No one ever seems to sit you down and discuss with you the full ramifications of a diagnosis of a chronic pain disorder.
And yet, there you are with a pretty Earth shattering diagnosis, sitting in the doctor’s office and your thinking; “Yes! I have a reason for this! I am not insane, and someone is taking me seriously! FINALLY! I have an answer.” Because there are so many healthcare professionals that will tender you off as insane or difficult or as a hypochondriac or even as attention seeking or medication seeking at worst, rather than diagnose you with something long-term and treatable – and I would adore to know the reason for that!
The relief is palpable at the point of diagnosis, you have a reason and you can point it out to a bunch of people and describe it - even sit and explain it with them, because you are told the biology of it all. And yet, the doctors have failed you hugely in one key area - the area that says “And what the frak does that mean for me, my life and my future?” They miss out somehow the implications for your life, for your psychology and your relationships, not to mention the emotional impact.
The emotional impact is the one that hits hours or days after walking out of the doctors office, it hits when you are alone, when you have had a chance to digest and think about all the information you were give. When you have read half of wikipedia, web MD, and a few other places, scared yourself silly and then spoken to others who are further down the line than you are. It hits when you have had time to really think about the information and then try and place it all in context with your life.
And yet you will find yourself in the arms of a trusted friend sobbing your eyes out wondering; “Can I have children? What about the side effects of the medication on the fetus?” “Is marriage possible?” “Will my partner leave me?” “Will it be too much for them to cope with too?” “Can I have a career?” “Will people think I am a malingerer?” and some of that is purely because for most people diagnosed with a chronic pain condition, it is invisible to the naked eye. And the reason for all the questions, is because your doctor has only told you what you have and how it came to be.
No one sits there and goes through your life and looks at the minutia of the medicines and the foods and the activities you like to do.
Before having to be put on Tegretol I was on the Hormonal birth control implant called implanon. There was a two-fold reason for being put on it, my periods had always been excessively painful (drop down, clutching my abdomen kind of painful) and secondly I have a boyfriend and I did not want to get pregnant. Impanon was the best solution for the girl who forgets to take antibiotics - so this tiny little matchstick like device is inserted into my arm, and bye bye periods and bye bye chances of pregnancy.
All the while I am in extreme pain from my teeth, and thinking it is a dental issue I refuse to deal with it. I hate dentists. I once had a dentist remove a filling sans anaesthesia and the less said the better. So when I finally do go, the guy looks and says - other than a busted wisdom tooth (and when did that happen?!?!) All my teeth seem fine, my jaw seems fine, but the fact that I am having pain in that area means a bite guard should be implemented post haste.
I never get back to the dentist 2 cancellations (one because of a snow storm and the other through a strep throat) later they kill my file. By this time I have my complete diagnosis. TN. But at this point no one has sat and looked at me and asked. What medications do you use? What foods do you eat, Are there any high impact activities that you partake in? These three questions are self research and probably the most vital questions to ask after are you ALLERGIC to anything and are you or is there the possibility of you being PREGNANT right now? They SHOULD be asked by a doctor after such a dramatic diagnosis.
Why are these questions so vitally important?
Let’s go back to Tegretol and for the most part in my research it is one of the most liver enzyme inducting medications on the market – there are others, but this one is pretty potent. It basically purges your body of everything through your liver FASTER than ever before, because it makes it create more of a cleansing enzyme. So that wonderful Implanon that I was on? Rendered completely USELESS, in fact there is no HBC that will EVER work for me now. It, simply put, is broken down before true efficacy is reached. I have to look at barrier methods as an alternate - and they have a reduced effectiveness over HBC, in a typical use situation. Did my doctor relate this to me? Hells no! In fact, as of writing this, they haven’t even brought it up!
So, why the food question? Did you know that grapefruit and it’s juices can inhibit the action of the enzymatic processes of the liver? Yes, that is right the Grapefruit in the continental breakfast offered at a hotel or even that you make each morning - can monkey with your medications! (For further information take a peek here http://en.wikipedia.org/wiki/Grapefruit_drug_interactions ) And did my doctor tell me about drug interactions with foods either. NO!
