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...

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

How many pills!??!!! Too bl%&*y many

G'day, you're back again. Hello and welcome. I hope your week has been kind to you and you've been kind to yourselves :-)

I'm sure at some point you've all found yourselves going, 'how many pills?!!' I know I have. And you know when you take too many pills that you are on first name terms and christmas card lists with your pharmacist!!! LOL.

One of my most hated tasks each week is the pill dispenser. Putting all those little pills into each day slot. Then there's the multi's vitamins and fish oil capsules etc. You'd think as a nurse I'd of sort of embraced it by now?! Nah, not one bit. But I do it and I pop those pills and just get on with it.

I'm on a lot less now. There's some I'll never come off. Here's my little list:

Pariet (Rabeprazole) 40mg for gastritis and reflux
Nizatidine (Tazac, Axid and Nizac) 150mg again for reflux at night time
Plaquenil 200mg daily
Folic Acid 5g the day after my lovely chemo drug, Methotrexate
Methotrexate 20mg once a week. I've been told I'll NEVER come off this. Boohoo. It makes me feel so nauseous the morning after I've taken it. But its suck it up girlfriend and stop moaning.
Endep (Amitryptilline) 50mg at night for Fibromyalgia
Herbal sleepers - Valerian and Tranquil Night from Blackmores
Panadeine Forte as needed each day, can't sleep without it

You don't realise how big your list is until you catch your family watching you taking your pills. My dad takes a pill a day for cholesterol/BP. My mum takes nothing. I was sleeping in the same bed as my sister for 3 weeks a few years ago, when I went home to England, and I kept waking her up when I took my panadeine forte, scrunching the aluminium foil pill packets!!!! How naughty!

I think us Lupies are very organised. You have to be. Drs appointments, keeping on top of your scripts, the pill stash (now in a much larger box) and doling out the pills into the weekly dispenser.

I'm sure many of you get very bored with the pills but we know how important they are to keeping us alive and well. I'm over the resistance stage and I'm at acceptance. I used to be the sort of girl who would resist a paracetamol for a headache. I look at my stash now and can hardly remember that girl. I fought the steroids and the chemo drugs. Once I gave in and admitted defeat and took them and looked at my life I started to get better. It has been a long long road. I'm there...in remission...and I'm praying that I stay there. Every little joint ache and twinge makes you aware that you can't take remission for granted. Its a lifestyle thing and I'm so very careful.

BTW I'm back to my writing and thats a big part of who I am and why I'm well.

Have a good week and I hope your pain days are few and your good sleeps are many XX

How writing saved me from Lupus

G'day again, you're back. Hello, its so nice to see you. You're going to love todays blog. And I'm giving something away for FREE. 

I'm going to take you forward 3 years after all of that yuk stuff. Theres a lot of fun stuff in my life and probably more fun than not. I'm a glass is half full girl :-)

I had started writing a few years ago but got derailed by my lupus. When I'm in active disease I lose all my creativity. Just getting out of bed each day is a big ask.

Then I landed well and truly on my arse. I walked out of my job. It was either the job is going to kill me or I have to walk away. I was a nurse working in outreach, visiting child protection cases and clients with severe mental health issues. I'd had one bad child protection situation too many and I was done. Burnt out, spat out and i was empty.

So I had no choice but do 7 MONTHS of bed rest. Yes holy moly. Seven freakin' months!!! I'm very much a busy busy busy doing everything all at once girl. So for me to have to take 7 months off just freaked me. I had no money. I had no prospects but I had Simon and we had love. And I still had a brain and a mouth.

I was exercising and going to hydrotherapy twice a week. However it was the balance in my life and getting the toxic stress out of my body, through the words making their way onto the page, that made all the difference.

I belonged to a writing group of whom 2/3rds were published authors. They'd all been to Uni and done a creative writing course. I learned so much from them. They encouraged me and have made me the writer I am today.

I went to the cinema 3-4 times a week. I totally indulged my creative side. 

I had 2 cats, Tabitha & Trim who sat at my feet on the bed. It was the only place I was comfy. Pain was a big issue. I had fibromyalgia by now and was on Endep. I'd had bursitis in my hips so many times that I was walking like an old lady. Sleep was a nightmare.

So I put my laptop on my knees and put pillows all around me and I wrote furiously. And within 3 months I had written a book. A work of  adult fiction. It was loosely based on some critical incidents at work. I'd set it in Sydney. My main character has Lupus. Don't they always say to write about what you know?!! It's a Psychological thriller with some voodoo/occult themes. Yes its dark but it's true to life. You'll like the lupus bits. I really go for it, no holds barred.

