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.

This is the worst it will be.

One foot in front of the other, you got this.

Every minute, every hour, every day is a victory. Tick whatever measure works.

That's so hard and you've been very brave. It won't last forever. You can get through this. You've done so well already 💐

How complicated is the work thing? Can you set a timer, grit your teeth and do 10 minutes on it?

Today won't last forever. You just need to cling on to your boat and ride out this wave.

When everything feels overwhelming and impossible and unbearable, you need to stay in this second right now rather than thinking even 10 minutes ahead. In this moment right now you can be okay, you can focus on your breathing.

Do you have a chart of the amazing progress you've made already? That's something to be so proud of, it truly is.

Can you use heatpads now to try and help with the pain a little ?

I have several chronic conditions and a disability causing chronic pain and am sometimes in so much pain and am so weak I cannot 'go' either.

I have to up my water, keep myself as comfortable as I can, and if I'm still unable to brace myself against something to help and make it happen, I get on the bisacodyl.

I can't comment on the withdrawal - I get discontinuation syndrome if I miss either of two of my regular meds, but the solution for me isn't going to be the same.

You've done so well. As someone else said, this is the worst it'll be.

💐 @thisishumiliating , but I want to reassure you that it’s not humiliating & you’re also not alone. You’ve been on an astonishingly high level of pain relief for some time, & as you stated, come down to a ‘low’ dose very quickly. Withdrawal is absolutely shit, I have the shirt as they say! I’m currently surviving on 120mg - 140mg of Oramorph daily, along with continuous 50mcg of fentanyl. And still there is break through pain which brings me to my absolute knees 😥
You’ve done amazingly to drop the dose by the amount you have in one go, amazingly. You’ve mentioned therapy & pain nurse in your opening post - is this a regular pain clinic led by a consultant anaesthetist? And have they talked about pregablin or gabapentin for the back pain? Or other options? The NHS can be amazing when it comes to pain management, but also a bit hit & miss. I just want you to know you’re not alone 💐

Thank you so much to all of you so far.

1. No, I don’t have a chart or anything of how far I’ve come. Maybe I should. I was thinking about getting some calligraphy for the bedroom that says “the past is a foreign country,” to remind me.
2. I know you’re all right about this. One second, one minute, one hour.
3. No heating pads, but maybe I could put a hot water bottle against my back? @CoastalCalm
4. Whoever recommended setting a timer and gritting my teeth for work, you’re a goddamn genius. I got through 5 minutes, but I only need to be able to do that about 4 times before 1am. @Shakethedisease
5. Yes, I think tonight at bedtime will be bisacodyl time. I’m still disabled, and it seems like the less the painkillers, the more pronounced it becomes. I’ve had to use it before because once I start getting really sick, I have trouble with my fluid intake and osmotic laxatives are useless. You’re 100% right though and I’ll try to up the water for tonight (always a struggle). @TheHatOfHappiness

Thank you so much for posting. We tried pregabalin and gabapentin, amitriptyline, etc. Unfortunately, my disease has caused… shit, bone something. Where the bones wear away at the joints. My biggest problems are my hips, knees, shoulders, and ankylosing spondylitis in my back. And yes, I know what you mean - when my hips and my back kick in top pain levels at the same time, I’m immobilized. I’m so sorry you’re going through it. I feel like in some ways, withdrawal would be easier if the pain would just end. Having pain and withdrawals at the same time is absolute shite. If you were thinking of trying it as a birthday treat or something, don’t 🤣 But really, I hope you have the support you need. DH (I remarried in the UK) is feeding me and watering me and generally keeping me alive today.

I know nothing about what you are going through but think you are incredibly strong and brave - I hope it gets easier for you and better people than I have reassured you but you will be in my thoughts.

You know what, though? I’m at my very lowest and this comment helps me. We all have different experiences. Maybe you don’t have experience-based advice for this, but I appreciate your compassion. It’s a very valuable thing to have, and it shows true kindness to others.

I’m reluctant to post this but I can only speak from experience. My pain was no where near as severe as yours and I’m in awe at how well you are coping. I just wanted to suggest the use of castor oil. I was in excruciating pain in the left of my face. I could not touch my cheek, open my mouth or speak. If gallstones was a 10 this was an 8. The difficulty was that there was no obvious trigger. My doctor gave a possible explanation and could only offer painkillers. I applied castor oil every morning and every night. The pain has completely gone. Maybe just give it a try? Wishing you all the best. 💐

Thanks for this. I had no idea that apparently castor oil is a potent anti-inflammatory. I’ll check with my doctor and see if it’s okay to try using it topically. The problem is they keep trying to numb the various areas (either centrally with opioids or directly with lidocaine patches), which just doesn’t ever work. I need to bring down the incredibly high level of inflammation. I was on an anti-TNF injection several years ago, and I see the rheumatologist this Friday and am hoping they would consider it again. It’s the only thing that’s ever helped directly with my back pain.

