Okay - so I'm 40. When I first wrote this - I was still 39 and on a lot of days, particularly in summer, feeling 60. In fact there were days where my 80 odd year old mother in law could beat me in any race she chose. I would shuffle - there was no other explanation for it - my way through the day.
I used to attend the Pain Management Unit at the local hospital. On my last visit there, the new registrar or whatever he was - having ascertained that at that particular point I was a practising Christian and told me he was as well, said to me that I needed to give up smoking. Aside from all the other side effects, it reduces the body's ability to cope with pain. Previously, he'd mentioned Champix. So I sez to him, okay - well, last visit you mentioned the Champix. And this 'lovely, Christian' doctor said to me - oh, I think you can give up smoking without that. I think you can give it up just like that - and he gives me the phone number of the Quit Smoking phone line. He then said, next time I see you, I want you to have given up smoking.
Fine - sez I. So when should I make my next appointment for? "Don't worry about that, you won't need one". That - in essence - was my support from that particular doctor. Now, he may have meant it one way - that if I gave up smoking, all my pain would go. But I took it to mean - you are going to fail, so why bother coming back....we have more important patients to deal with.
Let me be very, very, clear. Smoking did not cause my pain. Smoking is an addiction. Smoking has been compared to heroin when it comes to giving it up. I've tried since then and I've failed abysmally - mainly because of stress.
So after several months of extreme pain, grilling from pharmacists regarding medications etc, not being able to see my rheumatologist for various reasons - she herself was ill or it took six months to get into see her, after one phone call from my rheumy's receptionist saying they had to move my February appointment ( this was something like mid October) - I just said cancel it.
I then opened up the phone book and started searching for a pain specialist. Thankfully, the first number I phone was the one I needed. In tears I explained to the receptionist what was going on, the pain, the medication - everything. She took pity on me and squeezed me in for two weeks later.
This guy was good. What surprised - nay - shocked him - was that aside from arthritis/rheumatism blood tests - there had been NO other tests done. So my diagnosis of Fibromyalgia (by my first rheumatologist btw) was instantly thrown out the window. His opinion was, that fibromyalgia is a condition diagnosed when the doctors or treating physician are being lazy. To give me various drugs and send me on my way with only a poke here or there - those trigger spots that very rarely when you are at the doctor, cause a reaction....well, my new doctor found it pure laziness. He said there is ALWAYS a reason for pain.
Okay - so, this is what I originally wrote. I will endeavour to remove repetition.
Condition: Originally diagnosed with Fibromyalgia after about 20 years of unexplained pain. I have recently diagnosed as having ‘degenerative fascia disease’. And riddled in various spots of my body – most noticeably in my neck and shoulder joints, with arthritis. Not too bad but enough that some days, I cannot lift my arms to hang washing, or even lift my 18-month-old son with out extreme pain.
I also suffer from what I believe is called general anxiety disorder….but this is something I believe is connected to my hormones and my cycle as they seem to only occur 2 weeks of the month in the extreme, and very rarely when I become super housewife when suffering PMS and the house gets cleaned from top to bottom and looks spotless until my children start their ‘thing’. (I must add here that there is new research looking at fibromyalgia and bi-polar disorder - very new research, which would explain my extreme 'ups' when it comes to housework, and my extreme downs at other times when all I can do is cry.) This part, originally started as a BIG complaint against the grilling I used to get at the pharmacy regarding my use of certain over the counter (OTC) drugs containing codeine. Now the rules in Australia have changed - anyone wanting anything with codeine in it goes through it, except us CPS's just have to put up with it more frequently than anyone else.
Treatments: So far – a cervical spine block to deal with the pain the dodgy vertebra in my neck were causing by impinging on nerves. I do not know all the technical details, my pain specialist talks FAST. This worked wonderfully well for a couple of weeks until I was put under extreme duress – family emergency requiring me to face my demons of having to drive to Launceston, complicated by a first dose of a new antidepressant supposed to help. It did not. I was sicker than I had been for a very long time. Although no alcohol had been imbibed, had I been asked to take a physical sobriety test – I would have failed. I was in NO condition to drive from Hobart to Launceston.
