Today is BAD. It's been 3 years, 9 months and 2 days since the incident that began it all (which nobody can explain) and I can't remember a flare up that's lasted this long before. I've taken the maximum number of of painkillers I can and no relief. So now it's distraction tactics. I wrote this in a bid to explain my life and why sometimes I need a little understanding. A few friends related (fellow sufferers) and maybe it'll help someone reading it as soon many of your posts have helped me.
Chronic Pain - A beginner's guide for the non-afflicted:
1. "Chronic" - this means long term. So long term I can't remember what pain-free is and on a rare occasion it happens I think I've died.
2. "Pain" - it hurts. All the pissing time. And no, that time you had achy legs after a run for a couple of days isn't comparable.
3. "Flare up" - an unexpected and usually at the single most inconvenient time of all symptoms happening at once where no known drug will help.
4. Symptoms - you name it I can tell you it's happened. There are days (like today) when the only thing that isn't stiff, sore, achy, numb or burning is my earlobes. So you take the drugs which bring side effects which are just as vile but in a whole new way and screw up all cognitive function. So no, I don't know what day it is or my kids' names sometimes.
5. GP Appointment - a 7 minute slot to discuss treatment with a professional who is overworked and really has no clue how to help so just signs a scrap of paper for more drugs. You will likely need to make this appointment 3 weeks in advance and wait 45-90 minutes to be seen and catch something in the waiting room which will lead to a flare up.
6. Fatigue - different to tiredness. This is sheer physical and mental exhaustion even if you've just woken from 10 hours uninterrupted sleep which is another rare event.
7. Trigger - the situation that causes a flare up. Could be a smell, trying to lift furniture/a cup of coffee/your own head, the weather, lack of sleep, too few drugs, too many drugs, the wrong combination of drugs or simply that it's Wednesday. Triggers are nasty little bastards and can sneak up on you. What is fine one day won't be the next.
8. Advice - a conversation taking 20 minutes of your life you're never getting back. Usually happens standing up which will probably become a trigger. So yes, I usually fake a phone call 5 minutes in and run away.
9. Patience - what medical professionals suggest you acquire because apparently it takes time for treatments to work. No shit Sherlock! But isn't 3 years 9 months and 2 days enough patience??? And no, focusing on the things I CAN do doesn't help. 4 years ago I could play in the park with my kids and now I can't. I miss that, let me enjoy my memories and have my 20 minute pity-party so I can move on.
10. Mood swings - see above. Try living with this shit 24/7 for years on end wouldn't you be a miserable bastard? You should probably be grateful for the good times and that the bad times physically prevent sufferers from disembowelling you with a teaspoon and strangling you with your own intestines.
So there you have it. MY life and sometimes it SUCKS. Yet still I manage to smile, dismiss a flare up as "a bad day", get on with doing more than I'm capable of and find my own coping strategies. This isn't an epic whine, this is an attempt to explain what an invisible illness feels like on the front line. Please give sufferers a break. We didn't choose this and we really are doing the best we can xxx
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Ultimate_Elf
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I have no idea why it has tagged hernia! Probably one of the few conditions I've not encountered! I also have no idea how to add or remove tags... blame the pain
Fantastic piece of writing! Everything you said is spot on and so well described. Your post should perhaps be pinned so that we can find it easily, for chucking at the non-afflicted when we're having a "bad day" All the best, Wendy x
Found it described my bad days. Hope today is better for you!
Only the afflicted can really understand. Classic of what we all go through though. Particularly the 7 mins at the docs and 40 or more mins waiting past your appt time!
Wow! Thank you for your kind words. The distraction worked a bit - along with refusing to do the huge pile of ironing which is how I normally spend my Sundays
I'm really lucky I have people around me that try to understand and 4 amazing kids that really try to support me even when they don't quite get it.
It was really cathartic to write and as I've been helped so much by lurking and reading other posts I thought it might help another lurker
Everyone gets his portion of suffering in this life. I don't have pain like yours, but I have BIG problems with my sons. And you have 4 amazing kids! This is a blessing.
