OOPS!!! I forgot my CRPS anniversary.

I just sat down to my computer and realised that its the first of March and two days past my one year CRPS anniversary. Oops!!! Oh well. I did go out for dinner tonight so Ill  go back and dedicate tonight to my attempt at celebrating. lol.

I realise now that I had CRPS much earlier than Feb last year. I was injured in a burn injury the October before and put any symptoms down to healing and nerve growth. I just didnt have a flare until three and a half months after the original injury. It came as a real blow to me because I had just gotten my life back on track, started to remove my compression garments, had taken up running and gone back to work and was looking at moving to Melbourne to start over with a new perspective on life.

What a year its been. The worst I have had by a long way, but it hasn’t all been bad. I have made some fantastic friends through CRPS, become much closer to my family and friends and have a far happier outlook on life. I just don’t sweat the small stuff anymore.

Im spending next week in Adelaide so perhaps I’ll go out to celebrate the best I can. For my burn anniversary, I went to my favorite restaurant with the family and friends who had supported me. It was a fun night, as I had wanted. I didn’t see the point in dwelling on what had happened and rathered I celebrate the good that came from it and how lucky I was compared to some. I would have celebrated the other night just the same. If only I had remembered!

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MEOW: My cat is the best medicine

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Ok, sure her purring and weight isn’t ideal on a bad day where even my clothing can hurt my poor body, But I love my little girl and the comfort that she gives me is worth that extra bit of discomfort. I’m in pain anyway!  On a not so bad day, I feel blessed that I am “worthy” of her cuddles. Yeah, any one with a cat knows what I mean by that! On nights when I’m flaring Molly will come to bed with me or climb my window screen until I hobble out of bed to let her in. She has taken to sleeping next to me rather than on me since I’ve developed CRPS. On a bad day she sticks by me and has taken to leading me to the couch and waiting for me to sit before lightly climbing on. She seems to know before I do that I need to rest. Although, I do think she loves having me there to nurse her all night long.

IN THE MEDIA: Chronic Pain, 7.30 South Australia

“It is a common condition, patients suffer from it, doctors treat it but Medicare doesn’t acknowledge it. It’s chronic pain. But what causes it and why do traditional drugs seem to have little effect?”

pain 730

This is the introduction to a news story that was shown on our state edition of the Current Affairs program 7.40. Its really exciting that this show has done a few stories on Chronic Pain already this year and although not exactly about CRPS, It still relates back to the treatments and the health system that I and many other Australians rely on.

I posted about the first story here. Australia’s Pain Epidemic

This story by Mike Sexton and shown on 7.30 South Australia, on Fri, 21 Feb, 2014.  Duration: 6min 13sec. It starts as stated above and then leads into some horrifying, yet unsurprising statistics that Medicare (Australia) has found that up to 5% of patients in Gp’s clinics are seeking relief from Chronic Pain. It again mentioned that most Australian’s suffering from Chronic Pain wait 2-3 years for a placement in a pain treatment facility. This leads to Gp’s prescribing more and more opioid pain Medications and leads to dependency. Clearly there is a cycle here that must be broken.  I’m hoping that the Website will post a manuscript to this story as it has done in the past so that I can post it.

One exciting thing bit of information that I learnt from the story is of a local research project happening right here in South Australia at the Bionomics Facilities in Hindmarsh, is a focus on Ion channels and their role in Chronic Pain. The story went on to report of an investment of 170 million dollars (Aust)  being made into this study by Merck & Co. That is pretty exciting really. I went onto the Bionomics Website and found the following:

“Bionomics has entered into a collaboration with Merck & Co. to develop a novel oral treatment for chronic pain. Chronic pain is a severely debilitating condition with a large unmet medical need. Current analgesic medications which include anti-epileptics, anti-arrhythmics, opioids, NSAID’s and anti-depressants, are either ineffective, associated with a range of dose limiting side effects or have the potential for abuse and addiction. Our novel treatment which is expected to deliver greater efficacy and safety than existing pain medications is directed towards an undisclosed target that has been strongly linked to chronic pain in humans.”

www.bionomics.com.au/research-development/pipeline/cns-central-nervous-system

Well Im off to investigate further and see what else I can learn about this trial and even if I can participate in any way. 🙂

 

CRPS SOUNDTRACK: Everybody Hurts

I have to say that music has gotten me through some long and lonely nights. Some nights I have felt like my life is pointless and whats the pint in it all. Its funny when you see music in a new light. Overnight I was watching Rage on the ABC and the Guest Programmer put on R.E.M’s Everybody hurts and I really understood what they were saying. Im thinking when this happens Ill do a post like this and make it a part of my CRPS SOUNDTRACK posts. Ill try to not let it all be too serious.