I have now undergone a lumbar spinal block due to degenerative disc(s) and bulging discs in my lower back. This will ease my chronic lower back pain and hopefully the burning pain in my legs. Problem is, for Australia, it's the wrong time of the year since the worst of my pain is during summer with the barometer doing the tango all over the place.
Medications etc
My GP has previously, prescribed me some Brufen as required. 30 tablets. This is worked on my lower back pain. Hopefully – it will not be required now after the lumbar block, although with the degeneration in the discs, the block may last anywhere from 6 weeks ( as one friend experienced) to two years , as another friend experienced. My GP has also now prescribed me diazepam in a small dose to help control the anxiety disorder and panic attacks as I was finding the antidepressants were actually making me depressed. I do NOT suffer depression and honestly, see no need to take an antidepressant. My GP is also very aware of HOW I take my painkillers, but I will admit that the diazepam, while not as strong as the Kalma she prescribed when I was at my worst – is not quite strong enough. I have, without discussing with the GP, doubled the dose to 10mg, which IS helping me control these revolting panic attacks that hit at any time without rhyme or reason. In fact the stress is all starting my oesophageal spasms up again – these have been occurring when I’m NOT feeling stressed. But the GP believes that even though mentally I am not feeling it – it is the body’s way of saying YOU ARE STRESSED and it’s showing itself with physical manifestations. Because as soon as they occur – I stop what I am doing, seriously disappoint my children because we cannot do what we had planned to do.
I have tried Cymbalta – an antidepressant – made me feel like I was on pseudoephedrine, which I avoid like the plague - it’s like a legal dose of speed – it was awful. Edronax worked for a while – until it started making me suffer from depression….one that started, I also started putting on weight. I tried Endep – very popular and VERY good for pain. It caused bad panic attacks and actually caused weird ‘auditory’ issues. At the worst – it felt like I was talking in a tunnel and the person standing in front of me talking sounded like they were talking to me far off to the right. Evil stuff. GP tried me on another antidepressant for the GAD – made me way to sick and caused headaches after 2 tablets.
Lyrica – which is excellent for my sharp knee and shoulder pain is prohibitively expensive, so I only get that on prescription two or three times a year. Typical that the good stuff I can’t afford.
So why am I writing all this? Because of the new laws restricting the sale of codeine over the counter at pharmacies. THAT, I do not have a problem with. It’s a good idea to try and weed out the abusers. I’ve been grilled for months now by the pharmacy I regularly visit about my use of Nurofen, Nurofen Plus, mersyndol etc etc. But I’m NOT an abuser of these drugs. I’m treated like one, but I’m not. I have explained EVERYTHING to my GP – right down to when I take these painkillers. They are maintenance doses mostly, to keep the pain at a manageable level. I cannot just take ‘em and go and lie down and let them work. 4 children, aged 6 and under mean that’s impossible. So the stronger ones get taken at night where I can say to my husband – you got ‘em – I’m off to bed.
You see – pharmacists care about their clients. I also understand that. Just as I cared about the people I used to help when I worked in a sales environment. But this pharmacy KNOWS what my problems are. Pharmacists want their patients to either get better ( much like doctors) or at least, have effective medication that is not going to be detrimental to their health. But it is my belief that this particular pharmacist, believes that I am abusing the codeine-included drugs – or at the very least, taking too much. Yeah – I take two x 2 tablets of panadine/mersyndol at the most, a day and when it was really bad, I would include 2 x nurofen plus. The GP and rheumatologist knew this. (one pharmacist – not my regular one – I went to one that was next to where I’d done my groceries, tried to phone my rheumatologist to check up on what I’d said!!!) And, no matter how many times I have told them what the dosage is that I take – that I had told my rheumatologist AND GP what I was taking and when – they go through it all over again, frustrating me, making me angry – and at times – refusing to sell to me. There have been many times after one of these 15 to 20 minute grillings I have left the pharmacy and ended up in tears.
