Things NOT To Say To A CRPS Patient: and yet they do!!

Ok, I know we all get people/idiots making stupid comments about our illness despite knowing nothing about CRPS/RSD. I have had quite a few myself. The one that outraged me the most was being told to “just get over it and move on with your life” WTF??? where is the button I get to press to turn this off??? I stewed on that one for a long time. I soon realised it was only me suffering. That person had moved on with her life two seconds after saying it. I will admit that I got quite negative towards this person afterwards and ended up cutting her out of my life completely to try and get past it. I’m not sure why this one got to me the most. It wasnt the worst said to me at all. Maybe that I was hurt that she had no empathy for me when I had empathy for her having a husband dying of cancer. I had been very kind to her as I knew her husband well and was deeply saddened by his illness and death. Maybe she couldnt see past her own problems. She could be a selfish person at times… ok she could be a bit of a b****! Either way she had to go because I needed to get past the negativity.

I was also recently told by a Dr that I am too young to be addicted to pain meds. My reply was that I am also too young to be in this much pain. FFS!!!

Today I came around this list of Things NOT To Say To A CRPS Patient. It was quite interesting. Its from a site called The Black and its RSD Links. A page that I am going to do some further reading on. Here below are a few of the things that are said to us. The majority of this list is things said by Dr’s. Im kind of horrified by this. Enjoy.

1. But you look fine.
2. Try not to dwell on it all the time.
3. It’s not a death sentence.
4. It’s not like it’s cancer.
5. Lose some weight.
6. Get more exercise.
7. It’s all in your head.
8. It’s probably the all the pills you’re taking that are making you sick and tired.
9. I’ve seen worse cases of CRPS/RSD.
10. You forget a lot. Try to pay better attention to things.
11. What doesn’t kill you will make you stronger.
12. Are you sure it’s not gout?
13. I knew someone who had something like that and s/he’s fine now!
14. It can’t possibly hurt as much as you make it seem.
15. Why are you on disability? Isn’t it your arm that’s sore?
16. I had a friend that had that. You need to eat a gluten free diet.
17. You’re going to become an addict.
18. CRPS doesn’t spread.
19. Does something like this run in your family?
20. RSD never spread the way you just told me.
21. An spinal block can’t give you RSD.
22. Why you have surgery in your back when RSD is in your lower limb?
23. Did you get all that for a simple ankle twisting? Gosh, you’re weak!!

To make this post a bit more fun, what would be your come back to the stupidity of some of these remarks??? Lets maybe keep it clean and witty. 🙂

Hope your all pain free. xx

 

Ketamine, Coffee, Food, Family and Student Doctors!

Ah Ketamine. I just love it! Its been two weeks since my trip to Adelaide for my three day infusion. It was a great trip. I went with my second family, Steff, Phil and Amity. It was a great trip even if I did sleep for most of it. We travelled to Adelaide on the Monday afternoon and arrived in time for dinner and had the best Indian food I have ever had from my fave Restaurant Raj on Taj in King William Rd. I have not eaten there in years and it was divine. The next day I had my first day of infusions and I pretty much slept through the whole three days. It went really quickly. Basically my whole trip went much like this… Ketamine, Coffee, Food, Family and Student Doctors!

The weather during this trip was Hot, rainy and humid. It was a shocker and it did raise my pain for the first few days, but by the end of the three days I was feeling good and my pain was at an all time low. It was so nice. Steff even noticed how my presence changed as I came out of the pain. Each morning I was driven to the hospital by Phil who then returned to pick me up that afternoon. The staff in the pain clinic naturally thought that Phil was my Dad and I soon realised that there was no point correcting them. Having fasted each morning and being in need of a good coffee, I introduced Phil to my fave café, Cibo on Rundle St and I got him hooked. Each day we would grab a latte and I would spoil myself with a yummy pastry. If I move to Adelaide I’m scared that I’ll be the size of a house because I love the pastries so much. Yum! After my infusion we would normally relax before going out for dinner and eating fantastic food and I even snuck in a glass of wine when I felt the need. Not sure if that was a good choice but one couldn’t hurt. Lol.

Aside from all the food, two really exciting things happened while I was having my infusions. The first thing being that I got to speak to student doctors about CRPS! On two of the mornings I was asked if I was interested in having a chat with some fifth year student doctors. I was really excited to be able to make around fifteen future doctors aware of CRPS. The average diagnosis of CRPS is made after four years of suffering and most doctors never see or diagnose CPRS so I knew that this was a great opportunity. The students were equally excited to chat about my experience and treatment as well. I decided to be really open with them and the students on the second day really got into my story. It was a smaller group and we were chatting for near an hour and made my infusion run way over. I didn’t mind though. I hope I can have the opportunity to do it again. Hopefully someone will benefit from my sharing my story.

