Table of Contents
A Familiar Wish List…
My original intention for this post was more of a show and tell wish list session. Where the chronic illness community could share what was on their wish list, and maybe learn about new coping tools from others like them, too. But it turns we mostly want the same thing, no matter where we are in the world – some good old pain relief. Even for just a day.
Unfortunately, what most of us want isn’t something that we’d be able to buy for each other, or even ourselves. Regardless, this was an insightful roundup to me. Have a look below!
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Kirsten of “Graphic Organic”
ONE Item I’d Really Like to Try for Pain Relief is:
Weekly massages.
The Reason I Haven’t Tried It is Because:
I have had massages which felt amazing, but it’s too expensive to have them weekly.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Physiotherapy and medication.
Bridget
ONE Item I’d Really Like to Try for Pain Relief is:
The money to properly care for myself. The money to have the surgery I needed two years ago, or the physical therapy, or afford better food, the massages that increase then reduce pain.
The Reason I Haven’t Tried It is Because:
Not many people are keen to toss money at random people or hire the chronically ill. Also couldn’t afford to complete my bachelor’s degree which makes it more difficult.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Heat and ignoring it to the best of my abilities, occasionally with assistance from methocarbamol and tramadol.
Char of “Chronically Hopeful”
ONE Item I’d Really Like to Try for Pain Relief is:
A weighted blanket.
The Reason I Haven’t Tried It is Because:
Forgot to put it on my wish list lol…
The Best Thing That’s Worked for My Own Pain Management so Far is:
A ketogenic diet.
Any Other Comments You May Have:
I’ve tried coming off the Keto diet a few times, but within 24 hours I deteriorate drastically, so it’s definitely been worth the effort!
Sam Moss of “My Med Musings”
ONE Item I’d Really Like to Try for Pain Relief is:
Medicinal Cannabis.
The Reason I Haven’t Tried It is Because:
It’s not fully legal in Australia.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Pacing and Distraction Therapy. Ensuring I get plenty of rest breaks throughout the day is so important to managing my pain. Writing and administrating my online support forum, Medical Musings With Friends, are two things that help distract me from pain. I’m passionate about both and they give me a wonderful sense of purpose.
Ruth Rosselson of “Palindromic Rheumatism”
ONE Item I’d Really Like to Try for Pain Relief is:
CBD oil.
The Reason I Haven’t Tried It is Because:
It isn’t currently available at a useful strength in the UK. It’s not legal or easily accessible.
The Best Thing That’s Worked for My Own Pain Management so Far is:
My mindfulness practice. Nothing actually gives me pain relief, so mindfulness is the best way I’ve found of living with it without it dominating my whole life.
Any Other Comments You May Have:
I haven’t updated my blog for ages. I should. I have palindromic rheumatism. It isn’t a very common type of arthritis, and I think isn’t taken as seriously as RA because it doesn’t cause joint damage. But the pain (and fatigue) impacts on quality of life – and this needs to be taken more seriously by the medical community.
Jo Moss of “A Journey Through the Fog”
ONE Item I’d Really Like to Try for Pain Relief is:
Full extract cannabis oil (including THC).
The Reason I Haven’t Tried It is Because:
THC is a controlled substance in the UK, so therefore illegal. And although, theoretically, specialist doctors will be able to prescribe Cannabis-based medicines as of the 1st Nov 2018, realistically it’s going to be months or possibly years before it’s a viable option for chronic pain patients like myself.
The Best Thing That’s Worked for My Own Pain Management so Far is:
CBD oil. I’m intolerant to most prescription pain medication so I started taking CBD oil 2 years ago. Cannabinoids like CBD (although there are over 100 different types of cannabinoids in cannabis, all with their own therapeutic properties) have been more effective in treating my pain than any prescription medication I’ve taken, and without the nasty side effects. But although CBD oil helps reduce my pain levels, I still experience a lot of pain at times -this is why I desperately want to try THC.
Melissa Reynolds of “Melissa Vs Fibromyalgia”
ONE Item I’d Really Like to Try for Pain Relief is:
CBD oil.
The Reason I Haven’t Tried It is Because:
In New Zealand it’s considered the same as cannabis under the law and so it’s illegal!
The Best Thing That’s Worked for My Own Pain Management so Far is:
Low dose naltrexone.
Any Other Comments You May Have:
I always prefer natural options first for pain relief.
Vanessa Quinlan-McChrystal of “The Girl with the Five Lads & Fibromyalgia”
ONE Item I’d Really Like to Try for Pain Relief is:
I would love a reasonable priced CBD patch that is available here in the UK. I reviewed a US one a while back, it was amazing but it was expensive and wouldn’t ship to the UK.
The Reason I Haven’t Tried It is Because:
Shipping and cost really.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Hot Water Bottle and Meditation.
Chronic UTI Australia
ONE Item I’d Really Like to Try for Pain Relief is:
Cannabis oil. I have never been prescribed pain killers by any doctors I’ve seen for my chronic UTI symptoms. It wasn’t until I talked to other women with chronic UTI that I realised pain relief was an option!
The Reason I Haven’t Tried It is Because:
Cannabis oil isn’t available in Australia yet.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Chronic UTI patients report the pain relief that has worked best for them includes:
- Amitriptyline, and when in a very bad flare Tramadol is my life saver (although only one, two can make you feel really sick).