To put it plainly – paracetemol makes me SICK. I want to VOMIT. Paracetemol with codeine is not quite so bad – it’s like the codeine eases that nausea. But obviously – Mersyndol – which has a calmative in it – designed for migraine sufferers to ease their nausea – is the BEST one for me because I do not feel nauseaus. When I have had to use Panadine Forte – I have had to include one of my antihistamines – the same chemical that is used as the calmative in mersyndol, to offset the nausea that the paracetemol causes. They call this ‘self medicating’. Mersyndol works on my shoulder muscles because the calmative helps to relax the muscles while the paracetemol and codeine work in tandem on my joint pain. So – this is self-medicating. Well what am I to do? I have known for years – since I was 18 or 19 and in a bed sit on my own suffering migraines and knee pain that plain paracetemol – you may as well just flush the money down the toilet for all the good it does. In those days – I didn’t even use panadeine. I thought you needed a prescription for it so I would take up to 4 paracetemol every 4 hours to deal with the migraine and stay in bed unless I was vomiting into a bucket. And that’s taking 2 then another 2 every 2 hours. Now – one tablet of paracetemol makes me feel sick. I used to call the feelings after the migraine was gone my ‘migraine headache’.
Nurofen works – but not on all of the areas in pain. It is FANTASTIC for my lower back pain but does nothing for my knee pain which shows no sign of arthritis on the CT scans, but which could be caused the GP said, by damage to the meniscus – which in turn would only show up on an MRI. Nurofen Plus works BETTER because it has the codeine in it, which not only eases my back pain, but also helps to control my knee pain and my shoulder pain in the joints where the arthritis is.
So now with all these rule changes – a quick trip to the pharmacy will end up with me standing there for up to half an hour trying to explain to people exactly what the problem is. I hope that the lumbar block will deal with the burning pain in my legs – but that’s mostly gone now the weather has cooled down and really now, only shows itself it the temperature – weather wise – is going to be 22 degrees or above….yes – I’ve monitored myself enough to work that out. Now it’s the arthriticky pain that’s causing problems – I can tell you once again, when it’s going to rain. Different KIND of pain. But the pressure points in my legs that tend to point towards Fibromyalgia and the points on my shoulders that feel like a knife at times when touched ( but not as bad since the cervical block) are still pretty much in evidence.
Someone please tell me how do I explain to four young children why mummy is crying? Why they cannot sit on mummy’s knee because the pressure from their little bottoms hurts mummy too much? My 6 year old has seen me in tears from pain and gone to my medicine cupboard, climbed up and found the plain old paracetemol and handed them to me saying – take one mummy, then you won’t hurt any more and we can play with you or go for a walk to the community garden.
All I get from the pharmacist is – yes – all of us parents have to do that, do this – you’re not the only one. That is not sympathetic. It is not empathetic. And it certainly does NOT take my pain away. It also seems to me that this particular pharmacist is just ‘humouring’ me – that she doesn’t believe a word I say.
One night the pain in my back was so bad I told my husband I had a good might to go clobber his elderly mum so I could pinch her walking stick. I couldn’t get off the chair or the sofa without rolling onto all fours and slowly levering myself up with the help of the side of the chair and sofa next to each other.
IF I was ADDICTED to codeine – then right this minute I would be going spare, suffering from cravings. Guess what! I AM NOT. I’ve had nothing but Brufen which is plain Ibuprofen since Tuesday – and then only when the back pain has become unbearable. Actually, I lie – Tuesday night I had the last of the mersyndol – containing codeine. It is Saturday. I have no back pain thanks to the Brufen I took a couple of hours ago – but I can feel the sharp pain in my shoulders ramping up. Brufen doesn’t seem to help for some reason – probably because it’s the arthritis.
Oh – I tried the back and neck pain Panadol, I tried the Osteoeze panadol – took the pain level to a dull roar instead of an exceedingly loud roar – and made me feel very sick and the pain was still barely manageable.
