Drug Status – It’s Complicated

When I talk to my healthy friends and family about pain relief they nod, sympathise and make all the right noises but their actual understanding is so limited. It’s partly my own fault because I abbreviate to the point that “I can’t take most pain killers” is my explanation of the situation. It’s just so exhausting and repetitive to explain, and even when I do, 50% of people will either have me down as a drama queen or a liar by the end of it because it DOES seem ridiculous. Dealing with it feels ridiculous. But it is real, isn’t exaggerated and there seems to be a bit of a genetic trend of drug allergies/intolerances in the women of my family. It doesn’t help that despite their own advice being to immediately stop taking drugs, my GP had me down as only allergic/intolerant to penicillin – which I’m fine with. It’s beyond frustrating. Here is a list of the main drugs I’ve tried, I have to explain all of this to everyone, all the freakin’ time, even when I’ve just woken up from a general anaesthetic:

Paracetamol (Tylenol in USA) – I can take this, woo hoo! It’s good if I wake up in the middle of the night with an especially sore wrist or something because it takes the edge off so I can sometimes get back to sleep, but it’s not very effective for dealing with chronic pain. Despite it being very cheap to buy, the amount you can buy in one go is limited in the UK so until recently when my GP prescribed me a box of 100, I had to re-stock every few days which isn’t ideal.

NSAIDS – Drugs like Ibuprofen, Naproxen, Diclofenac and Mefenamic acid are absolute no go’s for me due to my acid reflux/IBS issues. It doesn’t matter if I swallow them, put them up my butt or rub them on my skin. After just a short amount of time the result is a glorious digestive apocalypse. Spew, poop, pain, acid, mayhem. And it lasts for ages. I might as well just swallow some napalm.

Opioids – I don’t seem to metabolise these. I’ve tried, Co-codamol, Dihydrocodeine, Co-dydramol, Morphine (in hospital) and whatever the heck they gave me after my general anaesthetic. I don’t get any pain relief beyond the paracetamol they can be combined with and seem to just slowly overdose on them over a couple of days and get very ill with a side order of constipation – hello stretchy GI tract!

Tramadol – KILL IT WITH FIRE! Absolutely no pain relief, thought I might die.

Opiate alternatives – Acupan, this can get in the same fire as Tramadol. This might have been the worst of the bunch. Palpitations, hard-core vomiting, dizzy, super low blood pressure and a rash. This happened pretty quickly, after the first dose. My GP really freaked out with this one.

Muscle relaxants – Diazepam and Methocarbamol may seem like a lot of fun, but my muscles being tense is the only thing that stops me resembling a sack of bones on the floor. If you relax my muscles too much, you are opening the gates of pain hell. I was only ever on a low dose of these and didn’t get any awful side effects, they just generally worsened my medical condition.

Amitriptyline, Gabapentin, Pregabalin – These all seemed okay at first, though gave no pain relief. Over about a week they all made me really ill though. I know that all drugs come with potential side effects but when you get an itchy rash across your chest (that then lingers for weeks), palpitations and feel like you’re going to pass out it stops being a side effect and becomes another illness to deal with.

Acid reflux medication – Omeprazole does nothing, Esomeprazole doesn’t seem to be doing anything either, Lansoprazole is some kind of fresh hell. About 15 minutes after I took this I got insane abdominal cramping followed by the most spectacular diarrhoea I’ve ever witnessed. It did this three times and then I decided I prefer acid reflux to excruciating pain and potentially crapping my pants.  Ranitidine gave me super fun migraines. I’d never had a migraine in my life, holy moly, now I know what people complain about. Talk about painium in the cranium.

SSRIs – While these weren’t for pain, they are just another drug that hates me. After being on Fluoxetine for a number of months, I developed serotonin syndrome which is no picnic. I had to stop the medication suddenly which led to withdrawals which is a special kind of torture that leaves you with no happiness, dignity or will to go on.

