SUMMER: Surviving the heat with CRPS

I love summer here in Australia but now that I have CRPS the heat really kicks my ass! Today is a scorcher and I am hiding away indoors with the air-con on. This is my second summer with CRPS. Well it’s actually third, but the first one I was only having minor symptoms, hadn’t had a flare and didn’t know anything was wrong until towards the end of that summer. Last year was my first full summer and it was a hot one. I remember a full week of days above 40deg. My mum actually helped/half carried me into the water at the beach one time as I couldn’t walk or hold myself up. Luckily we can drive and park on the beach here so it wasn’t far to the water. After 20min I was good as gold. Well kind of!
We haven’t hit 40 deg yet this year, but it’s the first day of hot weather we have had and I’m right back there again. I hide away inside all day and hopefully sleep right through it and be up at night when it is cooler and after my body had been soaked in the ocean and cooled. That’s where we will be heading late this afternoon. Straight to the beach.
So I was thinking that maybe I could compile a list of things that we can do to cope with the heat. This is what I have so far.

·         Stay cool: Do whatever it takes. Sit in front of the air conditioner, have a cool bath or shower, Go to the pool or beach to soak your body, put a soaking wet cloth around your neck, make sure any car you’re in had a working air-con. Whatever it takes. Even if it’s having a fan on and a sheet over you to stop the air from upsetting your body.

·         Go to the Beach:If you’re lucky enough to live near to the beach, it is going to be your saviour during a hot summer. I tend to go later in the afternoon when the beach is quieter. The movement of the water gently massages your body while it cools you down to a level where you can cope. The magnesium fix that you get will also help with your pain and other symptoms. Plus It’s fun to go to the beach, move your body around and you get outside and get some Vit D. Always take someone with you tough, so maybe make it a bit social. It’s a great way to spend time with a loved one. It’s also a good place to work on moving any part of your body that isn’t doing so well. It’s like Hydro therapy and really helps if you’re able to cope with being in the water. Even if you just walk along the beach or stand in water an inch deep. Whatever works?

·         Stay Hydrated:This is a must. If your hot your probably sweating and loosing fluids from your body. The extra pain meds you probably need will also be messing with your body and drinking lots of water will help you cleanse your kidneys when they are working harder in the heat. Really the body can’t work without being hydrated. I carry a one litre water bottle around with me and try to fill it a couple of times. Usually in the heat I will have about 2-3 litres. But don’t overdo it. You can do a lot of harm to yourself if you over drink. Some days I feel that I need something else to satisfy my thirst and water isn’t cutting it. I try an electrolyte replacer. Usually I will use a product that is meant to be for when you’re vomiting. Or I will just get a yellow powerade. I always have yellow because I am not allergic to the crap they put into it. There are plenty of recipes for making your own healthy energy drinks. If you’re interested, here is a link to an article with recipes.

·         Move your body:Sitting around staying out of the heat can lead to us CRPS sufferers seizing up. That is not a good thing. Maybe do some physio, Pilates or use some sort of exercise equipment. You don’t have to overdo it, just move. Maybe wait until it cools down and go for a short walk. I like walking on the beach. It’s relaxing and if I walk very shallow water it soothes me feet. Even watering the garden in the early hours or in the evening is moving your body and keeps it happy. I find that if I don’t move, I hurt more.

·         Make sure you have a good supply of all of your meds:You don’t want to be caught out with no meds and have to go out to get them. The heat will punish you.

·         Find something to keep you occupied:I try to sleep a bit, but I can’t sleep all day. Maybe have some DVD’s or TV shows to watch online. Have a craft, art, make a blog, read a book. Whatever keeps you busy.

·         Ice cream: go on, you deserve it!

So that’s all I can think of at the moment. I may add to the list if I think of any others. The main one though it to stay cool. Do you have any suggestions? Let’s make this list grow so we can all benefit.
Stay cool people. xxx

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.

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!)

**********

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.

**********

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.

**********

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.

Magnesium! Oh how I love you.

1386985851_f0443eaa92_z_zps3468f7b8

I have recently discovered the wonderful benefits of Magnesium for my CRPS. I have always loved the effects of my Epsom Salt Baths and my soaks in the ocean, but I have recently raised the bar and improved my magnesium intake to assist me with dealing with my CRPS.

Why?

  • I have started to search for alternative and more natural ways to deal with my pain.
  • Magnesium is often used to assist in pain relief and is widely used within the CRPS and chronic pain community
  • I have started to consider how feeding the brain and nervous system can assist me in coping with CRPS and reducing the symptoms I have, other than my pain. Spasms, cramps, tremors etc.
  • I am so tired of being on medication and the fact that they are losing their effect could end up in me needing even more. I am over it!

So how have I done this?  

With all of my research in mind I have gone with two new options for adding Magnesium into my routine.

  • 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.

How Magnesium has helped me!

Keeping in mind that this is my experience and everyone will have different results

Before the extra Magnesium was added to my routine, I was tired, fatigued and in one of the worst flares to date. I had lost the use of my left hand and could barely move it.  Basically I was a mess and in a lot of pain.

I started with the Magnesium oil just rubbing a little into my left hand and wrist three times a day and a little on my feet. I did my best to stay objective at first, but what I felt was relief, and quite quickly. Within a minute the pain in my hand had halved and I was a very happy girl. The other thing that I noticed was that the next day I felt good within myself. I felt bright, awake and had energy to burn, despite the fact that I had considerable pain. The thing was I felt more able to deal with the pain. I was amazed that it had such a fast effect on me and so far after 2 weeks I still feel great and have been more active and flaring much less. I’m so impressed.

About a week after I added Magnesium tablets to my diet, I wanted to have a more constant supply of magnesium in my body. Now that I am out of my flare and not flaring as much, I don’t use as much mag Oil.  Every morning I take one tablet and I have maintained the same fantastic clear feeling.

Over the last month I have been hanging out for my second Ketamine infusion. There had been tears and days in bed unable to move my toes for fear of it triggering cramps and excruciating pain shooting through my body. Now, just over a week from my infusion, I’m wondering if I really need my infusion. Of course I need it. There are still flares and other symptoms to deal with. It’s just that I feel so good. So Magnesium is now permanently a big part of my treatment.

Sources

http://www.mindbodygreen.com/0-11717/why-women-need-to-get-enough-magnesium.html

http://www.webmd.com/vitamins-and-supplements/lifestyle-guide-11/chronic-pain-relief?page=2

http://www.rsds.org/pdfsall/Collins_Zuuurmond_deLange.pdf

Please keep in mind that I am not a doctor or an nutritionist of any kind. Please consult with your doctor before adding any supplements to your diet. I am writing this article from my experience and my understanding of the topic. Please consider doing your own research on this topic.