So my husband was diagnosed with RA a couple of months ago and more recently (Monday in fact) was told that he has FM too.
He is in daily agony as you can all sympathise with but (as awful as it is to say given how he is suffering) home life is becoming unbearable.
Hubby is working full time - he's a carpenter so its hard graft day in day out - and is totally overdoing it.
It was his Rheumatologist who diagnosed the FM but apparently said there is nothing that can be done. I can't believe he would have said that so I am assuming hubby got it wrong.
I keep telling him to get a GP appointment, have offered to book it for him but he says he's just given up and doesn't care any more.
I suggested he have a look on this site - he won't.
I don't know what to say or do for him. He currently has a really bad flare up in his knee and can barely walk. How on earth he goes to work is beyond me.
Financially he cannot give up work - I have said we need to downsize and live off my wages when he has flare ups - he refuses to do this.
I know it's hard for him to take all this in, tonight he said he cannot face a future of being in chronic pain and effectively being disabled.
He's currently on Methotrexate which he takes once a week.
My husband is incredibly negative (and unlucky) anyway and I can't help but feel this is making the FM even worse.
He won't take antidepressants, he won't see a counsellor, he says he is in too much pain to exercise, despite me pointing out he needs to start off small with stretching. I've suggested he see a physio...he's considering this at least.
I just don't know what else to do. If I say nothing I feel like I'm turning my back but what else do I do?!
Help! Sorry for the long post!
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michb90
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Leave this site open so he can at least see it. He will see then that we are all in the same boat as he is. Hw really neeeds to see his gp and get some medical help as the way he is going he will be seriously depressed. Get some leaflets on fibro and leave them so he can read them. His rheumy is wrong they can treat fibro though sometimes i wonder how bad i would be without the drugs i take. You keep your chin up as it is all new to him and he wil think it is the end of the world,but it isn't. Downsizing might be a good idea darling. Big hugs from me.xxxx
Thanks Sylvi, I will keep trying to get him to have a read...he is one of those people who knows it all!! And is usually wrong, bless him lol.
I think I'm just going to get the house valued and see what happens.
We have a four year old daughter and she's seen him breaking down so much in front of her that I worry about the impact on her too.
I'll let him be, I'm trying to not bite when he's trying to provoke a response from me...usually he's trying to insinuate that he's a burden on us!! But he can become nasty too and has made me cry! It's all in the process I suppose, It's hard for me but nothing in comparison for him!!
I try to take drug holidays at times. I become in so much pain going in my 8th hour . Then it takes a long time to get it under control. I can't go without mine
Owe! That's a tough one... I may have to ponder on it to find anything useful to suggest!
Talking to the NRAS help line may help. Either one of you or both can do that.
Be sure to look after your own mental and physical health through this.
It sounds like he's hit overload and gone into survival mode - 'head down charge on and some how this will pass' kinda thing.
Maybe easing back yourself on the supporting information access like encouraging hubby to view this site might help (but keep using it yourself to help you through this difficult time) and switch to doing quiet random acts of kindness (running a warm bath, making a special tea kinda thing) might shift his approach over time.
Hopefully the MTX will step up a bit over the next month or so. Does he have access to a good NSAID like naproxen to help with pain? If he hasn't had one already he could ask for a general steroid injection to help settle things down - wether that is appropriate or not can depend on various factors and the GP/rheumatologist can advise on this... Catch 22 I realise there until hubby is ready to make an appointment.
I hope something in there will be of help
All the best
Ali
PS sorry I forgot to say 'welcome' to our merry band 😎
He's had spates of suicidal thoughts and all sorts. I don't really fully understand the diagnosis re the RA yet. The levels etc I mean, so I sill feel a bit useless!
I don't want to nag him to get help but at the same time want to give him a good shake to say you're not helping yourself!
we're off to Spain in a week or so, for just over 2 weeks. Hoping this will help a bit.
The man needs rest. As well as painkillers!!
