Thursday, 15 November 2012

Fibro-my-what-now?



I feel a bit weird blogging about my Fibromyalgia as I've only recently been diagnosed, and don't quite feel like... I "own" it yet.  I also feel bad because I've heard so many horror stories about people taking years to get diagnosed and coming across horrible "medical professionals" who didn't believe it existed, yet my diagnosis was ridiculously easy. I think that's my (lapsed) catholic guilt coming out there!

I've previously blogged about having osteoarthritis in my temperomandibular (jaw) joints, and that has always caused other related problems such as neck/shoulder pain.  Due to my arthritis I have something called allodynia on the skin on the sides of my face, which means the skin is abnormally sensitive, which can make sleeping uncomfortable (to put it mildly).  This means I sleep in awkward positions which leads to the neck/shoulder pain.

I had been having pain in my left hand for a few months when I eventually went to see my GP (fortunately not Dr Twatface) who arranged for me to have it X-rayed. I called up a week later and was told the results showed everything was fine.  My GP decided it required more investigation and asked me if I had any other aches and pains.  I did.  A lot.  I'd been ignoring it for a long long time, but I was having pain in my feet, and my knees as well as the pain in my neck, shoulders and hand. My GP mentioned that she thought I might have fibromyalgia and decided to refer  me to a rheumatologist.

I had heard of fibromyalgia before, but didn't really know the full extent of it.   I went home and did what I always do - googled it.  I read the Wikipedia page about fibromyalgia and it felt like I was reading about myself, which really freaked me out.  I had to wait a few months for the rheumatology appointment and made a concerted effort to go into it with an open mind.

The rheumatologist apparently didn't have a particularly open mind as before I'd even sat down she said looking at my medical history, she thought I had fibromyalgia.  She did do a very thorough examination, eventually ending up with the fibromyalgia tender point examination.  People with fibromyalgia are known to have certain points in their bodies where they are exceptionally sensitive to pressure.  These points are shown in the diagram below:

I nearly went through the roof with the pain when she did this examination, and she was quite pleased with herself that she had proved her diagnosis correct.

She thought that the sleep disturbance caused by my TMJ arthritis had probably caused the fibromyalgia as my body wasn't getting enough deep restorative sleep, which causes all the aches and pains.  She prescribed me Pregabalin (which I had taken for my arthritis a few years before anyway) and said that I should always take some tramadol at bedtime, and increased my nortriptyline dosage.  With that she discharged me back to my GP as there was nothing else she could do for me.

I'm now on the highest dose of Pregabalin, and to be honest I haven't noticed much difference in my pain or my sleep pattern.  When I first started taking it it was making me fall asleep all the time and in general making me a complete space cadet, but now that it has settled down I have no idea is it's actually helping or not.  When I was stepping up each dose, it felt a bit like this;



I think the thing I struggle with the most is the effect of all of the illnesses combined and how they interact with each other.  For example - I have been being treated for hypertension this year and this meant I had to stop taking diclofenac (which was actually really helping my jaw pain) as it was known to increase blood pressure.  I also had to change from the combined pill to the mini pill and pee in a bucket for three days to send for testing.  Actually, now that I think about it, the hypertension has been the most irritating thing.  As well as the peeing in a bucket (I'm such a lady), I also had to wear a BP monitor for 24 hours (twice), where it went off every 15 minutes.  It was really fun explaining to people at work why my arm was beeping and inflating every 15 minutes.  Not.  I also had to travel to Perth to get my kidneys scanned (with a rather rough doctor), and had to get radioactive dye injected in my arm to check out my kidneys.  The result of all of this was (as usual) they had no idea what was causing the high blood pressure, so they sent me off with "medical mystery" stamped on my forehead.

The worst thing about the fibromyalgia is the unpredictability of it.  As I said, when I was diagnosed I was having pain in my hand.  My hand has been fine for the last few weeks and the new 'thing' is my right leg.  It is agony - even when sitting down.  I'm constantly having to move it/stretch it to try and get comfortable and it never is.  When walking, my hip starts to ache after about five minutes.  My right shoulder muscles are constantly out of place or in some form of spasm.  The pain in my shoulder has kept me awake all night more than once


I apologise for the depressingness of this post - I tried to cheer it up a bit with all the memes I stole from the chronic illness cat tumblr, which is completely awesome.

If you really want to know what it's like to live with chronic illness, you should read The Spoon Theory by Christine Miserandino, it should honestly be required reading for all friends and family of us 'spoonies'.

If anyone has any questions, or any suggestions of things they would like me to go into in more detail, please leave me a comment below!

3 comments:

  1. I learned to keep trying medications until you find the right cocktail for yourself. I take savella and namenda (for the fibrofog) daily with tramadol for the pain. It seems everyone is different. Drop me a line if you ever need to vent. We very much understand.

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  2. Hi! Yeah, I'm going to give the pregabalin a month or so and then see what else is on offer. I'm going to try to get referred to the pain clinic as well, they offer a lot of alternative therapies for free.

    I'll keep that in mind, and of course the same goes for you, you know where to find me!

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  3. Oh yea, one of the most frustrating things is having to go off "good" meds because an organ or whatever isn't doing well because of it.

    Okay, here's what I learned in the years I've dealt with fibro. When you have the pain your body moves differently. So your leg may be hurting 'cause you're walking slightly different. It may not be something noticeable to you. Are you sleeping on your hand, leaning on it, holding your purse...? It could be something really small.

    Warm/hot showers are very helpful. Massages. Heating pads. Yoga. Stretching. Even meditation. Reduce stress. Healthy eating.

    Great post though. It helps to share and it's "nice" to know we aren't alone.

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