Tag Archives: chronic pain

Let’s get ready to rumble

I’ve been a bit quiet on the writing front.

Despite the fact that I schedule 1.5 hr every week to ramble, edit, find a good pic and publish, my unexpected and sometimes tumultuous life just gets in the way.

I also do a lot of marinating (and perhaps procrastinating).

What I’ve read. How I’m feeling. The latest blood test results. What the naturopath is suggesting. What the latest science journal says. What the latest podcast proposes.

The next holiday. The next bike ride. Will I ever be able to do more than 20 mins a day? Will I ever enjoy the freedom of hiking faraway trails, pitching a tent and for a moment, just be there…in that space.

Boxing girl_Canstock

And then I have to remind myself to stop the nostalgia shit. It’s not helpful.

Today is different. From yesterday. From last month. From last year. From August 27, 2012.

My ever-evolving auto-immune world, continues to spin on its merry axis. It would be nice to know where to next though.

Confirmation that I have HPA axis dysfunction, bordering on Addison’s disease. Yet more labels. More tests. More peeing in funnels.

I’ve basically fried my brain’s circuit board that controls the messages to my body to manage hormones. In its crudest term the 4 S’s are completely out of whack – sugar, salt, sex and stress.

Was it all the steroids I was given to control the severe bouts of inflammation or was it the enormous stress driven by the need to achieve, perfect and be seen?

Was it the perpetual flight/fight response turned on early in my childhood? Was it because I never felt safe, until my mid-30s, to put down the armour?

It doesn’t really matter, but it does explain some basic physiology and the development of dis-ease. No testosterone, too much progesterone, a spluttering and spurting thyroid, layers of endometriosis and simply not enough cortisol.

What a relief!

No more beating myself up over that second soy latte at 3pm, which can be bad for most people, let alone those with various auto-immune disease.

My body simply doesn’t create enough get-up-and-go over the course of the day, so right now I’ll keep investing in my local coffee haunt, which Franki doesn’t seem to mind either.

It also explains that when I push that little bit more, don’t give myself enough rest over the course of the day, run from one thing to another (99% of the time in my head), or have a crap night’s sleep, I can guarantee I’ll wake up to aching hands, grinding knees and an overall feeling of heaviness. There are days where I can even feel the weight of my eyelids and every single blink.

On those days, it’s simply a case of cause and effect – I’m spending pennies I don’t have. And then I remind myself.

This makes sense.

Because the most frustrating part of the last 2.5 years hasn’t been the multiple diagnoses, the furrowed brows, the experimental drugs, the grinding pain, the overwhelming fatigue, a life that has changed.

The frustration was that it simply did not make sense.

I couldn’t see a pattern. I couldn’t manage my day. I was fighting wildly, valiantly…but blind.

It’s a slow, painful and frustrating experience (call it journey if you’d like).

It requires patience I didn’t know I had. And patience I didn’t think I could muster. But then I heard the definition of patience from a 4 year-old, “Patience…wait & whinge.”

Yes, I’ve spent a lot of time waiting and even more time whinging. Because sometimes you’re waiting for the light to turn on, for a chance to put on the gloves, prepare yourself, so the fight is fair.

Upfront, in your face, visible.

But most of the time it’s not.

So I guess I’ll just need to learn to swing, duck and brace at the right times. And if I can’t see, and I don’t know where to aim, I’ll need to learn to feel and to sense.

Perhaps even trust myself. The innate. The gut feeling, once again.

And when I go down…at least I’ve already learnt how to get back up.

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In my Head

I spend a lot of time in my head.

Observing, synthesising, debating and concluding. All by myself. All in my head.

I’ve always done it. I don’t know how not to do it.

I put it down to being an only child, where there was no one else to share my thoughts, or the scenarios and debates I created in my head. My parents were hard working migrants, trying to put food on the table and provide their first and only born with the education and opportunity to achieve and succeed.

I’m sure as a creative child, those thoughts would have been fanciful and self-deluded. After all, there was no one to point out the flaw in my plan for schoolyard domination. I developed resilience via a steep learning curve.

Adolescence did not change my modus operandi, particularly as my parents went through an ugly divorce in my pre-teen years. The arguments, the late night whispering and the removal of my dad’s clothing into 40L plastic bags were all observed, recorded and filed away…for future reference.

My young brain recorded that trust and intimate relationships are fraught with danger.

Now as an adult, happily ensconced in an intimate relationship that looks nothing like my parents’ or anything else I had witnessed or imagined, I still find myself spending quite some time in my head.