Yoga helped. I was doing really well but skipped 3 weeks – one due to kids being sick, another due to me being sick, another because the teacher had made other arrangements, I then missed another because I thought it was off for easter, and the next one – making it 5 all up- because my back was too sore, and as I explained to the teacher, I wasn’t willing to risk damaging the back because I wasn’t able to relax. She has kindly offered to give me some private lessons to help me learn pain relief and control etc. I will continue with the full term next time the new person session’s start. I went one night – I took the car on a 1-minute drive. The yoga mat felt to heavy to carry, my legs were so very, very, very sore….I felt like CRAP. But when I left – the pain had eased, and I wanted to walk home. From then on – I walked – no matter how bad the pain was – just so I could enjoy the walk home. If I’m in serious pain – I go and work in the garden or throw myself into housework to make it possible to ignore the pain for a while. But the minute I stop - it floods back worse than before.
So there you have it – I have had physical examinations – CT scans (of the full body variety) and MRI’s in the two most troublesome areas. I have a PHYSICAL problem. But – I’m not old enough to walk like an 80 year old, which I do at times. You cannot SEE what’s wrong with me because it’s inside. And it’s what medication I can take that helps me to lead a normal life. Well, normal-ish.
But it is certainly my contention that addicts get a shit load more respect than chronic pain sufferers. I have said several times now – that people on the methadone program get more respect at this pharmacy I go to ( because it’s the CLOSEST) than I do with a prescription for panadine forte or a letter from the doctor saying ‘yes, she’s allowed to have this medication to help her control her pain. And I STILL get the 20-minute quiz with that at times.
Those who remember when? When I'd ride my bike pell mell around Strathgordon? Or we'd go roller skating? Riding out to Ted's Beach for a swim - or backflipping off the edge of the pool? Or climbing 4 O'Clock Ridge, the Pimple, 12 Trees....the transmission tracks up the back....climbing the little cliff things using the power cables leading from the power poles! Remember the Soccer, softball, indoor cricket, badminton I played in high school? Rowing....not for long - but I did rowing with Buckingham for a while. The daily walking too and from town – from Elizabeth College to New Town Or Netball - I loved the pain the netball caused - never have I had such blissful pain....those were the games I played my best. Now - I can't do it. Any of it. I used to want to learn to ice skate. I wanted to be a dancer...a gymnast ( now that's going back donkey's years!). All of that physical activity is GONE. KAPUT. And I am so unhappy about that.
This is not a Woe is Me or a POOR ME thing. This is life with chronic pain. I do NOT want to live like this. But if I have to be on pain medication for the rest of my life – so be it. But – again, I’ve asked a friend the next time there is a healing service at her church – or even if she knows of one occurring somewhere – I shall be there – and I do NOT care what soccer match my husband has to miss to enable me to go. I shall go. Ultimately, God is the answer – and in my case – feels like the last resort.
So, having said all that - I'm still waiting for healing. I've not had the opportunity to go to church and I still feel 'neuropathic' pain that has no rhyme nor reason. The Lyrica helps with that.
I re-started Gita Yoga last week and have ordered a Gita Yoga DVD that I can play on my lap top in a room away from the children and keep doing it. For the moment I'm on a prescribed dose of 2 x diazapam a day to help me feel normal. I mean - what the hell is normal any more?
It is MY opinion I do have Fibromyalgia as well as Degenerative Fascia Disease, which - through various Googling I think I understand why it hurts. Degenerating fascia gets all stiff and hard. You know how you lift the skin of a chicken up and there's that translucent - almost opaque - skin - that's the fascia. That's what gets all hard and stiff. The nerves of course, are abraded by the movement over this hardened fascia. To top this ice-cream of pain off with a cherry, what do you think happens when you are stressed, particularly like me who feels constantly stressed, bombarded and anxious? Stress makes that bloody fascia sticky...again, aggravating nerve endings. Nothing to be done but be un-stressed. However...I'm still waiting.
There are days where typing hurts. There are days where the slightest bump on my extremities causes pain like someone sticking a fine needle into the area.
So I'm still going....and going...and going...and putting up with it, as most of us do. Someone told me once to 'suck it up princess'. I've sucked up just about more than I can handle....simple as that.
