Whatever…Nothing!

Yesterday, I (with my Mommy) was running late for my pain specialist. I hate running late. It stresses me out. I think it is incredibly rude. But, yesterday, when my Mommy was apologising for making us late, I was just ‘whatever.’

Then I thought about it and I’ve been ‘whatever’ for quite a while. It’s not such a bad feeling – it’s stress-less, very laid back and unemotional. But it’s very nothing.

I also noticed that I haven’t been writing anything personal on this blog – it’s been all about research and studies. It’s because there is nothing.

I think I’m on too many drugs…

When I was first diagnosed, (other than a quick dose of steroids) I was immediately put on Lyrica. Anytime I felt more pain, the doctors increased my dosage…my current Lyrica dosage is 225mg both morning and night.

I also take 150mg of Sertraline for depression – it used to 100 mg but during this ‘whatever, nothing’ stage, I felt that I needed something extra. My GP was happy to increase the dose. There’s also 1100ʮg per week of Thyroxine for my under-active thyroid; the Pill (I went off it (because who’s having any sex?) but my periods were unbearable!); and, of course, there’s all the supplements that we’re supposed to take: vitamin D, Red Krill Oil, D-Ribose, Sam-E, CoQ10, and a multi-vitamin.

Anyway, my point is that no-one tried anything except the Lyrica…why not?

So, having visited the pain specialist yesterday, we’re trying something else: I’m running out of all the supplements at the moment, so I’m just going to stop them as the bottles empty; and I’m going to wean off the Lyrica:

doses

Because this ‘whatever, nothing’ just isn’t good enough. I want more. I NEED more!

Manic Monday (Saturday, really!)


It appears, that in my fibro-fogged, drug-addled brain, I made a mistake in my counting; so it’s a really good thing that I made the drug chart at the beginning of this journey (doesn’t that sound like a reality TV show?) and prepared my dosette.

Today was the first day back on Sertraline (Zoloft). Yippee! It was a hilarious day (to me, at least) as I had some wonderfully, happy manic moments (read ‘hours’) where I just jibber-jabbered on and on, about really stupid stuff. And being Saturday, Thais came over for our now-ritual Saturday night.

We watched the Puberty Blues episode from early on in the week – for those non-Australians, it’s all about growing up in the 70s. It’s fabulous! We sit there and compare what our parents were wearing, how long or short our school skirts were, and whether we were ‘pashing’ boys (in the back of a panel van) at that time in our lives. Absolutely superb memory jogging episode, which we had to keep pausing so I could jibber-jabber about nothing.

Being manic is so much nicer than being depressed! Except for all the people who have to listen to me! And having been through this part before, I know it will go away – so I’m really just trying to enjoy it. But, it does use a lot of energy!

DANGER!

 

The powers-that-be (my GP, my rehab doc, Mommy and I) have decided that the experiment to wean off Sertraline (anti-depressant) and start Cymbalta (both anti-depressant and used for FM pain), in the hopes that I could lose the Lyrica from my daily intake, has failed; so we are reversing all our (my) hard work to go back to the way it was. It wasn’t perfect (far from it) but it was better than what I have now.

So, all good, right? Not quite. I want to be back on the sertraline (and away from icky side-effects) in two weeks – for when I go to Bali (that would be the very festive, hot pink area). So, we are fast-forwarding it all:

 

Basically, I’m warning you guys that my posts and comments could be…um…interesting (not sure if that would be the right word).

Now, you might be wondering what that last column labelled Codeine is about: after my holiday (vacation for you US  citizens), my rehab doc has decided I need to give up codeine (hence the very red part) before we try any other type of pain killer – cold turkey: no panadeine forte, no panadeine extra, no ibuprofen plus, etc! And no anti-inflammatories! I’m doing it at home but he has said that some people have to go to hospital – I hope not me. I am very attached to writing to you guys from my couch each day.

 

H-E-L-P!

I have a really big problem with this crap thing called Pacing.

I understand the theory behind it all; I just don’t get how to actually incorporate it into a life: I understand that yesterday I was supposed to walk for 31.5 minutes and that works perfectly well if I leave my house and walk for 15.75 minutes and then turn around to go home. But what is supposed to happen when I’m in one place and Mommy asks me to meet her somewhere? Do I walk for 31.5 minutes and then just…what?

Today, I went to the hairdresser (Mommy’s treat) because today was the day she could fit me in.

On the way back to Mommy’s, I stopped to pick up packing wrap to send all those wonderful bangles (when they arrive). We had lunch, then it was off to the rehab centre for a review with the physio, occupational therapist and doctor.

Regular readers of this blog will know that I have weened myself off sertraline, built up my dosage of Cymbalta and hope to stop the Lyrica. Small problem – I am currently on 120mgs of Cymbalta and 300mg of Lyrica and I am not comfortable with my pain management so I don’t want to stop the Lyrica; and, as an anti-depressant, I much prefer the sertraline (and I think it prefers me!) So The Team decided that after all of that stuff, we are going to reverse it all and go back to where were at the start.