Observing, synthesising, debating and concluding.

And in dealing with undefined auto-immune dis-eases, I find that I spend more time retreating, in my head, wondering how did it all go so wrong? What can I do to stop it, reverse it, halt its progress?

I’ve spent many hours googling down the rabbit warren, coming back more overwhelmed than clear. I’ve read books on neuro-plasticity finishing them with great hope that my brain can repair itself from the chronic fatigue short circuit and my short term memory will return.

I’ve scoured the latest journal articles on lupus research and the effectiveness of rituximab and the latest in immuno-suppressants. Hoping that pharmaceutical companies will add another drug option to the market, given that it’s been over 40 years since the last dedicated lupus drug.

I’ve struggled to find any information that could explain the importance of testosterone for females, and why my pituary gland is malfunctioning, without having to enrol in a degree in medicine. Although I suspect I have the first year of theory covered.

I even had my hopes raised when ABC’s Catalyst program, did a story on testosterone, but it was short lived as they chose to focus on middle aged men and menopausing woman. Because it appears that the sex lives of baby boomers, deserves more research and funding than those living with auto-immune disease.

I’ve fallen in and out of love with meditation, struggling to find a routine, a niche, a regular space in my day. Started drinking kefir daily, and once I got past the tangy and surprising effervescence of my coconut milk, my gut started to thank me immediately.

My yoga practice ebbed and flowed, largely due to the instability of my spine as the arthritis of my sacro-illiac joint decided to stand front and centre in 2014.

It started as a niggle, but ended with another red flag on my littered path.

The pain in the dimple of my left glute, my left knee giving way as I walk Franki to the café or try to manage the 45 stairs to freedom. The tingling in my left heel, the numbness in my hamstring.

Of the three episodes I’ve experienced in the second half of the year, I seem unable to acknowledge the symptoms until my back spasms, my hip locks and I can no longer turn my neck or lift my arm. Then the desperate call to the physio. As I’ve said before…I can be a slow learner.

And then the humility kicks in and I need to exit my head.

I ask my husband to wash my hair. I ask friends to walk a little slower. I ask Franki not to stop and sniff at every lamp post, perhaps every third one instead.

I tell my yoga teacher it’s a non-pretzel day, I can only do a 30 minute session and ask “can we do some breathing and meditation to complete the hour?”

And I ask strangers to help me untie Franki from the café chair leg as the Fisio-taped back and shoulders make my movements laboured as if my life has been catapulted into slow motion.

It’s those moments where I realise I can’t spend all that time in my head. That in fact, my life can be made easier by just opening the doors and sharing, asking and letting go.

Yes, 2014 has been a challenge. Not because my prognosis has become any worse, and not because the treatments have been wholly unsuccessful. Like everything in life, it has its success and its shortfalls.

I’ve experimented, struggled, rejigged and reworked.

Always in my head. But slowly, with others.

And with only hours left in 2014, I can only hope that I can approach the next 365 days with a little less “in my head” and a little more “in the marinating bowl” with others.

I’ll share my puzzle pieces, and ask for a different perspective. I’ll try them again, this time in a different place or space, sometimes by myself but also with others.

And I’ll remind myself that just as my parents tried valiantly, so will I.

Because life doesn’t always play out the way it does in your head.

Wile Coyote & Me

For those who don’t know me, I’m an all-or-nothing person.

I give 110% or I give nothing at all. Mediocrity isn’t my thing, in my mind, if you’re able to do something, do it properly; it’s unfair to not give you’re everything.

Who doesn’t remember Wild E Coyote ‘s dedication? Plotting each and every trap for Roadrunner? As a child I was in awe. The mix of braveness and stupidity in all its glory!

Courtest of Moby Picture
Courtest of Moby Picture

But the lesson I took is if it doesn’t work – try and try again.

This might explain why after almost two years on various auto-immune drugs I decided enough. Let’s go drug free and see what happens. Read: the doctors have it wrong.

That explains how I managed to get back on a bike and cycle 200kms in three days, 9 months after my disastrous freefall into AI hell. Read: I think I’ve beat this now. Lesson learned…thank you. Let me get back to my life.

And that also explains why I think (and maybe still believe) that the only why I am going to be able to reclaim my life is to keep pushing the wheelbarrow…uphill….by myself. Read: the doctors have no idea and I’ve got to work this out myself.

The last month has seen an increasing level of bone grinding joint pain and hot-coal walking nerve pain. By the end of the days my hands ache so much it’s hard to hold the toothbrush.

