Pain Doesn’t Kill!!

Good Morning Folks,

I hope you are all as well as can be expected.

Pain Doesn’t Kill!  That was a reply my pain specialist got when she quizzed a health minister in Scotland a few years back.   My doctor was asking for more money to be ploughed into pain management in Scotland.   The health minister at the time ” it looks better in the newspaper that we are cutting cancer deaths”. Now don’t get me wrong, I am all for savings a person’s life but it’s not a competition.   The current health minister has been a breath of fresh air when it comes to fighting pain and takes a personal interest in my own situation.

It’s a really good question Does Chronic Pain Kill?  I sometimes wish it was life threatening, now I don’t say that to shock or for pity but ask most people in pain like myself and there are many out there that would answer you like I.  It’s my thinking ( stop laughing) that maybe not the pain that’s the killer but the medication and chemicals that we have to put in our system everyday.  To give you an example my cousin has the same condition as myself – something that in the last few months I have only learned – he has it in his shoulder and arm,  a few years back he was taking too much Gabapentin which was prescribed by his local Doctor and he nearly died.   His kidneys stopped working and it was really close call that he wouldn’t survive,  luckily he did and he’s still with us today.   That is one of the many ways chronic pain sufferers could die another is suicide.   Suicide is high amongst pain sufferers as it’s seen as the only way out of the horrible condition.

I have lived with chronic pain for just about 10years.   In that time I have taken enough medication to drug a small nation.  I have suffered Complex Regional Pain Syndrome for 3 years and the medication I am on and could be on is horrendous I am like a bottle of pills… With my cousins encounter I am always very wary of how much tablets or patches I take.

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So in my eyes Chronic pain of any name does or can kill and more is needed to be done into the research of it rather than just believing only medication is the solution.

Thanks for reading please share it on Twitter or Facebook… All feedback is welcome.

Doc Knows Best

Good morning folks

I haven’t written on this for a wee while , some of you will be glad of this!  The reason I haven’t been writing  on here or on my Facebook support page I felt as though I was repeating what was happening over and over again.  But those of us with CRPS can understand that.   Well, I hope.

So to my friends on my support page I am truly sorry and I will make more or an effort .

Pain isn’t complicated most people will suffer some sort of pain everyday of life.  Chronic pain is only complicated because for a lot of us there is no cure .

My pain doctor is amazing, being Irish she doesn’t beat about the bush and tells me straight which I think although generalising of people, a great character trait.  Jen and I prefer this kind of person.  My condition has progressed –  when I told her of my thoughts of using my crutches or frame in the house then going to a wheelchair when out and about, she said the only people who would think anything of that know nothing about your situation and are low life’s.. fair enough.  I also told her of my fear of continuously filling my body full of pills for what I think is very low pain relief she has solutions all the time.

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Since my last blog lot of things are happening.  I was sent to a local hospital to see a specialist for my tarsal coalition, I was x-rayed and told they could see further problems that I would need a CT SCAN for so I’ve had the CT scan and I’m awaiting a follow up appointment from ANOTHER SPECIALIST as what they seem in the x ray was too complicated for him so need to see what happens from there. It will be a massive decision if they say I need another operation.  My pain is roughly been medium to high and I’ve started having spasms.

 

When you have suffered pain everyday of your life for 10 years or more like myself it’s going to drag you down,  I am not afraid to say I am depressed and I don’t say that for people to take pity I say that because I am not afraid to hide anything.  My pain specialist is top of her profession and she tells me how to do things and I tell her what I can do, what won’t work for me and we work together as a team my wife included…  The doc knows best.

I will try write a bit more often, again I make no apologises for my English as I never listened in school.   A lot of things on the horizon for myself and family and 2014 is looking not too bad.  Pain will alway effect my life until a cure is found and until then I will moan about it.

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Cheers for reading you have been a wonderful audience.

@maccasixty7

 

Cold Weather and a Review of Hotbott!

Hi Folks

It’s been a long time since I wrote about my condition,  I was getting sick of it to be honest, writing about it, talking about it, suffering from it.  I just withdrew from doing anything to do with my pain.   So I’m back with just a wee blog as I think you missed me eh?  Haahaa!!

