Supporting husband with Fibromyalgia
teaandcakesagoodmummakes · 27/12/2021 13:02
Hi, I really need a hand hold or some advice from carers of someone with Fibromyalgia or currently living with the condition themselves. My husband has been suffering with chronic pain for three years and was diagnosed with Fibromyalgia 18 months ago. He has been unemployed for three years due to this and is in receipt of limited capability for work and PIP. I worked full time until October and am begging an NHS masters training course in January to become a Speech and Language Therapist ( better progression and salary which we will need as a family).
Anyway, I am struggling to support my husband, he is so irritable with me and our two children ( age 11 and 14). I understand he is in pain and we try to not upset him but even the slightest thing sets him off. This morning it was the fact that the dishwasher tablet container did not open properly because I had placed the tray in front of it and he has told me not to do this repeatedly. My daughter didn't clean something up properly but had tried. He said he feels he is babysitting us all and can't get better because he has to be on alert all the time and can't switch off as we all do things wrong. I just find it hard to try and do everything perfectly and manage the general household tasks, dog walking, etc. I also suffer with poor mental health and tryong to stay on top of that to be in a good place to support everyone else. When I mention that to him he says I am making it about myself and don't understand how he feels. I disagree with that as I have tried everything I can to support him, listening, helping with doctors and hospital appointments, applying for universal credit, sourcing alternative pain treatments and taking him to the therapies ( McTimoney spinal adjustment, physiokey etc). He has been seeing a psychologist weekly due to doctor thinking his illness could have a root cause from childhood trauma and bereavement. I have supported him with this and fully understand the impact it may have had on him. He says he is working through things and I can see glimmers of his former self returning after sessions. I know it's going to be a long process to recovery and he may not do and experience pain for the rest of his life. I am helping the best I can to support him to manage his symptoms, researching supplements such as magnesium which may help and enrolling him into the health spa as I thought the jacuzzi may help with his muscle and joint pain and swimming could help. He has tried it but said it doesn't work.
This probably isn't coming out right at all as my head is swimming and I feel like everything is closing in around me. He is currently not talking to me as I said I felt he was trying to micro manage my every move and is always critical of how I've done tasks or if I've said to wrong thing when training our puppy ( I do make mistakes). He said I'm making it hard work for him as when I am back at work and uni he wont he able to cope with the dog if he doesn't listen because I've messed up the training. I take the dog out for a walk every morning to wear him out and generally he is well behaved, toilet trained etc, he just needs behaviours re-enforcing, playing with etc. In hindsight we probably shouldn't have got him but my husband said he was ready for one and could cope and that informed our decision. I take him to doggy daycare every Friday to give him a rest too.
Family don't really understand, they say " oh is he not better yet?, When do you think he will go back to work?" etc. I've tried talking to them but they don't get it or say well he needs to move on. It's not that easy though for him. I do think perhaps a part time job may help him mentally and have suggested this but he he said he isn't ready and would struggle with the pain and fatigue.
He has withdrawn from pregabalin, butec, duloxetine and has suffered insomnia for the past month. He decided to come off all meds as he felt he needed to see what the pain was like without them. He felt a reduction of symptoms after block of physiokey. He reduced the doses correctly and said he is managing the pain but any slight stress or tension in the house and he said his jaw and head hurts, he needs to lie down etc. I don't think he should have come off them. He is taking diazepam for sleep but they aren't really doing anything he said.
I honestly don't know how to support or help him and feel out marriage is under strain. I just feel my mood plummet around him and like I'm on eggshells constantly. If anyone has any advice to offer I would be appreciative as I know I can't feel what he is feeling from his perspective. Thanks
SparkleWhale · 27/12/2021 14:09
With exercise, it takes time to work. It really is a lifestyle change and not an immediate pain reducer. As someone who's suffered for years and only in the past two years been able to hold down a 'normal' looking life, swimming has been an absolute lifeline as has magnesium.
I came off all pain meds too. It's hard when you're figuring out your baseline pain but once you've done that, you must actively manage it and find ways to push through. For me, a good diet high in nutrients, supplements, daily movement (stretching, swimming etc) plus psychological help and being involved in mindfulness activities like journaling has helped me identify pain, triggers, and push through where I can and rest when needed.
