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 usually don't like to generalise but I think sometimes men are just more literal.
To him he asked if you wanted anything and you said no, so there wasn't anything for him to do.
If he'd said "do you want anything" and you said "no thanks, but I'm just sad and in pain and need a cuddle" that might be more helpful!?

I think you are being a bit sensitive. However I do feel for you being in pain so much.

@Rumors1 please look into the curable app and tell me about your pain podcast. There is a lot of recent research on chronic pain or neuroplastic pain and there is a lot that can be done to reduce or eliminate it. Best of luck to you. Chronic pain sucks.

I see your point OP. If I was struggling like this and it woke my DH he would throw his arms around me, rub my back, sit with me, tell me he loves me and hates seeing me like this. That kind of thing. I see your point, but don't be too hard on him. 1am in the middle of sleep is a hard time to think like this.

There's nothing else he could do. A hug laying down would have hurt your hip/lower back and face, a hug sitting up would have hurt your hip/lower back and face.

It's shit, I get it completely, but if switching the side you lay on doesn't give you any relief, he can't even lay his hand on your hip to provide some contact.

You do need to ask about reviewing your medication, as it's possible you could need to add in or change a biologic or perhaps a steroid pulse to give you some relief (assuming that your mattress is new enough and firm enough for support at the same time as being soft enough on top to not hurt you further and things like supporting one knee haven't been successful). The other thing with steroids is that they can be extremely useful in determining whether there's still uncontrolled inflammation or a mechanical issue or an emotional one, as any tears/loneliness/etc that disappears as soon as you have the injection = it was uncontrolled inflammation. Extremely useful in batting away the usual 'oh, maybe it's because you're depressed that you think you're in pain' stuff.

I also found that I was grinding and clenching my teeth for whatever reason (pain? ADHD? people telling me I 'just need to eat/not eat this magic ingredient/secret poison that Big Pharma doesn't want you to know about'?) and using a nightguard from the dentist helped reduce the tendency during the day as well as at night and caused a decrease facial pain - well, other than the nerve pain from cracking a molar in the first place, that was only solved by the tooth coming out.

I'm not a fan of my 3.30am still awakeness. Or the current physical inability to exercise beyond trying to relieve the pressure on my lower back.

But it wouldn't help me to keep my DP up as well, it would just mean he's tired as well.

Also get your jaw/teeth checked. My neuralgia was getting kicked off by TMJ. Mouth guard at night really helped and avoiding cold as pp said

can I come at this from your husband's side please. My DH is in chronic pain with an autoimmune disease and I have been woken up many nights by him over the years

From your DH's point of view, you woke him (accidentally) he checked in on you and tried to catch his sleep back before he woke up too much. He checked if it was anything new, he asked if you needed anything and then went back to sleep. He didn't get grumpy, he wasn't annoyed, he checked in with you and unless you tell him you want a hug a half asleep person isnt necessarily going to think of that.

My DH has woken me up so often accidentally it is like having a baby again at times! I know it is nothing compared to the pain you go through but the lack of sleep can impact parters too and we dont always do the right thing in the middle of the night

It is very nasty, i can completely understand why you don't want to have it again. I wound a scarf round my lower face which I'm sure made me look really silly, a balaclava is a much better idea. Also as someone has suggested consider whether you are clenching your jaw, I hold a lot of tension in my face and I don't think that helps. The shooting pains down your leg are similar to what I get and it's awful. I do yoga for sciatica, have lots of v hot baths and use ibuprofen gel. That seems to help. In bed I stuff a pillow between my knees to try to make some space around my lower spine. I do hope you feel a bit better soon.

Same re pain. They can do anything practically. I don't know what you wanted, and neither does he. Because you said you 'no' when he asked. No one is a mind reader.

Your husband is focusing on practicalities. Realistically there is not much he can do, and presumably he has to get up in the morning to go to work. So you may want to cut him some slack.

I would suggest separate bedrooms. You'd both sleep better and be happier.

Also ask for a referral to a pain clinic.

He can't possibly understand unfortunately. I found getting up and not sitting in bed wallowing in the pain to be a slightly better solution. Numbing gels can have a slightly positive effect also.

I really feel for you, it's horrific. I was single at the time and actually I found it easier that there was no one to tell about the pain at 1am/3am/5am each night, it made me 'get on with it'. Not saying you should have to, I would speak to professionals as it has been impacting your life for such a long time. I waited too long to do this.

I am your DH in this scenario.

My DH has arthritis and PMR. He is in constant pain, especially at night and first thing in the morning and I am very sympathetic and do what I can to be as supportive and proactive as I can.

I appreciate it must be crap to live his life like this.

But don't underestimate the drain it has on me.

To be constantly sympathetic, upbeat, to listen to the same complaints, to have to consider DH and his pain whenever I want to suggest doing something. DH is very good and I have had a couple of breaks away this year with family and friends, but even that comes with the worry of how he will be without me there (he was fine, of course he was).

I don't think your DH did anything wrong. He will support you better if he is in a good place mentally, which includes getting decent amounts of sleep.

So I hugely sympathise with you, but as long as your DH is generally supportive and caring, then give him a break and let him have his sleep if there is nothing practical he can do.