Cries of pain

All about caring
1

Hi everyone,

I’m not sure if this is the right board to post this on because I’m still new to the site. I recently started caring for my partner who has fibromyalgia which has recently become much worse and made them not able to work; we’re 30 & 29 respectively. They’ve got a prescription from the GP for antidepressants which are supposed to help with pain but they just started, so those will hopefully kick in a bit more in a few weeks, and we’re on a waiting list for physiotherapy so there’s that, but basically they are in pain most of the time and there doesn’t seem to be a lot medically that can be done.

The problem is that during this time they often make cries of pain or say “it hurts!” or things like that over and over. I don’t know what I’m supposed to do when this happens. If they ask for something specific I’m all over that, and sometimes I can suggest things that might make it better (meds, ice, heat, change of position, etc. etc. etc.), but then I think maybe I’m making it worse by annoying them with this constant stream of suggestions and I should let them tell me what they need. And often even after I’ve gone through the whole list of things that might help, they are still crying out in pain every few minutes.

It’s very emotional for me because I feel: (a) distressed and wishing they weren’t in pain; (b) useless that for not being able to help; (c) annoyed because it’s constant and they know I can’t do anything about it so why are they telling me over and over?; (d) guilty because I know it’s not their fault they are in pain and complaining maybe relieves their feelings and they don’t have to suffer in silence; and (e) worried about what the rest of our lives are going to be like with this awful illness. I can’t think it’s mentally healthy for me to be feeling all that the majority of my waking hours, and it also distracts me from things I need to be doing for myself, for my work (I’m self-employed and work mainly from home, especially at the moment), and for us, like cooking and cleaning.

So what can I do about it? Do I just need to change my mindset and stop thinking/feeling all this? If anyone else has had this experience, do you find you get used to it? I don’t want to become numb to my partner’s pain but I also want to sustain my ability to be there for them, given that we are going to be living with this, and I worry how I will cope.

Thank you in advance, any advice is greatly appreciated

Aly xx

2

I too have fibromyalgia, i am a male which is rare, and i am an unpaid carer to my wife who also has fibromyalgia so we have a lot of experience the both of us.

Fibromyalgia does hurt a lot, constant chronic pain and yes you can get spasms of pain, you can be sat watching tv or move wrong then you get a big jolt of pain, its horrible.

The average GP just doesn’t understand fibromyalgia, they would if they had it, is your partner seeing a rheumatologist and seeing the pain clinic will help as well.
You cannot fully cure the pain by meds, ice pack etc, but it does relieve the pain a bit.
Pain is a response to tell you somethings wrong with your body, you put hand on a hot hob, you get pain signals shooting to your brain. Or you sprain a muscle you get pain
But with fibromyalgia there is nothing wrong with your body, its incorrect pain signals, the body is saying it is in pain but its not.

The anti depressants will help reduce nerve pain, dampen down the signals but don’t cure the pain but manage it.

Therapy may help you both come to terms with fibromyalgia, its a major life change, but its not fatal just very nasty.

Ask about the pain clinic, most hospitals will have one, they will teach you both how to manage the pain, relaxation helps, not getting too stressed out helps, stress makes the pain worse.

Buy a few books about fibromyalgia, read up about it, ask about support groups where you can meet other people in the same position as you can, they can help, talking about it helps.
But don’t believe that it can be cured by doing this that or another, there are so many myths and incorrect information and unfortunately scammers who will promise cures and take your money.

It’s an invisible illness and no one understands you cannot see fibromyalgia and it is difficult for other people to understand it.
But it is a real illness, a real condition.

i hope all the above helps if you have any questions get back to me.

3

Hey,
I really feel for you. My mum, who has terminal cancer and a bunch of other issues due to a transplant and the rest of the cancer treatment, says “I can’t, I can’t, I can’t” over and over and over again. Sometimes peppered with “just make it stop” etc. It’s horrendous but tbh, I’ve been listening to it like a soundtrack for three years and I just zone out of it now. I know that it’s partly her way of coping - to vocalise the discomfort - whereas someone else, for example, might grit their teeth or whatever. I’ve learned to differentiate between when she’s doing it because she’s miserable and needs to vocalise that fact, versus when she actually needs me to do something. I have no knowledge of fibromyalgia so sorry if that’s not useful. I think the only way to stay sane with these soundtracks happening from someone we love is to learn how to be beside them in their pain, rather than wanting to solve it- we sadly can’t, aside from the obvious drugs that your partner is no doubt on / aware of. It’s a lesson in humility, for sure, and how much loving someone can be painful. Anyway, you’re not alone with this.
E

4

Does he use PEMF? I heard a few people recommend it for so I thought you might have some experience.

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5

I look after someone who has this pain too. I feel exactly the same when the pain is extreme, useless, guilty, helpless etc.

He takes extra medication when it is bad and I provide two hot water bottles and a blanket if he wants one, then I leave the room.

Some people like the distraction of someone talking and being there, others just find that annoying rather than a comforting thing. Try to work out which one helps.

Very distressing situation indeed.