- A combination of Amitriptyline and Phenergan. For very acute onset flare pain, I take 1/2 teaspoon of Celtic sea salt in a glass of water, the pain eases enormously in about 5 minutes.
- Hiprex, sometimes vitamin C, essential oils like oregano, tea tree, lemon etc. I’ve tried things like Panadeine Forte and that helped, but took a while and didn’t help with urinary frequency.
- Nothing worked for me…
- I was prescribed Voltaren suppositories following a gynae procedure. I once tried that in desperation and it helped take the edge off a bladder pressure/back ache flare.
Pamela Jessen
ONE Item I’d Really Like to Try for Pain Relief is:
An Oska unit.
The Reason I Haven’t Tried It is Because:
The price is too expensive for me.
The Best Thing That’s Worked for My Own Pain Management so Far is:
A combination of medication and mindful meditation.
Taylor
ONE Item I’d Really Like to Try for Pain Relief is:
TENS machine or equivalent.
The Reason I Haven’t Tried It is Because:
Expensive trial, and I hate the idea of having so much waste from the packaging and eventually more electronic waste.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Remedial massage.
Monica Laipple of “Invisible Not Broken”
ONE Item I’d Really Like to Try for Pain Relief is:
H-Wave.
The Reason I Haven’t Tried It is Because:
$6K.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Physical Therapy and H-Wave at sessions there. Also like Quell a lot.
Any Other Comments You May Have:
Thank you for doing this!
Sheryl of “A Chronic Voice”
ONE Item I’d Really Like to Try for Pain Relief is:
Medical marijuana.
The Reason I Haven’t Tried It is Because:
It’s illegal in my country, Singapore, and will be for a long time I’m sure, even the topical CBD oil versions.
The Best Thing That’s Worked for My Own Pain Management so Far is:
Keeping stress levels to a minimum, as that’s my biggest trigger for flare ups. Otherwise, high dose steroids are the only thing that’s able to control the pain (although this comes at a mental cost). Nothing else works then, not even strong painkillers administered at the hospital.
Any Other Comments You May Have:
I don’t see how it’s any more harmful to try medical marijuana, compared to other types of painkillers or alternative therapies that are permitted here. Apart from pain, it may even be helpful for my seizures.
Thank you to everyone who contributed to this roundup! As you can see, many of us want pain relief, even though it may manifest in many forms. Chronic illness and pain management are complex and highly individual. I wish everyone with a chronic illness some pain relief this Christmas season!
*Disclaimer: This interview is meant for educational purposes, and is based on each person’s individual experiences and circumstances. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding new treatment protocols.
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I was surprised about so many of the UK bloggers wanting CBD oil, I thought I was all on my lonesome living in a place with so many restrictions on CBD, Cannabis etc. I can have CBD, but not the kind that has anything useful in it. Cannabis is banned, and will probably always be.
I’m curious about CBD as well, but for some reason feel quite nervous to try it given that I have MCAS. Perhaps I should ask my doctor for their opinion on whether it would be safe for me.
I tried CBD oil for about two months for hypermobility syndrome pain and it did absolutely nothing. The cure all didn’t cure anything sadly. Is there anything else that can be suggested? I’ve been put on various different painkillers from cocodamol to tramadol and nothing has helped at all.
Hi Catherine, that sucks 🙁 Though I read that it really depends on the strain and how it interacts with your own body as well. Here’s one of my favourite bloggers about it if you’re interested to find out more: https://www.ajourneythroughthefog.co.uk/
Sending good thoughts and gentle hugs.
What great questions and interesting answers. My vote is for going outside to be closer to the health benefits of trees. And exercise.
Hi Verla, thank you for sharing! Yes nature is wonderfully beneficial in so many ways, too!
This is really eye opening.
It was for me as well!
I would also like to try CBD oil. My doc things Cannabis might not be good with all my meds. But I would be willing to try CBD treatment which wouldn’t be as bad, I’d think
Yea I think mainly we just want to have another option to try, since most of what we have already doesn’t quite work either.
Thanks for the feature, Sheryl! Great round up and once again a very clear pattern emerges. I tried CBD oil for a week only though. Only thing I noticed was it made me sleep a lot. I know that weight or pressure relieves the aching in my legs, the diet has taken care of most of my other pain, so weighted blanket is really something I’m interested in trying. They’re just really expensive so I have to wait for a gift ?
Thanks for your contribution, Char! I tried a weighted blanket but sadly it did nothing for me, whether for aches or anxiety haha. But as we’re all different, who knows! 🙂 Hope you get one this year 😉
Gosh this post really puts things into perspective. I wish everyone the very best for this year and next and that they get some pain relief!
Thanks for your continuous support. Rachael! Wishing you a good year ahead too and happy holidays 🙂
I just wanted to add that TENS units are available on Amazon in the US and UK for fairly reasonable prices. Mine was $22 US, £29 UK. That said, I generally only use it for specific spots, say, low back or thigh. I haven’t found it helpful for my generalized muscle pain. If you’re in the US, Topricin makes a topical called Fibro Cream which I love for my worst areas during flares, my thighs, shoulders, and back.
Hi Amy, thanks for sharing! I have a cheap $10 TENS machine myself, but it doesn’t do much to relieve any pain, heh. Not sure if a more expensive one has any added functionality :p