Tuesday, 1 August 2017

Allodynia and Hyperalgesia


Allodynia is a type of pain associated with Fibromyalgia and is considered a rare type of pain. With allodynia, there is a triggered pain response from stimuli that does not normally cause pain. In this case, it causes a great deal of skin pain. The skin burns to the touch and is often described as a sunburn sensation or "sparkler burn". Clothes will hurt against the skin. Even a breeze will feel painful against the heightened and tender skin. There is no exact cause for allodynia, but it is considered to be from central nervous sensitization where there is an increase of excitability in the neurons of the central nervous system. As such, harmless stimulus – like a light touch – activates the nociceptors which are usually activated only in response to intense stimulus causing damage to the tissue and thus causing pain where there should be none.

The pain caused by touch is called tactile allodynia; when caused by movement, it is mechanical allodynia. Thermal allodynia is related to temperature. Other pain conditions can create this response such as neuropathy, post herpetic neuralgia and migraines. In fact, with migraines, allodynia is common in the scalp, although it can occur anywhere.

Allodynia can range from mild to severe and can be all over the body or only in certain areas. It can be continuous or come and go. My own allodynia is one of my main symptoms of Fibromyalgia.  The constant feeling of skin burning.  As I write this I'm aware of my hands, forarms and thighs burning. There's not a lot I can do about it. Sometimes a cooling towel or gel like Aloe or MSM GEL is nice but the effects are limited often offering just a few minutes relief. CBD balm is another thing that does help but rubbing it on is done with gritted teeth as it may as well be sandpaper (I hasten to add it's my skin causing that, the Balm is smooth and soft).

For me, allodynia is a constant companion. It does vary in severity but it's always there.  Some experience it with migraines  however I don't have to have a migraine for it to affect my scalp. Its like someone has yanked your hair leaving a residual bruised sensation. Washing hair is torture as is brushing. You'll have seen I've shaved hair off in an effort to reduce the weight of my hair on my head.
During extreme weather, I also get thermal allodynia that can cause a great deal of all-over sensitivity and makes it difficult to be out on hot days I used to LOVE the sun but now if I'm out I have to be shaded. The opposite is also true, being cold causes physical pain.

Clothing is a common problem with tactile allodynia. There can be a burning or constricting feeling from waistbands, even if they are not tight. Bra straps can create a lot of discomfort. Any clothing closely pressed to the body can seem to be putting ‘pressure’ on the burning sensation, including tags and stitching. Generally, fabric choice can be a real issue as some will seem quite aggressive against the tender skin, but when it is severe, all fabrics will be equally aggravating.
I've ditched the bra, wear clothes inside out and have to wear bigger sizes even maternity clothes to keep clothes away from my skin. I'm one step away from a kaftan lol

I'm currently awaiting a lignocaine (lidocaine) infusion and then the next step will be ketamine!

Here's hoping for relief soon ❤❤❤

https://en.m.wikipedia.org/wiki/Allodynia

https://en.m.wikipedia.org/wiki/Hyperalgesia

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.

https://www.gofundme.com/invisibilityhurts

Much love and gentle hugs to all 💜💜💜💜

Monday, 24 July 2017

Is it me?

Some of you may know I'm a big fan of CBD (the none psychoactive part of Cannabis) this wonderful plant has allowed me to reduce my medications significantly. I'm off my morphine type drug, I was feeling really positive......

(CBD deserves a blog all of its own so I'll leave that for another day ❤)

So what happened? Two particular Health care professional's happened that's what.
What the hell is wrong with these people!?!?
It feels so odd to say that because I was one not too long ago. I can kind of excuse myself as an ICU nurse (I still feel guilty for not acknowledging chronic pain conditions more), but if pain and rehab is your ballywack then at least do your research. 
I knew it wasn't going to go well as soon as the nurse specialist in rheumatology hadn't heard of CBD. She looked at me like I had two heads....hey that's a point!! Is it me? Do I have 2 heads? 
I mean like seriously, No body, and I mean NO BODY would want to live like this. The constant pain, the constant flares, a scalp so sensitive you shave off your hair. Hugs from your loved ones making you grimace with pain.  
I understand how stress makes the pain worse, of course I do. If anyone wants to take away the very real causes of my stress then have at it!! 
To be given no help apart from being told I really should engage with Psychiatric services is quite frankly insulting. 

Like i said I'd gone into this appointment up beat (I'd cut down on so many of my meds since my previous appointment thanks to CBD), making it quite clear that I'm fighting every single day but suggesting I may need more help, another stint in rehab.....and yet I came out a shadow of myself and YES ironically probably in need of psych help.  The people we turn to for help have no idea how much faith we put in them. How much we trust them. How easily they can shoot us down.

This was a couple of weeks back. I've since picked myself up, dusted myself off and gone back to the fight. 

I know now it IS NOT ME, it is NOT all in my head.....unless you are referring to my brain, yes that is in my head (I saw it on MRI)....

So I can wholeheartedly reassure all my fellow fibro warriors (and all other invisible illness sufferers) YOU ARE NOT ALONE and IT IS NOT ALL IN YOUR HEAD. 

