#RABlog week 2016 – the pain of pain meds

14
51

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today

 

This one is really simple. And really personal.  It comes down to this.

Without daily opioid pain medications my life is endless torture.  Almost every joint in my body is inflamed and painful, every day.  And it’s the kind of pain that cannot be worked through, pushed passed or be distracted from.  The kind of pain that invades every cell of your being and wraps you in a bear hug that’s way too tight, and you cannot breathe.  The kind of pain that, if I knew it was going to continue forever, every minute of every day of my life, with no hope of respite, I would not be able to cope.  I would choose my time and say my good byes.

I’m not being dramatic. I’m being honest.

I have reached that point before.  I have laid in my bed night after night, staring at the ceiling unable to move, unable to think, just…unable.  And my only bright spot, my only ray of hope was telling myself that when my kids are old enough and independent, I can opt out. I can end the pain.  I don’t want to die. I want to live.  But a life with that pain, always there, is not living.  And there is only one way to make the pain stop.

While that sounds pretty desolate – and it was – there is a solution for me.  Opioids.  They don’t take the pain away, but they take the edge off enough so that I can get out of bed and function for a few hours.  Live a kind of life. Nothing like my old life, but still a life worth living. A life that is more than just intolerable pain.

That’s what opioids can do for me.  They are a life-saving medication, for me.

I have written at length on the issues and the ‘opioid crisis’ as I see it.  Lene Andersen has written an excellent piece on opioids, which includes the relevant statistics.  And with addiction being such a major concern, what do the statistics say?  At the highest estimate, including those with previous addiction problems, only 3% become addicted to pain medication.

3%.

I’m sorry. I’m just not seeing the opioid crisis.

The crisis is in pain management.

I have tried simple analgesics, anti-depressants, acupuncture, exercise, physical therapy, nutritional therapy, heat packs, ice packs, massage and medications for nerve pain.  None of these have been effective enough to allow me to stand up for more than five minutes.

The treatment of last resort is opioids.

To get my pain medications I need to see my GP once a month. I need an authority phoned through to a government department, who approve and monitor my opioid use.  It is well regulated, highly monitored and it is impossible to legally get these drugs any other way. I cannot ‘doctor shop’.  It is a good system and I have no problem with these restrictions.  I find them to be appropriate, effective and not a great hardship to manage.

However, because I take different doses of oxycodone and I take both slow release daily, and immediate release for break through pain, I usually have three different forms of oxycodone on hand.  10mg slow release for the morning, 20mg slow release for night time and 10mg immediate release oxycodone for breath through pain during the day.

Ideally, I get all of these scripts filled at the same time each month. But because my usage varies, sometimes they get offset, and I have to go for three separate appointments to get these prescriptions filled.  Tedious, yes.  But also expensive, and difficult for me because, well, I’m in pain!

This month there was a 2 day lag. I would run out of both slow release meds two days before I could refill my immediate release oxycodone.  I decided to go without the slow release for those two days, so that I could just attend and pay for the one appointment.

I suspected it would be difficult, and it was.

Day one, without slow release meds I used two extra immediate release doses to get through the day,  and another two extra to get through the night.  As it was I only slept four hours. All my joints were on fire. Sleep only came from sheer exhaustion, and I started the next day on the back foot.

Day two, I woke in massive pain.  My body hadn’t rested at all, and had no time to recover.  It took a double dose of immediate release to be able to walk at all.  With the double dose comes side effects like nausea, dizziness, that drugged feeling and the itches.  I never got on top of the pain all day.  I lay down most of the day, only getting up to go to the bathroom. I couldn’t eat, too much pain. I couldn’t think. Too much pain.  I couldn’t function at all.  Too much pain.

I went to bed and lay in bed all night with my lower spine, hips, knees, ankles ,toes, shoulders, elbows, fingers, C-spine, jaw, ribs…EVERYThing burning, aching, stabbing.  I couldn’t roll over.  Couldn’t sleep on either hip or shoulder. Could only lie flat on my back.  (I sleep on my back every night.)  I slept a total of 2 hours and 37 minutes, after the previous night of almost 4 hours.

This morning I was exhausted and in agony from the moment I opened my eyes.  I needed the double dose again to get myself down to the GP to fill my script.  He filled it with no comment, except that I looked terrible and we laughed.  No problem to get the script, but big problem to get on top of this pain now. I have spent all day chasing pain.  Taking extra doses, just to get to a point where I can function.  Hopefully tonight I will be able to sleep, and sleep will help me reset my body.

Tomorrow I will have had 24 hours of slow release oxycodone in my system, buffering my pain and I should start to get back to my ‘normal’ where I have 2 or 3 functional hours.

Those hours are very important to me.  Only oxycodone gives them to me. They are all I have.  They ARE my life.

The past two days have reminded me just how painful my disease really is, and I only went without my  slow release meds.  It’s a stark reminder that I could not exist if all my opioids were taken away.

Yes I am dependent on opioids, but that clearly isn’t my biggest concern.  Much more pressing is a life of needless suffering, for the sake of some political agenda.  And a life of endless, needless suffering is what my GP will be condemning me to if he decides to stop filling my prescriptions.

14 COMMENTS

  1. And there you have it… A drug that will block enough pain that you can have something of a life, or the withdrawal of said drug and you’re screwed. It’s really very simple. Pity the doctors don’t seem to be able to see that.