Not sure what he's on...I can't keep up! I know he has pregnabolin (is that the right spelling?!) which is of course a steroid but in any event it hasn't helped at all sadly
I will be hanging around...as much as friends and family are willing to listen, their responses aren't usually helpful and they just don't understand.
Pregablin is for the fibro darling, the sun in spain will help his mood and you might be able to have some sensible conversations about his diagnosis and work out a stragety between you so you both can help each other.xxxxx
Sylvi, your replies are great......I read them and think "why can't I say things like that".......I'm not great at the 'random acts of kindness' that you suggest at times......so nice, so thoughtful.....I'm the more pragmatic type.....maybe a bit blunt and to the point.....maybe there is a place for both of us......I hope so. Anyhow keep it up darlin. Jean XXXX
As sufferers it is very hard to 'get your head round' this disease and it always seems to have a 'surprise' around the next corner so trying to explain to anybody else how you feel is very very difficult. You insist on doing everything like you always did and get tired and take it out on your nearest and dearest without meaning to. Acceptance of this is very difficult and can take some time. Perhaps talking to the NRAS helpline may help you or reading NRAS or arthritis research websites for information although it may be some time before your OH will. In terms of meds it is probably early days for them to have a good effect. Unfortunately this is not a quick fix disease and there may be many changes of dose level or drugs to find the right combination for your OH and there is no easy was to determine which is the right one. Many people once their meds are controlling the disease will lead a relatively normal life and have no need for these forums so this is not fully representative of the RD population. My children have grown up with me suffering but their Dad has been there for them - yes it can be difficult for them but they don't know any different. There is a standing joke if I have any steroids that everybody better stay out of my way for a couple of days but they know that once they have kicked in I am better for a while. Farm
I keep telling him its early days. It really has helped speaking with you all on here. It's not not to hear 'oh he's a man, of course he's in pain!!' or 'imagine if he had to go through childbirth!'.
I'm staying focused and positive, even if he isn't, someone has to eh?!!
You are being amazing! I think the worst thing about RA - for both the person with it & their family - is patience. No, scratch that. It's patience, acceptance and understanding. It's so difficult to comprehend what it means to have a chronic condition. My first reaction was "Okay, I have a diagnosis, now how do I fix it/get better?" I had to stop nursing my son to be able to start taking methotrexate, foolishly thinking that it would make me "all better" in weeks and I'd be able to be a better mom for my boys (both under 3 at the time). It didn't work that way at all! For 8 months every new day was the worst possible day of my life, and somehow the next day was always worse than that. I had many dark thoughts at the time and basically no one could show me the light at the end of the tunnel, they just offered sympathy.
It wasn't until I took time off work, saw a psychologist regularly and then added Humira to the mix that my life turned around. It's so hard to be patient with this disease (no one wants their life to change and everyone wants the drugs to work magically, right away). It's so hard to accept that you can't do "everything" like you used to, and that you have little control over what your future with RA will look like (you can learn to accept it though and find there's still room for happiness and joy). And I expect for your husband, it's even harder to ask for and accept help from others, especially his wife. Me? I basically dumped EVERYTHING on my husband and withdrew a lot from everything. I'm not proud of that time.
I explained to my boys that I have "bugs" in my body that hurt me. They will never go away, but sometimes they leave me alone. They seem to understand that and like to think about battling the bugs for mommy. When they see me in pain, they know it's the bugs that are making me sore, and they are gentle with me.
I've had enough good stretches now, since my diagnosis in January 2012 to be more relaxed about a flare. I know that it will pass and the flare generally means I just need to take better care of myself. Hopefully your husband will come to accept that too. His reaction is not uncommon, but I know it makes it very difficult for you. I think you are a wonderful wife to him, but I think he probably needs to take some time to process everything. I think it would likely help for him to see a psychologist and maybe take a medical leave from work while things are out of control, but it would probably help for that advice to come from a GP or rheumy.
Enjoy your holiday and best of luck to you. He's so lucky to have you!