My advice - accept your pain, look directly in its eyes and then try to forget about it, concentrate on doing smth for the others or what you really think important.
you have taken the words out my mouth and really explained to the "T" very true and right on spot. Somehow my sleep was interrupted with one of those flair. Pain is unbearable,time to zombiefy myself with medication
I am going to print this out and give to family members. The most perfect description of what it is like. I waited 3 weeks to see my GP and when i asked for pain relief. The reply was " continue with over the counter pain killers. If you come in crying, I'll see what I can do" Strangling him with his intestines appeals😘 I
😂 I actually did cry out at my doctors today and this may make you laugh, his new suggestion to end problem was: why don't you start a relationship? Ehh... 😂🤣🤣think I've heard it all now
Bless you xx. I have been in chronic pain for over 5years and every year is harder than the last. I understand exactly how you feel, always putting your mask on so your kids don't see the pain in your eyes. I try not to talk about it as I know I don't want everyone thinking what a whingey bitch. It's a continuous fight to get any doctor to do anything. I feel like giving up! I know if it wasn't for my son and granddaughter I wouldn't be here! But I just keep taking the pills and feeling off my head what a life lol xx
I am just starting on this new part of my life with chronic neck pain, 3 months in and have found out a lot about the medical profession, myself, family and friends. The NHS seems good if you have a life threatening illness, but fairly hopeless for my type of condition. It is devastating to think I will be like this for the rest of my life, feel my future has been snatched away at the moment, finding it hard to come to terms with. My family and friends have been brilliant, I hope they stick with me as not always as happy as I would like to be and my world has got smaller, less to talk about now I'm stuck at home much more than I want to be, can't drive now, work. As you mentioned Ultimate_Elf also very up and down, depending on pain levels. I had no idea about this sort of pain and no one that hasn't experienced it can possible know what it's like even the health professionals, different to anything else. Anyone pain free should make the most of life as could happen to anyone anytime. Luckily I did before it started
Not fully confirmed yet, but seems only a minor amount of damage to facet joint, C5/C6 but pain got worse and worse from the onset to a frightening degree. On NHS waiting list for facet joint injection (approx 3 months wait), just started pregabalin which had weird effects at first, but now helping and seem to be tolerating well, on lots of other things including oramorph which I only have when it's getting to panic levels. It is all a learning curve at the moment.
Sounds similar to me. They seem to not care. Butrans patches at 35mcg and physio is all they are giving me at the moment. Pain is unbearable at times still. Currently on my 16th week off work on the sick. Worried I won't be able to return to the job I love. Do you manage to work? X
Hello Victoriapain , sorry to hear we have joined the club no one wants to- the chronic pain club! I was a part time garden designer and gardener but have had to give it all up unfortunately. Also a keen sailor and finding the prospect of possibly not being able to do that again difficult but I will learn to adapt, maybe find a new way! Trying to get a referral to a pain clinic as get very down when pain is bad need advice on medication and some sort of counselling, believe that is something they offer. Maybe see if you could get a referral too if in the UK. Hope you get your medication sorted too, best wishes.
My own gp has been very good with pain meds. Tried alot of the previous year. Now on butrans, amitriptyline, mitrazapine aswell as paracetamol and ibrufen. It's the pain during the night I can't get away from. A good night sleep is a rarity. Thank-you x
Glad to hear you have a sympathetic GP, mine was rubbish to start with but luckily found another which has taken the problem seriously. Sorry to hear you can't sleep. I know I'm lucky that lying down my pain goes away, trouble is you can't lie down all day and live a normal life! The pregabalin is helping to reduce severity of most scary pain episodes, built up to full dose now, feel a bit weird but getting used to them and no very bad side effects. I'm on Neproxen and if I do too much small dose of Oramorph or co codamol, try to avoid them as muck up digestive system! All a learning curve. It is definitely life changing and only starting the adjustment period really, can see it's going to take a while. Nice to hear from other in the same boat! x
You are so right because you do your hair and make up they think nothing's wrong with you I can remember a friend once sayng leave your hair and go as you get up you'll come better off but that's not me! She got all the benefits going and walk in shower I just get my state pension makes you think!!