And as for activities, things like using a trampoline or high impact sports, even anything with vibrations through the body can set off Trigeminal Neuralgia (My Neuropathic disorder) But I have had to find that out the hard way. Jumping up and down for a skip rope, you betcha that hurts too! Why did no one go over this with me?
No one tells you about the effect work has on your life - because as a well person you happily meander through not realising the full effect of stress on your body, because nothing raises a red flag.
I Started work the week Wills and Kate got married, I quit with just under a months experience there. There were a few reasons, but one of the big ones was that I was feeling as though I were eating tin foil. The electrical pain wasn’t just coming and going but I was getting half hour periods of it. I was feeling stressed, had no time for me or my friendships/relationships.
It hadn’t been explained to me just how much stress would play a part in my condition being noticeable and very much in-my-face. Nor had I sat down with a stress counsellor to discuss ways in which I need to create both a balanced lifestyle - nor ways in which to manage stress itself. Work, if you are in the wrong situation, is highly stressful, which if no one has said it before - let me be the first - makes this condition that much worse (because of the flow of blood over the impinged nerve - I have classical TN)
So now, I need to strategise and make work, work for me!
No one sits there and explains that this is going to change the way you view the world and your relationships, and how the world and your relationships change around you.
A very sad thing has happened to me. I look at the world differently. I don’t know when I developed this particular outlook, but it is very much there. It is very much “Us vs. Other” meaning there is those of us with peripheral neuropathies, chronic pain, and physiological deficits due to injuries or disease - and there there are the others.
They are those lucky fortunates able to live their lives without long term problems, the need to take medication to be able to get through the day, to consider how much effort/energy a task is going to take. Those without sleep disorders or disordered sleep behaviours (I miss my sleep). Those that each time they get a job don’t have to sit down and carefully and precisely explain the problems they face, and then downplay the effect it has on their life, because they want/need the job and don’t want be fired because they are deemed unsuitable (whilst disability discrimination is illegal - it goes on. Jobs are terminated for some other reason, but the disabled person is always the one to go first.)
It really shouldn’t be that I think this way - but I do. I can’t help it. But, how do you explain that you are a perfectly capable, smart person - you just have a sucky pain condition which whilst (loosely defined) is manageable - it will never be cured, never get better, and can get worse. I am not even depressed about my condition. What is, simply is. But not one person in the medical field said to me, this was going to be a big deal, that my impressions of the world were going to change, that I would relate to it differently.
And then you get to your relationships. How can you explain to people that you take each day as it comes because you don’t know what your pain levels are going to be until you open your eyes in the morning. How you don’t know where you energy levels are going to be until that morning. That when you get cranky it isn’t YOU speaking, but rather the PAIN, and none of the hurtful things that normally you would never say, meant a damned thing.
And those are just you friends and extended family. When the big relationships are taken into consideration, your mind manages to boggle just a little bit. How do you say to your partner that your illness is irrevocable, that it is going to need more consideration. That you are going to have to fight to get seen by the healthcare professionals that can help you. That some days you are going to feel pain. And how do you explain that you will always be thinking “Is this going to make things worse for myself?” “Can I eat this, drink this what are the interactions with my primary medication?”
And how do you tell them that they are still wanted for themselves, not just as a part of a support network, and that in no way do you want to be a burden and that if it seems that you are you would like to be told. But that in return you would like to have some leeway and consideration and that occasionally you will feel insecure and reassurance is the best thing that could be given. Relationships are hard in and of themselves, let alone pain working its way into the mix
Yeah, no one sat me down to explain that my life was forever and irrevocably changed in such a fundamental way. No one sits and explains that at the beginning things are going to be difficult because whilst you are trying to fathom it all out. No one talks of the emotional fall out, as though there is some taboo about saying, “Yes I have the same diagnosis as you, and I don’t know how to integrate that and the medication and the little things I now have to think about into my already crazy, semi-manic life.”