Right:- cold weather, now I know I’ve written about this before but Complex Regional Pain Syndrome has a vicious cycle that always repeats itself and to be fair it’s always cold in Scotland.   The past few weeks the temperature has dropped big time down to – 5 just the other evening.   Now this cold weather effects me big majorly as not only do I suffer from CRPS I also suffer from Neuropathic Nerve Pain and Tarsal Coalition.   In each foot my ankles are fused by two big pins and when it’s cold I can feel it right to my bones… And titanium!

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So as the cold weather sets in most people can wrap up warm and be cosy but I can’t because wearing socks and trousers makes it really sore and uncomfortable.   I only wear these when I have too,  I have a great pair of pyjamas (Where’s Wally)  these are super soft but do still effect me.   Socks, well when I do have to wear them I have to wear super soft cotton socks but I can’t wear these for hours or lounge about wearing these items.  The house has to have the heating on constantly to keep me warm but not too warm!!

On Saturday I went out into Glasgow and it was really cold but I had to go to get the wife a birthday present.  I wrapped up warm, wore my super soft socks and soft trousers and I also had a great thing called HOTBOTT*.   Now going out in my wheelchair in cold weather is not a very good thing to do but as I said I had to,  but on Saturday I was kept warm with my HOTBOTT*.

I’ve used heat pads etc before but I felt Hotbott stayed warmer for much longer and is reusable again and again. And not just for people in wheelchair or scooters anyone who goes to football rugby etc can use then on your cold plastic seat.

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The Hotbott* kept me warm and my hands warm for the whole time I spent in the cold and was one of the best things I have tried to keep me warm when out.  I sat it under the tops of my legs and it was just great to have,  even my sister, nephew and nieces had a wee shot to  keep their hands warm.  Even before my trip out shopping I used it in the house to help some back pain and again it worked great.  I would recommend one of these to users of wheelchairs/mobility scooters etc and I will post a link to their website below so be sure to check them out.

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But folks wrap up when out or keep pain low and stay comfortable CRPS effects us all differently and the cold effects me but finding ways to stay warm has been massively helped with this great wee thing!

Thanks for taking time to read please also feedback is good to have or comments below, how does the cold weather effect you?

HOTBOTT* http://www.hotbott.com/index.php/en/front-page/heated-products/fans-winter-pack/fans-winter-pack-black-detail

 

Invisible

Hi Folks

Hope everyone is doing as well as can be expected and that pain is low.

We are in awareness month so hopefully we are all helping to get this horrible condition more recognised and are giving people information on this relatively unknown condition.

Complex Regional Pain Syndrome is invisible but very deadly,  pain comes in all forms and even now I get people looking at me trying to figure out my disability.  A lot of people in the medical profession ask me for information on my condition,  it’s invisible and they ask what parts sore? Where does it start and finish? I’m usually like look at it you can see it from here to here etc.  How can they not see it?  Because it’s invisible to them who know nothing about it.

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It may be invisible but it’s here and as of now it’s an incurable condition,  both my lower legs and feet are the places where I have CRPS,  legs on fire, legs like ice,  no socks no trousers no shoes.  Bed at night no covers on them sore with the sheets and I have to hang my feet out the bed.  If I go out I’m in a wheelchair I wear cotton jogging bottoms(cheek to call them jogging bottoms lol) cotton socks and trainers 2 sizes too big and very loose.  All this because we have no cure and there doesn’t seem to be one anytime soon,  us CRPS  sufferers are keeping large drug companies in business and that is no joke each day I take a LOT of medication that much my daily tablets go in two separate daily boxes!!

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I get brilliant support from friends and family, you reading this ,people I’ve never met on Facebook and Twitter.  My words may paint a picture in your mind but it’s all invisible to everyone apart from us sufferers.

I can only try and make this condition visible to you by giving information on how it effects me daily and how it’s working to make life terrible at times.

Thanks for reading.

