Cant sleep with pain - DH's response

[Rumors1]

I dont know if I am being overly sensitive about this. For context I have been in some level of pain almost constantly for the past number of years. I have psoriatic arthritis (its an inflammatory arthritis) for 7 years and take weekly injections. I have had a rough year with it and its only in the last couple of months that the arthritis is under control. I had to cut back on my sports hobbies as they were causing too much pain.
I have a twisted pelvis that I was going to a physio for. I do the exercises everyday and spend about 1.5 hours daily doing strengthening exercises and stretches to try to straighten my pelvis.
It is only having minimal effect and at night my hips can get very painful and I get tingling and numbness down my left leg (this is also starting in my right calf recently)

I have also started to get facial pain and am waiting on a CT scan as the consultant thinks I am developing trigeminal neuralgia (TN).This is a painful condition where the nerves in the side of the face misfire. I have the symptoms of the atypical version as I have it on both sides of my face not just one.
Touching my face or the cold/wind triggers it.

For most of this year at least 4 out of 7 nights I struggle to fall asleep because of pain. It could take 2/3 hours to fall asleep.
Last night we went to bed at 10.45pm and at 1am I was still awake as when I tried to sleep on my side it triggered the face pain (like a strong ear ache with shooting pains) and when I lay on my back it started the pelvis pain and tingling down my leg.

I sat up in the bed and DH woke up. He asked what was wrong and I said I couldnt sleep because of the pain. He asked what pain and I said face and hips, he replied "ah the usual pains". He asked if he could get me anything to which I said no thanks. He then turned over and went back to sleep.

I often sit in the bed crying quietly at night out of pain and frustration, DH is a heavy sleeper so he doesnt wake and I dont try to wake him.

I just felt upset last night at his lack of attention. He is very good in every other way but I feel he is not understanding about this pain and the effect it has on me.
He thinks offering to get me a painkiller or drink is sufficient.
He just doesnt understand or (as far as I can see) try to understand the emotional impact of constant pain.
I am probably just being over sensitive as I am so worried about the TN as I know it is a progressive condition.

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I do feel for you but what exactly would you like DH to do at 1:00am when you can't sleep? He did ask if you wanted anything and you said no.

He asked if he could get me anything to which I said no thanks. He then turned over and went back to sleep.

He asked you if he could get you anything and you said 'no'! So what's he supposed to do? Next time you want something specific, ask.

I see why you're worried and upset. Chronic pain is terrible to live with. Are you being prescribed anything for it right now? I know you're waiting for a scan but what help have you been given in the mean time? There should be a pain clinic you can be referred to.

I think, gently, your DH is thinking there's not a lot else he can do and to some extent he's right. Him staying awake with you isn't the answer, that will just make both of you exhausted. Can you try podcasts or meditations to listen to, to help you fall asleep? What have you tried so far?

His response was perfectly reasonable. He asked if you needed anything, and you said no. It must be awful to be in so much pain but I'm not sure what different response you are looking for from him?

I have chronic pain and issues with sleep as well - I'm not sure I'd expect DH to do anything at 1am, really. He did ask if you wanted anything and you said no - so I'm not sure what else it was you were after?

If it was sympathy or a hug or something then you needed to tell him that - you can't expect him to be a mind reader when he's just been woken up in the middle of the night.

I hope you get on top of things soon x

Thanks for the replies. I havent said anything to him as I did think I was probably being too sensitive, and I know there is no badness in it. I think it was just the fact he was focused on the practicalities only and not the emotional side that got to me. Painkillers dont work and he knows I dont take them for it. A hug and a bit of sympathy was what I needed but it feels very false if you have to ask for it!

If I knew he was sitting up on bed frequently unable to sleep with the pain, I would be asking after his emotional wellbeing.

I am due back in the hospital next week and will ask about a referral to a pain clinic. I have been putting it off as I was hoping things would settle down.

I have chronic pain and it often wakes me up in the night.

I usually get up, make up a cup of tea, take painkillers and a couple of biscuits and Mumsnet until the painkillers kick in.

