Finding HopeMy Experience With A TENS Machine
Posted on July 22, 2023
So, for those of you who don’t know, a TENS (Transcutaneous Electrical Nerve Stimulation) machine is a little gadget that you can use for pain relief. You attach little electrodes to your skin around the area where you have pain and although no one seems to know quite how it works – whether it blocks pain signals before they can reach your brain, whether they stimulate the production of endorphins, both, or something else entirely – the pain, in my experience at least, instantly starts to dissipate. As a chronic pain sufferer, I wish I’d known about this earlier so I thought I’d share my experience in case it’s useful to someone else, someone else who’s in pain.
A while ago, I seriously messed up my back. I don’t know what happened exactly, to be honest: I was sitting on the ground, playing with a neighbour’s puppies and I was getting a little stiff without anything to support my back but everything was basically fine. Then I tried to get up and the pain in my back was so bad that I was momentarily paralysed; it was so painful that I couldn’t think, couldn’t remember how to move even if I wanted to. When the shock of it wore off, I figured that sitting without any support had just resulted in more pain than usual but with some painkillers and time on my heat pad, I’d be fine. But several hours later, I still thought I would scream or throw up or collapse if I so much as twisted slightly. It was hideous.
After several days – and several moments of spasm-like pain that had me sobbing on the floor, unable to move – there was still no improvement. I was taking the strongest over-the-counter painkillers, as well as alternating hot and cold, but none of it was helping beyond the odd moment of relief. My sleep was also terrible because the pain woke me up every time I tried to turn over. I’d decided to give it the weekend before going to the doctor between encouragement from both my Mum and my therapist, I ended up going as soon as we could get an appointment. The doctor was convinced of my pain immediately, give the way I hobbled into the room. He was great, prescribing medication for a few weeks before reassessing; the strongest he could give me was Co-codamol and Diclofenac with Omeprazole to protect my stomach (his first instinct had been Tramadol but that would’ve interacted with my antidepressant, Phenelzine, which I’d predicted before he’d even thought of it – Phenelzine can be a real pain sometimes) and wanted me to come back if I was still struggling in a few weeks. The thought nearly made me cry; my history with medication isn’t good and I wasn’t feeling any more optimistic about this combination. But I agreed to do it: it was the best I was going to get and I had things that I needed and desperately wanted to do.
As I’d predicted, they didn’t really work. I had a little relief around the peak of their effectiveness but most of the time, I was still in so much pain that I could barely move: whimpering, crying, nauseous… I had to keep my movement extremely limited but between the painkillers and a back brace that I bought out of desperation, I started to do a few things again, things I was desperate to do and things that couldn’t be rescheduled; it wasn’t the most comfortable thing ever but the support did allow me to do a bit more and live a life not confined to the sofa, plus I could finally take a deep breath again (sneezing was fucking awful, I kid you not).
So even though I had a couple of coping mechanisms, I was still in a lot of pain – too much pain. I could barely do anything. But then I spoke to a physiotherapist we know and she suggested a TENS machine. That was when everything changed, about three weeks after the pain started. We attached it to my back, turned it on, and once I got the settings right, the pain seemed to shift, like it was breaking up in my muscles. I almost fell over with sheer relief. And after having it on for a while, the pain was gone: I went from barely able to move to walking around and managing a limited number of events. And I wasn’t constantly exhausted – or in tears all the time – from being in pain. It wasn’t perfect though and the pain returned when I wasn’t attached to it but it did grant me periods of significant relief and for that, I am definitely grateful. The sensations from the different modes – mine has eight and then you can adjust the intensity – can be really weird and not always comfortable and, in my experience at least, the electrodes need replacing more often than I’d like (when in constant pain, you do find yourself going through them quickly and that can get expensive), plus mine is a bit flimsy (one of the electrode wires broke this morning but fortunately it was the part that you replace anyway, not the permanent part). Having said that, it’s been fantastic for relieving my pain and, given how often I struggle with chronic pain, it will definitely become a staple in my toolbox. Although when it needs replacing, I think I’ll get a more upmarket one now that I know how effective it is.
