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!! 

https://www.racgp.org.au/download/Documents/Guidelines/Opioid/12Point-Challenge.pdf

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. 

https://fedupwithfatigue.com

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.

https://www.racgp.org.au/your-practice/guidelines/upscheduling-of-codeine/

https://med.unsw.edu.au/news/codeine-related-deaths-double

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. 

https://www.histamineintolerance.org.uk/about/

https://www.histamine-sensitivity.com/histamine_joneja.html

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...

http://www.drliptan.com/blog/2017/11/21/lessons-learned-on-opiates-and-ldn-for-fibromyalgia

https://www.healthrising.org/treating-chronic-fatigue-syndrome-mecfs/drugs-for-chronic-fatigue-syndrome-mecfs-treatment/low-dose-naltrexone-ldn-fibromyalgia-chronic-fatigue-syndrom/

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...

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.

How I managed to stay in remission with lupus

I hope you've all had a really good Christmas and a rest.

In my last blog - June 2016 - I wrote about a speed hump and a lupus flare albeit a mild to moderate one. And boy did it give me a reality check. I never ever take remission for granted. Those of you who have read my whole sorry tale of my lupus journey will understand why. It's been a rollercoaster of 12 years. 7 years of methotrexate (chemo), a brain haemorrhage and neurosurgery and gut vasculitis to give you a few of the lowlights of what lupus has meant to me.

I've achieved remission again. Before I went away to the UK I was working ridiculous hours and I paid for it. I had a month of lupus flare. Tsk tsk.

Oh I was PISSED. 

To get myself back into remission I had to sleep. I've learnt that much from the last 10 years. The thought of going back to the UK for 3 weeks and getting sick scared me a lot. So I set to and did 10 hour night sleeps and a 2 hour nanna naps in the day. Which left little time for anything else. The irony of my life as a baby whisperer, where I look after sleep deprived mums and get their babies sleeping too. 

I was so terrified of going back on the methotrexate and starting off gut vasculitis.

When you've been in a very dark place you never ever want to go back there ever again. In the past I'd had to take 7 months off work to heal myself. Shocking. Have a read of this blog and you'll understand my fear.

https://loopylena.blogspot.com.au/search?updated-max=2014-05-28T00:54:00-07:00&max-results=7

It's taken me 2 months to complete this blog bahahahaha says the time poor girl laughing hysterically ;-) as usual work has overtaken my life. It's now 28th December and Christmas has been and gone and it was my usual low key affair at home, with my significant other and a new cat! Yes I am officially a mad cat lady with 4 cats ;-) and very happy with them all. My newest one is Ziggy a 11 month tuxedo boy and a rescue from the RSPCA. I'm finishing off a non-fiction book so I felt it was a purrfect time to get him. 

Here he is in all his loveliness, Ziggy.

My lupus is still in remission but not all is rosy unfortunately. I've got hypertension and it was at 160/110 and I'm now on maximum of one antihypertensive drug (Micardis Plus 80/20) and I got prescribed another (Zanidip 10mg) but had a big side effect so had to stop after just one day! I went food shopping on Christmas Eve and had a fainting attack in the fruit and veg section of Coles. DOH!! So found a GP in the shopping centre to get checked over. My BP had dropped to 120/90 and that was 30 mins after the event. Luckily my significant other was helping me with the shopping so I could go home. The thought of an ambulance trip and hospital stay over Christmas wasn't a great thought. So it's back to the GP next week and a look at these antihypertensives and my BP. I had noticed my feet and ankles were becoming a bit 'fat' and swollen but I just figured it was the heat as we've had some shocking 38C days this month in OZ. After taking just one dose of the Zanidip I know it's not the heat. 

Back to book writing I go and a bit of cat stroking in between...

Another year on and I've hit a speedhump :-(

Hello blog, my long lost friend. I've missed you longtime girlfriend :-)

I've not visited this blog for a year as my business world went mental. As a result I've hit a speedhump and had a blip with my lupus. Grrrr severe gnashing of teeth follows. Oh it gets me so cross. It sneaks up behind me and gives me a bite on the bottom just to remind me it's still there.

Oh I feel much better for that giant ROAR. 

So what has happened this past year? I've just self published my 2nd non-fiction book. Not a mean feat I know. Slightly over achieving. Bahahaha

Health wise there has been the usual mini drama's but nothing I felt like sharing till now! The sacro-iliac pain improved as did my ability to put my own socks and knickers on!! Thank goodness. It got so bad at one point that every time I turned over in bed I was shouting out in pain. Following a sub-total hysterectomy things dramatically improved. I've never been so happy to have a body part removed. I was really frightened of a major meltdown and it never happened. Somehow making that decision, and in the end I forced it because life was so intolerable, helped me move on from the what ifs of children to a whole new chapter. I was able now to pursue other things in my life. I actually feel liberated. Doesn't life surprise you at times?

