I was wondering if I could get peoples advice. I’ve been with my partner for 8 years and he’s had his chronic pain for 7 years. He used to be able to sleep in the same bed as me (but wake me up in the night if his pain was bad)
But now he can’t even sleep in the same bed as me, as his pain has got worse over the years he’s ended up not being able to sleep in the same house as me, never mind the same bed!
He now goes to his parents most nights to sleep, as they have a stair lift and it’s easier for him to get up the stairs than it is at home (we live in a small 2 bed terrace house, where the stairs are steep and thin so are unable to have a stair lift installed)
I try my best to understand as much as I can, but I just can’t help but feel alone & unwanted because I go to bed alone, and wake up alone. This is putting a strain on our relationship because I’ve looked for the attention that I should get from my partner elsewhere (which isn’t good I know!)
I just feel like we’re stuck in a rut - I bought a fold up bed to put in our living room so that my partner could stay at home on a night, but sadly his pain gets worse throughout the night and he ends up going to his parents like he would normally.
He’s said he doesn’t want to sleep through the day to catch up on sleep bruise he wants to spend time with me (and with past issues he’s worried things would repeat themselves - which neither of us want)
I just want to try and be understanding with it all, and not cause any more problems for us (but with the loneliness and sleeping arrangements I just feel like we’re in a downward spiral.
How can I sort things?
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LuLu18
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Does his pain go when he's at his parents ? If not then why is he going apart from using the stair lift. You say you bought a fold up bed, do you mean a comfortable sofa bed or literally a fold up camp bed type which would cause pain in anyone ! A good double sofa bed with a proper mattress would surely solve the problem as you could both sleep downstairs. Maybe a trip to the GP would also help so he could get his pain under control.
His pain doesn’t go away when he’s at his parents, it varies on how much sleep he gets depending on if he can get his back, hip or legs comfy.
He doesn’t usually manage to get some sleep until 3-6am, so his reasoning for being at his parents is so I can get a good block of sleep to sort out son out in the morning for the school run.
Have you thought about moving house (I know easier said than done) but that would surely help or why can’t you both move in with his parents? It sounds like he’s causing more pain for himself going back and forth all the time.
Has his doctor not given him any suggestions?
Why don’t you move your actual bed downstairs to the living room or buy a bigger bed and put it in the living room then it’s downstairs. A fold away bed will only make anyone worse even a good sofa bed doesn’t have the support for people with back/shoulder/hip/leg pain etc
Have you actually spoken to him about this all??
I know how much it sucks feels lonely but when your in so much pain it’s a survival instinct to just want to do whatever makes you comfortable and releaves the pain even slightly.
We have discussed the option about moving house! But because we have a low income, we rely on benefits because I’m my partners carer. (Not many landlords accept people on benefits)
The doctor has just said the reasoning for his pain is ‘general wear and tear’ so how are you supposed to cope with that when all they do is give him medication that doesn’t make the pain go away.
I’ve spoke to him about all this, but only recently when we’ve been having problems because of me
Well maybe you need to take some time away and think about what you really want, from what I love read maybe he needs some space and time away and if his parents is comfortable for him to stay and sleep there then maybe he should move back in with them either with or without you?
Having a partner in chronic pain is one of the hardest jobs going but if you love them it doesn’t matter and you work through it and find a way to make it better for both of you. If you don’t feel like that is something you can deal with in the long run without going and looking for comfort elsewhere then I would say you need to re-evaluate the relationship and sit and talk to him about what he wants and how he feels
• in reply to
I can’t walk up or down stairs at all because of my cronic pain problem. We can’t move either because of landlords and benefits etc, so I have a bed in the living room now so i can sleep and still be with everyone else. There are always ways around things it’s just actually putting a plan together.