About six weeks after the pain began, with the help of the TENS machine and sporadic use of painkillers, I’m basically functional again although I do struggle after a long day or standing or walking (by my standards at least) – I attach it to my back or various points on my legs and I recover so much faster than I did before; it’s definitely still coming in handy. But rather than using it multiple times a day, I’m only using it every few days so whatever happened is definitely healing and I should be back to normal soon. I’ve even managed to start some gentle hydrotherapy; I had to be careful not to overexert myself and it had been a pretty long time since I’d been in the pool so I was a bit stiff and sore afterwards but painkillers and the TENS machine had it completely covered. So I’m not sure that this will be a problem much longer, which will be a huge, huge relief.
So while it does have it’s disadvantages, I’m definitely a fan. It’s a pretty simple system, it’s versatile, and it’s very effective. As I said, it will be a constant presence in my pain management toolbox from now on.
So, there is the story of my latest chronic pain episode and the TENS machine that rescued me. Hopefully, this will give you a glimpse into what using one for pain is like and whether it’s something that might be helpful to you – although, as always, consult a professional first because there are some conditions that react badly to its effects – please always make sure you’re safe.
Seeking Help For Chronic Pain (Year One)
Posted on July 8, 2023
After the Hypermobile Ehlers-Danlos Syndrome diagnosis, one of my many referrals was to the Pain Clinic (something I didn’t know existed). At that point, I’d been in pain for about eight months and the fact that this thing even existed had me feeling optimistic for the first time in ages. But then the weeks started passing and that feeling faded. In that time, I believe there were a number of other referrals from the Physiotherapy and Occupational Therapy services so I don’t know how many times they actually had requests about me but someone finally got in touch five months after the initial referral.
This post spans from May 2021 to April 2022.
MAY 2021
The initial contact was over the phone. We got a call from one of the Pain Clinic team and we had a long conversation; we were on the phone for an hour. She asked me loads of questions and got a detailed history; she also talked me through what the Pain Clinic does and what they can provide. She went away to go over the notes she’d made and figure out what a good next step would be and we had a chance to think about what might be the right path for me.
JULY 2021
Seven weeks after the first call, we got a second call from a different woman; apparently she had a different background to the first woman we’d spoken with and had a load of different questions. We spent another hour on the phone and before we hung up, she told us that she would be taking her notes to the team (which is made up of a group of different clinicians and therapists) and that they would get back to me with their suggestions.
Two weeks later, she called back and, after some discussion, we decided that seeing a pain psychologist was the best way forward – understanding pain, understanding chronic pain, figuring out the triggers, learning how to manage it, and so on – and she set up the first of the six sessions.
AUGUST 2021
The first session was an hour long video call. We’d somehow missed the information packet that the pain psychologist had sent but she was kind enough to go through a lot of the information – a basic understanding of pain – during the session. It was okay but it was very focussed on managing pain, which felt incredibly frustrating: I was fine until May 2020 and then suddenly I was in pain and at no point had anyone stopped and asked why and I want to know why. But no one seems interested in figuring out the why. I got very upset: I spend my whole life just managing things. I don’t even really feel like a person anymore, just a collection of problems that need managing that leave me no space or energy for actually living. The call ended in tears with me curled up in a depressed ball on the sofa.
Given how much the appointment had taken out of me, we decided that it was just too much while I was in the final stretch of my Masters, which the psychologist was really supportive of, and we arranged to start again when it was over so that I could really make the most of the sessions.
OCTOBER 2021
I had my second session five weeks after I finished my Masters (I was completely exhausted from the final semester and, with my Granny’s death, it took me a while to find my feet again). It was mostly a catch up about how my pain had been since the first session; we talked about how constant it had been (just sometimes better, sometimes worse), how it doesn’t seem to be triggered by anything specific. I got so distressed just talking about it that the psychologist suggested that we talk to the advanced practitioner for more insight into hEDS related pain. She said she’d talk to their team and recommended I talk to my GP about a better pain medication. We, again, agreed to pause the sessions until we had some clarity on those two things. I still haven’t found a pain medication that works reliably but it wasn’t long before we got a letter for an appointment with the advanced practitioner.
NOVEMBER 2021
At the beginning of November, I had the appointment with the advanced practitioner. In hindsight, it was probably doomed from the start, considering how unwell I was having just started the ADHD meds – I had to stand outside for a good ten minutes trying to get the nausea under control. And then, just because things had to get worse, I got hit by the electric shock like pain in my back right as the appointment was starting; I could barely hear what everyone was saying, the pain was so debilitating.
