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
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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. 

D.I.Y. Magnesium Oil.

Recently I embarked on how I could manage CRPS in a more natural way I was seeing a limitation to my current meds and was getting sick of the handful of pills that I as taking twice a day. One of the avenues that I looked down was supporting my brain and nervous system through vitamins, minerals and great food. Magnesium was one of the standout minerals and although I already knew that magnesium absorption through Epsom baths and soaking in the ocean was of great benefit to us sufferers I was now learning just how powerful it could be for us and the management of our condition. And in fact many conditions are benefited by supplementing magnesium. This article from Mind Body Green called Why Women Need To Get Enough Magnesium can give some great insight into that.

As I wrote in my post called Magnesium! Oh How I Love You I planned to boost the amount of Mag in my body like this…

  • Magnesium tablets with added Vitamin B6.  I’m taking Bio Organics Magnesium Forte. Is a vego option that I have added to my morning pile of pills. The B6 helps the body absorb the Magnesium.
  • Magnesium Oil. So apparently magnesium absorbs better through the skin. I have made my own Mag Oil and it is easier and far far far cheaper than any brought product. I have been rubbing it into my hand daily and arm and feet on bad days. I’m loving this option. I’ll share how I made I soon.

Tablets were easy done but it was the Mag Oil that I needed to get my hands on. Looking online I was faced with paying around $30 for a small 120mg bottle and there was no way I could afford that on the small amount that I live off of each week. So I went looking for alternatives and before long I found a recipe on a great post by Wellness Mama called How To Make Your Own Magnesium Oil. Jackpot!!! So I set about buying the ingredients and before long I was cooking up a storm and I have to say that it was so much cheaper this way and so easy it seemed stupid to spend all of that money on a premade product. (Here is an article from Ancient Minerals on the differences between the two. It’s up to you if you’re concerned by this. I’m not personally!)

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My Magnesium Oil

I took the instructions that I found online and loosely based my own method on that.

Recipie

½ cup Magnesium Chloride Flakes
½ cup Distilled water.
Saucepan to heat the water
Metal spoon
Small spray bottle (plastic or glass)
Essential oils, few drops (optional)

Method

 It takes approximately 10min to do.

Boil the water lightly in the saucepan and then remove it from the heat
Put the Mag flakes into the water and stir in with the metal spoon until the flakes completely dissolve.
Add some Essential oils if you would like. I used Lavender for its calming effect but you could use some others that either smell great or have benefits to your condition. For example, Rosemary, clove, chamomile, peppermint etc.
Leave the oil to sit and cool, especially if you’re storing it in a plastic bottle. It may melt or release some chemicals into your oil. Room temp is best.
Pour the oil into the bottle and use.

How To Apply

Spray the oil onto the affected area for pain relief and allow it to absorb. You could also spray it onto other limbs, your stomach and I like to spray it behind my knee after reading somewhere that it absorbs better there. You may feel a little tingle at first but it will settle. Spraying onto any cuts, shaving rash etc. will naturally sting. To be honest, in a flare the sting feels better than the pain. Lol.  Use as much as you need but enough sprays to dampen your skin should be fine.

Leave the oil on your skin for about half an hour and wash it off. If you leave it on your skin it will feel oily but hasn’t had any bed effects on my skin. But each person is different.

Notes

  • If the tingling/sting on your skin is too much to bear than you can heat up some more Distilled water and dilute the mixture. On the other hand I have thrown some extra flakes in to strengthen the mix and it’s been fine.
  • Perhaps test the oil on a small part of skin just in case it isn’t for your skin.
  • Make sure you use Magnesium Chloride because other forms of magnesium such as Magnesium Sulphate (Epsom salts) will not stay soluble.
  • The reason for using Distilled Water is to give a longer shelf life.  The original Wellness Mama recipe suggests 6 months.
  • I purchased my Magnesium Crystals online because I live in a rural area and do not have access to a health shop, large chemist or any other store that sells them. I purchased mine through Ebay, but if you can locate them in a local store at a reasonable price then that is great. I guess shopping around it the best method. I also recommend buying in bulk if you think you can warrant it.
  • I have found these flakes to be better in the bath than Epsom salts for relieving a pain flare, but also more pricey. Recently I have used the flakes in the bath when I have been in a major flare and they have worked wonders for me in the way of pain relief and calming down the neuro symptoms etc.