That's occurred to me too, always make an effort which isn't easy to make myself look presentable for going anywhere, seeing Dr's etc but thinking now maybe that's not such a good idea when seeing the health professionals?
Can you provide some details of the issue? Was the pain caused by a spinal issue or a surgery to try to correct an issue? Where does it hurt and what type of pain is it? I am also suffering from chronic pain that actually became worse after my back surgery. Although getting better, it's been 18 months after surgery and I still have pain which requires me take pain medication to treat. In my case the pain meds do help and may be on them for a long time.
My condition is a mystery. I broke my leg in may 2013. Walking across a flat surface with no shoes, left leg gave way and was broken in 2 places. 10 screws and a plate went in, a year later they were taken out due to pain and no relief yet.
Pain now "travels". It's everywhere. Nobody can explain or fix it, many have tried. Latest doctor is revisiting Fibromyalgia. After nearly 4 years I'm almost resigned to this being my life but not quite ready to give up all hope of a cure so I manage as best I can and wait for the tomorrow when an answer will come.
I'm so glad I found a place where people truly understand. It is beyond horrid that this is happening but I feel much less isolated now xxx
So sorry to hear what has happened to you, was shocked at first when I joined this forum and realised what everyone was going through, makes depressing reading at times for someone just coming to terms with chronic pain, but in other ways good to know at least the people on here understand., as you say -less isolated. Wishing you and everyone else less pain. x
Thank you for your post ...Even if years where falling by number 6 ... I completely understand.. I fell so insular and isolated .. I have no wish to share my pain, and sometimes find it very hard to hide at times, but somehow reading your post and others who are suffering makes me feel mentally better... Am I horrible ????
I had no intention to upset you so I'm sorry. I was gathering a myriad of thoughts and frustrations when I wrote it as a release and distraction. Quite literally 10 minutes to change my focus and a friend suggested I share it. It was never intended as a "how to" guide, just a tongue-in-cheek snapshot of my feelings in the moment.
And if you're horrible then I am too! We're on a really crappy path right now but I'm "glad" I'm not treading it alone. My pain isn't always this bad but it's not a competition. Bad pain for the individual is qualification enough to join this club.
I hope all of your tomorrows provide improvement xxx
Good for you! It's a sad state that sometimes we have to have a bit of a meltdown to get the message across but if it works do it! I hope you're continuing to feel a little better at least emotionally if not physically xxx
Thanks x I am working on it .. and I came away from the docs with another pill to take .... Apparently it's going to stop me being anxious. And make me happy.... Got to be worthwhile try.. the down side is that I may put on more weight. Im already 2 stone over what I should be... I am glad I won't be carrying the coffin when I go to my last church visit 😁
Breeze Burns
On March 9, 2016, I wrote:
How to…save…a…..l i f e
winding
twisting
dangerous switchbacks
my nervous system misfires
muscles on fire
spine held together barely…..wracked with instability
Nice list. Saves on having to think on the hoof. Good for giving to someone.
Now for the hard talk. I do not believe you are doing the best you can. There are things you can do to try and improve things. The list was a lot of work and shows great thinking ability. This means that you have the ability to develop better pain strategies with a bit of help.
submit reply if you want to continue with things to investigate that can help improve the more less pain days.
Interested to hear from your experiences Johnsmith I'm always open to new ideas - hence joining the forum. May I ask what condition(s) you've had success in mitigating?
I've had some terrible and some great support from medical professionals, however, their time and facilities are limited and with the ever evolving nature of chronic pain and wide variety of conditions there's no "one size fits all" remedy. So it's up to me to look for actions that help my personal struggle.
I'm always learning and trying new things to look for what suits me to live the life I want. I've found meditation a huge help and writing is a personal release for me. As with medications my thoughts won't suit everyone but if they give just one person comfort and the opportunity to access debate and ideas it's worth sharing.
