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DH coping with my Fibromyalgia.

(8 Posts)
LauLauLemon Fri 24-Jun-11 11:14:37

I've been diagnosed with Fibromyalgia and DH is finding it difficult to cope with. I've had the condition since my mid-teens and only now it has been fully diagnosed. I also have Osteoarthritis and Borderline Personality Disorder.

On my good days I treat myself like Wonder Woman and try to make up for all the things I can't do normally but on my bad days I can barely move. DH is great when it comes to our DD's (3 and 7 months) and pulls his weight with the housework and cooking but sometimes he resents me, I can see it. He'll do things begrudgingly but on my good days will help out with a smile and shows he loves me. Sometimes it feels like he only shows me he loves me when he thinks I'm getting better.

I don't sleep well and sometimes I sleep in quite late and he gets up with the DD's but it's worrying him that when he goes back to work I won't b we able to cope. We have no family willing to help us out.

I've tried to help DH understand and even.on my worst days I make sure to pull my weight but I pay for it. DH is out of work, money is tight since I work freelance and I know not being chosen for jobs is upsetting him.

Does anyone have any experience with helping someone understand a condition? He loves me and constantly shows he cares except when.I'm in pain and low where he just seems pissed off. Am I overreacting and is this normal? There's no physical or emotional abuse or neglect, I just want to help him come to terms with the fact that there's every chance I'll get worse, not better, and I'm only 22.

tribpot Fri 24-Jun-11 11:35:30

It's probably going to take me a number of posts to get out everything I want to say in reply to you so bear with me! My dh has fibromyalgia, he was (sort of) diagnosed about 7 years ago. We were in our mid-thirties then (obviously I still am at <cough>39 wink)

On my good days I treat myself like Wonder Woman and try to make up for all the things I can't do normally but on my bad days I can barely move.

You are making your bad days worse by overdoing it on your good days, is my assessment of that. Are you seeing/have you seen an occupational therapist? Do you try and pace yourself? Do you feel you have to try and be Wonder Woman on your good days to make up for the bad days? You really don't, you know.

sometimes he resents me, I can see it.
Yes. I think we all do, to some extent (us carers I mean). Being ill is tough and being a carer is tough, and most [normal] people just frankly do not get it. Which makes it very lonely for you, very lonely for him - and then add in two small children and it's an incredibly tough and isolating situation. So I don't say he may resent you sometimes to make you feel bad (and particularly not to make you feel guilty) - I think what he resents, certainly what I resent - is the illness that makes life so hard for us all.

I don't sleep well and sometimes I sleep in quite late and he gets up with the DD's but it's worrying him that when he goes back to work I won't b we able to cope. We have no family willing to help us out.

This could definitely be difficult. My dh coped with ds when he was little but there was only one of him and ds went to nursery part-time when he was 2 and a half. I also have a very understanding employer. So trying to get some of your sleep issues addressed would be very beneficial. My dh takes amitriptyline (among many other things) partly to manage the pain at night to make it easier for him to sleep. (EasiER, not easy!). Getting going in the morning is notoriously difficult for fibro sufferers, have you ever read this book?. Well worth a look. This one is the best all-round book I've found, if you don't already have it.

More in a minute but I want to try and think what I want to say. You're both living with an incredibly stressful and demanding set of circumstances at the moment, just getting through one day to the next is a major achievement!

LauLauLemon Fri 24-Jun-11 12:51:50

I do overcompensate on my good days and in turn it makes me worse. I know I should take it easier but I can't help but feel guilty when the girls need things and DH is tired too so I push myself to help more. DH has told me to relax a bit and this is my issue, not his. I do need to slow down but I don't know how.

I resent my illness too so I can't imagine how DH feels when he doesn't fully understand. We are very much in love and we're under a lot of pressure from all sides so while I have no doubt that our relationship will survive and grow stronger, I want DH to be happy as well as in love and content iyswim?

I have Amitryptaline as a pain reliever and sedative but I find I'm groggy in the mornings and unless I'm physically shaken it's a mean feat to wake up after taking one. It does help me to feel more rested after the grogginess fades but the pain is still there.

Any more advice would be fabulous. Your post was great.

garlicnutter Fri 24-Jun-11 13:26:28

LauLau, I won't be able to give you such good advice as above - I'm posting out of sympathy, really, for both of you.

I have ME/CFS - not as painful as your condition, by a long stretch, but debilitating in the same ways. I must reinforce what tribpot says: doing it all on a good day and then, as you say, paying for it is called a "push-crash cycle" and will prevent you from making any recovery.

