Seeking Help For Chronic Pain (Year Two)

TW: Mentions of being suicidal. 

Year two of dealing with chronic pain. Since it’s Bone and Joint Week, I thought it seemed timely to update this series, although hEDS isn’t bone related. But whatever. I needed to post this at some point and my joints hurt so this seemed as good a time as ever.

Unfortunately, very little changed during the second year. I was incredibly depressed, to the point where I was periods of being consistently suicidal, so I wasn’t capable of much. But we were also waiting for the Pain Clinic to get in touch as they’d promised to.

This post spans from April 2022 to March 2023.


OCTOBER 2022

After finally getting the referral to the NHS Hydrotherapy Department in December 2021, I tried to work that into my routine to get some exercise, strengthen my painful joints, and just improve my quality of living. It was pretty hit and miss for a while (as my post about it reflects) but around August, I found a pool that allowed me to do all of the assigned exercises and managed to work out a schedule. From that point on, I was going at least twice a week, if not more, and I could really feel the difference.

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I wasn’t pain-free by any stretch of the imagination though; I was in enough pain to significantly disrupt my life at least 50% of the time (and a lot of the time it was still there, even if it wasn’t upsetting my day-to-day life). I was getting stronger, with more stability, but still with no word from the Pain Clinic on how to manage or, dear god, get rid of the pain.


Into 2023 and we still hadn’t heard anything. I was working hard at hydro and I could feel the difference – I was stronger and I enjoyed the exercise – but I was still in pain a lot of the time. We’d asked my GP to chase up the Pain Clinic but not heard anything from either of them.

2022 in Review

TW: Mentions of depression and suicidal thoughts.

This may be the hardest post I’ve ever tried to write. I did seriously consider abandoning it but something in me kept me from doing that; I don’t know what or why. Everything I feel at the moment, and for the last year, (even when I’m feeling nothing) is so overwhelming that it’s very hard to see straight, to think straight. But I do know, without a shred of doubt, that this has been the worst year of my life, my depression as devastating as a drought. It sounds dramatic but the metaphor feels accurate. It’s hard to write about but, for some reason, I’m still trying. Here’s my best attempt to sum up 2022. 


In the past, I’ve separated the year into chapters of sorts but that’s hard to do with this year. For the first half of the year, I was on medication (first ADHD meds – which fucked up my relationships with food and sleep in a way that I’m still struggling with – and then antidepressants) but I was so depressed and suicidal that I had to come off them. But things haven’t improved since then. I’m still depressed and consistently suicidal, overwhelmed by anxiety; it’s beyond miserable. (This is partly why I dislike – and therefore haven’t been – writing about it, because I just feel like I’m complaining, even when I’m simply stating facts.) On the worst days, I feel like there is no joy to be found in the world, and on the best days, the joy to be found can’t possibly outweigh the bad. And there’s just so much bad. I miss feeling safe. I feel like, somewhere along the way, something in me was irreparably broken and there’s no coming back from that, not properly. I miss who I used to be. I miss who I thought I would be. And I’m just so tired: tired of feeling this way, tired of trying so hard, tired of not knowing what to do, tired of tearing open my chest multiple times a week at therapy and feeling like I’m only making things worse. Like they’ll never get better. Like there’s no point trying to get better because there’s nothing worth getting better for. I feel like as deep as I reach for the words to describe how I feel, they’re never enough; that agony that comes with feeling like the world is just too difficult and painful to live in, I’m not sure that that’s something you can truly understand if you haven’t experienced it. I’m not sure you can understand it unless you’re in it, and maybe not even then. This year has been a war, and one I didn’t sign up for. 

Looking back through my photos, I can see that, objectively speaking, good things did happen: I got to spend time with people I love, I saw beautiful art and music, I cuddled with my cats…

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I don’t want to diminish those moments but they very much feel like the odd, precarious stepping stones across an ocean (I know, my metaphors are all over the place in this post). They were good things but they were fighting to be heard through all the noise of the bad. It’s like what I said in my Grateful post this year: I can know that they were good even if I can’t feel them in a way I could eighteen months ago. And it’s hard and messy because the good also reminds me of the bad, of the feeling broken, of the things that feel impossible, of the ever-present presence that is my depression. It’s also hard to talk about – the good things existing amongst the suicidal thoughts – because for each understanding response, there are so many negative, judgemental ones. 

I don’t know what tomorrow brings. I don’t know what I want it to. I didn’t want this year. I didn’t expect to still be here and I’m not happy or pleased or grateful for that. I feel pathetic and stupid and cowardly; I feel broken beyond repair. I feel frozen, overwhelmed by all of these big feelings. If feelings could kill you, I think these would have. 


I really have no idea if I’ve managed to accurately capture my feelings about this year; all of these feelings are so big and overwhelming that it’s hard to really know anything. It’s like trying to find your way home in a blizzard. I don’t have a neat and tidy end to this post either. This is just how things are. 

Trying Tranylcypromine

TW: Mentions of suicidal thoughts and negative thoughts about food. 