My post was intended to be a little tongue-in-cheek, laughter is a great medicine for me and having precious little to laugh about I'll take and create any opportunity I can
Thanks for the reply. Hopefully we can get a correspondence going. Please correct anything I get wrong. What I think I mean when I write something may mean something different to somebody else. That is the trouble with language its meaning is limited to experience that is shared.
Pain killers do what they say they kill pain. This creates a problem. The body needs to detect warning signs that something is not quite right with what I am doing here. However, you are taking pain killers which mask the warning signs so you go and do damage. You know what a bruise is. You knock a bit of tissue and several hours later you are left with swollen tissue. This I believe is one of the causes of pain out of the blue. We did something several hours previously and it has taken this long for internal swelling to get to a point to pressurise something which will respond with pain. We need to develop the skills to investigate this. It is a difficult skill as it takes hours of observation before a trend can be realised.
For example I can get massive pain into my right arm. The trigger is the barest amount of discomfort in my neck which is barely noticeable.
To begin to pick up the barest amount of discomfort you need to try and reduce the pain killers. This is a slow process because the body will go into withdrawal. Anything you have been taking for a long time is additive. So, reduce any painkiller slowly and speak to a pharmacist they know more about drugs than a doctor.
There is a book which is a free download and it is one of the best books ever written on meditation and mindfulness. It is written by a Buddhist monk who does meditation and mindfulness 24/7.
The book also gives very important instructions on posture which can be applied to helping with pain and discomfort. If we can sit balanced or walk balanced then there is less tightness of muscle on painful structures.
A thing to note. Muscle gets weaker the more contracted it is. As a muscle contracts it cuts off the blood supply which feeds it with nutrients and takes away waste products. If a muscle over contracts and fails to uncontract then you have a recipe for pain. Muscles have no means to uncontract. They rely on other tissue structs to do this. Sometimes muscles do not uncontract and you need the services of massage, yoga, chiropractors to do the uncontracting.
I will stop here as you will need time to digest this. You will need time to check the truth of what I am saying.
I'm not sure you understood me or read my response. I asked about YOUR PERSONAL experience, I really don't need a piece of generic marketing advice that appears to be copied and pasted from elsewhere.
I'm sorry if that appears rude, I'm trying to be direct (and implications can be misconstrued in the readers' mind) and I found your response to be rather patronising, vague and not in keeping with the personal nature of the post.
I'm not sure that you understand chronic pain at all
Thanks for the reply. You said: "Interested to hear from your experiences Johnsmith I'm always open to new ideas - hence joining the forum. May I ask what condition(s) you've had success in mitigating?
I have given you part of my approach to handling what I have. Diagnosis is a medical model. Diagnosis helps the medical models treatment regimes it does nothing for cause.
To get at cause you have to study yourself. You need tools for this. Multiple different causes can present the same symptoms.
Some of what I present can be vague because what I do is not in many medical person's manual.
I have no interest in understanding chronic pain. I am interested in the little things that can help reduce the effects of chronic pain. I know what chronic pain is and what it does from personal experience. I know from my own experience of the medical profession that they have very little interest of investigating certain things. As they have very little interst of investigating certain things they cannot know about certain things. This results in many people being injured by the medical profession.
You say you: "I really don't need a piece of generic marketing advice that appears to be copied and pasted from elsewhere." I cannot see your condition and cannot condense in a couple of sentences things that took me years to learn. so all I can do is recommend a book which helps on the issue of investigating yourself. This is a way of reducing the effects of chronic pain.
Sorry I was not able to communicate effectively with you.
Your being far to nice. But that's just it, isn't it?
Holy guacamole! 👏🏼 you've just described my day to day life! Including the part where friends & close ones just don't get it: the 2 key fundamentals being "chronic" & "incurable" what's so difficult to understand about that?!