I've already sold many copies on Amazon which has totally amazed me. It's now available again for FREE to download and read. You don't need a kindle. All you do is download the Kindle App onto your PC, iPad or whatever electronic device you use. And it's on special offer for the next 5 days including today.

http://www.amazon.com.au/The-Shaken-Cradle-Lena-Thompson-ebook/dp/B00G8TQCYU/ref=sr_1_1?ie=UTF8&qid=1400395493&sr=8-1&keywords=the+shaken+cradle

All I ask is that you leave me a review once you've read it. Thank you so much. It means so much. Please share this post onto Facebook, your other social groups, Pinterest, Twitter etc. 

But most of all I want all you Lupies out there to realise that anything is possible. You can do it too. And I must add a caveat that I know will make you gasp!!! Two thirds of the way through my book I had a MASSIVE BRAIN HAEMORRHAGE!!! Yes, really. It was the biggest they've seen with no deficit. I really am the cat with nine lives.

Enjoy reading the Shaken Cradle by Lena Thompson and I'll see you all again real soon XX 

Moving in and moving on and miscarriage no 5

It would have been rude to refuse such a kind offer! I'm referring to my new boyfriend, Simons' insistence that I move in with him. 

I was so 'off' men that it wasn't even funny. My trust had got up and gone. But I figured that I had to make a choice. My housemates were moving back to their respective countries. So it was either recruit new housemates and live like a perennial Bridget Jones or bite the bullet and just do it.

The litmus test was my tabby cat, Starsky. She'd taken to Simon immediately so it was a real no-brainer. When my recent blind date from a dating website had gone wrong, Starsky had pooped in the corner of Cathy's room. Yes, Starsky was one very astute cat. And Starsky was a real lady and never pooped anywhere apart from the litter tray.

So that was that. Simon said, 'Go to work, I'll pack all your stuff up, hire a van. You just go to work as per usual and when you come home it's all done and I'll look after you and Starsky.' Too good to be true? No not at all. As I said previously, I'm still there 8 and a bit years on! I told Simon all about my Lupus. Did he bolt and run for the hills? No, he didn't. He was a man and said no problem I'm here to look after you and Starsky. And he did and he has. He is a rare diamond. I owe my remission to Simon. He has believed in me and that belief has led to some amazing things.

I can't lie though. There have been a few blips (all health related) and they have been bad but I can't tell it all at once. I'm a writer. We like to string the suspense out a bit!!!

And here comes the thing that cascaded the awful events that have happened to me.

Because I was nearly 40 and Simon was 43 we decided that we should try for a baby. It was something we had both been denied in our previous marriages. I knew it was risky and knowing what I know now would I have changed my mind. No, absolutely not.

I got pregnant easily and had the usual bleeding at 5-6 weeks that had characterised my previous pregnancies. The scans were A OK so I relaxed. Ten weeks came along and I was feeling amazing. I had an inner glow.

I had no reason to think anything would go wrong once I'd got to 12 weeks. I really thought I was home and dry. I went for my 12 week scan by myself as Simon was busy at work. Within minutes of getting on the examination couch I sensed something was badly wrong. My face had suddenly become very red that morning as well. There was no feral heart. The baby was dead. My blood pressure was sky high at 170/110. I was pre-eclamptic at 12 weeks. Holy F**K.

I screamed, I sobbed. The noises coming from my body were like a wounded wild animal. I was left to cry in a corridor for ages. There were no kind words, no tissue no comfort. Just awkwardness. The Dr was embarrassed. He didn't have a clue what to do with me or what to say. I'm a midwife and I've had to work with him since. Double awkward. Every time I see him I'm taken back to this day. It's still raw.

I was on Clexane and Aspirin and Prednisolone 20mg. It didn't make any difference. I was utterly bereft. Simon was really good. He was upset too. I knew then, that this was my very last chance. I was never going to become a mum.

My job involves helping mums and dads with their babies, helping them learn to sleep, feed and develop. It's confronting. I get asked, "Do you have children?" quite often. Mostly I reply, "Unfortunately it didn't happen for me. I'd have liked a few." It leaves my clients/parents feeling awkward. Some press the point and ask, "Why" or "What happened?" How do you package it up nicely and not make them feel awkward? Its difficult. I belong to a very big family. I have 21 cousins,  most have children, several. I've become very motivated with my career. It fills a big void in me. It's also why I write. It helps.

 

I've since asked an Obstetrician/Gynaecologist why it happened. She said it most likely my very unstable lupus. So not all of you will experience such a disaster. But some of you will. I think the Lupus together with the Antiphospholipid Antibodies/syndrome were the problem.

I'm now a mad cat lady. Some people say they're my children. I don't see it that way. Cats are lovely but they're not children. They're cats.

Refusing to take prednisolone (steroids) was one of my big mistakes

Hello again, nice to see you back here again. 

I hope you're all having a good week and you Lupies and Fibro people are all being extra kind to yourselves and getting some sleep.

As you know by now I'm a nurse. I have Lupus and Fibromyalgia and a heap of other diagnoses. I can't tell you all at once. It's way too big. Things that have happened to me belong in the rare basket. I've always been somewhat of a drama queen so it fits in with me!