On the last day of my infusion, I was in recovery and chatting with a nurse about the mental strain that CRPS puts of you when she asked if I had seen anyone like a psychologist. I told her about the lack of care I had received from being in a rural area. The next thing I know she is off to ask the clinic psychologist if she could see me while I was in town. The next day she fit me in and it was great. We basically started by chatting about what has happened so far, who I am and how I am coping. Her main concern so far is my lack of sleep and how it is affecting me. I have started on Melaton and will be doing a three month trial to see if it helps. I will now do a phone session every three weeks and meet at the clinic when I have appointments at the hospital. Mostly I’m hoping that I’ll be able to improve my outlook on life and living with CRPS. Already Im looking at what I could be doing to move forwards and not make CRPS my main focus in life. It can’t own me but I have been a little stuck trying to sort it all out on my own. Things are looking up!

MAGNESIUM BATHS: My Fave New DIY Treatment

As you all know I love love love Magnesium and what it can do for our bodies. I have written before about making my own Magnesium oil and am currently experimenting with a few other ways to apply Magnesium to my skin. I personally believe dermally is simply the best way for us chronic pain sufferers to get it into us and hopefully directly settle the pain.

Until recently my main alternative to the oil was to have an Epsom Salt (Magnesium Sulphate) bath. It’s cheap, and effective. In a warm bath it helps sooth a flare but recently I was cut short of some salts when I really needed them. It was one of those flares where you can barely move a muscle without triggering a chain of excruciating spasms that shoot through your body. Walking’s out of the question and it became a full bodied nightmare and this time I had no salts to heal me.

To cut the story short, what I did have available was the Magnesium crystals (magnesium chloride) that I use to make my Magnesium Oil. What the heck, I was desperate to try anything, so in they went.

I hopped into the bath and soaked my poor hurting body for about an hour. The warm water always feels so good when I’m suffering and when I turn the jets on; I get a bonus massage as well. I normally only last an hour to hour and a half tops before I get bored. So when it came time to get out I couldn’t believe that my flare had settles almost entirely. I could walk; I was a functioning human being once again. Well, for a CRPS sufferer anyway. There was still pain but the sort I could handle these days.

Suddenly Epsom Baths seemed to lose their shine. I used to think they were magic and now they are what I have when I’m saving my Magnesium Crystals for a special/crappy occasion.

I’m finding that what I’m calling Magnesium Baths are able to calm my flares and able me to function again the majority of times I try them. This morning I woke up to an average flare. Aching joints, spasms, throbbing and shooting pain, the normal deal, I was just a ball of hurt. I was planning to drive to see a friend 40km away later in the day and this was an issue. I’m trying to get out more these days to keep myself mentally healthy. CRPS is such a soul crushing disease. I got up knowing it wasn’t a good sign. If I wake up with pain it means it will only get worse. An average day gives me up to an hour of low pain before it hits me in a mid range of pain. I decided to take action and have a good soak in some Magnesium and Wham Bam Thank You Mam…… I was human again….. Ok, I was CRPS human again!!!

I really do think that for me the Magnesium Baths are helping me calm my flares and turning them into something bearable. I don’t always choose to have them because we are on rain water here and it’s a big bath to fill. Summer can leave our water supply a little stressed. Some days I have to settle for smothering myself with Magnesium Oil and having a warm shower. (Sarcastic) Yayyyyyyy!!!!!!

I do sometimes laugh at how I call my low pain flares “functional”. The only other way I would describe someone’s issues with the word “functional” is if you describe someone as a “functional alcoholic”. Lol. It’s insane what we call “low pain” and a “good day” with CRPS.

But back to the Magnesium Baths, I do love that they are a drug free way of calming a flare. I find that the further into CRPS that I am getting, the more I feel that finding alternative treatments are important. My baths won’t kill off my kidneys, cause me to become a zombie, an addict, stop me driving or give any other nasty side effects it may on the other hand cause me to be a “functional magnesium user”

My bath normally consists of the following:

Water to above the spa jets and deep enough for me to lie in

1 cup Magnesium crystals (replacing the same in Epsom salts)

Essential Oils (I’m starting to play with new oils so watch this space) Lavender, Spearmint and Patchouli

A pot of green rose tea

Good music

A scented candle

Something to read

If you try Magnesium Baths for yourself, I would love to hear if they help. We are all different, but I do hope this helps other sufferers.

Hope your pain free today. xx

Can I also point out that I’m not a Doctor or any other practitioner. I am simply passing on to other sufferers what helps me cope with CRPS and what works for me may not work for you. It’s up to you to try for yourself and perhaps quiz your GP about it if you have concerns. I’m not responsible for how you use this information. I do hope you and others get something positive from this. It’s all about helping each other out.

PAIN SCALE: Here is a good one.

I found this fantastic Pain Scale the other day and thought that I would share it with you all. I do not know where it originates from but it is too good not to share. I have in the past found it hard to find a good definition of each level of pain. For my own pain diaries that I have been asked to keep by my Doctors, I have merged many together and made do with what I had. I like that this one justifies what is minor, moderate and severe pain.

PainScale

If anyone knows where this chart originates than please let me know. I like to give credit where credit is due. 🙂

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. 🙂

 

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. 

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