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.

Hugs to you this evening @thisishumiliating & 💐 too! There’s never too many hugs or flowers!! You’re definitely not letting any of us down, we’re like this weird little posse of poorly people drawn together by the power that is Mumsnet! We’re here to offer strangers on the internet support, hope, the occasional good idea, & other random things (I’ve seen people take all sorts from threads on here!). I see from your update that your boss has told you not to worry, & I was going to ask if you’ve filled them in on your medication changes? If you’ve not had the chance, would this be beneficial? It’s a big deal dropping down the serious pain relief & the boss/HR might suggest extra alterations. There is also no shame in taking extra sick leave - your body is readjusting to some serious changes & the symptoms you’re experiencing are very real & very challenging 💐

What an absolute disgrace. 20- 40 mg morphine a day for severe chronic pain is nothing. How could they do this to you ? You need to go back and sort this out, and if they don't listen then if you can afford it stop relying on the NHS. They're rubbish

Have you looked into prescription cannabis vapes? That can help chronic pain, anxiety, insomnia and some of your illnesses in some people.

The opiate withdrawals will be bad for a few days but will get better. If you're doing it quickly (or cold turkey) it should be out of your body in around 72 hours. Then it becomes more psychological to stay off it.

There's no reason to feel embarrassed or ashamed.

Wishing you well x

You're not letting anyone down. I agree with pp that it sounds like perhaps you've tried to go back to work too soon.

Please can you put down the cricket bat or whatever implement it is that you seem to be using to beat yourself up. Your nervous system needs soothing, compassionate words from you, not hostility. 💐

I finally just slept through until morning. After I handle this email (I have to because I’m a specialist and they’re the same kind of specialist and my boss just doesn’t speak that language), I’ll be going off work again until my appointment 4 June.

And @ThatFairy - it’s not the fault of medical care, I promise. They gave me the ability to take up to 120mg a day (4x Oramorph 10, and 3x Zomorph 30) but my body… it’s hard to explain, it’s like I can no longer handle the morphine - I can’t stand feeling so out of it, it causes horrific constipation, whereas on fentanyl, I didn’t feel high or have any constipation, because that makes my back hurt ten times worse - I just felt comfortably numb from all the things happening around me, and they were some pretty horrific things.

My body knows I’m safe now but my mind doesn’t. I have a call in to my GP for medication advice (especially about the constipation), to the neurology help line (they called back but I missed the call because I was on with the GP’s office - my fucking luck) and I have therapy at 315 (unfortunately my therapist couldn’t make it any sooner). I know I’m doing everything right, I know I’ll be fine. But Jesus, I feel like there was a collision between the pain/withdrawal truck and the mental health truck and I was standing right between them when they collided. And now all that’s left of me is something they can show on one of those air ambulance shows on Channel 4.

@BillieWiper I do have medical THC available, but I’m very careful about taking any when my mental health is already in the bog.

And I appreciate so much those of you who keep coming back to this thread. I just can’t tell anyone in real life about this; they think I was sick, and now I’ll be well given time, and smart people would have said no to the fentanyl a lot sooner. (Part of me fears they’re right but @decorationday said to stop hitting myself with a cricket bat, so I’m trying to).

I see @thisishumiliating what will you do about the pain ?

Take it a day at a time until I can take it two days at a time? My GP and the neurology team have both called back and helped me come up with a plan to sort the constipation so that I can take the amount of painkillers I need for now. My GP thinks 20-40 is way, WAY too low for right now, and he’s right, I know. I feel like my back and hips are cracking in half. I want this over but it can only move so quickly. The neurology team recommended watching ER with George Clooney for distraction. (I’m bisexual, so ER is awesome - George Clooney, Noah Wyle, Julianna Margolies - a good time in TV history, way better than Friends),

Oh, I'm glad you will be getting it sorted better. I'm so sorry you're experiencing this

Hi OP! I'm a long term morphine user, approx 12 years on it for chronic pain! I've been reducing as well and the withdrawals are a bastard! It's so hard because you obviously get the usual withdrawal symptoms, but i never ever expected to have excruciating pain as a withdrawal symptom. Having that on top of the chronic pain I'm medicated for was absolute hell for me.
I'm not fully off it now and never will be, but I've reduced by around 3/4. The withdrawals won't last forever. I think the worst of it for me lasted around a week, I was then left with a bit of withdrawal pain but I found pushing through and trying to do a bit of moving several times a day has helped with this.
Well done on getting as far as you have so far, if you ever want to talk my inbox is open!