I BELIEVE YOU ❤❤❤❤❤

This illness is real and it is Debilitating. It causes more pain than any "normal" person can comprehend. 10 times more intense so I believe. 10 times!! Hyperalgesia it's called if you want to name the beast. This is on top of the migraines, eye problems, allodynia, joint pain, bowel issues, sensory overload, cramps, and so much more......

So I urge you again to share, get the word out. It's the only way we can hope to be listened to. 

Thank you for reading lovely people. 
Sending gentle hugs to all that needs one ❤❤❤❤❤❤❤

If anyone is interested in CBD then please join our Facebook group:

CBD CONSUMER GROUP

https://www.facebook.com/groups/356332264751778/


Thursday, 29 June 2017

Perception

How others look at us, the chronically ill, impacts on our lives tremendously.

I have recently been refused motability and my GP refused to approve my OT's request for a scooter.

We go back to that same old statement
"But you don't look sick"

(And the silent reply "and you don't look .....insert adjective here" )

The thing is. You can't see my pain. No one can. As I've said before I've a terrible habit of playing it down. Wearing my mask.

I want to try and explain my pain to you. This is not intended for you to say "oh poor you" but to enlighten you to the hidden suffering that people with hidden illnesses endure. I warn you this is a long one. Grab a cuppa and get comfy.

So....where to start.

Before I do, I need you to remember this, it is not a case of one symptom at a time for a short period (chronic pain by definition is pain that persists after 3 months) but ALL of these symptoms ALL of the time, going on for more than a year now.

So let's begin....

Some of you may have seen pictures of me sporting half a shaved head (wouldn't been a full GI Jo if I'd had the guts).
This has nothing to do with fashion I assure you. My hair literally hurts. The weight of my hair pulling on my scalp causes pain. God forbid my hair gets pulled (I've a toddler) then it is literally like how I imagine a knife stabbed in the head to be.

The next knife in the head is this weird "headache" (hard to call it an ache because it's stabbing but hey), the nerves / blood vessels around my temple and the side of my head literally can't be touched. The pain is immense. On top of that, is the random, out of the blue ice pick in the brain agony. That one you literally have to cradle your head and DO NOT MOVE until the ice pick let's up.

Added to this is the good old migraine. Centred mainly around my right eye of happily gouge it out with a rusty spoon at times.
As an aside, turns out my eyesight is failing too. Nothing correctable it seems but structural and not improved by glasses, knowing that will likely deteriorate is really scary.

Following on from that is rather boring neck pain. Base of skull pain.
Shoulder pain.
Back pain from top to bottom.
Hip pain
Knee pain
Ankle pain.

These are all up and down like a yo yo, the "worst" but can change in the blink of a site eye.

All this is wrapped up in skin that hurts.
This is really hard to understand for some I think.
Remember that whacking bruise you got from hitting your leg off a table or the like? Apply that tenderness (when you press on bruise) to your ENTIRE BODY......and now burn it.  Sunburn I mean. Bad bloody sunburn ALL OVER.

Clothes hurt me, cuddling my son hurts me. Ahh jeez I could go on and on, I think you get the picture.

Add to this light, noise, smell over sensitivity my poor nervous system is ramped up constantly.

Now don't get me wrong they're not all at max all of the time. They are all there though ALL OF THE TIME.

None of this is visible. You can't see it. A lot of you probably don't believe it.
It's somewhat incomprehensible. All this pain and suffering non stop.

I think maybe you can see why I get frustrated, upset, angry when denied something that would really help.
Make my life more bearable.

I rarely get out. The car hurts me. I can't walk for distances. Pain and fatigue stops me after 20m. I can't push my wheelchair myself as my hands and wrists hurt (oops missed them off my list). Yet I am not entitled to a scooter because I will become complacent and "stop trying".

I'm getting some relief from CBD and I'm very passionate about this, I'm desperate to find something that works for all of my pains. This is another thing not available on prescription of course. Not everyone knows about it though and of course money is an issue.  Doctors would still rather prescribe medications that have so many interactions and side effects they can sometimes make matters worse.

I guess the point of that essay is to implore you to look beyond the mask we wear. Consider the pain and suffering endured daily.  You may be the person affected or have a loved one who is.  I ask you to please share this blog.

Awareness is needed! This awareness is needed in the medical field too, knowledge is sadly lacking when it comes to Fibromyalgia. I know other sufferers of invisible illnesses feel the same. To all of you suffering I give you the very gentlest of hugs.

Thank you so much for getting through that ramble, you taking the time to read it is the first step.

I do have a Go fund me page if you are in a position to help at all.

Much love to all, keep fighting peeps xxx

Sunday, 28 May 2017

An up hill struggle

Blimey O'Reilly it's never ending!!
I've had enough of this ride, can I get off please!!???

I've been in a flare for a while now with the severity going up and down.
Well last night and this morning I'm in the worst flare to date!!

What's a flare you ask.

It's different things to different people. Not all flares are the same. If someone says to you they are flaring, please don't dismiss them. They are telling you that their pain etc has spiked and they are struggling to function.