Back in May and June of this year, I tried another MAOI antidepressant, Tranylcypromine; it actually works a bit differently to the other MAOIs I’ve tried, like Phenelzine and Moclobemide, so I was hopeful that it would be the best of those and maybe even more. This one was a tricky one to get because it’s so expensive (a month’s supply is £300 – everyone I’ve talked to about it has asked if it’s made of gold, which made me laugh because that was my exact reaction) but fortunately, I have a great psychiatrist and a great GP who made it possible. I wasn’t in a great place but I was cautiously optimistic that this one would be better.

As is always the case with posts about medication, this is just my experience. Please don’t start, change, or stop taking any medications without the advice and support of a medical professional. 


WEEK 1 (10mg Once Daily)

I was still struggling to sleep, not getting to sleep until after three in the morning, and then I’d sleep into the afternoons. I struggled to get up (probably due to both physical tiredness and my bad headspace) and doing pretty much anything – my week involved a stressful dentist appointment, multiple swims and hydro sessions, a meltdown, and more – had me falling asleep on the sofa as soon as I got home. And I was tired and sleepy all day, regardless of the hour.

I was very nauseous all the time and when I actually managed food, it wasn’t satisfying at all. So eating was tough.

The depression was solid, like it was darkening the edges of my vision at all times. I was also very anxious most days and I was really struggling with my concentration.

The chronic pain that had flared up wasn’t great but it was getting better. It was less than it had been and for that I was grateful.

WEEK 2

My sleep continued to be a struggle. During the day, I was tired and sleepy (and fell asleep on the sofa several times despite how wonky my sleep schedule was) but then I just couldn’t sleep at night. My brain kept going to scary places and nothing that’s helped in the past worked. I usually fell asleep sometime between three and five am and then I’d struggle awake in the early afternoon. I couldn’t shift it, no matter how hard I tried or what I did.

I was too depressed to do anything. I was completely paralysed by it. I was depressed and anxious and restless. I was struggling to concentrate. I felt overwhelmed and lost and hopeless. I was having suicidal thoughts again. I was desperate to distract myself from my thoughts. I nearly had another meltdown. I felt like something vital in me had been broken. I still do.

WEEK 3

Sleep remained the bane of my existence. I wasn’t getting to sleep until around five in the morning and one night I didn’t sleep at all (that was a particularly miserable day). I’d manage to wake up around three or so but feel sleepy straight away. And I was tired all day everyday but then I’d go to bed and just lie there, so anxious that my chest felt tight, so anxious that I couldn’t breathe; I just couldn’t calm my brain down.

I was still  very depressed. Nothing helped, nothing made me less depressed, or made me feel better. It was so bad that I just couldn’t engage with anything; I felt trapped with my thoughts and it was horrible. And feeling like that, I didn’t know what to do with myself. I just felt like crying and screaming. I was also really anxious. And I just felt hopeless, my suicidal thoughts a consistent buzz in the background. My OCD also became more difficult to manage; the compulsions felt even more suffocating than usual.

Food was also really stressing me out. I wasn’t enjoying it and it doesn’t seem to give me any energy, which – in my head – meant that I was just gaining weight and the thought of that made me very anxious. I’ve never talked to anyone about my anxieties around food and body image because it always feels like there are more pressing problems. Sometimes it’s easy to ignore and sometimes it’s all I can think about and this was the latter.

WEEK 4 (+ Zolpidem)

After so much disrupted sleep, my GP prescribed me Zolpidem to hopefully get a handle on it. As a result, my sleep cycle became very erratic: some nights I barely slept at all, some nights I slept for more than thirteen hours, some nights I slept at a normal time, some nights it made no sense at all. But regardless of that, I was still tired and drained and sleepy during the day.

I was still feeling awful. I was depressed and anxious with almost constant suicidal thoughts. I felt useless and pathetic and I couldn’t stop crying. I just completely overwhelmed and utterly hopeless. Even the most basic engagement with the world was excruciating but hiding away hurt too. I ended up retreating from everyone, both in real life and over social media. As I said, I just felt completely overwhelmed and paralysed.


After a rough session with my psychiatrist, I came off the Tranylcypromine. That was fairly easy, all things considered, and I did feel better. Well, ‘less terrible’ is probably more accurate: I was less sleepy, which made things easier, and I had periods where it all felt a little less oppressive. I also got better at blocking the world out, although I’m not sure that’s done me in favours long term.

As far as my psychiatrist is concerned, my options now are to either start taking Phenelzine again – the one antidepressant that has helped – or to look at other options. My anxiety around going back to Phenelzine is that I will just end up here again, when the side effects become too much to handle. So it feels like searching for another option is inevitable (but then I’m scared that another option won’t work and I should just accept what the Phenelzine can do but… And round and round we go). I have been referred to the Treatment Resistant Depression clinic (something I had no idea existed) to discuss what those other options are and we are also talking to a private clinic, trying to get as much information as possible. But, as hard as I try, I don’t know what to do next. I don’t know what the right choice is and no one else seems to know either.