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The Cost

Ok for my first attempt, I spent $12 for the Magnesium Crystals + $8 p+h on Ebay (it gets cheaper as you buy larger amounts) = $20.00 and $2.95 for the Distilled Water. I also spent $1.50 for some spray bottles from a cheap shop. All up it cost me $24.95

Each batch used approx. a third of the crystals and water and made 300mg of Oil which I put into 100mg bottles. So the 300mg of oil cost approx. $8.30 and each 100mg bottle cost approx. $2.77. Not bad considering I was looking at around $30 for a 120mg bottle.

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So here it is my recipe for making Magnesium Oil.  Good luck with making your own and I would love to hear about any alterations or discoveries that you make.  Xx

Please remember that I’m not a Doctor, Chemist or any qualification of anything. I’m only sharing what I have found within my research over time and what I have found has worked for me. I’m not responsible for what you try from this blog. It is all information that’s available freely online anyway.

Why, This Disease Could Be Systematic…

Whenever I’m reading something on CRPS and I see the word “systematic” I feel the urge to follow it up with “Hydromatic…Ultramatic…. Why, it could be greased lightnin”. and then I continue with what I’m reading.
And they say its all in our head!

6 Things about Chronic Pain You Didn’t Know You Knew

6 Things about Chronic Pain You Didn’t Know You Knew.

via 6 Things about Chronic Pain You Didn’t Know You Knew.

Well worth a read. Chronic pain changes your life in more ways than many people realise.

This article is a great read that helps you better understand your pain.

Hope your all feeling good today xx

Ketamine, My Wonder Drug!

Ok, Ketamine isn’t the “wonder drug” for all, but it is for me and my CRPS. This is how I went with my recent Ketamine infusion. Ketamine does not work for everyone, but it does work for me and this is my story.

ketamine

I’ve had been a little absent recently because I had my second infusion in December. I had it just in time for Xmas and our current summer. Living by the beach, it would have been such a shame to miss out on days at the beach, a healthy soak in the ocean that I use as a substitute to epsom baths and Hydrotherapy. I was worried for my veggie garden if I was not able to be fitted in for an infusion until after summer. There was no way that I could have one in January, as its holiday season here by the coast and while I would be ready to go, no one would be able to come with me as my “responsible person”. It just had to be before Xmas! I was thrilled to get the letter a month out. It came on a day where I was in a great deal of pain and it was like winning the lottery. I was so grateful for being fitted in. I know my pain Dr did me a huge favour and it was a wonderful Xmas present.

I had my infusion 4 months after my last one and it was just way too long. The last month was pure hell and plunged me into a horrible state of depression. The pain was wearing me down and I was mentally suffering from boredom and fear of what this illness meant for my future. I was in a different state of desperation this time. The last infusion, I needed to put the brakes on the disease from spreading any further and I needed the other neuro symptoms to settle down. This time around it was purely to stop the pain and give me back some sort of life, as I was no longer able to do any physical activities. I was hoping this time to be able to go back to work part time. A year in I am flat broke and the dole just does not pay that well enough to live off of, let alone pay medical costs!

So in mid-December I headed off to Adelaide for a three day infusion at the Royal Adelaide Hospital’s Pain Unit. Mum and I stayed at a friend’s place at Murray Bridge, a forty five min drive from the hospital. It gave Mum time to spend with her bestie in the evenings. The infusion was fantastic and gave me a rest… it feels good too. Lol. I love the team at the pain unit. I’m always the first one in and I immediately claimed my fave bed in the corner of the ward. On my first day I had a little issue before the infusion even started and I found that day the hardest.

I’m shocking with needles. Since my fainting episode when I was admitted to the burns ward, I have had a tendency to fait. It’s mostly over having an IV inserted. My veins tend to disappear when the needle goes in and it has taken up to four goes before it is in. So I was more than nervous when it was time to insert it on the first day. I was trying to focus on getting it done and starting the infusion. I think that being greeted with “oh, it’s you!” says everything. Lol. At least I made my mark! The nurse decided it was best to get the anaesthetist straight in to get the IV done. So in come a lovely Indian Doctor what immediately put me a little more at ease with his kind manner. Yet, once again my veins disappeared as soon as the needle went in. I was still too tense. The nurse and Dr started talking me through ways to calm me down and eventually this was to follow.

Dr: breath in an out slowly, imagine you are at your happy place. Are you there?

Me, awkwardly: yep.

Dr: where are you now?

Me: I’m at the beach.

Dr: what beach?

Me: I’m at long beach, back home in Kingston.

Dr: ok, who are you with?

Me: I’m…..with my horse Ernie….. and the tears start welling!!!!