It won't always be like that. Try not to withdraw too much, but do be aware of how much you are putting on your plate. I think a lot of us with autoimmune are used to pushing ourselves to the limits and the hardest thing is not being able to do anything! If you give yourself time to recover and then slowly add some things back in as you can handle them. It's by trying to do everything that you get to a point where you can do nothing, but if you are conscious about the effects activities are starting to have on you, you can start to pick and choose what you can handle and you will find yourself enjoying life again and enjoying what you *can* do. Gentle hugs!
Thank you. I need to do that. I'm very stubborn and was a pusher in the past. I did for everyone. Now I wait patiently for help . It's very hard on me. It's wonderful taking to this group . I no I'm not crazy and love the suport .
You definitely need to ask for help. A lot of people are willing, but don't know how to help, or what you need. Try to think of how it would be in their shoes - you know (pre-RA), you'd be helping everyone else, and happy to do so. I *hate* that I need help from my kids but *LOVE* how my 7-year old will see me struggling up the stairs and will run over to hold me up. I love how compassionate he is... and I think to myself, that's alright too
I live with my dad as well I help him , he is in a wheelchair..I just shop and cook for him. Take care of the house all as well as I can , days I feel real bad are more than good days. I have no help . Can't ask no one. It's just us. I wait if I need something from a relative or my daughter to be in town. Not whinning about just not happining. But I shall ask more , maybe a good friend or nephews . But your right ask for help
Okay, this is my last response because I don't want to beat a dead horse. My point to you is to get help. I don't care if you like asking for help or not. As much as you would help others if you could, others who CAN help, will happily do so if you ask. So rather than feeling low and pathetic and useless because you can't do everything you'd like to, ASK FOR HELP. Give people an opportunity to do a kindness towards you rather than shutting them out. They didn't ask for you to have RA, any more than you asked to have it! Share the load!! There's nothing more that I can say or do, so if you don't want to ask a friend/neighbour/local community organization for help, then get used to being able to do less and don't complain about not being able to do everything.
Spain - good it may just break the downward slide and, as Sylvi says may lift his mood. You do know that you can attend his medical appointments with him if he wants and that way he doesn't have relay information to you as you've got it first hand but of course he may not be comfortable with that for now. It would give you chance to ask questions as well and if they are phrased in a kind of 'I'm not sure that I've got so can you please explain... ' makes it clear the questions aren't because you don't think hubby is getting it and thus the pressure is off a bit for him as he can get the info he needs without the pressure of having to think of what he really needs to know right now and how to get the info out of his Drs.
Does hubby know that you are writing on here? If so tell him from Ali "you work darn hard, pay your taxes and national insurance so are entitled to NHS support when you need it including physio, pediatrist, orthotics, counsellor and anything else that will help!"
Yes, try to hang on to every scrap of positivity. I well remember that I was foul to my OH at the beginning - internally totally terrified about what future would bring but bit his head off at all his attempts to help, and didn't want to talk about it. Looking back it was fear, plain & simple. He may well have been having sneaky looks at the horror stories on the Internet, which might have made him feel worse too.
It is early days, as others have said, so things may well improve hugely pretty soon. But the best advice I have to offer is to be patient. Just like with other things in life he'll have to do the leg work himself so the best you can do is to provide quiet reassurance that you'll manage whatever happens. Don't do anything too drastic right now, like selling your house, as you could be completely back to normal in a year's time. But it won't be next week, or next month - sorry!
Anyway, welcome, and do come on here to unburden yourself as we know how miserable this can be. However for many of us there is light at the end of the tunnel. My life is now pretty normal again, and husband hugely relieved not to have to watch every word he says no doubt.
Oh hun, I know how scared you are. I can see how much you love your husband by the way you write. My advice to you is give him time to absorb his condition...he is confused and scared too.
I read take musinex, I started it. . I think it helps and muscle relaxers. I'm surviving..extended release. Takes away the pain in my legs and tiredness every 12 hours.