Correct me if I’m wrong but you sound unsure as to whether you actually want to be together and that things that have happened in the past aren’t helping
Has he had a referral to a rheumatologist or Orthopaedic consultant ? A GP saying it's just wear and tear isn't good enough, he needs to find a way forward with how he copes with the pain, he shouldn't just give up and accept it without exploring all options.
Has he had scans, X-rays, blood tests to see if there is a reason for this pain ? Wear and tear shouldn't cause so much pain and for it be so widespread just doesn't sound right.
Rheumatoid Arthritis is one possibility, my daughters partner has this and he's about as bad as it can get yet with the right medication he lives a normal life and he's a farmer so doing a very physical job.
I think you need to have a serious talk with your partner and possibly his parents as well.
Yeah his doctor need to be doing a lot more than he is I think and those two tablets together aren’t a good combo especially if he’s in that much pain x
He’s been referred to the pain clinic before (by a different go practice a few years ago) and the pain clinic did nothing but send letters cancelling appointments because the people he needed to see were always ill. Then they discharged him despite never seeing him.
There are standing stairlifts available for narrow staircases so that problem maybe fixable, Dolphin Mobility are one company that do them but I'm sure there are others, worth getting someone round to look.
I am sad to listen to your post but there is clearly a lot of underlying problems ...probably to do with his pain.
He is lucky if you like to have somewhere else to go. And lucky that his Mum will take him as and when he wants. Most in chronic pain don't have that.
It is hard on both of you. Hard for him to have that relentless day after day pain. Hard for you as you feel you aren't getting the attention you need.
Both of you have to make changes to your lives. Acceptance is the biggest part and many never get there..Adjustments to what either of you can do.
I have been my husband's carer for over 20 years yet have never slept in different beds no matter how bad. And believe me he is deteriorating weekly.
Talking to each other isn't working. You need more help to work this out. Presume you do want to work it out? Ask your GP for a referral to a pain clinic and go together. You will learn much about living with a chronic pain partner. It can be a real eye opener. They will discuss his meds. What works and what doesn't. Alternative therapies. And him not running home to Mum every verse end.
here are Carer groups too but leave that for the moment.
Hi, thank you for your reply. My partner got referred to the pain clinic some time ago, but nothing ever came from it as they didn’t really know what to do in regards to my partner and his pain. So he just got sent back to the GP
He has constant pain in his legs, knees and ankles. His lower back dips in (in a C shape) making his stomach push out. He also has muscle wastage in his right leg because he doesn’t use it as much as he should. He has a knee reconstruction at 14 after an accident so the scar on his leg is horrendous.
His ankles swell at night, and it constantly feels like his back is burning (but he also gets sharp shooting pains down his legs & back)
Oh god that’s outragous they’ve not done more for him, he 100% needs to either change doctor or demand to see a different pain team. The whole point of the pain team is to work along side other specialists and to try out different methods of pain relief I’m very surprised they said that to him. He shouldn’t have to live in that much pain and the doctor do nothing x
The doctors we’ve seen don’t really know the root cause of his pain. They’ve said it MAY be stemming from the knee reconstruction but they’re not 100% sure. With all the scans he’s had coming back clear they’re not really looking to do anything else - which is really frustrating!
He wants the help, he wants the pain sorting, but doesn’t know what else to do .
I’m going to sound silly, but what is CRPS? I’ve not heard of it before
Thank you Bananas5! I’ve read the info in the link and it’s ringing a lot of bells, I’ll mention this to my partner and see what he says about trying to show it to doctors
The lack of sleep is probably one of the factors driving his pain. He needs to catch up on this in order to give you quality time rather than just being present time. Are you feeling alone and unwanted because your partners pain has changed his mode of attention?
Is your partner feeling guilty because he cannot give you what he thinks you need? Such guilt does not exist at his parent's house.
You need to recharge your worthwhile batteries. Meeting other people at a massage class, yoga class and networking with them can give you the feelgood factor to give back to your partner.