I spend most of my day trying to find creative places to shove my feet, to keep them cool. And more creative ways, a la MacGyver, to deliver me efficiently and effectively from the 3rd floor living to terra firma, minus the 45 stairs.

I spend 10 minutes every morning reminding myself that no matter how much my knees, shoulders or hands hurt, things will be better once I’m out of bed.

After all, I will be showered by a plethora of Franki kisses. And kisses from Mr Metamucil, if he hasn’t already left for work.

Last Friday, I woke up to my neck seizing and an electrical charge flying up and down the right side of my spinal column. I felt like Wile E Coyote, so excited that he has found the power source, but forgetting to let go.

I hobbled to the physiotherapist with tears streaming down my face… “please make this stop.”

My physio asked what type of pain I was experiencing and how I would rate the pain. Was I still drug free? Now it was her turn to plead, “please go back on the drugs”.

So as I lay on the table, wiping away tears with one hand and trying to keep my shoulder up with the other, I asked, “why is it that my shoulders are so weak?”

And she explained, “you’ve lost your structural strength and being in pain exacerbates this.”

Because it is appears that when the brain has been registering pain for an extended period, collagen which is a protein critical and basic building block that facilitates tendon, ligament and muscle strength can no longer do its job properly.

Researchers have shown that in a chronic pain patient the amount of collagen produced decreases, and of the 19 different types of collagen required the ratio of collagen rebuilding is off-kilter. But the dysfunction continues as the parallel structure which tendons and ligaments align themselves is disturbed and microtears and fibre separations are commonly seen in MRI’s.

It appears in my gung-ho, “I can manage this illness without drugs” approach, what I failed to realise that the creeping pain in my body isn’t the beginning of a bad turn, in fact at a molecular level it’s clear, the bad turn is approaching the end of a cliff.

by FabulousESPG
by FabulousESPG

I haven’t been able to manage the pain messages through mindfulness or meditation. I believe it can work. I have experienced the benefit. The relief.

But that was when my body was still receiving some synthetic assistance. The synthetic assistance I thought I could do without.

It appears, I’m simply not ready yet.

Part of me was hoping that the past 24 months had been one hell of a bad dream and an over-reaction by not only myself but also by the doctors.

Part of me was hoping that I could cure myself by understanding and eating “real food”, being mindful, exercising within reason, getting good sleep and listening to my body.

I’m not proclaiming this is a cure for A.I., but I do believe this has the ability to help heal not only my body, but my mind. And I suspect it is my mind that tortures me more than my body.

But it appears I’m still a little off that nirvana as well.

Intellectually, and deep down, I believe that I can create a healthy and wholesome existence, despite the A.I. honour roll and minus the synthetic assistance.

But I think I got a little cocky. I thought I could see the finish line. I started to take short cuts. And I cheated myself.

And I should know by now…you can’t cheat with A.I. and there’s nowhere to hide.

So at 4pm last Friday, I walked into my GP’s office and placed my white flag on the table and asked, “can we start again please?”

The Illusion

When given the choice, I always take bad news first, hoping that the good news will wash over and overwhelm the bad.

But what should you do when the bad far outweighs the good? Perhaps I should reconsider my approach?

Let me take you & I, back for a minute.

It’s been six weeks since my last blog, a big no-no in the blogging world. Apparently your readers want to hear what you have to say, and want to hear it often. I’ve always maintained the personal rule, that unless I have something useful, interesting or helpful to say…keep it to yourself.

Those are Dear Diary entries, not reflections I want posted to the world wide web. After all, I am emotionally constipated.

I’m still finding the balance between vulnerability and verbal diarrhoea.

Six weeks ago, I wrote about the testosterone treatment I has started taking in March. After almost two years on the autoimmune medical rollercoaster, I was starting to experience a significant change in my energy levels and re-engaging in activities I had long ceased and at a frequency that had escaped me for just as long. I had developed hope.

After a third set of blood work in early July, my testosterone levels were steadily climbing.  And the doc suggested we kick up the dosage by 50%, just to keep the momentum going. I was accelerating on my continuum of hope.

Brunette & Balloons canstockphoto

Just over a month ago, I celebrated my birthday. And I love birthdays! It’s the only day where you can pat yourself on the back for completing the most harrowing journey ever, the passage down the birth canal (sorry C-section babies!).

After all, at 37 King Henry III of France was assassinated, Michael Hutchence, the lead singer of INXS was found dead in a hotel room in Sydney, Vincent Van Gogh was found with a gunshot to his chest and Lou Gehrig died from an autoimmune disease known as ALS or Motor Neurone Disease.