Ps. I started this blog on Friday it’s now 0743 on Sunday I’m listening to Foy Vance…

Awareness Month

Hi Folks

Hope everyone has as low pain as possible and that you can enjoy Halloween.

November is awareness month for Complex Regional Pain Syndrome with the 5th being the major day.  At  day to raise awareness and recognise the struggle we all have living with this horrible condition.    Now all sufferers are different but we all feel the same pain.

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I make no apologies for what I will be doing to raise awareness of my condition throughout my social networks such as Facebook, Twitter and here with my blog.   I will be inviting people to write a peice for my blog so my readers can see it from another sufferers point of view.

I urge friends and family to help me with this and I would ask you all to either share a picture on Facebook or Twitter to help me reach as many people as possible and on the 4th I will post a picture on both my sites so that you can share them with a small message.   Of course you don’t have to do this but I don’t ask for much so please right click copy then paste 🙂 .

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November is Complex Regional Pain Syndrome Awareness Month!

Cheers for reading this small blog,  if you are a sufferer or live with someone who is suffering this condition and would like to write a piece from your point of view then get in touch.

 

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Declining Fast

Hey Folks

Hope everyone is a low pain as possible.

Maybe I’m just thinking too hard but things deteriorate pretty fast with Complex Regional Pain Syndrome…. I feel anyway. Here I am having to use a wheelchair which is pretty spooky as I remember after one surgery a nurse was talking to me and she said “Jamie, I don’t mean to make you scared but I think you will be in a wheelchair by the time you are 35” my response was “no chance I will be fine” . Well that escalated quickly!.

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My fear of ending up in a wheelchair is over I’ve accepted that to have a way of getting out, I need a wheelchair. That’s a huge obstacle that I have cleared, but to be sure something else will pop up soon.

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It’s not just the wheelchair but the amount of medication I have to take and how it effects just a day in life for myself my wife.

Thanks for reading, please share and feedback is always great too.
Cheers

Snap Crackle…. POP!

Hey folks, I hope pain levels are low.

Just now I feel as if I’m stuck in a rut and I can’t get out of it.   I’m spending more time in bed rather than getting out and about.   To be frank with you all I feel as though I have no energy at all,  I know some of my medication makes me feel this way but it’s relentless.   The medication (I will come back to the medication soon) I am on would probably make most people like this but I want to be doing things like spending time with my wife Jen on her days off from work.  The last few times she has been on days off from work I’ve hardly seen her as I’ve been in bed sleeping,  there is now 3 “people”  in our relationship us two and CRPS.

Now I know I always just talk about my CRPS but my Neuropathic Nerve Pain and my Tarsal Coalition is also big factor on what I have to deal with.  My Tarsal Coalition is still causing me lots of bone pain as I reckon the 2nd lots of operations haven’t helped any, well certainly on my right foot any way.   I still get the cracking and popping sound from the ankle and it’s pretty horrible when it does do that and sore!!  I think because Complex Regional Pain Syndrome plays a massive part of mine and my wee families life that I forget to talk about the other things that I have wrong with me.  So over the next few blogs I will be explaining to you lovely readers what else is wrong with me.

Medication I hate I hate taking it I hate what it does to me and I well just hate it.   From the gigantic sizes of some of the tablets to the chemical smell of the sweat my fentanyl patch causes it’s horrible.   I suffer from about 75% of the side effects of every bit of medication that I take or put on(I wear a 50mg fentanyl patch).  Having to carry around if you are out and about my medication for that day, people looking at me as I swallow a handful of tables in a busy restaurant… They must think I’m about to take an overdose.   But in all seriousness the medication side effects and what it’s doing to our internal organs is just as big at the CRPS it’s self or am I wrong?   I know for my American readers medication is expensive and I think to myself that I’m lucky I live in a country where prescriptions are free as is all our health care,  even in England people have to pay for them unless they have government benefits etc.

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A question to my fellow CRPS  sufferers… Do you get what feels like a build up of pressure around the effected area?  Be good to get some feed back on this.

Cheers for reading

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Jamie Maccasixty7