My Mobile First Aid Kit for Chronic Pain/Illness

Preparation is key when you are heading out for the day!

Screen Shot 2017-12-30 at 10.35.35 pm

The past couple of years have been big for me in terms of health. I finally received my formal diagnosis of Ehlers-Danlos Syndrome Type 3 (Hypermobility type, or H-EDS), and not long after, I got corrective knee surgery, something I’d waited on (and sometimes had to ignore), for the previous five years. Lately, I’ve been reflecting on these major events, but also on the small things that make daily life more ‘normal’.

Due to my increasing understanding of EDS these past few years, I have mixed emotions. I feel relief that I am making changes to prevent and maybe reverse any further injury or deterioration, but I also have concerns, and fear of what lies ahead. I can’t help but feel sad and angry that there are so many things I wish I’d known, or should have done even a couple, let alone five or 10 years ago.

Nevertheless, most of the time I do try to stay positive, and one of the things that has made a difference is something small, but that has significant impact. I pack a day kit of a few small items I can take with me, to help me through days when I am out, which take a bigger toll on my energy, and sometimes cause pain due to the extra exertion.

Some days, I don’t need it at all, but the nature of the illness is such that you will never know what will happen; maybe I turn a corner and dislocate my knee, or I pull my chair in at a restaurant and dislocate my thumb (both of which have happened), among many other things. If someone were to ask me a couple of years ago what I packed for a day out, I’d just tell them: a couple tablets of Panadeine, water, wallet and makeup.

Note: I’m in Australia, so this article mentions products found here, but I’ve tried to keep them general, in that you can find alternatives. Obviously everyone has different needs, but this is what I’ve found to be most helpful, especially as steps that complement each other, or ‘building a ladder’, as Martina Stawski of Simon & Martina (a Youtuber couple I’ve been binging – imagine my surprise when I found a video talking about her H-EDS!) put it. This article isn’t meant to be prescriptive, but more as a guide for you to make your own kit that suits you. I’m also modifying it myself and experimenting with bits and pieces depending on my needs, day to day, but this is my core group:

  • Daiso Cellulite Roller (AUD$2.80) – This works amazingly as a mobile ITB roller/massager. Mine gets extremely tight and pulls my kneecap to the outer side = more likely to sublux or dislocate, so when I do more activity than usual, I NEED to use this. I have quite a bit of trouble standing and walking, but for some reason cycling and gym work is much easier-I’m grateful just to be able to do activity and exercise in general, though. For something so simple and cheap, it’s a must-buy!

  • Lockeroom Pocket Physio Triangle (AUD$15) – You can get this from any physiotherapist, and it basically acts as a pressure point you can use, eg for tight Temporomandibular Joint or for deep-tissue pain in shoulders/neck
  • Magnesium Spray (AUD$20) – this may sting and itch sensitive skin, but it can help muscle aches. I was sceptical at first, but I do find if I’ve been lacking magnesium I get muscle cramps and spasms, so this is a good way to get it into the affected spot quickly
  • Futuro For Her Wrist Guard (AUD$30) – especially if you do a lot of computer work or your hands get stiff, this helps give some support to wrists and hands. I take the metal part out so I can sleep with it if I need to.
  • Oval 8 Finger Splints (~$8 each) – not gonna lie, these can be a bit uncomfortable at first with delicate skin, but I never realised until I wore them just how much I hyper-extended my fingers. You won’t be able to use these if you need to write (unless you can get away with writing like you’re 4 years old), but typing is fine. I’ve lost a few of these, so I suggest keeping them in a little bag/box when not in use!
  • Strapping/KT tape (large) with small scissors – For sprains and dislocations, having that extra support is essential – you can find tutorials on Youtube if you’re ever stuck with how best to use it. Buy the large tape, and if you need to use it for fingers or smaller joints, just cut the tape lengthways/half as required.
  • Brita Sports Filter Water Bottle (AUD$15) – there’s hard water in the taps where I live, so it’s nice to be able to fill up wherever. If I don’t drink at least 2L of water a day, I don’t feel very well, so this is extremely important. I’ve found it is the most sturdy filter bottle widely available in Australia, and I always look out for 30% off sale specials for the filters.
  • Deep Heat Cream (AUD$5) – first of all; if there was a perfume of Deep Heat, I’d be the number one customer in the world, second; this can help even just by distracting from acute pain with the coldy-hot sensation (via Methyl Salicylate – be careful if you have a sensitivity – I do, but for some reason, I find using this fine), and the smell (for me) is super comforting and refreshing
  • Omron TENS Unit (AUD$50) – Again, something at first I was sceptical of, but when I tried it, it can help with pain management. Unless you need to place it in an awkward area, these are nice and discreet, and you can adjust the intensity and type of pulse stimulation. TENS units are really expensive in Australia for some reason, but thankfully I was able to get a really nice unit from Amazon US for a fraction of the price. Lately, Aldi has a sale where their TENS machines are only ~$30!
  • Crystallised Ginger (AUD$4pk) – I get really nauseous due to certain foods, or if I don’t eat regularly enough, or if I am being driven somewhere, so having a tin of ginger on hand that I can chew has saved me from needing to go home early many times

Screen Shot 2017-12-30 at 9.59.19 pm

  • Couple blister packs of over-the-counter medication each (Mersyndol, Paracetamol, Panadeine Extra, Telfast, Sudafed). Ibuprofen (Neurofen) or Aspirin is not on the list as it causes a lot of issues to gut lining. The pain killers in the list generally don’t take away much pain, and only usually last for an hour or so, but are sometimes preferable than taking anything stronger or nothing at all. I’ve included antihistamines such as Telfast or decongestant (Sudafed), as I get awful sinus and migraines due to allergies/sensitivities that would mean my day was a write-off without. Best advice: follow the directions of each medication, such as taking them with food or not to mix them with certain other drugs.