For me the skin started last night. All over sun burn. Clothes or even BREATH touching skin causes pain. I've now got all my clothes, Inc socks, on inside out. Something I've had to do for a while but now my old faithful top is causing pain too. So that's inside out as well.
On top of that is bone, and muscle pain. My entire body hurts. I can barely move. My ribs hurt to breath. Every joint hurts. It's hell.

What did I do to set this off you may wonder?

I sorted out our kitchen drawers ahead of having to leave our house (another story).  That's all I did though. I even had a chair positioned to help.

Life with Fibromyalgia is life on a knife edge.

You never know what will set you off.
Granted with me my tolerance level is very low, I will invariably pay for any activity.... But cleaning the drawers!!!??? I mean come on!!!???
How the hell are we going to manage moving house with a burden like me and a 3yo!!???
My partner is amazing but he is shattered.

My point dear readers is to ask you to please take the time to listen to your loved ones. If you are the person suffering below you will find a link to an interview I did with the journal. Please feel free to share with your family members. Some of you have reached out to me and said how much it resonated with you so please do share the heck out of it.

We need to raise awareness!!

http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond

Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below. Being sick and being on disability with zero income is no fun. Especially with a young child. We put ourselves after him. Always. As all parents do. Anyway. Much love and thanks to all 💜💜💜💜

https://www.gofundme.com/invisibilityhurts




Sunday, 9 April 2017

The toll it takes

Its kind of hard to keep track. Its only when you look back it hits you.
The hours lost to pain.
The words no longer able to find
The confidence vanished.
The tears shed.
I can't believe it's been so long since my last update. Oh I'd love to be able to tell you that things are on the up.
Errr NOPE, just when you think it can't get any worse.....oh yeah it can.
My health is much the same, on its way down again. My hips will need injecting soon, I don't seem to have a follow up appointment after all that hard work in Harolds Cross Hospice and no follow up...eh??
Just get on the phone you may say. I can't think how to explain how hard it is to talk on the phone. Writing is one thing. This piece was started a month ago. The phone though. There's no hiding the fact that you can't find a word. Have a total, and I mean total mental block, not one word. You can almost see the blank space. The more you realise what you're stumbling over then the anxiety kicks in and the stuttering starts.
This is me remember, the ICU nurse. Never had a problem talking, my friends and colleagues can attest to that! Lol
So, the phone call goes unmade.....
That seems so insignificant now though.
My darling partner is finally divorced from his ex.
I will soon (and my 3yr old son) will be made homeless.  Oh and having to rehome our fur babies that we've had 10 years!! That's heartbreaking enough as it is!!!
No income, no savings, living hand to mouth on disability allowance. Waiting on a carers allowance appeal. Yup, appeal. I'm not disabled enough. Ugh.
So here we are appealing for emergency housing. 
Sounds so dramatic but it's actually true.
When you are really ill, you rely so very much on others. The stress of all of will only serve to make me worse (dread to think how).
Again I stress, I'm not alone, these struggles are not isolated. Please if you know someone with a chronic illness, just see if there's anything you can do for them? Can you make that phone call?
Once again I've waffled on.
Thank you so much for reading this, please share my story if you can.
I recently did an interview for the journal.ie which I would love for you to read, watch and share.
I've not mentioned CBD here but you will see me talk about it in my interview.  I'll discuss it properly at another time.
http://www.thejournal.ie/fibromyalgia-chronic-pain-cbd-oil-3334489-Apr2017/#respond
Finally as much as it still pains me to ask, if anyone can help I'd be so grateful. My go fund me link is below.
https://www.gofundme.com/invisibilityhurts
Much love and gentle hugs to all 

Monday, 3 April 2017

A public letter to Simon Harris Minister for Health AND my local TD


Dear Simon,

I am pleased to say I was recently awarded Disability allowance. 

That's where the good news ends.

My partner was refused Carers allowance!!! 

We have appealed but is there any way you can help us on this? They stated I wasn't disabled enough. Its a sick joke. 

With this and the ongoing issue with medical cannabis. And the press glossing over the fact that 10's of thousands of pain sufferers are going to be left with no viable alternative to opiates. 

I can tell you this without a shadow of a doubt, as I have seen both sides of the coin now, "We" are simply desperate for an alternative. One that is less likely to KILL US. That statement is not an overly dramatic one. It is fact. Opiates kill. Cannabis doesn't. 

I haven't heard from you in a good while. 

I trust you will make time to reply to me this time. 

Regards, 

Jo Allen 

An update

Hi everyone, I wanted to check in with you all and let you know I'm not being rude, I have not received any of the money recently raised yet so I can't show you what you've got me.

I was just concerned that people might be thinking I was ungrateful. Most definitely not!!! I love that people would do these things for me. Honoured in fact.

I'm pottering around, trying not to spend too much time in bed (she says lying in bed shhh 🙈🙊).
I've been flaring now for 5 days, at least, and its exhausting.
My whole body is burnt and bruised with no outward evidence of injury. It makes it so difficult to wear any clothes (no I'm not in the buff), or lie on anything but my softest bedding in my softest PJs.

When I get some of the money its on my list!
Along with a lot of things lol

Anyway, thanks again and much love and gentle hugs to all.

💜💜Jo💜💜