Lets Netflix and…

I recently asked a CRPS Facebook group what they needed to get through a bad day with a flare. It really surprised me that around 95% of responders mentioned Netflix and other streaming services as one of the best tools for getting through the day.

The reason for that is purely for the distraction it offers us. Its a tool for keeping our mind off of that nagging pain. We know it hurts but our focus is shifted. We can put on something easy to watch and zone out for a few hours. My choice of easy viewing today was Kims Convince. A great comedy that even made me laugh despite my mood and the extra pain meds.

I know that people with chronic pain have survived and coped long before the internet and streaming services. But I also know that many have not. So its a positive move for our lot. Its better than daytime tv and books we cant focus on, or hold.

I have only had Netflix for the past 9 months. I resisted it before and I am so glad to have it today. Although I dont like using it all the time. Its still important to get some sort of excersise. But some days that isnt going to happen and on those days its best to stay in bed and Netflix and… Chill? Or just try to distract yourself from the pain.

I hope your having a pain free day. Thanks for reading. Xx

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Pain Relief with out the Pain Killers

In the time that I have been suffering with chronic pain I have always looked for ways to treat my pain in a more natural way. Things like warm wheat packs and Magnesium are in my go to treatments when I’m sore and uncomfortable. I never substitute natural over modern medicine, but I do believe in using natural alongside modern medication.

This is something that I plan to talk a lot about and I have just come across an article called 7 Simple Steps To Relieve Pain (Without Taking Drugs) by Mind Body Green that list’s a few good ways that we can try in reducing the impact of our pain. For example,

“4. Use nutrients and herbs on a daily basis to reduce pain and inflammation. including bromelain, fish oil, quercitin, curcumin, boswellia, licorice (use “DGL” if you have high blood pressure), devil’s claw, ginger, and Sam-E. There are many products on the market that include a combination of these ingredients. Ask in the supplement section of your local major natural foods store for help.”

I for one am a big fan of Curcumin and plan to share more about this chemical found in turmeric that is great for easing pain. It’s also a good excuse for eating Indian food. I’ll find any excuse really. LOL.

This article is well worth the read, I’m not a doctor, so of course it is best you chat with your Dr about anything you try. Even if you can take just one thing from this article then it’s worth the read.

Hope your all having a pain free day. xx

Ketamine: Only One Week To Go!

Im sorry for being such a bad blogger, but having CRPS in my left hand and symptoms in the right I feel that I have a pretty good excuse for not wanting to be typing too much. I do think about it and sometimes I even start typing but the pain is too much and I have to stop.

The one thing I hate about the infusion cycle is when is stops working and the pain comes back. Lucky for me Ive only been struggling for the past week or two. Last time it was more like 6 weeks before the next round and it was hell. I only have a week until my next infusion and I cant wait.  The thing about the Ketamine wearing off is that it shocks me at how much the disease progresses underneath the numbing effect of the infusions and then BAM it hits you hard. But Im still lucky because I get lowered pain in between infusions and each one is improving for me. I love my infusions and once the needle is in my vein Im happy. I really hate having the IV put in. Im fine with blood tests though. Go figure!

This time around Im hoping that the shocking fatigue will leave me and Ill be able to do more. It takes me days to get over anything eventful and Im finding it hard to do much at all at the moment. Even sitting up to get out of bed is hard for me at the moment.

I really cant wait for next week. Im going to Adelaide with my “adopted” parents, Steff and Phil. Plus my little Sis, Amity is staying with us for a few nights. I will have my infusions from Tuesday through to Thursday and they will be my “responsible person”. Then Thursday night we will head out to Gawler to stay with Amity, before heading home on Friday. Im also hoping that Ill get to see my darling bestie Casey while im in town. I really do have to make sure I take it easy though and rest up in the afternoons while Im having the infusions. They are my priority after all. lol.

I just cant wait to have the pain settle and I get to lay back and have a sleep. 🙂

I hope your all doing as well. Ill get back to posting after my infusions. xx

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. 🙂

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