Then next came the wisdom teeth...I'm still shuddering at that one. I got an infection post op and it was the single worst thing that has ever happened to me. No kidding. Those of you who have read my previous blogs will know that what I'm saying is BIG. However I have survived. For 3 months it was pureed food. Revolting. That experience has taught me nothing good. And I paid a freakin' fortune, went private and trusted the oral surgeon with my life. 

Anyway I must move on. It's not healthy to dwell on negative experiences.

So where am I now? I'm off to the UK in a few weeks and it's the big birthday and I'd like to go back well if I can. So I've got a decision to make. Do I go on Methotrexate or tough it out? I think I'll do a blood test first and see how bad things are. 

Oh lupus you are so mean and not a good friend but somehow you keep hanging around even when I've unfriended you.

But hell I'm ALIVE and being alive is good fun. For a girl with such a badly behaved form of lupus I've even surprised myself. 

I've gone from this 8 years ago....

To this just recently

Another year on and being grateful

Hello peeps out there!

It's another year on and I thought it was time to say hello to my blog again! Life has been busy and the months have gone by.

I'm still in remission which is most excellent. I'm grateful, very grateful that I'm here. I'm not taking it for granted. I don't think you ever do when you've been in a deep dark hole you'd thought you'd never get out of.

It's Winter now in OZ and joint issues are always much worse at this time of year. The tin man has resurfaced yet again. After an hour of getting up I move much more freely.

I'm very conscious to keep myself warm, lots of layers and always socks. My hands are freezing cold as I write. I think it's time to put gloves on even to type! Gloves on but it makes typing much more tricky!! You can't use the track pad. Doh!! Irritating.

Health wise there's a couple of new challenges that I didn't invite along. My reflux has flared and I'm now on maximum meds for that. The irony of this is I'm such a foodie. I often wonder what will happen longterm. Will I end up with a feeding tube in my stomach or a central line and TPN (Total Parenteral Nutrition)? I think it's hard to have all this and not wonder where you'll end up as you get older. I try not to dwell on it as It's too depressing but now and then I dare to go there.

Something else that invited itself along for a free ride is awful sacro-iliac pain. It's got so bad this month that I can't bend over to feed my 3 crazy cats. I can kneel on the floor and feed them but I can't bend. It's frustrating and painful. Eventually I found a great solution, some catdishes from Alessi that have long cats tails as handles. Whoever created these is a genius :-)

Sometimes I politely ask my other half, Simon to feed them. He's very kind and will often do it. It's that first hour from getting out of bed that's particularly tricky. After an hour my flexibility improves.

It never crossed my mind that at age 48 I'd struggle to dress myself and put pants and socks on.

I've been reading too much Google (as I'm sure we/you all do) and decided that I've got AS (Ankylosing Spondylitis). I've got to go for an Xray and some blood markers this week. I'd rather know if it is this or not. Luckily my Rheumy agreed it was a good thing to rule out and she didn't roll her eyes at me! The pain is just horrendous and nothing like I've had before. Having Lupus you always have pain, oh and Fibromyalgia. The 2 go hand in hand. I long for the day I don't mention the word pain and I'm not popping the painkillers. It won't happen. Suck it up Princess.

My Rheumy gave me 2 huge steroid injection s into my sacro-iliac. It helped but only for 2 days. And I screamed and cried like a baby when I had them!!

The weekend has been challenging so I'm a bit negative today which is rare for me. Usually I can poke fun at any situation. The 'no children' thing hit me this weekend. It arrived like a bolt from the blue. I was attending an event as a sponsor and I ended up talking to a heap of mums who all had young babies with them. I felt left out, the odd one out. I'd not felt this before and it was really hard.

Also all my friends on Facebook had kids that were attending their prom's. Again it hit me. I was never going to experience this. Lupus has robbed me of my chance to have children. My disease was so unstable that I've got 5 Angels waiting for me in heaven. My day job revolves around babies and children, oh the irony. Usually I can put my personal stuff aside but not this weekend. I sat in the bathroom last night and howled until I had no tears left. It did feel better but it's something that I have to deal with constantly. I get asked all the time if I have children and then that's often followed by more probing questions. 'Did I want children?', 'Would I adopt or foster?', 'I'd make such a great mum'. It's like they're trying to make my life better, more complete. But they can't. If I had a child would I even be able to have the energy to care for one properly? I think not. So my writing and my business has taken over from the baby I couldn't have. It's my big sadness and nothing ever can heal that weeping sore. I've become a mad cat lady with 3 crazy fur babies. Does it compensate? No, but it helps. Those that have children will never know how this feels and thank you for trying to make me better...but you can't.

It's important to acknowledge these things that we didn't plan for. It's not nice having to 'go there' but I know if I don't I'll never heal. As I said before I'm grateful that I'm here and what I've got in life. And I know none of us get everything. Acknowledge the pain and emotional shit, move on and smell the roses. And be grateful that you can get out of bed everyday even if some days you can't put your knickers on!!

Remission...how good does it feel!?!!

Well hello and a big Aussie G'day to you all. I hope you've all had a great week.