At a recent talk I went to, a local OT, she explained when we suffer from RA we go through the grief process- in just the same way as if we had a bereavement. We have lost the person we were and our hopes for the future. The grief process means first we feel anger, then depression before moving to acceptance. We all go through it, but at different rates and can go back to the beginning and have to start again when things don't go smoothly. Your husband is still in the very early stages of anger at what has happened to him. Hopefully the drugs will kick in soon and start to help.
I really believe that the more you understand about the disease the easier it is to deal with it. NRAS have so many helpful leaflets you can download.
Hopefully your husband will be able to see that there is a future, just may be a different one. The drugs do work for a lot of us. I was diagnosed in 2009 and thought the world was ending. I have now been in remission for 2 years
Yes, and I think acceptance is harder to get to because this is a changing condition: every time you think you've got your head round what's happening to you, something different happens, and you can't accept THAT until you're used to it!
I think that your husband is in the angry stage of this disease. I know I went through it. Until recently I thought nothing of lifting people up and putting them on a trolley into the back of an ambulance. Now I have difficulty in lifting a tray. It must be hard for him, he uses his hands to make his living and doesn't see a way forward. As others have said leave this site open, and hope that he understands that he is not alone. Or perhaps look at the leaflet section of the NRAS and see if there is anything that would help, if there is a leaflet, leave it in the loo. I hope that things start to turn positive.
Your post broke my heart, for all of you. The pain when not controlled is unrelenting and can make you depressed. He sounds a proud man who is losing control of his life, scared of not being able to be " the man of the house" . I know his GP cannot discuss certain things with you but I feel you must speak to him about your husbands depression. Also phone NRAS for advice, read up what you can from a reliable source. Please don't turn your back on him, at the moment he is his own worst enemy. His rheumatology team might speak to you or write to them, it sounds like he is not telling them the full picture. I've had RA and multiple other problems for over ten years and prior to diagnosis working long hours with no sleep and kept going till I broke down in front of my GP. Do let us know how you get on, I wish you all the love and luck for a brighter future. X
The only other thing I could say is could you speak to his friends or a close friend in confidence. He maybe able to talk to him man to man so he may open up to him and tell him his fears. It must be so hard.
I do hope the holiday helps. Warm Sun rest painkillers and no pressure of work. He may open up to you a little. Xx
A few months back I was in a dreadful state weepy, short tempered, and very low. I am not saying these days have completed gone but they are a hell of a lot better since joining this site and the support I have received .Methodrexate was not working for me and a latent TB spot on my lung prolonged my starting biologics ( I am still waiting for them but near the end, so hopefully will start on CIMZIA soon). So when i joined I was feeling very sorry for myself indeed.
On this site, I learnt there were others just like me, trying to deal with complications of the meds, living with flares, the struggle with my partner not quite getting it. Pain, the add on's RA brings. So much is shared on this forum about RA but with it, we also share happy times and funny times.
I feel if your husband totally refuses to join you should use it for support for yourself because it sounds like you need it. I also had a Lupus diagnoses a lot of years ago and i did what your husband seems to be doing went into denial, it did not work of course it just meant I stopped myself getting the support you needed.
From reading your post I would guess your husband is very independent but also very scared of a lifetime of living with a disability .NRSA do some very informative and helpful leaflets probably worth you ordering the hard copies and leave them around the house for your husband to glance at. He could also consider applying for PIP which may take some of the financial worries off him. I would also suggest you speak to the NRSA helpline yourself.
Maybe the physio will be a turning point if he sees something positive can be done it may hopefully help him see things in a less negative framework.
You are in an awful place at the minute but believe me your husband is in a far worse place. It really is definitely difficult to know what to advise to try to improve your situation.
Years ago I was in a bad place too and a wise old Scotsman told me "Jean either you stop or you will be stopped". He was right. Your poor husband is in denial I think, who could blame him? He just can't except what is happening to him. The prospect of not being able to work and all that that implies is, at present, just too much for him.
