Thursday, 22 March 2018

Fibromyalgia is a bitch

Things were really good with my health, life, the universe and everything...until last December.



Like a lot of people with fibromyalgia I'd been on low dose endep, a trycyclic antidepressant (amitryptilline) for fibromyalgia pain for the past 10 years. It had been keeping things in check. Then I developed a big problem with a totally dry mouth at night and my teeth were dissolving. Disaster. I had no choice but to come off it. I went to see my GP and she decided that Lyrica was the next drug of choice.

https://www.lyrica.com/fibromyalgia 

I spent 3 months trying to acclimatise to Lyrica and I got some beastly side effects. The worst being blurred vision and seriously unhappy gut and diarrhoea. YUCK!



I started off on 25mg and ended up on 400mg and yet it wasn't working. All I felt was 'fuzzy' so my GP decided it was time to come off it. Little did I realise that coming off Lyrica is like coming off heroin.
OMG!! It was vile. My gut reacted, my body withdrew and I stopped sleeping. It was like a switch had been turned off that stopped me going to sleep. It was horrendous. I knew that if I wasn't sleeping I was likely to get a flare of lupus and the whole thought of that sent me into a tailspin. These are things I wish I'd known before I started Lyrica. Hindsight is a noble thing.





And it gets worse...The Australian government has decided that codeine based painkillers were discontinued as an over the counter prescription. And as a result my GP decided I was coming off my codeine based prescription painkillers too. WTF!! 


This has become political.

People like me are described as Chronic Non-Cancer Pain and basically if we take more than 100mg of opiate equivalent a day we are to be tapered off it. WTF. 

This has all come about because people are taking over the counter codeine/using too much/overdosing and this is impacting us chronic pain lupus/arthritis/fibro people. I'm feeling rather cross about the whole crazy situation. I can't take NSAID as I have reflux and asthma so my options are limited.



I know I'm not an addict because I've never taken more than 2-4 x 30mg codeine tablets a day. I take them mainly at night to sleep and 6 weeks ago I have taken myself off them completely. However since then it has been HELL from a sleeping and functional point of view. I'm sliding back into active lupus and fibro flare and my fibromyalgia is at an all time low point. 




I'm taking herbs and supplements approved by a naturopath, including turmeric, white willow bark etc. and I'm using a TENS machine to distract myself in the day. However, trying to sleep is HELL. Anyone out there who has had chronic pain, fibromyalgia, lupus, arthritis will understand what I'm saying. Do any of these politicians who make these policies really understand what it is like to try and live with this???? I really don't think so. 





My GP wrote my a referral for the pain clinic at the hospital and a Psychologist who specialises in CBT (Cognitive Behavioural Therapy). At this point I was totally brow beaten so I took my referrals and left. I certainly don't have depression or anxiety despite what I've been through.





So now I feel I'm back where I started with fibromyalgia 12 years ago and I've fallen in a rather painful heap. Fibromyalgia is like a living hell. You're in constant pain, you don't sleep well and I'm sometimes in such pain that I don't sleep till 3am. It literally drives you demented. I'm an active person, go to pilates and hydrotherapy and run a busy small business. 



The medical world has failed me so I have to no choice but to explore the natural complementary route. I'm hoping my naturopath has found the lightbulb factor because I'm really at the end of the road. She thinks I've got a histamine intolerance. It's symptoms are similar to a food allergy and involves the mast cells. I'm embarking on a low histamine (boring) diet for 3 months and getting my DNA tested. 





Other things I've researched that I'm giving a red hot go are....and btw it's a long list!

  • Norflex 100mg x twice a day - muscle relaxant 
  • Vitamin D 2 capsules a day
  • Magnesium - high dose at night x 1
  • Turmeric 1 capsules x 2 x a day
  • Quercetin 1 capsule x 3 x a day - has antiinflammatory properties
  • D-Ribose
  • Bioceuticals pain relief - White willow bark 40mg, skullcap 10mg, black catechu (stem heartwood catechin and epicatechin 21.6mg), kava root 20mg 1 capsule x 3 x a day
  • Devils Claw Root 1 capsule x 2 x a day
  • Red clover tea infusion 2-3 cups a day
This is on top of all my other meds for lupus, high blood pressure and reflux! And I take fish oils 10g a day. 
I've also heard epsom salts help and low dose naltrexone...




My other friends are a foam roller, a spiky massage ball and a yoga mat. I'm hoping all my research and hard work is going to help me, everything crossed.




Until next time...hasta la vista baby...







Wednesday, 21 March 2018

What will 2017 bring me?

I'm already thinking of 2017 and 2016 is not even over. I'm preparing my business plan and I've got to look at how I manage my time to keep myself in remission. I usually spend 3 or 4 nights on a couch that is uncomfy and doesn't fit me whilst helping sleep deprived parents with their babies sleep ;-) not ideal for a girl with lupus I know. So I need to think about my grand plan as I don't want to be doing this amount of couch surfing 10 years from now.

So I've taken 10 days off over Christmas and New Year to book write, ponder and generally naval gaze at this and the big decisions of life. 2016 was a shitty year from a health perspective but not as bad as 2010. I acquired a few more drugs and a blood pressure issue and I'm really not tolerating the heat at all in OZ. Some days I feel like I'm going to spontaneously human combust and all that will be left is a pair of shoes.


It's now July and I've not said hello to my blog for a few months. I'm still in remission and I thank my lucky stars every single day. I've added another blood pressure medication to my already long list of meds. Today I went to a Pilates instructor for a fitness assessment and it wasn't as bad as I'd imagined.  I very nearly touched my toes and I did squats!! I'm learning that keeping myself fit and active needs to take priority to keep me able to do my job to the level I need to.

I'm about to publish my 4th book. YAY!! It's been 3 long years of writing and late nights.