Tears instantly come. Ernie died a year ago and was my happy place and soul mate. He suddenly got sick and died 8 days later. My CRPS took off after the stress of losing him. I’m still mourning him and would give anything to have him back. The poor Dr was so sweet. He instantly stopped while I tried to calm myself down. I guess the stress of the past month, nerves and my realising my happy place was gone was too much. I was a mess. What I didn’t realise was that because he stopped to let me calm down, the needle was still in my arm and I was busily wiping my eyes and unknowingly smacking the needle around in my arm. The bruising that I caused my self was quite impressive. Lol. Once I calmed down, I retried the breathing exercises and the IV went straight in. I felt like such an idiot! I ended up blubbery throughout the whole infusion. I just wanted my boy and my life back.

Other than that it all went pretty much to plan. I would come in each morning and was allowed to come earlier if I wanted as I was the first one in and we could start once we were all ready. I got past having the IV put in and I was hooked up to the machine. Suddenly I feel quite drunk and my eyes are blurry. Im given a big dose of Ketamine to start me off and then I settle into the five hour infusion. Basically I go off to sleep and listen to my music. I really enjoy the sleep. The only annoyance being my blood pressure being taken every ten minutes and the pulse thingy on my finger. I often have to swap fingers because they get so tender with the monitor on them. Everything has to go onto my right arm. My three other limbs are out of bounds. I’ve tried the blood pressure wrap on my legs but the cramps that I get and the tightening of the wrap do not get along. Once the infusion is over, Im sat up and given a sandwich and a cup of tea. I then sit there, maybe getting up to go to the toilet, an interesting challenge when you’re so drugged up. Then I sit and wait for Mum to come with a coffee from Cibo on Rundle St. My reward! After I’m released I head off into the sunset/afternoon to have a quiet rest and to be ready for the next day…. Supposedly.

Mum was great while I was having my infusions. This was her holiday from the café and she really needed to catch up on some sleep. The staff were happy for her to come in and have a nap in a chair next to my bed and even offered her a bed for a while. Poor mum.  Next time I will get a hotel room for the 3 days and take myself in, in the mornings so she can sleep and wander the city until its time to pick me up. She does enjoy the time away and wandering the city. Until I had my burn injury, she rarely came to the city, had never driven in the city and had no idea of how to get around. I think she has found it liberating to find this freedom and adventure. I think it’s great and love seeing her become so independent. The staff were just wonderful. They made sure I had vegetarian food ordered for after the infusion and were more than accommodating to my needs for my CRPS. It’s wonderful to have such a caring team looking after you.

It was fantastic going to bed the first night. I had almost no pain. It was a strange feeling, but such a relief. I slept really well. Partly from the infusion, partly because I was relieved and exhausted. In a way my fave part of having the infusion is the fact that I get to sleep, rest and in a way be drugged out and escaping the pain. I wouldn’t want it every day. But just for a few days, it’s like a holiday from the pain. I’m sure this is something that other sufferers would understand.

In the after math of the infusion I have done so much better than last time. My last one went like this. The first month after I was very up and down with my pain and slept a lot from what I understand to be an infusion hangover, the second month was pure bliss. My pain averaged a four out of ten and then a little higher at night. The third month it was wearing off and the pain crept back making the fourth month pure hell. This time around I have had my pain instantly reduced. It’s still a little up and down but I’m seeing my condition improve with each week. I had a great Xmas camping at the beach until the New Year. I attempted going back to work, aiming for 2 hrs a day and I got back into my garden. We camp only 20min from home making it easy to come back for work, to look after the animals and for me to tend to my garden. I will say that I did overdo it a little, well a lot, but at least I was able to be involved in the festivities and spend time at the beach. I would say that the CRPS had progressed substantially since my first one and Im still only able to be active in small bursts followed by big rests.

I’m still achy and in pain but I can function and participate in what life I currently have. I know I am lucky because it doesn’t work for everyone. It isn’t a miracle cure and despite my expectations it does not take all of your pain. It’s funny how you forget how you went last time. I kept a diary of how I went and looking back I was still in pain and yet part of me had expected me to be pain free and able to get back to normal. Wishful thinking I think. Lol. I’m looking forwards to continued improvement and my next one. I know that it takes an average of 3 infusions for it to take full effect and I can’t wait to get my third over and done with so I can hopefully function a little better and get on with my new life. Study and a little work would be fantastic.

If anyone would like to ask about how my infusions have helped me, please ask. We are all in it together. xxx