Do you have sufficient pain relief? It doesn't sound like it. Look at your meds again.

You need to be clear. If he asks if you need anything an acceptable response is "a cuddle please, I'm really struggling "

I suffer from chronic pain too so I understand why you feel like you do, but honestly I don't think your dh has done anything wrong either. It is the 'usual' pain (ie it wasn't something that's not happened before that would ring alarm bells for him) and he presumably knows it can make sleeping difficult. He offered help and you said you didn't need it. He wasn't to know that you needed more emotional support last night than usual. I get it, you are tired and sore, and it's so easy to cast blame on those around you, but I honestly think it's a lesson for you- next time ask for a hug. Hope the pain eases for you soon!

A hug and a bit of sympathy was what I needed but it feels very false if you have to ask for it!

This is how humans communicate. If they want something, they ask for it. Nobody has telepathic abilities and throwing comments like "you just don't understand!!!" is not going to get you closer to your goal either. My ex lived with psoriatic arthritis. I very much do understand in as far as I can understand another person's experience without feeling it myself. But I am also a human being and my emotional needs also matter in a relationship but it all became about his needs and his wants which he couldn't even communicate to me properly. And it broke out relationship so don't be that person, OP.

I don’t think he’s done anything wrong here, and as difficult as I can imagine it must be for you if it is happening 4 nights a week, every week, it’s not reasonable to expect him to also sit awake providing emotional support in the middle of the night every night.

I had chronic pain for nearly a year due to sciatica. Until then, I'd absolutely no idea how exhausting, distressing and debilitating long term pain could be.

It sounds like your DH is lovely, but just doesn't properly understand it, which is not surprising if he hasn't experienced chronic pain himself.

@Rumors1 this is a total aside but you may want to look into other avenues of dealing with auto immune disease, particularly diet...if you google AIP (auto-immune protocol) you may find that dietary change can help reduce your symptoms.
Sending solidarity - I also live with a long term auto-immune illness, it's really hard on many fronts including relationships , but i definitely recommend the Pain Clinic if you can get referred...i've been on a number of very helpful programmes through my local service.

People have no idea about chronic pain or lifelong health conditions if they've never experienced it themselves.

So if you want a hug or some reassurance then I do think it's on you to ask for that.

Fellow chronic pain sufferer here. I also have very bad nights at times due to nerve pain, it's very hard to cope with and dominates my entire life.

My husband is aware when I've had a bad night and will often check if I'm ok. He's always happy to fetch me painkillers/water in the middle of the night, and has sometimes had to get up and massage my calves if I'm having cramps or spasms. Although I try not to disturb him unless absolutely necessary - as a previous poster has pointed out, there's no point in him also missing sleep.

Very gently, I think your feelings are caused by the burden of your health conditions rather than a lack of care from your husband. My suggestion would be that next time he asks if you need anything, ask for a hug. It sounds silly, but even holding hands in bed is a big help emotionally when you're in pain and feeling alone. It really helps me anyway, pain is so isolating and sleepless nights feel endless.

Perhaps try to explain to your husband that whilst he may not be able to do anything practical to help you, you might benefit from some comforting from him?

Thanks everyone, I didnt understand either how difficult chronic pain is until all of these things came together. Its not just the physical pain its the emotional side of it.

I eat a very healthy diet (@Supssups I have worked a lot on diet changes to identify triggers), I exercise daily, have a good sleep routine, dont drink or smoke. I do all I can and I think thats why I am so frustrated.

I try not to go on about it or show how bad things are in front of the children, nor do I want to be a bore to my DH talking about pain all the time, but I think DH takes that as me coping well.
DH never gets sick, he goes on about mind over matter and I think there is part of him that thinks if I just got on with it, it would all go away. That does make it a bit harder to speak with him about it.

My mother goes on and on about her pains all the time so I know how frustrating it can be to listen to that and it drives my DH mad so I am conscious of that also.

