Every now and then (all the time) I get asked about what medication and supplements I take/exercises I do/if I drink water hanging upside down off the kitchen table etc – ie: How do I deal with my pain? So here’s some things that help me.
I’ve written about this before but it’s an ever-changing landscape, and when writing a list of tips to a friend, I realised there’s quite a lot I probably haven’t shared. And I don’t, usually, because A) it’s personal, and B) I refuse on principle to give unsolicited health advice. So, read on with the understanding that these are things I have found that work for *me,* they’re not universal, and I am not a health professional. But hopefully some of my knowledge will be of use.
I will stress again that this is an ever-evolving thing. If you know me or read my work, you’ll know I’m more often-than-not experiencing some sort of withdrawal/medication change. It sucks but it’s the nature of the beast. You don’t know if something is going to work until you try.
Previous posts on this topic:
- Panadol – self-explanatory
- 5mg Prednisone – I’ve written quite a bit about my old friend prednisone. It’s a nightmare of a drug both to go on and come off, and it’s also a complete godsend that makes me feel *almost* normal. But, because some wonderful side effects including osteoporosis, (and mood swings, and weight gain, and making your face look like a moon) it’s not a longterm option. It’s taken me five months to get from 15mg to 5mg, and my rheumatologist instructed me not to reduce the dose any quicker than 1mg a fortnight, or preferably a month, basically because your adrenals stop working while you’re taking it, and if you stop too quickly, they don’t realise they’re supposed to be do their job. I had a friend end up in the ICU after stopping prednisone. It’s amazing but it’s not to be fucked with.
- 100mg Modafinil – This is a new thing I’m trialing. It’s usually prescribed for ADHD and narcolepsy. My rheumatologist thought it might help my fatigue. He prescribed 200mg initially, which I took and didn’t sleep for 48 hours, so I guess you could say yes: it does help fatigue. Obviously that’s unsustainable so I dropped back to 100mg. It is definitely helping. Unfortunately one side effect is an increase in anxiety. Also unfortunately it is unsubsidised for any treatment other than narcolepsy, so it is about $120 a month. But I will figure out some way to afford it because if it’s going to mean I can actually have a life, no cost is too high.
During day/as needed
- Ondansetron – antinausea
- Diclofenac – I’m not really supposed to have this, because of the possible effects on your stomach, but honestly… I’ll take the risk, for some pain relief.
It’s worth noting that I would take these during the day if I could, because they’re all painkillers – but they also effect your cognitive ability and are sedating. Some people don’t experience that, but I guess because my energy is so low and I have brain fog to start with – these basically wipe me out.
- 900mg Gabapentin – this is commonly prescribed for nerve pain
- 15mg Codeine – I’ve been slowly dropping my dose (I used to take up to 90mg), and it sucks because obviously it really works for pain. But it effects my gut and I want to be off it if I can. Unfortunately I have really bad Restless Legs Syndrome, and codeine fixes that. Plus RLS is a symptom of opiate withdrawal so knocking the dose down is hard.
- Acupan – Some people take several doses of this spread across the day, for pain, and it apparently works well. As I said above, I find it effects my cognitive functioning, so I take it at about 4 or 5pm, when I don’t have to think as much.
- Kratom – My doctor mentioned Kratom a couple of years ago and I dismissed it, because he mentions a lot of things and I am pretty suspicious and cynical. That happens after six years of being recommended a bunch of shit that doesn’t work. But Kratom does. It relieves my pain and gives me energy. A small dose lasts a few hours. It makes me nauseous and anxious if I have too much, and I don’t take it every day because there’s no official evidence of whether it’s addictive or not.
- Vitamin D
- Go Healthy Liver Detox – I know, I know, your liver detoxes itself etc. But my doctor recommended this specifically because of the stress my liver is under with the amount of medication I’m on. And I generally listen to him.
- Clinicians stress support for adrenal fatigue
- Vitamin B6
- Complex B vitamins
- Folic acid
- Flaxseed oil
- Collagen and biotin – I take these to help with the damage to my skin and hair from the chemotherapy I had
- Butyrate – This is a weird new thing that I’m not entirely certain I understand, but basically, my doctor recommended it to help with trying to right the microbial imbalance I have in my gut due to antibiotics.
- Antiflamme – I get the Extra Strength one that has cloves in it.