As it turns out, there had been some sort of confusion or miscommunication because the two doctors were under the impression that they were showing me some physio-like exercises rather than give me guidance about hEDS related pain as I had discussed with the pain psychologist. One of them just kept talking about all of the “ingredients” of pain – like diet, sleep, exercises, medication, levels of anxiety, emotional state, and so on – and after a while, I just couldn’t keep my mouth shut. I was upset, in pain, and feeling so sick; I just couldn’t listen to another person give me vague advice without telling me how to actually apply these things to my life with all of my problems. And, on top of that, I was sick of everyone dodging my questions: why would this pain just start and why is ‘management’ the only thing being talked about? Why is no one interested in finding out why it started and whether it can be fixed? When the pain started, the only thing that had changed was my anxiety over the pandemic and it’s not like I was the only person who was experiencing that. So why did it start? If it can just appear, what’s to say it can’t disappear again if I do the right things (which obviously relies on me knowing what the right things are)?
Eventually this doctor gave me a somewhat murky explanation: that the trauma of the autistic challenges and the anxiety relating to the pandemic, compounded by the de-conditioning of the stabilising muscle in the early months of the pandemic, has resulted in the pain I’ve been experiencing. I’m not convinced by this but it’s the closest thing to an explanation that I’ve received so far. Anyway, they said that they’d take my case to their multi-disciplinary meeting and see what the suggestions were. I’ll take what I can get but I didn’t have a lot of hope: the last time I was in a similar situation, the Chronic Fatigue Service told me my case was too complicated and then just abandoned me. I’ve also had NHS doctors tell me that the NHS can’t help me and that I should go private – like that’s the automatic next step. They do know how expensive private healthcare is, right? Particularly if you have a chronic condition? So I did not leave that appointment feeling optimistic.
Later that month, we got a letter informing us that the original referral to the Pain Clinic from December 2020 had just gone through. Eleven months that took. I’m trying to be grateful that one of the other referrals went through faster but it was hard when it felt like we hadn’t made any progress at all.
APRIL 2022
The pain had reduced some by the end of 2021 but it flared up again (mostly in my hips and lower legs) in early February, which was likely exacerbated by my lack of movement while struggling with the effects of the ADHD meds – extreme nausea, depression, insomnia – and therefore not swimming. Things were better for a while – between more daily movement and starting hydrotherapy – but then it flared up again in late April, with awful pain in my elbows, arms, and hands.
When I realised how long this post was getting, I decided to split it up by year (yeah, because the whole process took actual years). This is the first instalment from Spring 2021 to Spring 2022. The next part will be up soon.
More Tips For Travelling As An Autistic Person
Posted on June 10, 2023
Back in 2018, I wrote a post about travelling as an autistic person and my personal tips for making it smoother and less stressful and anxiety-inducing. In that post, I included:
- Plan ahead
- Speak to a travel agent
- Choose your accommodation carefully
- Write a list of everything you’ll need and have someone check it
- Pack an emergency kit in your carry on baggage
- Bring your own food
- Prepare specifically for the flight
- Build in time out and don’t feel guilty for it
I still stand by all of these strategies but since then, having travelled more and gained more experience (apart from the lockdown and pandemic times – the latter of which we are arguably still in but obviously travel is now more possible for many, many people), I have more thoughts that I thought might be helpful to share.
FIND A GOOD TRAVEL AGENT – I wrote about talking to a travel agent last time but I wanted to share my personal experience with our travel agent, a guy we first met when we travelled to the US in 2016. Since then, we’ve booked every trip we’ve taken with his help – we go to him for everything – and developed a solid relationship. It really helps, I think, that he has a working knowledge and understanding of Autism so, even though he didn’t know me and my struggles personally, he picked up what I could and couldn’t handle very quickly, which has made things so much smoother than they might’ve been otherwise. He always goes above and beyond for us, something I would attribute to the working relationship we’ve built with him, and I so, so appreciate it.