“Everybody Hurts”
R.E.M

When your day is long
And the night, the night is yours alone
When you’re sure you’ve had enough
Of this life, well hang onDon’t let yourself go
‘Cause everybody cries
And everybody hurts sometimes

Sometimes everything is wrong
Now it’s time to sing along
When your day is night alone (Hold on, hold on)
If you feel like letting go (Hold on)
If you think you’ve had too much
Of this life, well hang on

Everybody hurts
Take comfort in your friends
Everybody hurts
Don’t throw your hand, oh no

Don’t throw your hand
If you feel like you’re alone
No, no, no, you are not alone

If you’re on your own in this life
The days and nights are long
When you think you’ve had too much of this life to hang on

Well, everybody hurts sometimes
Everybody cries
Everybody hurts sometimes
And everybody hurts sometimes

So hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts

Lyrics are from

Too young to be “hooked” on pain meds! So now what???

Hi there!!

Sorry I haven’t been posting very much. That’s the thing with CRPS in your hands, typing can really hurt. I’m looking at ways to sort that out. Smaller posts, software that types what I say etc. Mostly typing has’t been too difficult for me, (starting to hurt now) In fact I have found it to be great physio and part of how I reclaimed my hand. BUT… I have been taken off of my pain killers (Tramadol) and put back onto Endep (amitriptyline) so that it works along side my maxed out dose of Lyrica, 600mg/day. I was supposed to be on Endep anyway, but it and Tramadol have a tendency to cause you to have fits. I wasn’t too interested in that. To be honest, I was happy to get rid of the Tramadol because in a matter of 5 months it had made me high on 50mg when ever I needed, to not doing too much at all on 450mg/day.

I have started to see a new Gp and he agreed that the Tramadol was only giving me bad side effects and took me off  of it. But here is the catch… I get nothing to replace it with because apparently, 30 is too young to be hooked on Opioids. It wasnt opioids that I wanted anyway. Its a solution to manage the pain that Im after. I will say that I was a little panicked about leaving with nothing for breakthrough pain. Especially as I have no desire to go to my local hospital if my pain got out of hand. They only gave paracetamol/codene for my burn injury. Im sure they will break out the good stuff for that pain that they cant see…. The next hospital is 100km away, so Ill be asking what to do when I go back this week.

So once the shock had worn off, I decided to give being free of Tramadol a go. Its been about 3 weeks now and the withdrawals are gone and I feel so much better within myself. It seems that the Tramadol was adding to my problems more than helping. Although they were helping more than I thought. But there is no going back now! and I have stumbled onto some reading on going without Opioids and I am seeing not taking them as possible. But then I’m typing this a 4am because I’m in so much pain that I cant sleep. This has been the norm since I got off of the Tramadol, and Endep isn’t helping with sleep the way it should because the pain is so bad. Im just coping with the pain but It cant go on like this.

Im off to Adelaide in just over a week to see the pain specialist and organise the next Ketamine Infusion. I cant wait really. 3 days of rest, sleep and no pain. Heaven!!! Plus Im seeing my new Neurologist and also my Physio. I plan to come home with some solutions to my pain. Once al of my appointments are over, Ill be going to spend a weekend at my friends place and attempt to do something for my B’day. Its my second attempt at a 30th birthday. Last year I was in bed and in hell.

Ok, I’m in a lot of pain now so gotta stop. Ill post more, I promise. Even if its short and sweet. 🙂

Id love to hear your thoughts on my situation or if you have experienced the same.

xxx

walking is nice to be able to do!!

Well I have had an interesting week! After last week’s activities I thought that I had gotten away with all the horrible flares etc that comes from doing anything. But no! I wasn’t that lucky and by Monday I suddenly was not able to walk. I could only just stand and kind of get around in a kind of pain that I hadn’t felt before. It was kind of like walking on broken glass but your legs wouldn’t move to get you safety. It was just too painful to stand, let alone walk. And if that wasn’t scary enough my dystonia, spasms and cramps had gone into overdrive and I was constantly felling like I Was about to go into a seizure. Oh, and I can’t forget my sudden inability to pee and …. I’d sit there ready to go and my brain wouldn’t send the message to let anything out. Basically I was “crapping my dacks” (no pun intended) because this flare felt like it had come from nowhere and was going to leave a permanent mark on me. I’d had days to recover from having my 4 year old cousin stay with me. I’d had the little flare to pay for that one. S really this felt like a cruel blow that had me feeling fearful of my future.

