Feel so alone and ashamed - please, I need advice

[thisishumiliating]

Putting this in chat as the health boards are pretty quiet and the chances of someone seeing this who can help or understand might be slim. I name-changed because I’m so ashamed.

I have a condition that causes chronic pain and was being emotionally, mentally and financially abused by my ex H, and the doctors just kept increasing and increasing my painkillers to roughly the level needed to sedate an elephant - I think I was probably using it for emotional as well as physical numbness.

I moved to the UK, and the NHS saved my life and I’m incredibly grateful; it’s just that part of that involves the fact that I have been trying to decrease, with a lot of really kind NHS support, from a prescribed equivalent dose of 360+mg of morphine a day (150mcg fentanyl). I managed to get it down to the equivalent of about 100mg, and for medical reasons (my condition causes fevers and the patches were no longer safe - they can’t have heat “applied” to them), I had to make a very sudden and big drop to the equivalent of about 20-40mg morphine a day. I want to be well, I want to have a good life with my husband, but it feels like I’ll never get past this. My back hurts so badly that I can’t poop and I’m crying all day. If there is anyone, anyone out there at all, that can help me; any advice at all. I have therapy Thursday, but I just need to know today that this won’t last forever.

I just told the pain nurse today that it was going fine; I didn’t realize the real withdrawals hadn’t kicked in yet. They started about 3pm today. I feel like I’m having the flu, COVID, and a mental breakdown all at once and work needs something done tonight.

How did it go with getting out of the loo in time OP? Did you make it there on time? Hopefully things calmed down in that respect. You’ve had a bloody tough day and you’ve got through it, so in the least patronising way possible, you should be championing yourself for that, well done you!

@WilfredsPies I am very, VERY fortunate that the Co-op near me is on UberEats, open 24 hours, and had Tena pants that fit. I wore them to my appointment which ended up being a bit humiliating because the bloody doctor saw them out the tops of my trousers (wore baggy pants). It’s like my Season of Humiliation - I think after this, it’s veneration for me and then canonization? 😂 A friend went with me and he honestly saved my arse; I was in no shape to get myself home after 3 and a half fucking hours (1 hour to get there; 2.5 hours for appointment, physical exam, pathergy test, 9 vials of blood, and full new X-rays, and an MRI being scheduled since they need new images of my sacroiliac and hip socket damage). I spent all of yesterday in horrific pain and swollen like a balloon (the whole pathergy test arm is extra swollen for some reason - no clue why as it’s not part of the test, which is just supposed to show the level of inflammation caused by four deep pricks with a sterile needle; negative is no reaction, and a positive reaction is when pustules form at each prick location^ - you email photos at 24 and 48 hours, half the spots are positive and half are negative).

I’m starting to feel better emotionally about all this (this thread and therapy both helped a lot) but I feel even worse physically. I bought a copy of the third edition of Wilhelm’s translation of the I Ching, with foreword by Jung, and “The Mysterious Affair at Styles” (first Poirot book - I’ve never read it before!) and in bed reading them and listening to vapor soul on Spotify (I’m aware “vapour soul” is a ridiculous term, but Spotify invented it for the genre - it’s just the evolution of trip-hop, if you can imagine adding a bit of rock and folk music to trip-hop; sort of where Of Monsters and Men and Bob Dylan meet Massive Attack).

@DoYouWantHalfThisSandwich I saw your “support” so I’m guessing you didn’t feel up to typing - I really hope your appointment went well and you’re at home taking it easy; please know I’m sending you good thoughts. Believe me, I know that when it takes two hours to get up in the morning, it takes two days to recover from two hours trying to be “normal” out in the world.

^ This refers to the pathergy test and not the current whereabouts of anyone’s ex DH 😂

I don't have anything like your daily pain condition but I do suffer from frequent,.at times horrific, migraines, pain in my eyes from damage to them years ago, and frequent back pain, shoulder pain, hip pain, and now I'm developing nerve conditions. I've physically really declined in the last few years, I used to be so strong and fit just a few years ago.

I guess I'm lucky though that as it isn't a daily thing moderate sporadic doses of painkillers work without me building too much tolerance.

You asked what would be a good thing to watch. I surprisingly, to myself, anyway, really enjoyed watching the lord of the rings trilogy in bits and pieces and it took me a good many days to get through it all

@ThatFairy I know this isn’t related to what you said directly but, have people not really respected your pain? Or minimized it? Because with pain, there’s no real measure - it’s 100% subjective based on everything from our hair colour to our childhood trauma. It sounds to me like you live with a lot of pain. I think it’s very brave of you to be so, so wise about taking painkillers only at the time you need them with everything we know about their abilities to effect neurotransmitters and things; building up a tolerance when you have pain 24/7 still “feels like”/maybe-is almost the easiest mistake in the world to make.

Anyway, sorry, all of that is just to say that I understand, about the pain. About feeling so much weaker than you used to. I made a lot of bad decisions before I got to this level of fentanyl; yes, my doctors prescribed it, but I should have spoken up a lot earlier, and I’m working on the reasons why I didn’t in therapy.

Lord of the Rings is a great suggestion; thanks.

