian. Yet others do better being vegan or fully red meat. It really is individual and it really does make for difficult choices if there are reasons beyond physical health that impact your life.

I do prefer changes in what I do over medical intervention but there are aspects to this disease that we have little control over.

Accepting that is a step to finding our best chances. I will continue to try to balance what I can with the tools I can use.

Having constant fatigue is like driving without a fuel gauge.

You can often make calculations to make sure you don’t get into trouble. But in order to do that you need to make calculations constantly- fuel in fuel out is not always a simple measure of how far you go but also about conditions and even waiting/resting uses fuel.

You can make all the best choices but you have to remember everything you do and don’t do. You have to continually check maintenance of everything else to make sure your understanding of fuel use is accurate.

You keep yourself checking for warning signs of getting too low, and sometimes you manage to catch that and sometimes you don’t. If you are lucky you can get to where you need. But you also really dislike calling in emergency services because you know you’ll be told you should have known.

And your disease uses up fuel just by being active. The exact amount varies but it’s also not really been quantified. And it’s not just energy that’s used up, bone is dismantled and absorbed faster than it is laid down.

So yeah. Currently I’m in the I think I have the balance right.