Finding HopeSeeking 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.
Mental Health Update (March 2022)
Posted on March 19, 2022
TW: Mentions of self harm and suicidal thoughts.
It’s been a while since I did one of these updates and the last few months have been A LOT. An update is somewhat necessary, if only for blog cohesion. It’s all been pretty awful, hence all of my posts about medication: we’ve been desperately trying to get a handle on things. I’m not sure we have but there’s a natural point here, around medication and my upcoming trip to the US, so I figured now was probably the best time to do it…
The end of last year and beginning of this year was bad. Really, really bad. I was the most depressed I’ve ever been, self harming and suicidal. I’ve been suicidal in the past but never like this, never to this extent. It was awful but it was also kind of cozy and cotton wool-y, especially compared to what came next. I had a kind of anxiety-induced breakdown, something beyond and different to a meltdown, that just wrecked me. Like, it was so bad that I missed being suicidal. The anxiety was paralysing and the whole thing completely wrung me out. It was unbearable but it was probably the only thing that would’ve forced me onto the new medication – something I’d been resisting out of sheer exhaustion and hopelessness. But I couldn’t go on feeling like that. I was scared the medication would bury the stuff that needs dealing with and I still am but I couldn’t go on like that.
So I started taking Moclobemide but I was also taking Diazepam pretty consistently, given how bad my anxiety was. Things are better than they were – and I’m writing again, which is a good sign – but they’re still not great. I’m still struggling with a lot of stuff. I haven’t been able to go to therapy for a while now and I’m not sure when I’m going to be able to go back – that unexpected twist in the road certainly hasn’t helped. So I’m feeling kind of stuck in terms of how to move forward.
Physically, things haven’t been awesome either. My appetite hasn’t recovered much from the battering it took from the ADHD meds; I’m still not really eating but I am doing better than before so that’s something (the whole thing definitely hasn’t helped my already complicated relationship with food). And after a short break, my chronic pain is back with vengeance. It’s throughout my whole body but my arms, wrists, hands, and fingers in particular have been especially painful. I’m still waiting to hear back from the Pain Clinic. I haven’t written much about my experience with them; I guess I’ve kind of been waiting to have something to write about but so far, I haven’t received any proper support. They said they’d get back to me after their next team meeting but that was early November at the latest so I’m not exactly holding my breath. The Chronic Fatigue Service gave up on me – they literally told me my case was too complicated – and I don’t have high hopes about this experience either. I’ve been waiting for some sort of support for this pain since May 2020 and I know that the NHS have been overwhelmed but that is a really, really, really long time when you’re in pain.
My sleeping is better but still not great. The melatonin helped somewhat and I managed to wrestle my sleep cycle into something a bit more reasonable: rather than lying awake all night and then sleeping through the day, I am now at least sleeping mostly at night. But I’m incredibly tired all the time and I’m drowsy in the day again, just like I was when I was taking Phenelzine. I’ve picked up my Red Bull habit again – although not to quite the same degree (yet) – which I really never wanted to do again.
Between the sleepiness and the not feeling that much better, I’m not convinced by the Moclobemide. It’s pretty reasonable to assume – at this point – that MAOIs are the only antidepressants that help at all but as I said in my Moclobemide review, this level of better doesn’t feel like enough. I still don’t feel great; I don’t even really feel good. And I’m so sleepy, all the time. I don’t feel like it’s that much to ask for: to feel functional, to write songs, to have the capacity to feel good, to even be happy sometimes. Is that really more than I should hope for?
It’s been a long few months and it’s all left me feeling very raw. And, as excited as I am to get back to Nashville, I’m also terrified. The COVID risk aside, the whole world has been through this huge thing so how could going back not be different, feel different? It also just feels very soon to be out in the world for so much of every day when I still feel so… fragile, I guess. It’s like I’ve just started putting myself back together and I’m not ready for the Jenga tower to get toppled again, to start over. I don’t know if I have it in me. I just really hope – really, really hope – that everything goes as well as it can while I’m still getting my feet under me.
Finding Hope 