After all that, a quick stop at the supermarket to pick up dinner for Z (who is going to stay the night tonight) and then home.

Then, I think I had my first-ever anxiety attack. Z was due in half an hour and I had to child proof my place again, air the place out so it wouldn’t smell of smoke for the Kid, have a rest (?), empty my shopping bags, etc. H-E-L-P!

I called Mommy and she took Z for the night (I’ll see him tomorrow), and I sat silently in my quiet house for a couple of hours.

Now, my question: how the hell was I supposed to pace today?

A Plan Goes Awry

It has finally dawned on me…remember that my GP, Mommy and I are using me as a lab rat for my treatment plan. This could be the reason that I’m feeling worse (inside, not necessarily pain-wise) than I ever have before (except perhaps after an operation where a knife-wielding surgeon has carved up parts of my body)!

The plan is/was to replace Sertraline AND Lyrica with just Cymbalta:

1. maintain Lyrica dosage – 150 mg am & pm (til step 6);

No problem with this part of the plan.

2. stop taking the Prednisolone;

No problem here, either

3. Wean off Sertraline over the week;

Slowly becoming more irritable (or so I have been told!)

4. no anti-depressant for one week;

Really irritable, some collapsing on the floor in tears, really tired – this would be when I posted the SQUISH picture, and started the Things I Have Lost series

5. 4 weeks of 30mg Cymbalta;

No real help on this minimal dosage, still really tired, not quite as much crying, can’t be bothered with much, lots of pain EVERYWHERE! – and that would be The Mess That Blubbered

6. 4 weeks on 60mg Cymbalta – NOW:

Not impressed with Cymbalta as an anti-depressant (not even up to the FM dosage yet), feeling nothing but exhausted ALL the time, really noticing temperature changes within my own body

So now, I’m supposed to increase the Cymbalta again while reducing my Lyrica but I really can’t see how the Cymbalta is going to help me with pain management when it can’t even cope with the depression in my body, and it appears to be making a lot of symptoms worse

And I’m just not sure where to go from here…

A Balanced Body

Ahh…BodyBalance:

BODYBALANCE™ is the Yoga, Tai Chi, Pilates workout that builds flexibility and strength and leaves you feeling centred and calm. Controlled breathing, concentration and a carefully structured series of stretches, moves and poses to music create a holistic workout that brings the body into a state of harmony and balance.

The class started with a tai-chi warm-up…cool – I can handle that! Then, into some of the yoga moves that I had done previously. When we hit the downward dog,

I had to dodge Mommy’s dirty looks – what the hell have you gotten me into? Down into the plank – if looks could kill!

The Plank!

And onto the mat for the yucky part – pilates core workout! Guess what? I still haven’t developed any stomach muscles (ummm…and it seems neither has Mommy!) More yoga, some flowing tai chi and finishing with a 10 minute meditation to clear the mind.

(I haven’t gone into great detail because the class was definitely, as promised, a fusion of all three other classes: yoga, pilates and tai-chi as described in previous posts).

I must say that the final meditation was very much appreciated, as I dripped sweat onto my mat and waited to be scraped from the floor.

Earlier in the day, Mommy and I went to visit the doctor (rheumatologist #3). I tried to motivate him with the promise of fame, fortune and untold riches (He could be the One! The One who could show empathy! The One who could publish numerous journal articles! The One that all FM patients would seek!) Erm…it seems he wasn’t interested.

So, the plan is:

  1. maintain Lyrica dosage – 150 mg am & pm (til step 6);
  2. stop taking the Prednisolone (no weaning as I was only on it for a week);
  3. visit GP on Friday to start weaning off Sertraline (anti-depressant actually being used for depression) over the week;
  4. no anti-depressant for one week (should be some interesting posts that week!);
  5. start Cymbalta (until we find correct dose for my depression);
  6. reduce morning dose Lyrica;
  7. reduce evening dose Lyrica.

Of course, steps 6 and 7 will only be attempted if necessary; and step 5 may take quite a while. If at any stage, I find that everything feels better, then I’ll be leaving it as is. I have a follow-up appointment with Rheumatologist #3 in 3 months.

So it looks like it’s up to me and Mommy (and my poor GP – she doesn’t know yet! with as much input from you guys as you feel like giving) to discover the secret (at least, the one that works for me) behind managing the pain, fatigue and fog and returning to work.

Something Does NOT Add Up Here!

Today I have to report my income to Centrelink. Guess what? No income (AGAIN!) this fortnight so the government will deposit $473 into my bank account.