BTW my mum is now reading my blog so must keep my potty mouth to a minimum. Teehee. Hello mum XX

As you may recall I was really sick and my ANA was 1:1280 on diagnosis. It doesn't get any worse than that. My sensible Rheumatologist advised me to start steroids to get my disease under control.

I refused point blank.

I'd seen my friend 'Janet' who also has Lupus and what high doses of steroids had done to her and I didn't want that to happen to me. D'oh that was a really stupid decision. I'm a very determined sort of girl. Some may call me stubborn! We don't always know what is best for us and I certainly didn't. I have improved at that since. Now I'm on first name terms with my local pharmacist. We know each other very well. I'm there several times a month. He sends me a Christmas Card.

I agreed to take a NSAID Celebrex (non steroidal anti inflammatory). It didn't do very much at all. Pain was a huge issue. My sleeping was badly affected. My disease escalated to such an extent that every time I rolled over in bed at night I would wake up. I couldn't lie on either hip or even on my front or back. I was a basket case.

We (me and my now ex husband) moved to Sydney for work. His job had ended with redundancy. I was the bread winner. I started working at a huge teaching hospital on Postnatal and Antenatal as a Midwife. And I wasn't sleeping.

I got sent to see the Occupational Health Doctor. He was amazing. He referred me to a Rheumatologist. I got an appointment within a week. He gave me pain killers...MS Contin 15mg SR to take twice a day. Yes this was morphine, a controlled drug. I had to take it to sleep. No other pain relief had any effect at all.

http://www.dailystrength.org/c/Lupus/forum/14267148-hip-bursitis-pain

I was horrified at my decline. I had steroid injections into my hips, both of them. They hurt like hell. But they fixed my bursitis. I've never experienced pain like it. Bursitis is hideous. My left knee was swollen and that knocked my hip out which created the inflammation of the hip socket.

http://www.lupus.org/answers/entry/joint-muscle-pain-in-lupus

I had to start steroids. My blood results were awful and I was told letting this disease take hold was disastrous. I was started on 20mg of oral prednisolone and not long after I was started on Immuran (Azothiaprine). It helped and my pain was slightly less but I still had very active disease.

It was about to turn very ugly and my life was really in the balance.

My diagnosis sinking in and starting to write

I was really struggling with my health since my recent diagnosis of lupus (SLE). 

My joints hurt like hell. I was popping panadeine like there was no tomorrow. It didn't hardly touch the sides. I was so tired that I lived on the couch. Doing a full days work was torture. 

I started eating as I felt tired and I thought if I ate it would help! No it didn't. Instead I gained a couple of stone just like that. Hunger, pain and tiredness are so linked. I'd never been overweight before but it was starting.

I was living and working in Melbourne. Australia is a great place to live but not if you have Lupus. I was photosensitive. My face would flare up at any sun exposure. I had to walk in the shade, wear big hats and cover my skin up.

I started to think about how I was going to live with this disease. I knew that I may get ill, really really ill. Could I still do my current job longterm? I was an outreach nurse. We call them Enhanced Home Visiting. I was visiting mums with mental health issues and child protection cases. I had sleep and behaviour problems to fix in babies and toddlers. It was tough. My work was very stressful. Maybe not ideal with an auto-immune disease. Its something all Lupies have to really think about. I was good at what I did but did that really mean i should continue to 'save the world'? Or maybe I should be concentrating on saving me?

Nurses are known to be kind to others but we are not always kind to ourselves.

This was going to take some working out. I knew I really had my work cut out.

A lot of people with Lupus are high achievers, Type A personalities. We eat stress for brekkie.
But stress is toxic. Cortisol is our enemy.

http://kendraisola.blogspot.com.au/2010/03/lupus-personality.html

http://www.lupuscolorado.org/can-knowing-your-personality-type-help-improve-your-health/

So I had to get thinking. What could I do that was stress free and still allowed me to rest. My joints hurt like hell, I was exhausted. 

I love reading, cooking and baking, knitting and crochet. No none of these. I had no concentration span for any of them. And yes I crocheted this blankie for my sisters bub subsequently.

It's important to know that I have the craziest imagination ever. I was reading classics at 7 years old. I speed read, speed think and speed write.

Something told me to write. I didn't know what or how. So I just got on the computer and started with an idea. It became a paragraph, then a whole page. I gave it an outline and a plot. I looked at it and looked at it again. I had no idea where this story had come from. It was fiction. It was way out there. But it was fun and it intrigued me.

I decided to do a creative writing course in Melbourne at an evening class. It was fun and got me thinking. We had to do some writing activities in the class. The lecturer loved my stuff. It made me feel good. It gave me hope.

You HAVE to have hope. Its the one thing, the only thing that keeps you going. Love to all and big big hugs :-)

As we say in OZ 'love youse all and see y'a soon, real soon.'