This doesn't help you. You are doing everything you can to support him but he needs to become consistent in his efforts to support himself or he will forever rely on you to do everything and not simply pick up more of the slack when he needs it. It's definitely more of a psychological barrier to break than merely physical. There will be times when life looks like this but with proper management they can become less and less.
Has his counsellor considered anything along the lines of CBT for pain management?
teaandcakesagoodmummakes · 27/12/2021 15:26
Thankyou so much for your reply and I'm glad you have found what works for you. His psychologist has recommended CBT for when this course ends. He says he can't control his triggers as they are so no ingrained. I agree he needed to know his baseline pain level but not sure it's being managed. I just feel sad that this appears to be life at the moment. I just want us to all be happy.
Klinkerbell · 27/12/2021 15:42
I'm sorry OP, he just sounds like a dick to me who is enjoying using his illness as an excuse to bully. I've had fibro/eds for 30 years and I have never used it to be angry at others. In fact I avoid anger as much as possible as it created stress in my body and makes me feel worse. He needs to grow up and take responsibility for his illness and his behaviour. Honestly I wouldn't stay with him if he contiues, he will damage your family. There are many illnesses worse than fibro, I count myself lucky that this is my lot in life, and do my best to carry on and enjoy things as I can. Life is too short to live the way he is choosing.
doadeer · 27/12/2021 15:45
I have fibro and chronic pain - it's horrendously hard but I really really try to stay positive for my family as I would hate them to feel like you are.
One thing that helps me is to have mental stimulation - for me it's work (I can work on laptop from bed) but something that helps me feel I'm using my brain even when I'm so sore and tired.
There's no end point and it's hard not to feel desperately sad so I do empathise but he is being cruel and you deserve respect and him not being bad tempered.
HoardingSamphireSaurus · 27/12/2021 15:50
He's entirely enmeshed in it, isn't he? His life is fibromyalgia, so yours must be too. And yes, he is controlling you and the kids because he can, unlike the pain etc of fibro.
Can you feed into any part of his therapy sessions? If he will discuss is he might get to see how he is displacing his anger and irritation.
Other than that you really are allowed to be angry with him and to let him know why. His illness is not a free pass for shite behaviour.
gonnabeok · 27/12/2021 15:53
I've had fibro for 25 years and it did cause me to retire early, but I was never moody with it, fed up yes. I take strong co codymol for the pain.skme believe that cutting out dairy gluten make a big difference.
I have just started using CBD patches on the recommendation of another sufferer and my word what a difference! I would highly recommend. I used one on my very painful lower back and within 3 hours I felt no pain at all!
You need to be clear with your boundaries.Fibromyalgia is awful but not an excuse to bully others or make their lives a misery.
StormBaby · 27/12/2021 15:57
I think he’s revelling in it a bit, is that his personality type anyway? A bit histrionic? I’ve had chronic pain and fatigue since I was 20 years old and I absolutely refuse to let it determine what I can do with my life. I have worked full time in a physical job my entire adult life. The less I do, the worse I feel.
teaandcakesagoodmummakes · 27/12/2021 16:16
I think he has always had OCD tendencies which have worsened since being diagnosed. He likes things to be done in a certain way. I am not like that all so we are opposite in that way. Even before this it was a trigger but it's been magnified. Ive said before I feel like he is controlling me bit he thinks I'm mad and says he would never want to control me but I need to understand my actions affect him.
teaandcakesagoodmummakes · 27/12/2021 16:20
He has just brought the CBD patches after using the oil in small doses. I hope they can provide some relief for him too. I do try and have clear boundaries, it always seems to come back that it's me that is not helping or is hindering in some way. I'm not perfect and know I too can be irritable but it's so hard at the moment to try to remain positive. I start everyday thinking I'm not going to annoy him bit always end up doing exactly that and I don't mean to.
teaandcakesagoodmummakes · 27/12/2021 16:25
He is enmeshed in it, it has been a huge part of his and our lives for the past three years. Sometimes I think he might be better on his own for a while to deal with his health and behaviour. He has said he just needs quiet and to relax without things kicking off around him It isn't financially possible though for him to move out. With two kids ( one ASD, one ADHD) life is not relaxing the majority of the time. The kids can't do right for wrong. He used to be such a fun person, great daddy but has always had this controlling aspect. I know it's rooted in trauma and attachment from early childhood. I just don't think he wants to change his behaviour enough or he actually can't because he is so fixed on his way is the right way.