Well done you! That's the first bit of work done. Use your timer again and you can get this done 5 minutes at a time. I'm willing you on. 💪

The body is an extraordinary thing, It has all sorts of great systems for self protection and maintenance. Sometimes they go a bit haywire and send out unhelpful signals.
I find it helpful to remind myself it’s just a few chemicals and electrons running around the body and that it’s a signal rather than something concrete.

I back that up with self care- the kind of care you give a child, magic cream, rubbing it better, a comforting treat of some kind.

@thisishumiliating I live in constant pain and was on morphine patches for a while, they were awful to come off and I was on a fairly low dose compared to yours (10mg).

Sending hugs cos it is awful, but just remember the first 24-48 hours is the worst and it does improve.

I see a chiropractor who does a combo of acupuncture, massage, cupping and manipulation and she has worked bloody mirilacles. I appreciate it isn't for everyone and for the first 3 sessions I left her treatment room and threw up, but it has eased things significantly so I would recommend finding someone local to you and seeing what they can do to help.

Wherever you are, whatever you're doing OP, I'm proud of you for trying

I promise you, I am trying, so, so hard.

About to try to put in my next five minutes wi to timer@Shakethedisease . Thank you so much

I know someone who used a tens machine for chronic back pain, no idea if that’s suitable for you but am sharing in case it’s something worth trying. It sounds awful, hang in there.

@thisishumiliating Axial SpA is devastatingly painful & debilitating. It’s my ‘secondary’ illness, but my God, the pain recently has been beyond belief 😓I’m sorry the pregabalin/gabapentin/amitriptyline route didn’t work out for you - as you can tell, I might have 2 out of 3 of these in my daily routine! I’ve just seen your update regarding the anti-TNF meds - was this Infliximab or Humira? If so, & this is purely anecdotal, I came off Humira & on to Skyrizi, again for my number one illness rather than the AS, & it’s done naff all for it. So if they are mentioned & if you found it helpful first time round, push for a Humira type biologic if you can 💐

Also just to follow up with a previous comment - rather than a hot water bottle, see if you can find a heated cushion. I’ve permanently damaged my back from repeated hot water bottle use, but now have a heated cushion which cuts off after 90mins, meaning you can’t (in theory) burn yourself on it. Mine was from Lidl (middle aisle special!), but I’m sure others are out there 💐

OP, you are amazing. I’ve got no idea what you are going through but to do what you are doing takes absolute guts. There are so many positive posts on here from others that know, and from others (like me) that can only imagine. I’m sending you all the hugs (gentle ones) and best wishes in the world. X

really feel for you OP. Chronic pain sucks and this must be really hard.

can you do heat/cold therapy? Might give your back some relief.

go outside and do some walking, stick headphones on/in, the gentle exercise should help & physically and mentally, it will be hard at first, even if you start at a few mins and just keep building

are you taking any thing to reduce inflammation/an anti inflammatory ?

You aren’t alone OP, not sure if there are support groups local to you but I have found Toktok found me a little community of people that have the same thing as me from listening/reading my google searches and that has helped me feel a) not so alone but b) given practical help

Really feel for you

Saw you have a hot water bottle, do that, honestly just keep setting timers, having breaks etc.

I would suggest investing in a heated blanket/throw. There have been times when I have only made it through the day bu having the blanked under me and the throw on top. Have to do what you have to, to get through.

if you haven’t already, seat support will help take some pressure off your spine/hips

what other practical things have you got for support, lets see if we can come up with other things that will help.

@thisishumiliating
Sorry to hear of this pain and difficult situation.
hope you’re much better soon.
in the meantime, tiny small steps can be helpful - like the work timer for 5 minutes.
anything else you really need/want to do, work out the minimum or a tiny alternative. For example, a glass of water might be too much. But a mouthful or sip every 10 minutes might be ok. A shower might be totally unmanageable but a hot flannel round your face might be a comfort. X

I have no practical advice, but I do have a very firm and absolutely correct belief that you have zero to be ashamed about. You’ve escaped from an awful situation with your ex and have found happiness and a new life with someone who sounds like he treats you really nicely. That’s something to be bloody proud of, for a start.

And if a doctor prescribes you medication, you trust that they’re doing the best for your health. What have you got to be ashamed about there?

As suggested above, take it a minute at a time if that’s what helps. But don’t you go accepting any shame for something you’re not responsible for. It’s not true and it doesn’t help you in any way. What is true is that you’ve got through some awful things and this will hopefully be the last big awful thing to get through, and you will come out the other side of this, as you have done with everything else.