I keep all of these in a clear case I can easily slot into my Anello backpack that is extremely handy, light and easy to carry.

Hope this post has been helpful!

Love,

Lo xx

An Official Diagnosis…

As I count down the days of the week left before my third knee surgery, I find myself in limbo once again.

 Today, I finally had my appointment with the Rheumatologist I’ve been waiting to see since I booked, maybe 4 months ago. It was underwhelming, to say the least. He had been recommended through an EDS forum as being one of the only people on the Gold Coast who could give an official diagnosis for EDS, especially Type 3 (Hypermobility – my type). I’ve seen countless doctors, physios, occupational therapists, chiropractors and podiatrists who all agree that I have HEDS, not least of all my orthopaedic surgeon who operated on me, my father and brother, but somehow they are all unable to give me that one elusive diagnosis. Only the rheumatologist or geneticist can (and there’s no gene for this type of EDS, although apparently they will still do the testing for ~$2K), and he….well, I’ll run through what happened.

First: he did the exact same physical test (Beighton score) that all practitioners have done on me, with one major exception: he did a bafflingly condensed version with no follow-up questions, despite having my entire medical history in front of him in writing, as well as knowing I’m about to have a third patellar stabilisation surgery on my knee. He basically had me pull my thumbs back to my arm (tick), hyperextend my elbows (tick), lightly touched my fingers a couple of times (??), asked me to touch the floor with my hands (tick) and seemed surprised that it was so easy, then had me lie on the table and touch my knee, tried weakly to make my legs hyper-extend (the one that has had two surgeries now doesn’t hyperextend for the exact reason I had the surgeries – something you’re supposed to count in the score), then made me lift my legs in the air and move them around slightly. After which he drew a stick figure of the supposed points of the score – one of which was in the groin, er, sorry, what point is that???? – and counted that I made 5/9 on the Beighton score. Every other person I’ve seen has confirmed I’m 8-9/9, but fine, I guess that still qualifies.

Then he said he’ll write a letter confirming I have Benign Joint Hypermobility Syndrome, aka Hypermobile Ehlers-Danlos Syndrome. Which…is not correct anymore, albeit in the controversial new diagnostic criteria, which has its own severe shortcomings. Oh, and for fibromyalgia; something I thought was difficult to diagnose in the first place. I really don’t care at this point if I have fibromyalgia or dysautonomia or Raynaud’s or whatever else in tandem with EDS, because although they may be difficult to deal with, the bane of my life is the dislocations I’ve had since literal birth (born with a dislocated hip) and subsequent daily pain and fatigue, deterioration of joints and the lack of management or belief by others in something that is clearly demonstrable. I’m not taking away the experience of others with these issues, however in my case, having had three major surgeries already in one area for this specific reason and most likely several others in the future, this, to me, is the most urgent and legitimate cause for any concern or want for diagnosis.

When I asked “Ok, so what now?”, having been told that seeing a rheumatologist is the be-all-and-end-all, he said I can take an anti-epileptic or antidepressants to help me sleep, however after some discussion I basically prescribed myself some Melatonin instead. He said I can do the most basic exercise, like hydrotherapy, pilates, and surprisingly yoga (a big no-no for hypermobility). If I want to get some kind of disability recognition or special consideration for uni, I have to go from a rheumatologist back down* to a physio for a physical examination. And that was it.

[*I don’t mean any disrespect here; physio has done me the most good out of anyone, barring my last knee surgery, I’m merely highlighting the fact that it was built up so much to see a Rheumatologist to get the ultimate help, and instead he directs me right back down to the first point of contact to make any kind of progress. ]

I don’t even know what to say right now. I’m not sure what I expected, but I thought at least there would be an “Okay, this is a clear case, let’s do a proper Brighton criteria to make sure, I’ll give you the proper diagnosis, and this is how we manage it and where we can go from here”. Not: “Umm…yeah…ok…so, you could do some yoga and take some supplements to sleep, ok? Thanks for coming in”.

Literally any other person, including occupational therapist, physio or GP could have diagnosed me (and have) in a fraction of the time, and for a fraction of the cost. But since they don’t have the title of Rheumatologist, even though they use the exact, and in this case more thorough, diagnostic criteria, there is absolutely no validity. It really feels like a system designed to keep you from getting the help you need and have overwhelming evidence for, for the arbitrary reasoning that seems to be the same as how the new criteria for Hypermobile Ehlers-Danlos was created in the first place, and which has been denounced by pretty much everyone in the community, minus a handful of people.

I empathise with everyone who has gone through this process, and worse. One of the most debilitating things about EDS is not just the chronic pain from dislocations that result in anxiety, depression and other systemic issues, but the fact that as an ‘invisible illness’, doctors tend to diagnose such conditions in a lackadaisical, haphazard manner. Even the Ehlers-Danlos Society itself doesn’t send a clear message to a majority of its sufferers. When your main advocacy group, and the medical community don’t understand the issue enough, then what hope do we have in getting the general population to understand our plight?