Buprenorphine Patches – Okay, Dr Google says these are an opiate but the pharmacist said they are different and are metabolised slightly different. They seem to take three days to build up the drug in your blood stream. Let’s just say, they have been 3 very up and down days. At first I felt a bit light headed, then I was seriously drowsy and slept for an entire day, then there was spewfest-2016 combined with feeling like my skin is crawling. Next, I think the pain relief kicked in a bit and I hung out with my Mum, today I have woken up with a mega-headache and feel a bit sick and seem to have boarded the constipation train. But the thing is, they are helping my pain, maybe about 20%. I am going to put up with these delightful side effects in the hope that they pass and I might finally have found a drug that helps. Maybe wrecking my shoulder has been a positive in that if I had not been desperate, I’d not have been willing to try the BuTrans patches.

My current cocktail! I much prefer a pina colada.

I don’t even think this is everything I’ve tried and it doesn’t even touch on the antihistamine/steroid lottery or the fact that they had to pump me with lots of antihistamines while I was under general anaesthetic. It also doesn’t cover the super-fun issues us EDSers have with local anaesthetic. I am far too much of a space cadet today to even think about it today. This is why I am sometimes vague about my issues with drugs, though. I can’t wait to see immunology and the pain clinic – There has to at least be a way to make an educated guess instead of popping pills willy nilly in the blind hope that they won’t make me seriously ill.

Space Cadet Ren, over and out.


4 thoughts on “Drug Status – It’s Complicated

  1. bowermanland says:

    I always appreciate that I can take and react well to most painkillers. The only thing I can’t take is Diclofenac. I was just wondering (and sorry if you’ve been asked this before) if you’ve been checked for Crohn’s disease or an ulcer? I was just considering your rapid gut reaction to pills. I’m sorry if you’ve been checked for everything and I’ve missed it or forgotten etc. – I’m a constant space cadet. I really want them to start trials on Marajuana for pain in the UK. I’ve never tried it, but I think that it might be the answer for many people in your situation with pain.

    Liked by 1 person

    1. brokendownbody says:

      Without saying anything too incriminating – it could well be the answer!

      The investigation into my acid reflux was basically an upper GI endoscopy. No ulcer or anything was there, though my gran who is super sensitive to drugs has had an ulcer. I think it might be a mast-cell issue as antihistamines and a low histamine diet makes a massive difference. Right now i am lying in bed, feeling dangerously close to spewing, eating salted crisps (lying in bed, sick people standards) as they are the only thing that helps curb the nausea.

      I don’t think doctors consider the psychological effect this rigamarole has every time I try a medication. Gah. Sadface!


  2. bowermanland says:

    If I ever got to the stage where ‘conventional’ pain meds didn’t work, I’d be growing my own asap. And I would not be penitent – pain is one thing I never feel bad about. Also all the current pain meds can be abused, and are sourced from natural originals (poppies for example) so why should the gov. not investigate Marijuana – I feel that by not exploring this option, they are holding sick people to ransom. I feel that this may be because of Big Pharma, as it’s called. And if it’s not, why are our Gov condemning their people to pain? Re: lying in bed – I’ve actually kept a diary of that this year, and I’ve spent over a 1/3 of 2016 in bed all day. By that I mean awake for over 12 hours. Without wifi and audiobooks I’d be fucked. My anti-nausea is bread. Yeah, I swell up, but it stops the sicky feeling and the hunger pains I get. I can’t eat crisps ‘cos no gallbladder and grease. I had a pre-ulcer in 2012. I do hope you feel more you soon. (Rather than ‘better’).

    Liked by 2 people

  3. jennifer says:

    Aaannnndddd it’s not like you can point people to some EDS pain meds list either coz each of us are slightly different … I sooo hope that those side effects go away soon and these work for you … I’m not going to comment on my drug intolerance as it is too much of a tangent only to say that yes yes yes … people think we are making it up, people don’t get it, and it’s hard to help them understand coz we don’t get it ourselves! Never ending journey this pain thing. Oh, and I’d missed that you were also a stiff zebra … Me too!

    Liked by 1 person

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