Bagelsandbrie · 27/12/2021 16:29
I can see both sides a little. I have lupus (and other conditions) and the pain is very similar to fibromyalgia so I’ve been told. He needs to get better pain relief. I have Cocodamol 30/500 and Tramadol (obviously I don’t take both together, I take the Cocodamol during the day and Tramadol to help me sleep at night). If he’s in chronic pain he really does need better pain management- for lots of people (like me) that really does mean stronger painkillers. I have a disabled son to care for and without the painkillers I simply cannot function.
I admit I can be quite grumpy. The thing about the tray in front of the dishwasher thing made me wince a bit because I know I can be a bit like that. I think it’s because when you’re battling with chronic pain another little thing to do / move can just seem like a mountain and it’s really irritating. Dh has a habit of leaving his shoes out just by the shoe rack and if I don’t look where I’m going I often trip up and it gives me the absolute rage - tripping up can cause me a lot of pain, it’s not just the “oh well that’s annoying” that most people would think. So I wonder if that’s where some of his annoyance is coming from. Sometimes I find it very difficult just being around other people. When I’m on my own I don’t feel pressure to behave a certain way and I know things will be where I left them etc. But of course that doesn’t work when you have a family!
I think I also at the part about his family not understanding things. I would be so annoyed about that if I were him. Did they not do their own reading about it?? I am on the highest rates of PIP indefinitely and I am probably never going to work again (haven’t worked for ten years now, used to hold a very senior marketing role). People banging on about me returning to work would just completely piss me off. Total lack of understanding.
I find I am angrier these days. I don’t mean to be but it’s hard not to be when you’re in pain and wondering why this is your lot in life. BUT saying that he shouldn’t take it out on you, it’s very hard from both sides.
teaandcakesagoodmummakes · 27/12/2021 16:40
Thanks for your perspective, you do sounds similar to him in a lot of ways. I know things I do must annoy him and he may think it's extra work. I think because I have to do so much around the house I am often rushing and so may not take the care he does. I also just dont see things the way he does but I am trying to but it's seems it's not enough. I can't explain it but I can be a bit scatterbrained at home but I think that's because my mind is on overload. Yes family are annoying, they thankfully havnt said that to him, just to me and I've told them it's not helpful. I havnt made him aware of their comments, I just added that to the thread to highlight the lack of support from family in general and to why I can't talk to them and am asking advice on an internet forum. I don't know anyone in real life with similar circumstances.
teaandcakesagoodmummakes · 27/12/2021 16:50
Klinkerbell- this is what I don't understand about it as I say when you get worked up it brings more pain and sets you back. To me he overreacts to the smallest of problems ( I know that's due to the pain). I try to emotion coach him in the moment and point out ways we can deal with it or ensure it doesn't happen again etc and he just says it will never change and we don't listen to him or want him to get better. We absolutley do! I say I can't do anymore and he says I'm not trying hard enough to change my behaviours which annoy him. I just can't do it, I guess we aren't compatible. I'm not a black and white person at all like he is. I don't think he is deliberately being horrible or enjoying himself though, he says he doesn't want to be like this.
Bagelsandbrie · 27/12/2021 17:07
Yes my dh says this as well. Sometimes we do need to be told. Sometimes I don’t even know I’m doing it.
Klinkerbell · 28/12/2021 16:59
I say I can't do anymore and he says I'm not trying hard enough to change my behaviours which annoy him. I just can't do it, I guess we aren't compatible. I'm not a black and white person at all like he is. I don't think he is deliberately being horrible or enjoying himself though, he says he doesn't want to be like this.
Please reread this part that you wrote. He is stating that YOU need to change and YOU are not doing enough to change your behaviour. He is blaming you for his poor behaviour, so he is unpleasant because you won't change
He will not address his own behaviour patterns, even though you say he doesn't want to be like this.
Please look after yourself and your DC this is no way to live.
To comment on this thread you need to create a Mumsnet account.