Insomnia: We are NOT friends!

Simply put, Insomnia sucks!

That statement alone could be all I write here and this post would be complete. But I feel like talking about it a bit so here goes.

For me I either have Insomnia or a I sleep non stop. I’ve had a few stints where I slept normally and it was lovely. Right now its 5am and I have been awake since 3am so really the 3 hours of sleep I’ve had is a good night for me. My longest period of no sleep was 6 days. I was a mess at the end of it. After 3 days it starts to mess with your head a bit and by 6 you feel insanity creep in and your a walking zombie.

I have read all the literature on how to get to sleep and create a sleep positive environment and for me it doesn’t work. Simply by laying there trying to sleep, I will not fall asleep. I get frustrated too easily and it just keeps me awake longer and longer. It just doesn’t work for me, because damn Insomnia keeps getting in the way. I have found that if I am going to sleep then my best chance is to distract my self and the insomnia until I get drowsy and drop off to sleep. To do this I might read a book or on my phone. Watching a movie or Netflix is great as well. These are my go to distractions because I can just drop off when I need to without my brain/insomnia realising what’s happening because its too busy relaxing to a few episodes of Brooklyn Nine-Nine. (One of the best show’s ever!) I have to say that even writing this is relaxing me enough to make me drowsy and I mean that in a good way. I may get a little nap in before getting up. But I better stop talking about it in case good ole insomnia realises what’s going on.

I do worry about what this lack of sleep is doing to me long term. I always see articles about what lack of sleep can do to your health and I worry it gets in the road of the long life I had planned. Even now I am noticing the effect it has son the way I look. I have permanent darkness under my eyes and I am finding that I need heavier makeup to hide it when I don’t want to look haggard. I am even finding a few grey hairs creeping in and I put it down to being worn out. So it this is happening on the outside then I worry about the inside. Perhaps this is something I need to work on improving.

Anyway, Mini rant over. In short I wish that insomnia would take its self off somewhere else and I might try for a little more sleep.

Sleep well people. 🙂 Thanks for reading.

 

Merry Christmas and a PAIN FREE New Year

merry%20christmas

Merry Christmas to all of you amazing CRPS sufferers and supporters. I hope that you have a pain free day and are able to enjoy your day with family and loved ones.

I know that the lead up to the big day can be quite stressful for us and that stress often leads to more pain.  So please consider taking it easy and pacing yourself so that you can enjoy yourself.

I’m kind of expecting to be in pain after not taking my own advice. OOPS!!!! I did also try to rip my little toe off with a door. It hurt like hell and was the better of my two CRPS feet. But, I will make the most of the day anyway and spend my day sitting with family and enjoy spending time with them, watching the kids open their presents eating more than I should and drinking my elder flower cordial and sparkling mineral water.

Have a wonderful Christmas. xxx

P.S. This is my fave Xmas song.

Wham: Last Christmas

 

FULL MOONS and PAIN

imagesCAHJ52Q6

Something that I noticed early on in my life with CRPS and Chronic pain was that my pain and other sufferer’s pain would always rise during a full moon. I’ve always found that a Full Moon effected my moods and sleep so why not pain? After all how do you also explain our pain being greater at night than during the day? Isn’t it equally plausible that the moon cycle could effect us in a similar way?  I did a little research and found that I might have been on to something.  I read how people with arthritis often experienced more pain around a full moon and that epileptic’s had more seizures.

I am in an Aussie and Kiwi Facebook group that chats on a daily basis and it was due to us all being sick with pain flares and my noticing it was always a Full Moon that all of us were online complaining of a shocking flare. So for the next few months I didn’t allow myself to know when the next full moon was unless we were all syncing our flares again. After all its only natural for women to sync up. Lol. Sure enough there was a pattern and over time even the non-believers in the group now whinge about Full moons. Especially one person in particular, who bullied me for my theory and is now the first to announce the arrival of a full moon as if it was him all along who brought it to the group. Oh well!

TODAY 14th MAY 2014 IS A FULL MOON HERE IN AUSTRALIA

Basically it’s all to do with Ions in the air that are either positively or negatively charged. During a Full Moon the air is positively charged and this causes a hormonal reaction in our bodies.

“Ions are floating in the air around us all of the time and have either negative or positive charges. Changes in their concentrations or in the ratio of positively to negatively charged molecules can have remarkable effects on plants and animals. It is known in science that ion depletion is the source of a wide range of human health problems, both mental and physical.

These air ions are important to you because if they have a high proportion of negative ions in the clusters you will feel lively, uplifted and enthusiastic. Too many positive ions in the clusters will have you feeling depressed, lethargic and full of aches, pains and complaints.”

Read the full article at www.quantumenergywerks.com

So what do you think?

I hope the Full Moon is kind to you. xx

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. 🙂

MEOW: My cat is the best medicine

12771_692700244126683_2049479084_n

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. 🙂

 

When Creina, Jim and Jezebel came to stay!

As much as CRPS/RSD is simply a big load of BS, the thing that I am so grateful for I the friends that I have made all because I have this horrible nerve disease. It’s easy to get bogged down in the bad stuff, but there is no denying that because of Facebook, I have met some awesome people that have been so supportive. For me the day I joined my first FB group was the day it all got so much better.

One of those people is my good friend Creina, from Adelaide. She was one of the first people with CRPS that I met and we have become great friends. She is at the beginning of a huge trip around Eastern Australia with her very supportive husband Jim and sweet little westie terrier, Jezebel.

One their way through to Victoria, Creina, Jim and Jez stopped off at our place in the South East for a few days to enjoy the cooler weather, go to the beach and relax. Well that was the plan anyway! We managed a walk on the beach the afternoon they arrived and then it rained until they left. So much for summer! It was so cold that winter clothes came out and there was certainly no swimming. We were really looking forwards to soaking in the water and taking in all of the magnesium that we could. There is always next time.

What the weather did offer was the opportunity to have a look around the town and take it easy. A quick breakfast and then a look through the shops. This included shopping in the chemist for pain killers and other options. Lol, that’s something only a person with chronic pain can relate to.  We walked the two dogs around the town in between stops. Gemma and Jezebel became fast friends, it was so sad for them when it was time to say good bye.

The thing that I loved about having Creina here, other than having her here…  was that we were both in the same condition and were able to do things without trying to keep up. It was fantastic. We just plodded along at our own pace. I didn’t have to drag myself around in pain because she understood when I needed to stop. I have found that even though others make allowances, it still ends up as more of a compromise and I crash in no time. I am learning to say no though.

Sadly in no time, it was time for them to head off on their trip. They are traveling in a Winnebago and towing a beautiful yacht that they will sail whenever they can. It’s really inspiring to see someone with CRPS achieve their goals and overcome such debilitating hurdles.

Have fun guys. xxx

All photos by C Krause

1, Creina and I

2, Jezebel and Gemma at the beach

3, The Big Lobster (aka Larry), Kingston SE, SA

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

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.

r974807_10607495

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.