a bad patient

I make one of the worst patients ever. I may only have a BSc, but I have that BSc as a direct result of an interest in biochemistry. My second and third years were basically me trying to get a degree that would help me with forensics (I could see a potential beyond DNA- mostly it would have been for drug testing and pathology but I had that focus.)

So for me my RA was very easy to understand and accept. I studied it. I did my first immunology lab test on blood from RA patients here in New Zealand. It was more than real to me.

So Fibro has been tough. Bu I have been exhibiting ever more symptoms even if some of them have been with me since I was young.

But what has made that hard is not having that same clear understanding of the biological process.

Too often patients are told “you shouldn’t feel this” instead of “we just don’t know why you feel this.”

One states there is no cause, the other that we just haven’t caught up on the science.

But today I just bluntly searched for fibromyalgia tissue sample because that is the kind of study I can trust. At least for finding changes that we know to look for. Studies on perception or behaviour I don’t trust because the interpretation can be so heavily altered by bias. 

And yes. FM patients have higher levels of cytokines in our tissue than controls. I honestly don’t know why it’s only been in the last decade that I can find these papers because I would think it would be where to start. You can find the links in the chain working back to the brain, rather than start in the brain which is so complex. 

And immediately I thought, okay I get this. I can start to look at changes in therapy to match this.

Clin Rheumatol. 2008 Mar;27(3):407-11.
Characteristic electron microscopic findings in the skin of patients with fibromyalgia–preliminary study.

Small fibre pathology in patients with fibromyalgia syndrome
Nurcan Üçeyler Daniel Zeller Ann-Kathrin Kahn Susanne Kewenig Sarah Kittel-Schneider Annina Schmid Jordi Casanova-Molla Karlheinz Reiners Claudia Sommer
Brain, Volume 136, Issue 6, 1 June 2013, Pages 1857–1867, https://doi.org/10.1093/brain/awt053
Published: 09 March 2013

thanks body

So I apparently had a panic attack yesterday. And let me set one thing straight for people who have never had one- it did not spring from stressful thoughts. They came after the physical. It’s very weird and scary. My hands cramped up (just like my toes do regularly anyway) and my legs.)

Anyway. It all started by a whole bunch of really bad timing. I had my usual breakfast. Which is not a breakfast designed for lots of energy. 

Firstly my bus to my destination sat idling for at least 20 minutes. I think it was there early and because it was at the front of the stop we all got on board while the earlier one was later and so we all missed it.

I got to my destination late so was already pushing my limits for the day, the trip is usually only about 30mins but with the added wait it was obviously much longer.

I was going to get a cup of coffee or tea then but thought that I could grab a cup at the hospital as it was next to the blood collection place which was what I needed to do. It was going to be what, ten minutes.

I decided to walk the short distance to get my blood tested after only to find a sign saying they had moved. To a street right next to the place I was just at. It was a short distance down the side street and then down a driveway. 

By that time I was very sore. and by the time I got to the centre I was not really fit for walking- but had no option as I was already out walking. 

Basically if this was The Good Place my test would be this scenario. 

Then there was a good 20 minute wait there as there was one nurse on- people after me left- I was not really able to do that.

So then I had to walk up the street and was going to have a cup of tea, as it was now after 1pm so coffee was a no no. 

But my bus back was pulling into the stop so I decided to put off having food/drink until the bus got me back to the station. So that was another 30min delay in rehydration.

And then lo, at the station my bus home was about due so I put it off again as my buses are too infrequent to just go to the next one. 

But by that stage I was hunched and my ribs hurt and I was not breathing properly. So that’s when My entire body started cramping and tingling. And then at my gp I was just about ready to fall over.

So this is very much what happened almost exactly 6 years ago at DragonCon. It was just a lot more obvious as to the physical cause.

Anyway. I basically got home and went straight to bed.

And I hurt still today. Will be doing more in the way of research again.

the steroid shot has worked

While I wouldn’t say it’s a cure it has helped decrease local swelling to the point I can genuinely test what is going on.

http://www.fprmed.com/Pages/Trauma/Costochondral_Seperation.html

Go down two more ribs and that’s where mine is. I finally was able to do a very gentle test of the hook manoevre and I did at least find the natural edge of the cartilage curve 🙂 And it moves with breathing.

I can even sit upright for a while now :0 Breathing is weird as the muscles that attach to that rib feel stretched and so also feel like they are cramping. So I don’t want to move it all too much.

 

Also that amount of inflammation set of a mini relapse of my RA, and also ummm… inflammation in the abdomen. But I think that has settled as well.

 

Still a long road to recovery. And there is a lot of mixed information out there about treatment.

sigh

I have one of the only, if not the only plugin capable of reblogging instagram posts. But It doesn’t actually automatically do so and I have to set it to pending/draft then edit to “published” because otherwise it just shows the code- my guess is the post publishes faster than WP can add the media and process the information

But at least I know this.