Thank you so, so much. Husband is out picking up prescriptions for Lorazepam and a double-strength non-osmotic laxative. The neurology team warned me about exactly what you’ve said - basically when you reduce, the pain starts “screaming” and it WILL get better, but this is the hardest part. Thank you so much for the kind offer to talk.

I expected the discomfort, the sweats, feeling freezing, roasting etc... but never did I expect pain that wasn't my usual chronic pain!
Take it one day at a time and go easy on yourself. I won't lie, I had days where I bumped up my reduced dose because I just couldn't cope with the withdrawal pain. I kicked myself for it afterwards, but now I think does it really matter? It wasn't everytime, it wasn't my previous high dose, it was just enough to give me a bit of relief on the odd day. I religiously stuck to 2 paracetamol 4 times a day just for help with my temperature, drank water none stop and set myself a basic target each day, like do a load of washing and hang it out. It made me feel less shitty about festering away in bed or on the sofa all day. At least I achieved a load of washing while I was in agony.

Hopefully the laxative will help you, it certainly doesn't help with comfort or pain when you are struggling to go to the toilet. It became a running joke in my house that I just don't poo 😅 I noticed you mention THC as well. My partner is prescribed an oil which I used to pinch a bit of at night time. I don't know about you but I found night the worst. I think lying there with no distractions highlighted how bad my body felt. My legs would get restless and painful if i kept them still, and my spine and lower back would be in absolute agony. No position was comfy or eased the pain so I'd end up with no sleep, then terrible headaches the next day. The oil would knock me out so that at least solved a problem for me while i was going through the worst of it.

My heart goes out to you, OP. I know how awful chronic pain is, how awful the medication side effects are and how soul destroying breakthrough pain can be. I take Gabapentin, Naproxen, Zomorph & Oramorph along with using Lidocaine patches and I dread the day any doctor suggests changes.

I don’t know if it would be suitable for you, but I use an electric ‘under-blanket’ and call it my electric sheet. It ties on to the mattress, under my fitted sheet and has 3 different heat levels. My lower back & legs are affected and sometimes the warmth provides a bit of relief. I got mine off Amazon. Might be worth a look, check if it would be safe for you.

You’ve nothing at all to be ashamed of. Please accept that. You have a disability and are in need of help. It’s not a weakness to admit that. Sending you strength to get through this awful time. X

I cannot thank you enough for the support @Whowhatwhere21 @MaidOfSteel This is the exact problem. I was ready for regular withdrawal symptoms; I was no prepared for increased pain and the psychological effects it brings. And Maid, yes - a large part of this is dealing with the fact that I’m facing a life of disability. My doctors are hopeful for 80% recovery, but I think my psychological problem is that I was prepared for either 0% (death, which is what doctors in my last country told me and how I ended up on a palliative dose of fentanyl) or 100%, if my diseases went into remission. I don’t know what 80% looks like, I don’t know what it will feel like, I’m not even sure what I’m working towards.

Anyway, therapy in 15 minutes so you ladies have fucking done it! Supported me through the worst at the beginning. No idea if I’ll keep this thread alive.

And I’m looking into heating options and going to start religiously taking my paracetamol (thanks! It’s funny how you forget) to help with the temp changes.

@thisishumiliating You're spot on with not being prepared for the 'extras', that's how I felt and I'd imagine a lot of others as well.

All you can do for the time being is get through each day, and work towards getting over these horrid withdrawals. And you WILL do it!
Definitely try the paracetamol. I used to hate people suggesting it to me thinking its ridiculous, I'm on morphine so what do you think paracetamol will do for me?! But it actually did really help settle my temperature and take the edge of some of the aches I was getting across my body.

My mum came off morphine 2 years ago (after being on it for years) she had to get methadone from the chemist like everyone else (weird as they’d let her have ridiculous amounts of oramorph at home) but it’s the best thing she did. She had full support from pain team etc too. Is methadone an option?

@Whowhatwhere21 I know you’re right.

@houseofisms If my biggest problems were physical withdrawals, methadone would definitely be an option. The problem is that my biggest withdrawal symptoms are mental - fentanyl is very similar but a lot different than morphine, in that it’s a lot more dissociative than people realize. That distance allowed me to survive the things I had to - my ex telling me to have the OW clean me up when I was vomiting blood because he couldn’t just come home from work (this is just ONE example from a decade on fentanyl) - and suddenly losing that distance is harder than the physical withdrawals, and the physical withdrawals are already the hardest I’ve faced.

I have to get to the rheumatologist tomorrow and it’s an hour away and I’m having trouble even getting to the bathroom and back. I have to go, though - I absolutely need to see them and try to get back on an anti-TNF to hopefully slow the erosion from inflammation in my back. I’ve set my alarm for 6 so that I have 2 hours to be in pain and feel sick and make myself a settling cup of tea or two and watch an episode of something before leaving. Any recommendations for what you guys watch at your absolute lowest? My neurology team is recommending classic ER.