Also, they don't necessarily *need* to know the cause of his pain in order to treat him! They can try other meds (opiates, NSAIDS, etc., as well as sleeping pills). Pacing, relaxation exercises, pain psychology, etc. would almost certainly help. See if he can be referred to a pain management programme?
It also sounds like you two need to have some couples counseling. Infidelity (physical or emotional) can be extremely difficult to deal with, and then there's the chronic pain to deal with too! It'd be great if you could find a couples counsellor who also understands chronic pain, but I doubt there are many. Maybe try Relate for reasonably-priced relationship therapy?
I completely understand where your partner is coming from as I am currently suffering chronic pain that doctors have no clue about.
I've been on the same medications as he is on now to no affect, which doctors were baffled by and couldn't understand and so kept up the dosage. You see the body adapts in many ways and starts to adapt to medication aswell but it never adapts to pain. I've had bad pains in my glutes when sitting for years and it drove me to end more than one relationship due to thinking the issues were with the other person. Yet it was the pain that had completely changed my view on life, it made me into someone I wish noone to become. All that I could think about was how lucky other people were and that noone understood what I was going through and it felt patronising when people tried to help.
ATM I'm on sleeping tablets as the pain for me was so bad that I woke up several times in the night. Since taking the sleeping tablets and getting decent sleep I've now got a very active social life and things between my current GF are really good, although she has been amazing through all of this aswell.
The doctors issue was something I've been going through, in honesty they are mostly overworked and stretch to the max, sound familiar ? When you work in those conditions you stop caring and some want to do the bare minimum. I actually had to go back to the doctors several times to complain before I got a doctor who would take me seriously. Have you considered going in to your doctors and making a complaint to the surgery's management ? This will often highlight the failure in your partner's treatment and get them to take his condition more seriously. You can do this over the phone but it's best to go in and talk to them, your partner being there would help but is not essential as I assume you would have more than a few pissed off words to tell them and by all means let them have it when they listen !!
I do hope things improve for you and your partner but I would strongly recommend he try sleeping tablets as for someone who is going through the same chronic pain it's given me my old life back and it's changed who I am back to who I recognize from before the pain.
Thank you for your comment. We were speaking about the possibility of sleeping pills last nights. My partner said himself that the only concern with him being out on sleeping pills would be how addictive they can be (he’s had issues when he was a teenager with addiction) - I also echoed this concern to him as well.
I understand the concern with the historic additive trait they went through when they were younger but you have to look at the current situation and how it affects the individual and others around them.
I'd say that they are not addictive and should only be used as a means to and end while doctors can figure out what is causing the pain, which is why I'm on them at this time.
I have gone through a period of not having them after being on the for 6 weeks and my body adjusted eventually. But I wouldn't be concerned with this as once the problem is identified and resolved coming off them will be a short pain period and then the body adjusts and settles over time. There are also a bunch or natural remedies for sleep issues and I'd recommend reading a book called Sleep Smarter by Shawn Stevenson, loads of great tips in there that helped me sleep naturally. I'd also suggest drinking a tea called Soothing Caramel Bedtime by a company called Yogi, this was recommended by a well known Author called Tim Ferris, it had nearly the same affect as taking mild sleeping pills when I took it, strongly recommend. You can also try taking Zinc + Magnesium supplements which will aid the body in healing, I assume the pain must be caused by something that's not healed plus missing out on sleep actually inhibits the body's natural healing process through the night, this is why it's important that your partner seeks solution to improve sleep.
Give all those a go and your partner should start to get better sleep, I understand they come at a cost and it would be cheaper to get sleeping pills but if something can help the cost should not matter
That book should help you to obtain the knowledge to get better sleep but if you need any other tips from someone who has been through it before let me know.
I drink the yogi bedtime tea and it’s sooo nice I have 2 just before I go to sleep a while ago it was helping me drift off to sleep if I wasn’t having horrendous pain st the time , alongside all my other tablets x
Counseling would help you sort things out and if he saw someone it might even alleviate his pain greatly. Theres a lot going on your both avoiding i think.