@thisishumiliating yes, the NHS would only offer me 30/500 co- codamol even when I was in agony with my back and headaches and it really didn't help very much. I turned to private healthcare, it's expensive, but worth it. I have had times where I've been worried about my opiate use where I was enjoying it and using it too often, but I stepped back when I realized I might be developing a problem. In fact it's a continuous thing to keep myself in check. I think I could have easily fallen into addiction at certain times had I not forced myself to take breaks. I'm doing much better now and I'm more careful with them in general. I suppose as well it's self- limiting because of how expensive opiates are.

I do live with a lot of pain, it's just genetic bad luck maybe. I had the headaches all my life since I was about 13, and the back pain started when I was pregnant and working a little too far on I believe. I think the nerve thing could be related to my high blood sugar- I've read that diabetes can cause the immune system to attack the nerves or something like that. I'm not too sure, I'm still researching. My left leg is currently just numb, no pain, it's been like this for a week.

I've had sciatica but nothing like this it's very weird feeling. I scratch my leg and can't feel my nail against the skin properly. I saw a doctor and she told me I could end up with a permanent nerve injury to my leg and foot that would affect my ability to walk if I strain or bend the leg too much, so I'm just resting as much as I can at the moment, but yeah I'm really worried about that or getting sciatica like symptoms flaring up again and perhaps being worse than before

I feel like an old woman !

Afternoon @thisishumiliating & all posters! Sorry I didn’t come back to the thread sooner - I read through it on Saturday, & thought I’d reply when I had more time…..& totally forgot. Friday’s appointment went really well! A new type of physio to help manage my pain, & I was sceptical to start. But it was fab! Paid for it over the weekend though with the post-physio aches & pains! How are you doing today @thisishumiliating 💐

OP, I was in a very very similar situation about 5 years ago. It was utterly miserable, so I really feel your pain. It was unbelievably frustrating to keep getting fobbed off by medical professionals who believed I was exaggerating my back pain, didn’t try hard enough to find the cause, or just shrugged and told me I’d have to put up with it. Their answer was also to keep increasing the dose of painkillers till I was a zombie. I got addicted to them and it was awful. I eventually went private with the help of various family members who lent me the money and I finally found a doctor who would properly investigate. I had an operation that I wouldn’t have got on the NHS and it drastically improved my pain. I also went to a local drug & alcohol addiction service who were great, and very experienced with managing withdrawals. There was no waiting list for this. They were able to taper me off the meds very slowly and I avoided withdrawals. They also provided a lot of emotional support and were able to prescribe a different, non-opiate medication to manage (my now much lower levels) of pain. When the pain improved I had to be super strict about doing the daily physio exercises the doctor had given me and I started doing Pilates which really helped. Once my back was a bit stronger I started strength training and lifting weights. This has been life-changing for me. My core and back muscles are now really strong and they support my back, which reduces pain and protects it from re-injury. Before this, if I even carried a light back pack for a couple of minutes my back would ache for days. Large, Plug-in heat pads are also good for short-term relief. I’m now pretty much pain free and drug free (apart from the long-term low dose of painkillers prescribed by the addiction clinic then later, the GP, that I’ll probably be on for life) but they don’t have any side-effects or affect me mentally. 5 years ago I honestly never thought I’d be able to live a normal life like this, give my kids a piggyback, go to the gym, run and play sports. It seemed like a fantasy. Obviously I don’t know what your exact condition is, and it may be very different to mine, but I just wanted to give you some hope that recovery and the ability to lead a normal life again is possible

Hey @Ilostallthepens thank you so much for sharing. All of you who have shared personal stories give me a lot of hope. Unfortunately, my condition is degenerative, but I now choose how I deal with it, not the painkillers. I felt like they were making the choice for me, and it’s so true - you feel like an absolute zombie and it robs you of your ability to do the things that will actually help (why the fuck did I stop tai chi??? I wish I could tell you; it definitely helped).

@DoYouWantHalfThisSandwich So glad to hear the appointment went well! I know the post-physio aches but they’re almost always worth it, for good physio.

I came back to the thread, saw a few of you I hadn’t answered and because, honestly, I’m having a really rough day. I forgot how interconnected our bodies are - I have a headache, so I clench my jaw, which leads to jaw pain, which turns the headache into a migraine. I got so angry at my TV I actually retuned it today - I bought it in February but decided today was my line in the sand for its bullshit, I guess?!

But I can’t just force myself to “unclench” my jaw either! So frustrating, and a sign I’m going to be a work in progress for a little while yet. I know it requires patience but I’m also not patient by nature. I feel like Veruca Salt - I want it all and I want it now! Lol. I have a DEXA scan this Friday and then my next appointment is 4 June, to hopefully get approval to restart my phased return.

I know this isn’t a magic solution @thisishumiliating, but have you looked into botox as a possibility for the jaw clenching? I have a similar problem but have mostly managed to get it under control now (long story), but it was something I was considering.

Actually, I haven’t. I used to get terrible migraines from involuntarily clenching my jaw, but it stopped while I was on heavy-duty painkillers. Now it’s back, and it’s just today, but if it becomes a “regular” thing again, I’ll definitely check that out - thank you! They talked about trying Botox for my migraines years ago but ended up not trying it, and I didn’t know it could be used for jaw issues.