- Rheumon – this is a gel that is targeted at arthritis but I imagine it would help lots of things. I’m not certain how it works, but it’s got some sort of active ingredient. Basically it feels to me like it numbs my super sore spots. It’s a godsend to be honest. ‘
- Surmanti Muscle and Stress Spray – I bought this stuff on a whim a couple of years ago. I didn’t think it would actually work, but it does. It gives me pain relief and it does actually make me feel more calm. That’s probably a learned thing now or a placebo or whatever, but who cares. It works.
- Hot water bottle – Heat is good for inflammation. I use mine constantly.
- Yoga – Yeah, I know. I’m definitely not telling you to do it. But it helps me a lot.
- Physiotherapy – Finding a good physiotherapist has been huge for me. She’s helping me to address some of the ways my body is “stuck” – ie I have bad posture to compensate for the pain, but I actually need to be building my back muscles by pulling my shoulders back and down. It’s amazing how many times I catch myself with my shoulders up by my ears. She gives me exercises to do and I (mostly) do them, even if I whine because they hurt. In the long run, it’s going to help me a lot.
So, a note about side effects. Because I am on quite a few things, it can be hard for me and my doctors to pinpoint exactly what is causing what, and sometimes different combinations make things even more complex. Sometimes I don’t even know if what I’m experiencing is because of medication, or just another symptom of my illnesses. For example, one side effect listed for several of my medications is “muscle aches.”
Cool cool cool. So, I’m taking this drug for muscle aches and a possible side effect is muscle aches. *Squints eyes*
Having said that, I still wanted to list a few things I experience that may or may not be side effects of one or more of the above.
- Muscle aches
- Brain fog – It’s hard to describe this. Basically the best analogy I can think of is when you’re swimming in salt water and you open your eyes. It stings and you can’t see shit. You *know* that you’re underwater at the beach, but you feel like you don’t have empirical evidence.
- Memory loss – This has become more and more marked over the past few months. For example, I have to think very hard about what I did this morning. I lose whole chunks of time. I have no idea what I’ve told people. It’s pretty distressing and my doctors don’t know what’s causing it.
- Weight gain/water retention etc
- Hair loss
- Body not healing (this is the prednisone)
- Vivid dreams
There’s more, but it’s hard to think of everything.
Hopefully this is helpful! Please ask if you have questions. I am always gratified when my experiences can be of use to others because that means it wasn’t all awful/useless/a waste of time.
(Please don’t use the comments to make recommendations to me. This may seem unfair and one-sided, but I am explicitly not making recommendations or giving advice here, I’m just talking about what works for me. I get a lot of unsolicited advice and I have a bunch of doctors and google so I’m doing OK. Thanks!)
Interesting conflicting thoughts there between, I am suspicious of my doc around Kratom cos Doc mentions lots of things and the comment on the Liver Detox cos “I generally listen to him”. It just goes to point up how complex the combination is and how you absolutely have to own your treatment to a degree. I can still remember the Doc looking at me as if I was an alien when he suggested daily multiple paracetomol for a toe thing that was flaring and generally background icky – I just looked him in the eye and said, you seem to have forgotten I have a dodgy liver – is it wise loading it with daily paracetomol?
Hoping I never get to this level of complexity though. No wonder you have brain fog – merely keeping track would be enough for most of us.
I didn’t pick up that I’d contradicted myself – but I kind of mean both things. I *do* generally listen to him, but he also suggests a lot of things and a lot of his ideas aren’t accessible to me, for whatever reason. So I trust him, but I don’t do everything he says, if that makes sense.
Honestly, being sick is a fulltime job.
(Prefacing the following with the disclaimer that I’m definitely not telling you what to do or anything, just putting something out there that lots of people don’t know and which, obviously, may or may not be helpful, and apologies if you already know about it.) Diclofenac is available as a suppository which, although potentially slightly icky to administer, completely sidesteps the stomach issue. GPs are often very surprised, nay disbelieving, to discover this is the case and often equally disbelieving that anyone would want it in this form. To which all I can say is that they’ve clearly never experienced chronic pain. Best wishes with your condition.
Eek, sorry, I didn’t read the rest of your post until later – fired off response triggered by mention of diclofenac. Previous comment most definitely withdrawn.
Thanks Sasha, I appreciate this because at least you started with the disclaimer! And I actually didn’t know that about diclofenac, so you’ve given me new info, which I appreciate.