I’m just tired. So deeply tired that I can’t do anything except maybe every two days and so when I have to spend one of those days doing housekeeping type stuff that is a half week gone.

 

The worst part is it’s not really fixable from my end. I have tried electrolytes, I have tried more protein more veges ( Vit C, plus iron, plus Folic acid plus B12 all hopefully working together.)

 

But nothing is helping- this might be the new schedule for my body. The optimisim I felt earlier this year is fading fast. It really is.

So tired again

I try to not be around people (online or off) when I am this tired, and now I have a lovely reminder why- I simply can’t communicate properly. And on the other hand when I am this tired my eyes tend to go dead and I look furious. Actually I look in pain but it is usually read as furious (in the same way a grimace can be mistaken for a smile.)

So it’s just not good or helpful.

But I’m starting to see a pattern to how this tends to lead up to weekends being tiring right now and that’s everything to do with how exhausting travelling alone is. JUst across the city, but with the products I want to buy it winds up using a lot of energy.

So come the weekend I am too tired.

So given there are some events coming up I need to be careful for I will be avoiding all solo travel for a while 🙂

final round of tidying

(it is a happy post, honest!) Managed to go through all my paperwork. Found all the shows I had been in. All the travel documents. What the heck-most was from before I was 25.
I was working full time, doing theatre, training at the gym (a spot of stunt training too), doing charity, and travelling.

I know it is not related. It was a mix of dumb luck (a viral infection and an injury at the same time confused my immune system) but there is also a bit of genetic predisposition.

I get sad when I think of opportunities I could have created or am no longer able to commit to. But holy wow that was a lot of reminiscing and remembering how brave I was. Still am. It’s just the real limits have shifted. So it doesn’t look or feel like it.

But that is not the same as bitter, or resentful. It is here, it is now.

And I am grateful for every single opportunity I did have- taken or not.

fatigue

I struggle to explain how I can tell I have fatigue versus being tired.

It does physically feel like pressure. But I think that veers a bit close to what is said is experienced in high anxiety.

It’s not the same.

This is more like standing chest high in water and trying to breathe. It’s not pressure on the chest, but the feeling of being pushed in all directions, and no matter how deeply you breathe it feels like air is being pushed out. And sometimes that does actually happen.

Much like in water limbs feel strangely supported and heavy at the same time.

 

Why I never ask myself “why me” about my disease.

There is a black hole in the middle of our galaxy, probably in the middle of every galaxy.

Our sun which we need to live also kills us.*

Every living thing either depends on the lives of others or has others depend on them.

There is an electromagnetic dawn chorus most of us never hear.

Some cephalapods can control their skin cells, raising the surface to be smooth or mimic rocks or even ruffled sea weeds. Some create light, and can flash on and off.

Viruses are just short strands of RNA or DNA (fancy!) with a protein sheath. But they can take control of organisms from bacteria to humans.

 

These happen, they are not directed by morality, they happen. There are actions and reactions and we are learning to understand them.

 

And much as I’d love to be able to camouflage myself like an octopus or flash lights like a cuttlefish, I don’t really want to trade places.

 

Knowing the odds doesn’t make me think how unfair, or that it will protect me from anything else horrible.

I do consider myself incredibly lucky. Not only did I get to understand my body on a chemical and microbiological level, but also our origins, and the origins of the universe at university. How could I possibly have the ego to think this was a deliberate or uncaring act?

I also consider myself lucky I did also do that intensive two year course in performing. Extreme wake up call on how unfair people are. People judge, people are cruel, or uncaring. People do favour some people over others, and some refuse to see life outside their own experiences.

It really made me more determined to achieve because I knew the universe really wouldn’t notice. But I also knew that there would be people who would get in the way, and I would get in theirs.That’s enough to try and understand on a level of personal responsibility.

 

We can also be bound by geopolitical boundaries. Access to care is limited to decisions made by people you have never met, by companies who need to make a profit, and by individuals who want to reap what they believe they deserve. The boundary to access my closest hospital is barely two houses and a park away. A park that is uninhabited. That would also have seen me recieve treatments earlier and to have ongoing care. (But that is not to say the care and respect I get is less.)

 

I do though tend to care about others and tend to adopt language that comforts them. I don’t look at others with a cold eye and think, who cares, I know who cares- we do. It is we who determine fairness and parity in our acts.

 

*We need Vit D but the sun also destroys DNA- that causes cancer. UV is also used to sterilise. There is a reason it is so effective? SO it’s a balancing act- and I live under the ozone hole. I have traveled. I have felt the difference in UV levels:

In New Zealand, peak UV levels are about 40 percent higher than in similar latitudes in North America

The Earth is closer to the sun in December and January, […] Low air pollution levels lead to higher UV levels […] In summer, ozone-depleted air moves over New Zealand from Antarctica.

I am fully European, first and second generation here, so my biology is not primed for the environment here. But that low pollution, it sure is lovely.

okay, interesting reading on bone loss

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.

fatigue

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.