TAKE INSPIRATION FROM YOUR MOST EXTREME NEEDS WHEN YOU PACK – It’s easy to optimistically assume that you’ll have a normal day every day you’re away but that’s not only unlikely because our minds and bodies don’t cooperate just because we want them to but also because the stress and anxiety of travelling and being in a new, unfamiliar place can do a number on us. I always find being away from home for more than a few days incredibly stressful, which can screw up my energy, my pain, my anxiety, my sensory issues… So packing with bad days in mind is probably a good idea; I’ve started carrying my heat pad (for pain), my joint supports (which I don’t always need but, of course, always seem to need when I’ve left them at home), a number of different fidget toys, medication for migraines (not a super common occurrence but debilitating when they do happen) and so on…
LEARN SOME BASIC PHRASES – If you’re planning to go somewhere where the language is different to that of your home country, it’s definitely worth learning at least a few common phrases. I know this is often considered to be common courtesy and I don’t disagree but when you have a lot of health stuff to deal with or get really overwhelmed in new environments, it’s not that simple; with all of your other preparations, it can just slip down the priority list and then off the list altogether. I recently went to Germany and between the ridiculously long hours trying to get everything done before I left and then the total overwhelm when I got there, I somehow didn’t clock that I didn’t speak any German until a couple of days in. How bizarre is that?! Then, of course, I panicked and did my best to speed learn words and phrases like, “Yes, please,” “No, thank you,” “English please,” “Excuse me,” and “I’m sorry.” Fortunately for me, German isn’t completely alien and the spellings and pronunciations – at least for the simple stuff – are relatively close, or at least they felt that way in my brain. So I picked those up easily, which was a relief. I think that having some language can really reduce your anxiety because you don’t feel so lost (and potentially helpless) and it makes moving around and engaging with where you are a little easier.
ASSISTANCE SERVICES AT THE AIRPORT – I’ve now done multiple trips through airports where we’ve arranged for the assistance services to help us out. So now I get wheeled (in a wheelchair or one of those electric buggies) from check out to not just the gate but down the gangplank to the actual plane. Because I struggle with standing and walking for extended periods of time, this has not only reduced both my pain and fatigue, it’s also reduced my anxiety about the time it takes and the recovery time I’ll need later. Apart from a few mix ups (uncommon but it has happened), they’ve been super efficient and very nice. I’ve found a couple of them to be a bit intimidating but I think that’s just because they’re utterly focussed on the job (and the next one and the next one); no one has ever been anything but polite and even funny. On my recent trip to Germany, one of the women was really, really nice and we had a good laugh despite the language hurdles to navigate. The one confusion that I’ve experienced is that, at some airports (and always in the US), they operate on a tip system but no one’s ever told us that one way or the other. Maybe it’s the straightforward, autistic approach to things but, to me, a service provided by the airport implies that the airport pays them for the work they’re doing but clearly not. So that did take me by surprise and I haven’t always been prepared for that, financially or emotionally.
IF YOU’RE TRAVELLING FOR A SPECIFIC EVENT, FAMILIARISE YOURSELF WITH WHERE YOU ARE AND WHERE YOU NEED TO BE – If you’re travelling for an event like a wedding or a birthday, it’s well worth doing things like checking out and practising the route (or routes you’ll have to travel) so that you know how to get where you’re going and how long it will take. You don’t want to be stressing about being late or getting lost on the important day itself. And if you have to let go of everything else just to make sure that you can attend and engage with the event you’re there for, then that’s what you need to do; it’s hard not to feel guilty or upset about not ‘taking advantage’ of the opportunities that travelling has presented you with but most likely, if you’ve travelled for a particular event, it’s really important to you and has to be your priority. Chances are that you’ll feel better for putting it first.
HYDRATE – If I have learned anything over the last few years, it is how important it is to stay hydrated. We all know this, of course – we’re told often enough that none of us are drinking enough water – but autistic individuals often struggle with it specifically due to problems with our interoception (plus, thirst signals are generally weaker than other internal signals, making them harder to recognise). Being dehydrated can make everything so much harder, causing headaches and exhaustion to name a few, and when you’re away in an unfamiliar place, that’s the last thing you want.
IF YOU HAVE TO GO HOME EARLY, THAT’S OKAY – Sometimes shit happens and plans have to change. And that has to be okay. Whether it’s your physical health, your mental health, something going on at home, sometimes you just have to figure out how to accept the need for change and go home. Sometimes it’s a case of choosing the ‘lesser of two evils’ – staying is hard but so is leaving – and making the choice that feels the most right, even if both of them feel wrong to a certain extent. I usually need some time to come to terms with what the right decision is but then, once I know what I need to do, I just have to figure out how to make it happen.
Friedrichshafen in Germany: Lake Constance (known as Bodensee in German) and some gorgeous flowers I saw. (x)
As always, I feel sure that I’ve missed some. But hopefully these will be somewhat helpful to somebody. If any of you guys have any tips you’d like to share, please stick them in the comments!
Finding Hope 