        • Hi Lisa, I’m sorry you’re in so much pain. SAdly Docs not being able to figure it out is a common story. Tell me more about where you’re at. Or send me an email from the contact page. Or if you’re on facebook, message me there. It’s a hard road, but its a whole lot easier with people who understand. Hang in there <3

    • Hi Karen – there’s a lot they don’t see. My very young Rheumy said to me “but you’re not nearly as bad off as some of my other intersticials” as I sit there, ready to eat my own hair to muffle the screams of pain and every breath feels like a butcher knife in my side. Its very very hard to see how “good a shape” I’m in when you can barely breath, and the tears are rolling from pain. My Rheumy has a nurse who has RA…she gets it. Be well!

  2. We have discussed this before and still
    I find it horrendous what my city cousins must cope with, on top of the disease from hell. I see my gp every 8 weeks or 10 or 12 , I am on very high dose opiates, and can ring for a script which is a months supply of patches, every thing else is 3 month, the pharmacy will pick up the script, make it up and mail it, if I am really unwell or floods fire etc, I am treated with love and compassion by all who I deal with. Friends of mine who are also severely
    Damaged, the same, rural health is a winner, might be a hour on rough roads to gp or chemist but worth it. Maybe the health professionals of suburbia need a overhaul, we live hard lives but we are never treated badly, and yes there are major drug problems in the bush, sad that you must suffer the loss of dignity as well.

  3. Nene,

    My heart breaks, as I read what you go through, day after day. You need these meds for your quality of life. I can tell that you are cognizant, of how they are administered and at what level you take them.

    Thanks for sharing your journey.

    Brenda

  4. Thank you for validating my pain. I need pain meds to function, that’s all. I’m not trying to get a buzz or escape. It’s really that simple. All this nonsense about addiction, as if this will stop it. As I tell anyone who will listen, how well did Prohibition work? Meanwhile, those of us with chronic pain, and non-remission RA, so far, have to act like we’re criminals for pain-relief seeking, as opposed to drug seeking. I’ll be happy when this latest phase blows over.

  5. Well, you already know my say on this issue. I’d rather be hooked than hurt. I KNOW what it is to have to sleep in a chair night after night because lying flat is impossible due to pain. I KNOW what it feels like to have pain so bad, its worse than the 30 hours of labor it took to bring my first child in the world, and I screamed for hours begging them to end my suffering, I KNOW what it feels like to end up in the ER so doped up on aleeve trying anything for relief knowing I’ve taken too many and I’m OD’ing, and the ER doctor accuses me of being there for the drugs and tells me he will give me nothing and sends me home to “continue with the aleeve” and I yelled at him “so your advice is to go home and commit suicide by Aleeve?” (The hospital Patient Advocate and I had a looooooong talk about this little episode. Lets just say, when I got done, I never got a bill for that one.) People who don’t chronically hurt, don’t have a flipping clue. Sorry, but there it is. And I’m talking about even some medical people. I have a wonderful doctor, but some of his staff….don’t have a clue (when you get the eye-roll, you know they are clueless). I’m blessed and grateful, I have two doctors who understand. Actually, my older, more experienced GP understands better than my very-young Rheumy, she’s still learning. bless her heart. But anyway, I’m in the middle of a lung flare at the moment and have been away for a week, so this one hit me good. You keep right on tooting our horn!!! Keep up the good fight.

  6. Hello all,
    My name is Jordan. Approximately a month ago my mother began a round of antibiotics for an ear infection. After a few days of taking the medication she started to experience joint pain all over her body. She stopped taking the antibiotic in fear that it was causing a serious side effect. She waited for about a month to see her GP when symptoms didn’t subside. After seeing her doctor, her blood test results came back with her RA factor being positive. She is unsure what this means, and whats worse is they said there is no opening to see a specialist until January (3-4 months). She is in constant pain and it seems as though these are the symptoms of RA. Within 2 months time her life has been turned upside down, it seems like she is slowly dieing from the pain with each passing day, and she hasn’t been prescribed any pain meds that are actually working to see her though until she sees a specialist. I have done allot of research over the past few weeks to educate myself in an effort to help her find resources. If there is someone out there with information, resources, or just helpful advice, please help. I apologize if this isn’t the platform to ask for help but I am unsure of what I can do. My email is jordanmychaeldeuel@gmail.com, if there is anyone out there that has the time, please help!

    • Hi Jordan, I’m so sorry to hear about your mother. It certainly sounds very suspicious for RA, unfortunately, but you won’t know until she is assessed by a rheumatologist. It’s terrible how long it takes to get in to see one. Her GP should be able to prescribe her some anti inflammatories at least, in the meantime, to help with the pain though. She should go back and tell him again how bad the pain is, GPs often don’t listen for the first few times. If she’s in really bad shape the GP could try to get her a quicker appointment with a specialist as well. She can’t really start proper treatment until she’s seen a rheumatologist for a correct diagnosis, but she needs pain relief. I’m sorry, she’s in a really difficult place, waiting months to see a rheumatolgoist while in so much pain. Is she on facebook? She can talk to me and others who understand on my facebook page. Or if she messages me I could put her onto some support groups. I wish you both all the best, but in all honesty I would go back to the GP, push harder for some anti inflammatories at the least, and see if he can get her an emergency appointment with the rheumatologist. Good luck to you both Xx

  7. Hi , I’ve just found your blog and spent the last couple of days reading. You are amazing! An amazing woman and an amazing writer.
    I was diagnosed with RA when I was ten (45 years ago!) and luckily I’m one of those people whose RA is well controlled by methotrexate.
    I wish you all the best.

    • Hi Pip, thank you for your kind words! Wow, 45 years of RA. You must be a very strong lady. Glad to hear that methotrexate is working for you, it can be a miracle medication. All the best to you as well 🙂

LEAVE A REPLY

Please enter your comment!
Please enter your name here