And the worst thing is you aren’t even offered professional help in trying to assimilate the new information. It is a huge thing to be given a life long chronic pain diagnosis, and yet you are given four pieces of paper, told the physiology and then given the meds and told to get one with your life. How do you get on with your life when it is irrevocably changed? How do you help the people you are close with deal with the information, when you yourself are barely hanging in there with it?
Angela,
H£ll yeah I relate!!! I'm 4 years into this and I know just what you're going through , my diagnos is was initially TN, but has turned out to be GPN, but bye's the bye, I know the drill.
NO, no one tells us this, they write us a script for tegretol and think that's it, end of story...... and you know why I think they do this? Cause we're young.......... young folk shouldn't get this, therefore you're not going to have it long........... and if we do someone else can deal with it, this is outwith usual GP stuff.
And no, they don't think to check for MS, No, they don't tell us to avoid grapefruit, they don't tell us that it screws with birthcontrol, I had to chase for all of it, they eventually put me on some kind of high dose pill thing that made me mental, and in the end I chucked it, they all just say........... "go with the coil." or "if you're thinking about having kids don't do it on these meds, come off em"......... easier said than done eh?!
It wasn't until 1 month ago when I went to the doc asking for anti depressants and explained to her why I was depressed she made me an appointment to talk to a gynae. And thank Christ she understood my frame of mind and had the sense to make the referal for me bless her, most would have written me a prozac script and written me off.
No, people don't get it, No, they don't try to get it, but YES, it can and does get easier.
Don't get me wrong with this damned condition(s) I am a firm believer that that there is a grieving process that you HAVE to go through, and in truth, I've gone through it again and again, following each failure, following each piece of news to say...... actually, no that wont work for you. But you do get on with it, the drugs settle in your system ( eventually) Boards like this make it a world easier to deal with, be it to vent, or to speak to people in similar situations. I wouldn't have coped this far without some of the friends I've made online and on some of these boards.
No one thinks about the psychological impact of this, especially not the fertility aspects, read my blog "the guilt of neuralgia" and you'll see just how much its screwed my head, I know its not rational, I would slap anyone silly who said it to me, and would tell them to get a grip, but there is an impact that these conditons and medications have that is hugely overlooked, and in truth even in the epillepsy communities it doesn't seem to be discussed in great length, ( which in itself astounded me!)
You got pieces of paper telling you about this?! Blimey the NHS seems to be a LOT more advanced south of the border ( and I say that with only a touch of sarcasm!) Apparently I'm getting dragged to asda ,what joy what fun, but I'll come back on and finish what I was saying once I return,
Much love to you
Gracie x x x
Well back again, following the joyous trip to asda, and unfortunatley I have no idea as to what point(s) I was going to make as is all too often the way, no doubt they will come back to me eventually but probably in the middle of the night, damn that tegretol!!!
Anyway please know I'm thinking about you and hope you find some answers and some peace with regards this nasty beast. Much love
Gracie x x x
Angela, Thank you for posting this. I’m on Seasonique contsantly to help relieve some of the monthly migraines I have. It is tough to have a life, to keep going like there’s nothing wrong. When all you want is to get off the meds & run away from the pain. My husband & I are both glad we’re not having kids- we don’t want to pass either of our health conditions to a child. And to be honest, I just can’t. I don’t make much, but I’m the bread winner in the house due to this stupid economy. I hate it when people ask me if I want to have kids, or are you trying. Nope, I can’t wait for menopause. I’ll be 37 this year, & can’t wait to be 40. I want out of my child bearing years, from 22 till now, I’m tired of it. I hope for all of us to wake up one day, & that our health problems disappear. That is my wish for all of us.
I found a great article that agrees with you, that they need MAJOR training about pain, since the number of people with chronic pain are rising almost monthly.
http://commonhealth.wbur.org/2011/06/national-pain-blueprint/
Cya soon,
Sheila
OMG GIRL you sound just like me… this stuff goes on in my head everyday, i don’t know how i will feel til i open my eyes the next morning, actually i hate to go to bed everynight, simply because i know i have to wake up and feel this way all over again…i am sorry you are going thru this but all we can do is hang in there…hope you feel better and have a great weekend.