People use it for teeth grinding and the like apparently (I do that too).

I can’t remember if this was discussed earlier upthread, whether you’d seen a neurologist for your migraines?

I suffered for years. I still occasionally get them, but the neurologist prescribed tablets for high blood pressure (which I didn’t and don’t have) as a preventative measure. It seems to have basically stopped everything. My migraines were triggered by muscle tension (if I carried a heavy bag for example), jaw clenching, and so forth. And my headaches would also trigger migraines.

Anyway I know everyone’s different but the solution for me was so simple that I always recommend that everyone sees a neurologist if they possibly can!

It is incredibly weird that you say that @ChipsyKing . I actually do have blood pressure tablets and they helped a lot with headaches previously. My headaches are related to my inflammatory and degenerative condition - they don’t seem exactly sure of the mechanism, except the disease causes vascular damage and as my condition has progressed, my headaches have gotten a lot worse - I’ve had migraines since 17 but these are like uber-migraines, not quite as bad as the headache when I had aseptic meningitis, but in the same scale for sure. Anyway, my heart rate became dangerously slow so I had to stop them a few months ago. Now my heart rate is about 20-30 beats a minute faster on average, and my blood pressure is higher due to pain, so it might actually help a lot to ask the GP if it would be okay to try them again.

I really feel for you - pain is awful (duh) and migraines are agonising.

It does sound like the blood pressure tablets are something worth pursuing; if they’re a possibility for you again it could be really helpful.

I’m evangelical about them simply because I suffered for so long and lost so much precious time when there was a really simple fix. Naturally that’s not the case for most people’s migraines, but still…

Fingers crossed for you.

why the fuck did I stop tai chi??? I wish I could tell you; it definitely helped Can you still do it? If so, that’s your job for this week. Find yourself a tai chi class and get yourself enrolled. Top half only sitting on a chair if that’s what you have to do to start with. Just until you get back into it. And I suspect it would help with your mental health as well.

Not sure I’m going to be able @WilfredsPies I was awaiting a scan (DEXA) for osteoporosis and it looks like I may have broken either two toes (one can be taped, but two are a mess) and may have even broken my foot. (I have a lot of underlying conditions, so for normal people, this is a minor injuries job, but because I’m oh so special, it’s an A&E gig 😂). Fucking hell, how do toes hurt so much????

Not the same thing at all, but I do some caring for a relative with osteoporosis and through a combination of alcohol, stupid shoes, general clumsiness and feet catching in wide trouser legs, I have broken so many toes over the years, so you have my utmost sympathy. The whole situation sounds like an absolute bastard and I think you’re handling it with a huge amount of dignity and bravery.

Could you do chair tai chi instead? I googled it and it looks like it’s definitely a thing.

I can’t thank you enough for Googling that for me; I’ll check for chair tai chi as soon as I can.

Basically got sent to A&E by 111, there were roughly 100 people waiting when I got there, and at least 20 of them looked much more critical than me so I turned around and went home. My “plan” is mostly being managed by neurology because I only just got signed up for rheumatology, so I have a call into neurology and hope they can help me sort out how to get an X-ray tomorrow.

Sadly, I realize you understand this, but with a combo of a vasculitis condition, long-term steroid use (prednisone and then hydrocortisone for inflammation), diagnosed osteopenia and suspected osteoporosis, and the pain of any of it can trigger my neurological condition - it feels like an absolute shit show, and I’d prefer not to be the first person ever admitted to neurology ward for “suspected broken toes” 😂 Which I would definitely have been if I had been stuck waiting at A&E for hours. But it just sucks because of course there are people much sicker than me, but I also am not well enough to sit in a waiting room for hours, unfortunately.

It is so damn hard to be at the stage between being able to get yourself there and needing an ambulance because you can’t wait for care without being in a bed. And the 100 people I saw were all sitting in the waiting room which means every single bed behind doors was already taken, probably up and down sides of corridors too. I feel terrible for all those people; I’ve been there so many times myself.

Why does breaking toes always make me feel incompetent??? Like I couldn’t even take of the little piggies 🤣

I think that’s a pretty wise decision, you’d have been there for hours and there’s no point triggering the more serious stuff because you’ve been sat in an uncomfortable chair for eight hours. If neurology can’t help with the x-ray, could your GP help? Mine has given me a slip to go and have an X-ray done previously (I have a lung thing) where I just went straight to the X-ray dept and bypassed A&E completely. Although I suppose it depends on being able to get an appt and how sympathetic your GP is to not wanting you to wait for hours.

Why does breaking toes always make me feel incompetent??? Like I couldn’t even take of the little piggies 🤣 If it makes you feel any better, I had zero medical conditions when I broke mine. The last time, I was walking down the stairs in my own home. I was a fit and healthy 40 year old, completely sober, not wearing any loose clothing or shoes and I couldn’t walk down my own stairs without missing a step, doing the splits and taking my big toe out 🤦‍♀️ Pesky little things are too delicate to be in such a dangerous place. It’s not us, it’s evolution!