It is very early in his disease. I know many RD sufferers who are initially prescribe MTX and just get on with their lives, slightly modeified maybe but quite happy that they can do more or less what they have always done. This could very easily be you husband. Get MTX a chance to do its magic. If it doesn't work for him there are many other treatments available to him. The early days can be very confusing, bewildering and yes overwhelmingly depressing too.
If your husband refuses to seek the help he desperately needs then remember what I was told, stop or be stopped. He will too, it is simply impossible to continue unaided with two debilitating diseases. I don't know anything about FMother than what I've heard others have to say about it. I have a close friend who suffers from it and I know that it too can be very difficult to live with at times. It's a hard blow for a hard working, active man but as I've said many time on this site, he will adapt, you will adapt too. RD can be a long journey in some cases as there are no two sufferers the same.
Give the drugs a chance and take it from there. In the meant time support him as best you can, even if he makes that difficult at times, it's really all you can do for now. As others on here have said leave bits of info laying about the house, eventually pain will bring him to a standstill and he will do almost anything to bring relief........I do really hope it is soon, for both your sakes. Not a nice place for either of you. I wish you both all the very best and please come back and let us know how the two of you are getting on. Jean XX
Please read my response to Elainegaler. Nortriptyline is an antidepressant but in the 50 mg low dose, my internist simplistically explained it to me, "this is just enough at bed time to allow your muscles and tendons to relax and rest bc with FM they never get to rest." The only flare I've had of great degree was a horrendous response I had to 5 day Levofloxacin treatment for a sinus infection.
Wow you guys!! I am totally overwhelmed with the support and kind words from all of you!!
It's been a long day today (started work at 8am and didn't finish til 9.30pm) so am glad to finally be home!
Today has also been a better day for hubby. I totally backed off last night and just sympathised/responded when needed. I just let him volunteer when he wanted to talk about his condition.
Then today I got a text from him saying he'd booked an appointment with the GP for next week. I was thrilled!! The nagging had sunk in after all 😂
He also told me that he had been sleeping in a very tight knee support...how I hadn't realised he was sleeping in it was beyond me but there we go! Anyway, he was in agony with his leg, and it's swollen right up for days, told him not to wear the support last night, hey presto...swelling gone completely and pain almost disappears! He thought he was doing right for he pain in the knee wearing the support but clearly it wasn't helping. And sleeping in it?! I'l say no more!
His mood has been much lighter today, but he has been incredibly up and down over the last few weeks. It's days like today that give us both hope!
Anyway, we're shattered so off to bed now, your replies above are warming and reassuring.
Like I say, it gives me hope and lots of suggestions for me to work on!
I will be sticking around and if I can get him on board too it's a bonus!!!
I actually, on occasion use a knee support at night . It is a strap on and air can circulate in it. I find it very helpful. Because sometimes when in bed the bending of the knee to get out is excruciating and I do mean excruciating.
Michb90, it's OK to vent with your frustration, Chronic pain of any kind is awful. I feel it every day with mine. I stay frustrated with the pain I have. I've yet to find anything to help ease mine as,well. Yes it can be unbearable, some days mine is to painful and brings tears to my eyes. My arthritis is all over me from my shoulders to my feet, including my hands as,well. From what I'm told with mine I've been told mine is osteoarthritis bit I'm not convinced do to the way mine is acting. Good luck with your hubby and hopefully he'll give in and go see a doctor that can help him., best regards, J. Quinn
I am so sorry to hear that. Your story is so similar to mine other than hubby has been ill since Xmas. Although he can't work. RA and long distance lorry driving don't mix. So we live off SSP and my 3 days a week wages. I tried so hard to keep him positive. At same time I felt resentful that it was always me suggesting this and that. Encouraging him to exercise. To try and take little walks. Look at alternative remedies. Alternative diets. You name it I've looked into it. I eventually backed off. I realised that we've always had different approaches to life. I'm a glass half full person. Hubby is a glass half empty person. Just wish it had been me contracting RA. I don't have any answers for you. I know my hubby feels he's failed me. He wants to be the provider. Oh.boy the arguments we have!! I feel my best is never good enough. But we also try and talk about stuff. It's a hell of a thing to come to terms with it for both of you. And you are right there are things you could do like downsizing. Living off your wages and hubby taking over household stuff. We're now used to a limited income. It's not so bad. Ok there are no hols abroad now. No new cars. So what? Things will look up for you both. Getting his meds to suit is the buggy. Am aware I've rambled on. Sorry. Do take care and be kind to yourself. Your heart's in the right place. Hubby is lucky xx