The only time I left the house was on the first day when Mum came home from work and told me I was going to the beach to soak my body in the ocean. The horror!!! Lol. So off I went, I managed to get my swim suit on by myself and get myself back to the lounge to wait for everyone else and I was stuffed. I really didn’t want to go. Sleep was the better choice for me. But mum dragged me out anyway. Lucky that we get to park on the sand here and it was only about 20 metres to the water. I was really touched when she helped me walk out to the water and into the sea. Mum surprises me all the time with the way that she helps me. Once I was in water over my waist I was feeling good and for the next hour everything was fine I love the way buoyancy looks after you. Funny story! I couldn’t do my bikini top up tightly because it hurt too much. Normally I like to be strapped in tightly. I didn’t know that boobs float. Haha!!! They really do and I thought it was really entertaining. At least I wasn’t going to drown. Lol. The beach was great and cooled me down, gently massaged me and gave me a big natural hit of magnesium. I was walking a bit better after but only for an hour or so and I went down hill again.

I will say that I’m so happy that I am in the half way area of my ketamine infusion cycle. The extreme CRPS/RSD pain that we all know so well was not a part of this flare. Not sure how I would have survived this one if I did have the pain. What pain that I did feel was cramping and shocks from spasms etc. My body still ached and hurt to stand and use, but it was only a small fraction of what I could have experienced. I’m really thankful for my wonder drug and that it helps me like this.

Lucky for me this only lasted 3 days and today I woke up able to move my stiff legs and only needing to wait for my morning meds to kick in before moving around. I’ve done some Physio today and loosened up my legs and even went to mums café for afternoon tea. I’m feeling really lucky because I didn’t see my situation improving. This was the kind of flare that hits you hard and feels like the next level of the disease, Scary stuff. I’m really grateful to almost be back to normal. I do think my disease is still progressing at a fair rate but this would have been too much.

To celebrate my legs getting back to work, I think an appropriate song is in order!

Hope your all well. xx

IN THE MEDIA: Australia’s Pain Epidemic.

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The other day I was tagged into a Facebook post  of a news story called Australia faces silent epidemic of chronic pain that was shown on the current affairs show, 7.30, on the ABC (Aust). The story its self wasn’t exactly about CRPS but it may as well have been. It discussed the shortage of pain treatment in Australia and the long waiting list to access treatment. I once again was reminded of how lucky I was to get into treatment within three months. The story also went into the way we suffer and rely on addictive opioids to get by each day. I really related to this story and even felt a little emotional watching it. It was so good to see that we are getting some sort of coverage within the media for all sufferers of chronic pain.

Here is a link to the story:

http://www.abc.net.au/7.30/content/2012/s3548714.htm

And for those that cant watch it, here is the transcript of the story:

 

Australian Broadcasting Corporation

Broadcast: 18/07/2012

Reporter: Sarah Dingle

One in five of us will feel it and it costs some $34 billion each year, but how well equipped are we to face and treat chronic pain?

Transcript

LEIGH SALES, PRESENTER: Chronic pain is one of Australia’s most expensive health problems, costing our economy around $34 billion every year. Yet there’s only a handful of clinics that specialise in treating pain. It might surprise you to learn that these days, pain isn’t just considered a symptom, but a chronic disease in itself. Even so, most medical professionals still aren’t trained to deal with it. Today, the New South Wales Government committed $26 million towards developing new pain management services, but that will only meet a fraction of the need. Sarah Dingle reports.

SARAH DINGLE, REPORTER: It’s dinner time at the Quinzi house, but one member of the family hasn’t made it to the table.

ANTONELLA QUINZI, CHRONIC PAIN SUFFERER: When I get home, 6.30, quarter to 7, bath, I can’t even eat sometimes ’cause of the pain, and I wait for the medication to start working. Go to bed. I go to bed. That’s my solace.

SARAH DINGLE: It’s seven hours since Antonella Quinzi last took a heavy-duty painkiller and the strain is beginning to show.

ANTONELLA QUINZI: Right now I can tell you 100 per cent, I’m trying to hold it together, I’m in front of the camera, I don’t want to look like, you know… but yeah, it’s hard.

SARAH DINGLE: What kind of sensations?

ANTONELLA QUINZI: Well, numbness. Throbbing pain. You feel like the whole body is on fire. It takes your breath away.

SARAH DINGLE: Seven years ago, with her family complete, Antonella Quinzi had a hysterectomy. It was meant to be a routine procedure, to put an end to persistent gynaecological problems. But it left her with severed pelvic nerves and a shattered life.