It is infamous company, but clearly I wasn’t doing so bad.

Within days of my birthday, I received a call from a friend, fresh from her honeymoon. I knew instantly the phone call at 8:30 on a Sunday morning would not be good. She had been nursing her partner and husband of 15 days through motor neurone disease for the past three years.

She called to say that he passed away. On the last day of their honeymoon.

A week later we said our final goodbyes to a gentle man who deserved to enjoy much more of his married life. Of life in general.

I was faced with the strange juxtaposition of watching my girlfriend flanked by her maid of honour and bridesmaid, as she walked down the aisle, except this time to her husband’s casket.

Overwhelmed by the cruel irony of life’s highs and lows, in such a short and swift period….it was heartbreaking.

Three weeks ago, I was woken up by crushing pain in my shoulders, reinforced to me every time I rolled onto either side, as I desperately sought my “sleep” position.

I skipped yoga that week.

The following week, I could no longer ignore the shoulder pain and started taking a painkiller before I went to sleep. I’ve worked out that without restful and rejuvenating sleep, I’m unable to operate and any pain I am experiencing is amplified.

No yoga and no spin class that week.

By early September, it wasn’t the shoulder pain that had sent my neurotransmitters into overdrive, my old friend Tonya Harding was back. Swinging at my knees with that police baton. And laying on my back became increasingly painful as I felt my kneecaps sink into the back of my legs.

I checked in with my chiro wondering whether he could help stabilise my knee. Had I accidentally hyper extended at yoga or twisted it funny? I am 37 after all.

After some examination he noted that my quad muscles were no longer activating as quickly as they should. Nor were they bracing to support my body weight or knees.

I skipped Pilates that week.

Chick in flight_canstockphoto

My continuum of hope, had taken a sharp u-turn, in the wrong direction.

Today, I returned to the endocrinologist to review my testosterone count.

How do you feel, he asked? Should I tell him the truth or should I lie?

“Well, I definitely felt better with the most recent increase in the transdermal cream, but I’ve since rediscovered the joint pain, I struggle to open the jars and use the can opener and the fatigue is creeping back.”

“Well, your testosterone count is finally at the ‘normal’ range. From that perspective we’ve been able to address the hormonal issue. But clearly you have autoimmune pathology presenting.”

Yes, I do.

A few hours later I still feel numb. Like when you find out that the tooth fairy isn’t real or your football team loses in the dying seconds. It’s the realisation that the illusion I held onto, appears to be gone.

So I’ve decided the next time I flip a coin, I’ll always choose bad news first.

Because you see, the good news was that “I’m normal,” so surely it’s only upwards from there?

Turn Off & Tune In

In March this year I decided to take myself off all my medication.

The Prednisone, that is meant to keep the immune war at bay, the Plaquenil, an immune-suppressant drug that helps lubricate the Nancy Kerrigan knees and the Lyrica, that is meant to turn off the burning sensation on the soles of my feet.

I wasn’t advised by my medical team and nor did I ask them. After all, it is my body. I had just spent 6 weeks detoxing from an experiment with methotrexate. Words can’t begin to describe how horrible I felt on this drug. But I had had enough.

What was truly making me sick? The A.I. conditions or the medications?

In February after a routine gynaecological exam, because clearly I hadn’t suffered enough, the gynaecologist stated he was concerned about endometriosis and felt it needed to be investigated. I was approaching the end of my “fertile years” and if childbearing was on the agenda, best to check it out.

Childbearing could not be further from my mind, after all I was still pulling chunks of my hair out of the shower drain. Childbearing was never high on the list. In fact, the thought was (and still is) rather terrifying.

I did point out that in order to have children, I would need to be physically and emotionally well enough to even enjoy practicing and as a relative newlywed I wasn’t exactly hanging from the chandeliers.

He suggested I have some blood work to check my reproductive hormones, but expected no real surprises, “you’ve got to keep in mind that your body is going through enormous stress and sometimes it just shuts off unnecessary requirements.”

No shit, Sherlock!

But those words did spark off a chain of thoughts… somewhere and at some point I did recall reading that hormonal levels are often askew during active A.I flares. And with the majority of A.I. diseases affecting women, it would make sense to check reproductive hormones.

But after 18 months of appointments with specialists across many fields, no one had bothered to check reproductive hormone levels, despite the fact that they are directly linked to energy production, mobility, muscle building and strength. The three things I was struggling with on a daily basis.