I'm fast forwarding from my last post nearly 3 years. Yes it's been 3 years since the brain haemorrhage. Amazing. A lot has happened in that time and you'd never know by looking at me that I'd been through all this health debacles with Lupus. I always say that whatever doesn't kill you makes you stronger!

I know how hard those bad days are. I remember saying things like, 'Dying must be easier than this!!!' The pain I was in with my gut vasculitis really drove me to the edge of what I could deal with. It was bad, very bad.

But then I'm in remission now. It feels like such a long way away that all that bad shit was happening.

I hit remission over a year ago now. It feels great but I'm not getting above myself. It could come back. Lupus is a chronic autoimmune disease. There is no cure. You live with it every day.

This is me on the left, taken a month ago on my birthday. I'd hit the big 48!!!

I went to see my Rheumy the other day. BTW don't you just HATE Drs appointments. It's a reminder that you are on a knife edge and it could happen again. I had a flu vaccine in May this year and OMG was I ill for 2 weeks. It was like I was having a flare again. It was so damned scary. I had a headache that was nearly as bad as the brain haemorrhage for 2 days. Nothing relieved it. It was like encephalitis. I was photophobic. The joint pain came back. I was in bed and had no energy. Then it just went. My liver function tests have been really up and down for 3 months. The option of stopping Methotrexate came up because my CRP and ESR are normal which means no active disease. I'm not brave enough to stop it yet. Some of you will understand that. I hate the chemo drug I really do but when you've been soooo sick you don't want to risk it either! Arrrggghhh!!! I drive myself mad at times! Maybe soon. Its crazy I've gone from the no drugs at all mindset to the security blanket of them!!!

In my work life I'm such a risk taker. I run my own business. I'm ridiculously busy and I'm writing 2 books. Yes I'm not content with doing one book at a time!!! When you love writing it seems very sensible to write 2 books and and 2 blogs.

Today I'm having a lazy Sunday. I'm still not dressed and it's nearly midday. That's how I balance my life out. I'm lucky that my 2 cats are fairly undemanding. Simon my partner lets me do my thing and I write.

Life is good...

I was staring down the barrel at brain surgery and I preferred the idea of being shot thank you very much!

I'm back, oh yes. You can't keep a good girl down. So as I was telling you in my last blog post I'd had a massive brain haemorrhage.

Why it happened I'll never really know. It has been attributed to the fact I was on Plavix a blood thinner like aspirin but works a bit differently. I'd been to the allergy clinic and told that aspirin wasn't helpful to my gut so I needed to change meds. It made sense as aspirin was probably eroding my stomach wall and I do have reflux and gastritis.

So I fixed my food intolerances but had a brain haemorrhage...just great!!!

The day for neurosurgery had arrived and I was booked in for burr holes in my skull. For those of you who are not medical it may be a bit yukky/squeamish. It's basically where you drill 2 holes in the side of your head to relieve pressure and bleeding. I know it's pretty vile. don't think about it too much or for too long!

I got changed into my hospital theatre gown and felt like doing a runner. It was one of those moments where you think shall I? I looked at the hole in the ceiling and wondered if I should climb on through that hole and 'do one'? I've never wanted to run away so much ever in my life. The sensible part of my brain said 'no Karen you really have to do this. It's a case of do and live or don't and die. No choice at all really.'

So it was with a heavy heart that I arrived in the anaesthetic room and jumped up on the theatre bed. The anaesthetists wired my head up to an EEG. It's a special machine that monitors brain waves and tells the doctors if you're properly anaesthetised or not. It was the first time they'd used it. Gulp...

We discussed my hair and how much I liked it and please could they save it as much as possible. They talked about pigtails and plaits. It was quite funny really, surreal even. I was in an operating theatre and we were discussing hairstyles!!! It's the black sense of humour that I just love about the medical world. They dripped me and I got some good drugs and next thing I was out cold into the world of the unconscious. I actually look forward to having an anaesthetic and I've had a few in my life.

Next thing I'm awake. Zing and sat upright in recovery. I made my other half Simon come and see me. I felt unless I saw him I wouldn't know that I'd survived. Poor Simon, he hates hospitals and hates blood. I spent 24 hours in Neurosurgery ICU and was in the same bed as a famous Aussie author had been the week before. How cool is that?!

My mum flew over from England with my sister in law not knowing if I'd be OK or not. How scary. I was dressed, all drips and monitors removed and talking. Amazing. They walked in and it was as though nothing had happened except for the 4 inch scars on my skull and a tiny section of shaved hair and a hairstyle like A Flock of Seagulls!

I had the best 2 weeks after hospital. I took my mum and sister in law around all my favourite coffee shops in Sydney.

Sam drove as I was banned from driving for a month until my review. I can understand. It really takes it out of you. My brain haemorrhage had been so bad that it took 2 hours for my right hemisphere to re-inflate!!!

I can look back now though and thank my lucky stars. I'm definitely one of the very lucky ones. I escaped with all my faculties intact.
I now think...whatever doesn't kill me will make me stronger!!! And it does.