I have the same as you OP (with my Pelvis) although not getting any Physio for it and I also have MS.
I am prescribed slow release Buprenorphine patches for my pain. They last 4 or 7 days (depending on the brand prescribed) and they’re life changing! You don’t feel like you’re ‘on’ anything, they simply lift away the pain! I can’t walk without them and can’t lie on my side but with one on, I can do both these things. They’re a revelation. I’ve been on them 11 years now and wouldn’t be without them. They don’t impair you at all as they’re slow release and driving isn’t affected at all. Maybe speak to your GP about them?
As for DP, he sounds great! He probably was half asleep. I expect he would’ve given you a hug if he was thinking straight. I think it’s unfair to expect more than he gave, when he was half asleep

I think if there’s something you want in the night you need to ask.

Particularly if you’ve got a pain condition that contact can aggravate. It would seem insensitive to hug without some kind of invitation as may make things worse not better.

In the world of unsolicited advice - getting a sleep headband with earphones in was the best thing I ever did for sleep with pain. The £10 version off Amazon, not the snooze band. Radio 4 style podcasts or the same audio book again and again, meant that was lying in bed resting and listening to something I was vaguely interested in. Much less frustrating than trying to sleep.

and generally resulted in sleep.

https://www.nhs.uk/medicines/buprenorphine-for-pain/about-buprenorphine-for-pain/

I have sciatica and often can't sleep at night. I do what others have described, get up, have a tea and a biscuit, read my book until the painkillers kick in. I can think of nothing worse than lying in bed, in pain and trying to sleep. If my partner was awake or woke whilst I was not sleeping he would be very practical too, painkillers or a drink. He is trying to help you. If you want a hug say so. After a bit it will be part of his response to you, painkillers, a drink, a hug? It's miserable having constant pain and I do sympathise.

Just to add a had facial neuralgia a lot of years ago and don't any more. So it's not necessarily a permanent thing. It is nasty though. Consultant told me not to open my mouth in the cold. Advice I follow to this day.

It might be worth talking to your husband during the day about what you would like him to do in that situation? Then he will know that when you say no there's nothing you need from him it means there's nothing he can physically get you but being held would be nice or if a hug would be more uncomfortable a hand hold.

I find that the middle of the night is a poor time of day for picking up soft cues for emotional needs and sometimes they need highlighting at a time when it's easier to notice anothers emotional needs

I went through a phase of having panic attacks an hour after I went to sleep which would wake me up. At first my partner would try an rationalise my way out of it, then tried to fix it. What I needed and what helped was him giving me space for a few minutes to sort myself and then, once I was starting to head out of the panic, a cuddle soothed all the adrenaline coursing through my veins and probably his too!

@Rumors1 I have a very similar condition and I know how horrendous the pain and lack of sleep feels. My is well managed at the moment but still have trouble sleeping sometimes. When it wasn't well controlled I'd go weeks with almost no sleep. I've burst into tears at work because I was so sleepy deprived, it made me feel depressed.
I hope you start improving somewhat soon and please see your rheumatologist if they can switch your injections for a different drug if needed, they can become ineffective after a while even if they worked initially.
As for your husband, I think he offered what he could, but I understand your upset and frustration while your sleep deprived and in pain and they're sleeping soundly with no issues. Try not to be too hard on him or if there is something you want him to do for you, let him know.

Very similar situation here (I have lupus and interstitial cystitis which causes severe nerve pain) but I don’t think your dh can do anything more than he’s doing. Do you talk to him about it during the day? Dh listens to me moan about things - not all the time, I try not to go on too much, and does “get it”. I do feel it must be hard for him sleeping next to me sometimes- but then he snores like a train 🤷‍♀️😂

The only thing that has made any difference whatsoever to me is amitriptyline. It actually makes you sleepy as well - you take it a couple of hours before you want to sleep.

Thanks so much for all your responses and suggestions, I will look into them all.

@Barney16 it is good to hear that your neuralgia went, I think this is the condition that is giving me the most stress and worry. Its -2 degrees here and I am afraid to go for my morning walk in case the cold triggers its again. I wear a balaclava when its cold but it doesnt stop it completely.