To provide a little context on why hormones are important and often overlooked, here’s the skinny, or skip ahead if you’ve heard this before.

Hormones are a naturally occurring chemical substance, triggered by the brain and released through the body by glands across our body in short bursts and pulses. They make up endocrine system. The main glands that produce hormones are the adrenal glands, pancreas, ovaries, pituitary gland, thyroid, parathyroid and testicles. Ref betterhealth.vic.gov.au/bhcv2/bhcarticles etc…

As a CFS patient, cortisol levels are one of the first things my endocrinologist tested for in addition to my thyroid levels. Not only my Thyroid Stimulating Hormone (TSH) level, but also my T3 and T4 levels. To put it simply, a TSH level is an average calculated from T3 and T4 levels, therefore if you have an imbalance in either of these levels, the TSH is likely to mask it, therefore why your results come back “normal”. If you’ve never had T3 & T4 checked insist that you do, but be prepared as Medicare will not cover it.

Check out Better Health by VIC govt for a more detailed explanation here.

So in late February at a follow-up appointment with my GP, I asked if my hormone test results had returned, as I hadn’t heard from my gyno.

And as he sat there, pouring through the numbers, looking for any red numbers to highlight an abnormality, there it was.

Testosterone test - Feb 14
Black & White, but an asterisk usually spells problems testosterone level in Feb 14

Undetectable levels of Testosterone. WTF??!!

How long had it been like this? What caused this? What does this mean? Could this be part of the solution?

The short answer is “it could well be.”

Like all reproductive hormones they fluctuate over the course of a menstrual cycle, so diagnosis or treatment decisions based on one reading can be misleading and potentially dangerous. But when more than one came through at undetectable levels and all my other hormones indicated I was nowhere near peri-menopause, it was clear that for some reason the pituitary gland had stopped sending messages. It had simply turned the chandelier lights off.

Treatment and access to treatment when you’re diagnosed with an androgen deficiency is a complex and hairy beast. Google androgen deficiency, and if you live in North America, Asia or South America there’s no government approved treatment for women – it appears they don’t even recognise it as a medical condition.

If you live in Australia, you will come across many more articles suggesting “there is no standard treatment” and a diagnosis “is controversial” rather than “there is a possibility that this may contribute to the symptoms associated with auto-immune presentation.”

The key is to find a progressive endocrinologist who is prepared to say “we don’t know why it happens, but there are ways to reboot the system.”

I lucked out! I figured it was time! Professor Eden is the ducks-nuts of endocrinology and women’s health. Young, smart, approachable and empathetic.

As he told me, “I’m in the business of giving people hope.”

Butterfly light

He explained the complexity of hormone testing and in particular the complications of measuring testosterone. It simply doesn’t exist! But what he was able to do was explain that testosterone is critical for women, but it’s not the amount circulated in the body that is important, it’s the 1% that is being absorbed by body tissue that is critical to understand. This is what’s critical to restoring energy and chandelier gymnastics.

Then he grabbed a pen and a piece of” to-be-recycled” paper and scribbled down a formula, which brought back nightmares of my university statistics class, and circled SGBH – sex globule binding hormone.

A healthy woman in her reproductive years should have a reading between 6-9. I was sitting at < 0.1. Clearly room for improvement.

The plan: application of transdermal (skin) testosterone cream daily for a month, retest the SGBH and see how my body responds.

There is one pharmacy in Australia that currently provides a testosterone cream specifically designed for women, and it is only available on script. The concentrated dosage is 1% and of course, the tube is pink!

I’ve been on testosterone cream since April, increasing in dosage and concentration under the direction of Professor Eden. I’ve also been off all other medication (except for a period post-operative to confirm my gyno’s original suspicions) because I wanted to see whether any improvement in my fatigue, joint pain and mood was directly due to the hormone replacement.

I can report that in the last four weeks I have been able to:

  • return to a one-hour yoga class – weekly
  • return to a one-hour Pilates class – weekly
  • I got back on my road bike for 30mins, in windy conditions and didn’t blow away or blow up (once)
  • I survived my first 45 min spin class
  • And today, I returned to the pool and did slow laps with the rehab crowd (all over 50 and recovering from life’s little shocks and wake-up calls).
It's been a while since the swim bag
Franki inspecting the bio-degrading bag in my swim bag!

And last week’s blood test results showed an SGBH result of 3. Finally heading in the right direction.

Is this part of the puzzle?

I don’t know. But I’ll keep you posted.

 

For more info about Androgen deficiency, Monash Uni has some great info…check it out here.