ANTONELLA QUINZI: It got so bad two years ago that I didn’t want to live any more. And I know I shouldn’t say that. Because God gives you a life to enjoy to the fullest. And… you know, but we all get weak. There’s weak moments.

MICHAEL COUSINS, ROYAL NORTH SHORE HOSPITAL: Chronic pain is the most prevalent, most costly and largest health problem that at the moment is largely undiscovered and terribly undertreated.

SARAH DINGLE: At Sydney’s Royal North Shore Hospital, Professor Michael Cousins runs one of the few multi-disciplinary pain clinics in the country.

Patient Philip Lewington has chronic pain. Pain that persists long after the initial injury that caused it has healed. The former machine operator had his thumb crushed six years ago in a workplace accident.

PHILIP LEWINGTON, CHRONIC PAIN SUFFERER: I have tried acupuncture, pain management, drugs galore. Physiotherapy. And none of it’s worked. I thought about chopping it off, but…

DOCTOR: You thought about chopping the thumb off?

PHILIP LEWINGTON: Yeah.

DOCTOR: What do you think that would do?

PHILIP LEWINGTON: I don’t know.

DOCTOR: Ha ha!

PHILIP LEWINGTON: Get rid of the pain I hope.

SARAH DINGLE: Here patients are treated by a team of specialists. Including clinical psychologists to ease the enormous mental burden of ongoing pain.

PHILIP LEWINGTON: My life, family life is nowhere near what it was. Um… sex life, basically non-existent, because of medication and what not. So not good at all.

SARAH DINGLE: It may not seem like it, but Philip Lewington is one of the lucky ones. Many wait for years for this kind of treatment.

Victorian pain specialist Dr Michael Vagg is says it’s a national embarrassment that that Australia pays almost no attention to its epidemic of chronic pain.

MICHAEL VAGG, PAIN MANAGEMENT UNIT, GEELONG HOSPITAL: One in five Australians will develop chronic pain at some point in their life, and only one in 20 of those people will have it adequately addressed.

ANTONELLA QUINZI: You live your life around the tablet.

SARAH DINGLE: Like many sufferers of chronic pain, Antonella Quinzi went to her family GP, who prescribed the opioid painkiller oxycontin. Now she’s an addict.

ANTONELLA QUINZI: The first year of taking the oxycontin I went from five milligrams to 10, 15 and 20, then I went up to 30.

SARAH DINGLE: Without the medication, the pain is overwhelming. She gets rashes and starts to shake.

ANTONELLA QUINZI: And that’s the reason why I’ve had to do little sneakies and take extra oxycontin at work. When you’re desperate, you will do anything to get rid of that anguish and pain.

MICHAEL VAGG: Many GPs feel compelled to provide strong painkillers, even though the best evidence would suggest in many cases they’re not improving people’s quality of life in the long term.

SARAH DINGLE: Pain specialists say chronic pain is caused by damaged nerves, sending electronic signals to the brain, and it could be that drugs are not the answer. Instead, surgeons are working with technology, inserting electronic stimulators next to the spine to block the pain signals. Now Australian researchers are about to take this much further, in a world-first.

MICHAEL COUSINS: There’s the tip of the needle. So that’s still going in the mid-line. That’s really good.

SARAH DINGLE: Professor Cousins carefully inches the electronic stimulator close to the spine.

MICHAEL COUSINS: Still wants to go a bit to the left. It’s OK to go a little to the left but not too much. All right, we’re ready to do a trial stim now.

SARAH DINGLE: For the first time, the surgeon can see live nerve responses recorded as he operates. And move the stimulator so it best blocks the pain signal.

MICHAEL COUSINS: The electrode is just to the left side of the midline. And half a millimetre of difference in position will produce a different area of stimulation. So we’re waiting now to see what the patient actually feels.

NURSE: Is that tingling?

PATIENT: Yes.

NURSE: And is that in your left side?

PATIENT: Yes.

NURSE: Is it in your left back?

PATIENT: No.

NURSE: Buttock?

PATIENT: Um… no. It’s, like, down the whole leg.

MICHAEL COUSINS: We might bring that down just a touch then.

NURSE: Yep. Electrons 2, 3, four when you’ve got ankle, all of them there, just to the middle of the buttock.

MICHAEL COUSINS: We managed to get electrodes placed in just the right spot. She started to feel some pain relief. It will take a couple of days to get that fully operational.

SARAH DINGLE: For now, Antonella Quinzi’s only source of pain relief is medication. But she clings to that same hope for a cure.

ANTONELLA QUINZI: Pray for healing. I pray for healing. I pray that I will wake up one morning and… not have this.