The hardest part is acceptance. I have resented my condition, tried not to have it, to 'fight' it, etc until I finally grasped that I was basically fighting myself (which is probably how I got it in the first place, but that's another thread!) Read up on your condition as much as you can, and embrace any self-acceptance therapies you can handle. We are all advised to practise daily meditation (it's more profoundly relaxing than reading, etc). I use a mindfulness meditation CD.

There will be a dedicated team somewhere, with an occupational therapist and a counsellor. Mine are fantastic but it took TWO YEARS of asking my GP to get a referral. It was a locum who eventually referred me; now I ask when she'll next be in and make my appointments with her.

My counsellor tells me that people with this, who have young children, usually need their partner to give up work. That obviously adds to their general stress levels. Please take this seriously - you are ill, and will need to devote much of your life to recovering. As far as you can, put support plans in place: can you afford someone to come in a few hours a day, just to help out, when DH is back at work?

Sending you both my best wishes and plenty of vitamins B & C!

perfumedlife Fri 24-Jun-11 14:29:44

Hi LauLauLemon, I have fibromyalgia too and sometimes feel it puts a dreadful strain on my marriage. DH is wonderful, never complains, but when I get really bad days and cry, it seems to floor him. He can't cope with not being able to 'fix' me or make it go away.

What I will say is, I took Amatriptyline for three years, very low dose but felt the cost was too high. Getting ds to school each morning was like a real hurdle, I don't know how I did it. I came off it completely two months ago and have never felt better. I actually feel it made the fibro feel worse than it was, the constant tiredness and forgetfulness. Granted, I have an issue getting to sleep now but my gp is willing to give me something like zopiclone on an as and when basis. It may be worth you trying a different drug, Amatriptyline doesn't suit everyone, lots of fibro sufferers become highly sensitive to the meds and react, even after years on them.

There is good advice on the Health forum here too.

I second the advice about not doing too much on your good days, I learned that the hard way. x

DoesItWearingWellies Fri 24-Jun-11 16:11:49

I'm not sure that I have anything helpful to say about making your husband understand the nature of your FM, but I have it and have had it since I was 9. I still have my flare-ups, only they are not as frequent, nor do they last as long, plus I feel a whole lot better about myself mentally as I've found some things that have helped me.

Please see about going to a physiotherapist who specialises in either neuro or rheumo physio and have them assess your neck. I had three vertebrae in my neck that weren't aligned properly, including my axis. You might have to go twice a week for 8 weeks for the muscles in your neck to develop a new "memory" and stop pulling the vertebrae into the position they are used to. I now go back to see mine when my neck feels tight, so perhaps once a fortnight but sometimes longer.

Also, try to cut out gluten and dairy from your diet. I felt immensely better after doing this, and although it takes some getting used to (especially as gluten free bread is NOTHING like proper bread) it's a very do-able diet. I much prefer soya milk in my latte as it's creamier. If you find it too hard/expensive to do both gluten and dairy free, I've found that wheat is the lesser of two evils and staying dairy free is better than gluten free.

It might be worth mentioning to your doctor that you want to try Pregabalin (aka Lyrica). I was fed up with not being able to go to uni and found this helped a lot, bringing my pain levels down drastically, but it might take a while to get the dosage high enough. I'm not sure if you're breast feeding atm and the implications it might have. I was on the highest dose of Amatryptaline the Dr was happy with me being on at 11, but I felt it wasn't working to help my sleep nor my pain, so I asked to be taken off it. I didn't find I slept any worse IYSWIM off it and found it easier to get going in the morning.

I would also like to agree with the other posters, don't do too much on your good days as you will only end up paying for it. You have to gradually (and I really do mean gradually - think months rather than weeks) build up your activity levels. Learn how far you can push yourself without it causing a flare-up and don't go any further. Also, as bad as you may feel not being able to help out, try not to "keep up" when you are having a flare-up but do try to keep moving, even if it's just forcing yourself to get out of bed and walk to the sofa, as I've found that lying in bed only seems to make me seize up and make the pain worse.

If you can, try gentle swimming (about 15 mins in the pool, gentle lengths) once a week for 6 weeks, the perhaps twice a week and see how you get on. I would recommend avoiding breast stroke if you do have the vertebrae issue as you lift your head out of the water at a detrimental angle, and to swim with goggles so you can keep your back and neck in a straight line.

garlicnutter Fri 24-Jun-11 16:19:14

Good points, Wellies. Some towns have saline baths; they're great for arthritic conditions as you can do the motion without the effort iyswim. My mum's also getting a lot of benefit from Pilates - not sure how much it would help with the more generalised pain of fibromyalgia, though?

SchrodingersMew Fri 24-Jun-11 17:03:45

I PM'd you OP, I hadn't realise before I did though someone had already suggested Pregabalin!

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