I'm incredibly "lucky" that the remaining friends either feel the same struggles or accept my health as a part of who I am. The others can.... *insert expletives*
Ironic that someone with an incurable and chronic condition that's terminal get treated so very differently. LIFE is terminal! Just because we haven't had a doctor give us a predicted "death date" in the near future the compassion isn't always there. Surely the human spirit has enough love and empathy for us too. We'll just have to seek it here from like-minded, unfortunate, fellow sufferers
I'm glad my dark humour came across. I have to explain my meaning sometimes! And thank you, such a fantastic compliment. Not a light subject to discuss but talking always helps xx
Well done Ultimate
(I'm a Hobbit btw...Elf - Hobbit? )
I couldn't have written it any better ..that's if I could actually hold a pen. So thanks for your informative and extremley funny; yet poignant, explanation..You have an earlobe pain free?..I have a big toe ;-).
I'm 17 years further on down the line from you my friend, and honestly it gets worse..There now, bet that's cheered you up no end!
Though I have to admit that my close friend, whom I call "excruciating-pain-everywhere" isn't totally to blame for my random outbreaks of 'shoutiness'. Sometimes my knobbly and arthritic finger(s) creak upwards and point to my other constant companion of 22 years "COPD/Bronchiastastis-breathing-no-chance-love" as the main instigator of my often miserable demeanour and bad temper! (which I gave up apologising for years ago..it is NOT my fault)
I'm a prescription Junkie; just like you, so maybe you and I could sit/stand/lie down..stand on our heads in a very small circle, and do what Specialists call the 'talking' therapy together
(this really means "Get out of here there's nothing we can do, so go question your own sanity!!")
....but we better make it quick as I tend to slip into a medically induced coma like sleep each day about nozzzzzzzzzz
Love it absolutely perfect , I just put the kettle on after putting on my pj's after a 12.5 hr gruelling shift that'll take at least 3 days to feel semi back to before the flare up stage, I began to read your message and desperately needing to sit down I still stood and read and laughed and laughed ...... thank you for that seriously cheered me up. On a lighter note do you mind if I use your statement for a course I'm doing at uni on pain management you've explained the regular and the shitty days and some days I just can't find the nice words to express to those around me with my daily suffering other than lists of bad sarcastic language because they come out with the most idiotic of statements and I want to stab them in the eye lol .
I'd be honoured for you to use it - though you might need to censor it a little I read so many descriptions that sort of express it but never quite hit the nail for me, I sort of "need" to laugh at the situation and yes, I swear like there's no tomorrow! I simply cannot explain my health conditions without expletives, apparently it's a sign of intelligence and honesty - not that I just have a foul mouth lol!
I'm so glad I made you laugh, we have so little to laugh at - no idea how you manage such a long day and pain! I've been whining about 9 til 4 today and having to stay until 5 tomorrow! I wish you a speedy recovery xx
Great thank you, I don't think any requires censorship it fulfills the description and adds to the wit and humour. Most have that sign of Intelligence where it's our only way of self expression. Personally I find it useful especially those days which are extremely hard and those days that sucker the life right out of you with what feels like through a straw. My days at work feel like that I've dropped my working week to help cope better however the 12.5 hours are long and hard and if I'm totally honest like many it's not for the love of it. Prior to my shifts I plan mainly the day before and dependant on how I'm feeling physically and emotionally it helps prepare for the potential day ahead, then the rest consists of medication , tens machine and what shoes will be more comfortable with an on the spot reassessment in the am prior to leaving the house. It's a military operation in my head and I'm sure for many little changes to patterns of our days are enough to send us off on our intelligent rants lol. That extra hour requires brain readjustment planning and continually having a self chat telling ourselves we will be fine and cope because we can , when really all we want to do is shout from anywhere we'll be heard with no care who hears us. Relief for a short period until that little excitement wears off and reality brings us down with a bang to start all over again until the day ends and home is luming however the journey from work to home is still a task which can prove to just have as many stressors.
You are spot on! I'm dreading the journey home (under 4 miles that can take nearly an hour!) far more than the "long" day. But when I get home it'll be to dinner cooked by my eldest child (she's 19) and snuggles with the little minions (aged 8 and 9) and as hubby is working away tonight I have the bed to myself - not even 6.30am and I'm already looking forward to this evening
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All the best, Wendy x 
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