This money needs to cover $250 for my mortgage payment, $52.50 for acupuncture (after medical insurance rebate), $53.40 for medical insurance, $8.50 for hydrotherapy, $5 for tai chi, $52.50 for Lyrica, $24 for Circadin, then there is Thyroxine, Sertraline, Vitamin D, Alpha Lipoic Acid, Eleuthera Root, a multi-vitamin supplement. Umm, where’s the food, cigarettes (do NOT tell me to quit, as a comment!), phone, internet, electricity and gas?

Something does NOT add up here!

P.S. Also had to pay over $900 this week for my Practicing Certificate and Law Institute membership – I’m still not giving up on practicing!

Diet of Desperation

I always have fish and chips on a Monday, except I don’t eat fish so it’s either a hamburger or souvlaki. Sometime during the week, I have a pepperoni pizza; and another day, it’s a cheese pizza. Chinese take-out is on Thursday. In there, as well, is a hell of a lot of Cadbury’s, and maybe some ice-cream.

Yes, my diet sucks. But I’m too scared to change it!

I suffer from depression and I take 100mg of sertraline (anti-depressant) daily. It took 3 years of experimentation and dark, scary days to reach a place where, despite everything, I’m pretty good. Antidepressants are also called serotonin re-uptake inhibitors, preventing the supply of serotonin in the brain from going down. However, antidepressants are not the only way to elevate serotonin levels. Many ordinary people self-medicate when they are feeling depressed by eating lots of carbohydrates.

R.I.P Davy Jones

I don’t question this theory – in fact, I am a total believer.

Here is how ingesting sugar – or some carbohydrate that is broken down into sugar after digestion – can alter our mood for the better. When we digest carbohydrates, our blood sugar levels rise, and then insulin is secreted, lowering the blood levels of most amino acids with the exception of tryptophan, which is a precursor to serotonin. When there is more tryptophan than other amino acids, it enters the brain at a higher rate,[1] potentially alleviating a functional deficiency in brain serotonin and thus serving as self-medication.[2]  The brain then produces more serotonin. Studies focused on this link appear to back this up: high carbohydrate meals raise serotonin,[3] while fatty or protein rich meals tend to lower it. The type of carbohydrate chosen seems to be based upon its glycemic index, or how high it causes blood sugar levels to peak. The higher glycemic index carbohydrates like sugar have a greater effect on serotonin than starchy, lower glycemic index foods like potatoes.[4]

And it’s not just sugar that we crave: certain alkaloids have been isolated in chocolate that may raise brain serotonin levels.[5] Scientists now speculate that chocolate addiction may actually have a real biological basis with a serotonin deficiency being one factor.[6] Another basis that has been proposed for why chocolate has such a powerful influence on mood is that chocolate has ‘drug-like’ ingredients including anandamines, caffeine, and phenylethylamine.[7]

Expert tips to avoid the cravings include:

  • Be honest with yourself about how deep your problems with food go – I figure I can’t really be more honest than this!
  • Distract yourself by doing something else – oh yeah! because that works for the 61.5% of the Australian adult population considered overweight or obese! (Sorry – couldn’t find up to date figures on ALL the other countries!)
  • Exercise! Exercise stimulates the feel-better chemicals called endorphins and improves your mood. But it’s awfully hard to exercise when you can’t get yourself out of bed…
  • Drink a glass of water. Really? (need I say more?)
  • Be mindful of what you are consuming rather than grazing all day. A food journal can be very helpful – if you want to keep track of what you will need from the supermarket!

So, when doctors, websites, other bloggers, family and friends tell me that perhaps I need to alter my diet to help with my FM, all I can think of is the return of the Big Black Dog.

 

P.S. I love footnotes!


[1] Gendall & Joyce, 2000; Sayegh et al., 1995; Velasquez-Mieyer et al., 2003; Wurtman & Wurtman, 1995

[2] Pijl et al, 1993; Spring, Chiodo & Bowen, 1987; Wurtman, 1990; Wurtman & Wurtman, 1995

[3] Rouch C, Nicolaidis S, Orosco M. ‘Determination Using Microdialysis, of Hypothalamic Serotonin Variations in Response to Different Macronutrients’ Physiological Behaviour 1999 Jan 1-15;65(4-5):653-7.

[4] Lyons PM, Truswell AS. ‘Serotonin Precursor Influenced by Type of Carbohydrate Meal in Healthy Adults. American Journal of Clinical Nutrition 1988 Mar;47(3):433-9.

[5] Herraiz T. ‘Tetrahydro-beta-carbolines, Potential Neuroactive Alkaloids, in Chocolate and Cocoa’ Journal of  Agriculture, Food and Chemicals 2000 Oct;48(10):4900-4

[6] Bruinsma K, Taren DL. ‘Chocolate: Food or Drug?’ Journal of American Diet Association 1999 Oct;99(10):1249-56

[7] Benton D, Donohoe RT. ‘The Effects of Nutrients on Mood’ Public Health Nutrition 1999 Sep;2(3A):403-9