I’m very sad to hear your story. Firstly I think you should be praised for your help and support you have given your partner.
Everyone has given wonderful advice which I agree with. I just wanted to add something which may or may not be helpful.
I often go to my parents and seek there comfort when I’m in pain. I’m sure there is some psychological explanation why I seek their support when I’m in pain.
My ex- partner would often get frustrated at my decisions to go to my parents. In hindsight I should have talked more about how I felt but I was to consumed in my pain and fatigue.
Anyway not sure if helpful to you but I thought I would share just incase.
I have back, hip and leg pain. It sounds like magnesium deficiency. If you are in the UK, the NHS blood test for this is a serum whole blood test which is useless. The test that is more accurate is a red blood cell test. The NHS won't refer you to have this, you would need to pay at a BMI or similar hospital. I've suggested a better option below as i appreciate these tests are expensive.
For 6 years my GP'S and specialist couldn't find anything wrong until I researched and realised what the problem was myself.
A better way would be a magnesium flake bath before bed to see if that reduced the pain. Magnesium defficiency tends to cause muscle pain, ticks and buzzing in the muscles. The pain is muscle spasm.
Read about vit D deficiency too.
Good luck. Let me know how you both get on. My GP was at a complete loss.
You can overdose on vitamins if you aren’t careful and you need to know your levels and have them read by a proper doctor.
My doctor did my vitamin levels and I had a vitamin D deficiency I now take a very high dose twice a week and it did nothing for my pain or me except stop my hair falling out.
I used a special magnesium pain oil at night again it did nothing for my pain my joints my muscles nothing.
It is worth getting checked out but not worth paying lots to go and do the same test a docto or consultant such as a rheumatologist will do
Yes this is very true but not to say this couple should throw the towel in before trying. A GP referral to rheumatology is a good idea. They may well have specialised tests. I find out soon. Hoping so.
Also, high dose vit D leaches magnesium from your soft tissue, bones etc sometimes making you feel worse because magnesium is used to convert vit D to a form the body can use. The higher the dose of vit d, the more magnesium used to convert it, the worse you feel. A more gradual approach on a daily low dose vit d to build up stores would be more appropriate. Obviously once you are tested if you are low.
I wasn't suggesting they pay for specialist tests, I was explaining how the system works having had the experience. That's why I also suggested magnesium baths to see if they made a difference - as an indicator of a deficiency plus there can be a long wait for referrals especially when you are in pain so mag baths may help. Worth a punt to help save a relationship as relatively cheap and simple. And yes speak to your gp before trying.
Explain to gp if a blood test has already been done for magnesium and it was a whole blood serum test the results will most likely be normal as the body pulls magnesium out of soft tissue, bones and the brain putting it in your blood to keep your heart going when you are deficient so you stay alive...while the rest of you suffers. Prob best not to say the last bit but it is true about the rest of you suffering. My GP didnt know.
I’m on the right doseage for me and my deficiency my GP my rheumatologist and nurse mum all manage my levels for everything so they are now correct but still no improvement. What works for others doesn’t always work for you.
But yes he needs his bloods doing although I’m probably sure after 7 years he’s had that done.
Rheumatologist would help the most if painteam and gp isn’t
Just to add, I had physio for 6 years and didnt respond to anything either and I now know it's because the body couldn't repair without the right nutrients. Only realised 4 months ago. When your dr tells you your tests are fine, you knock that off the list of possibilities. I've made mistakes trying to get levels up so I'm starting again from yesterday.
If Mg baths do help, there's also the spray for the middle of the night. Holland and Barrett sell all this.
Think how he feels ?
As someone with chronic pain I feel guilty and worthless that I can't have the relationship I did have with my partner. I feel like a burden.
On a positive side have you thought about a sofa bed? That way you can sleep in the same bed (if you want to)
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