Hi. This is a bad time for both of you. It is early days and your husband hasn't had time to get used to the idea of having this disease. I will probably be shot down in flames by any feminists on this site but I do think it is more difficult for men to accept any serious medical diagnosis. It's a macho thing. I think you just need to be sympathetic and understanding, which you obviously are. I think that once he has got his head around things he will become more accepting of it. I know it is hard for you to see him in such pain, my husband was so upset when I was first diagnosed, but you will all become used to it. Hang in there, be patient and support him when he needs you and give him space when he needs it. Things will improve. x
It is early days for you and your emotions will be all over the place. Allow yourself to go through - why me, anger,frustration, feeling frightened, panic on how to cope with the simplest of task, having to ask for help, work, finances, the effect it will have on your young daughter not to mention your dear wife who will both love you regardless. You will say horrible things you don't mean. Don't be too proud to ask for advise and help. Look on it as a challenge - yes even though it sucks !!! Keep an open mind. You are not the only one suffering for those around you are as well. I speak from experience for i've had R A for 30 years with a long suffering husband of 41 years and 2 sons who have always seen me ill. Don't give up easily, you have a fight on your hands but together you will get through it. I do wish you well despite my moaning at you.Take care xxxx
Hi, I'm new here, but I can see myself in your comments about your husband and wanted to give you my perspective in case it may help a bit. As someone said above, he is probably in "survival mode" and hit it on the head. The hardest thing for me with chronic pain has been admitting to myself I can't do what I did before. I felt like I had no option but to power through, as I'm sure he does too. When you admit your limits, even to yourself, you feel vulnerable. You are no longer in control of what you can and can't do. Powering through in survival mode is a coping mechanism until he is ready to admit to himself that his life has changed. It is a really hard thing to wrap your head around being a different you than you expected to be. (Something probably even more difficult for men to do I can imagine.)
Next up is actually the hardest, once he seeks help and starts trying to manage it instead of powering through he will be very vulnerable. Eventual flare ups, relapses, judgement by rude people including doctors, limited activities, hard work trying to manage the pain, trying different meds, side effects, painful stretches and exercises, and so many other things will come. It will be a tough road, and he is not quite ready to take it it seems to me. We all take our own time with things, and even slip up and fall back into bad cycles.
My advise is to be patient, and be kind. When he is angry or frustrated, it isn't with you, it's with himself. I hate myself sometimes, and I used to have amazing self esteem. It is very hard to not project those feelings outward. He is probably feeling scared, frustrated, lonely (isolated in his pain), angry, confused, exausted and more. You can't make someone do something, as much as you would like to. You can see his pain from an objective point of view, he can't see it the same way. He is hanging on, trying to cope the only way he knows how.
My light has been my husband, he is trying his best to be patient and kind. I have difficulty making decisions, thinking clearly, expressing my emotions in a healthy way, among so many other things that make daily life around me very hard I'm sure. He wants only the best for me, but it is a fine line I'm walking and I do it my own way sometimes despite his (probably right) suggestions. I feel like a burden so often, and I must say that is one of the worst feelings I've ever felt. Makes you feel so small and worthless. The only thing you can try to be is patient, and kind.
Sorry for the long rambling message. I'm in a lot of pain and feeling pretty useless and burdeny myself right now, so I just wanted to give a glimpse into how I feel, maybe he does too.
On behalf of your husband Thank You. He may not say it enough now, but sticking with him, and offering your support is his light too (even if it doesn't seem like it.) I wish you both all the best.
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