And OF COURSE the laxative kicked in at 6am and I need to be an hour away by car by 9 (my mum offered to help me pay for an Uber and I may have to; I’m having trouble even getting out of the toilet and it’s already 7:26). What a shit show. Figuratively, literally, all the ways. If I thought this was humiliating two days ago, I didn’t know what 6am Friday would feel like. I want to laugh at the ridiculousness but also sob at the embarrassment. I don’t know if anyone is up. Fuck.

There are powerful mental changes you will go through as you withdraw. It's because your brain actually down-regulates its production of a group of neurotransmitters in response to the presence of fentanyl. It will start producing these again but the transition is painful, confusing, disorientating.

You are coping with this incredibly well. You might feel this is a mad thing to say given how you are feeling but the fact is you are persisting and this is all you need to do to succeed. You will succeed whether you do this screaming, crying, shitting - all of these things are actually success in this context so long as you persist.

I have seen this process - my late DH withdrew from fentanyl after over a decade on it. It was the most difficult and brave thing I have ever witnessed and it was completely worth it. It's really worth it. He was very severely disabled and there was no prospect of him exiting pain, but then as you will know yourself he was in pain on the "painkillers" anyway! In pain and also a bit mad.

The way we (generally not you personally) think about pain is unhelpful and counterproductive. I found this site very helpful https://www.painscience.com/articles/pain-is-weird.php and lots of discussions at the pain clinic. I do recommend getting support from one in particular, not a regular doctor or consultant, as doctors also often have mythical and unhelpful beliefs about pain that can overtake us.

The Mentalist is on Amazon Prime at the moment. It just goes on and on and on - old US TV shows are good for riding things out like this. You can get up every 22 or 46 minutes and shake your bones out and then just go again. The Mentalist, Bones, House - those sorts of formulaic shows.

Have you tried reflexology or chiropractic treatment?
I ask because masking pain with medication is not discovering the actual cause.

I too am up, & sort of awake, this early for a hospital appointment @thisishumiliating ! And of course my stoma decided last night was the perfect time to work overtime 😕I hope today’s appointment goes fabulously, with a good, positive outcome - you will come away with a new plan & prescription for the anti TNF meds (or similar if there is something new & better!)! I’ve had my two teas, two hours time - lots of people don’t ‘get’ that this is much needed space just to get going. Good luck 🤞🏻

Oh my god my doctors haven’t heard of anyone withdrawing after a decade from the rate I was on, but I imagine your husband must have gone through the same. Honestly, I feel 50% less crazy just knowing someone else has gone through it (I mean, logically I knew but I just hadnt talked to anyone) but that captures it so well: eventually the choice is in pain and a bit mad or just in pain, and the “bit mad” steals so much from you. It unfortunately both allowed and encouraged my ex to act like I was much less capable than I was (we don’t talk much; he had caregiver burnout and used it to excuse some actually unforgivable behavior).

Oh yes he was on 400mcg Actiq, multiple per day. An extraordinarily high dose by the end. And as good proof as any you'd need that opioids do not work for chronic pain, and steal so so much from you. It changes your personality so much.

Thank you THANK YOU for this. I was on 150mcg patches (one 100 and one 50) and my doctors are kind of acting like no human has ever come off doses this “high,” and I think for my peace of mind, it helps a LOT to be able to frame it as: no, I am not special or unique in this pain, other people have gone through it and survived. Please give my very best to your husband - him feeling comfortable with you sharing his story has made such a huge difference even though it’s a horrible day here.

@DoYouWantHalfThisSandwich oh gosh, how did your appointment go? I’m so sorry to hear you woke up to stoma difficulties! It must be hard enough to have one to begin with and then when it decides to function in unexpected ways… very uncool of it! Please know you’re in my thoughts. Mine was SO long and so painful; I don’t mind neurology half as much as rheumatology because the consultations seem to always be, “Ok, tell me where it hurts most so I can then press there as hard as possible.” I mean, I know it’s for evaluation, I know it’s to track the disease progression and medication effectiveness, but man, that does NOT lower the pain of it. And then they took nine vials of blood and a boatload of X-rays. All of this I could have stomached, but they also decided to redo the pathergy test and no one should be stabbed in the softest part of their inner arm four times with a huge sterile needle - it blows, and made it abundantly clear that I won’t be getting a tattoo sleeve any time soon (also, the pathergy test is already coming “up” positive, so it was pointless). Ha.