Hi all, I'm a big proud fella mid thirties with a very high pain threshold I have sero-negative ra and gouty arthritis diagnosed around 2011, I find it very hard to get my point across to the doctors and nurses, I have always been worried about showing weakness to people which inturn makes me very stoic, there are a number of times I should have used crutches and didn't which only hurts more in the end, and all because of my stupid man brain, I am getting better at showing my feelings but it lead to my GP thinking I'm making a lot of fuss over nothing, but still ended up in hospital for a week and been off work for over 4weeks now still struggling to walk I'm self employed. I just wanted to voice what I'm going through somehow feel a little better, there is also a lot more to this story. Thanks for listening!!
To stoic for my own good!!: Hi all, I'm a big proud... - NRAS
To stoic for my own good!!
I know where your coming from iam also self employed and struggle. I try and hide my pain as much as poss to not let my family worry my drs are the only ones that know how bad my RA really is. I tell my partner what the dr says but i dont think he truly understands.
James i think we are all like that,but with you it is a lot harder as not many men(many more men now are getting RA) get ra. Men are not supposed to cry and all that,but i bet you feel like crying at times. To help you start a diary to explain how your feeling each day and when you go to the hospital/drs. Hugs from me.xxx
I don't think you are alone in thinking you can't make people even doctors understand, I don't think they really DO understand cthe levels of pain and fatigue we suffer. I am a woman, (!) and we have the worry that doctors don't listen to us because we are emotional. I am also a nurse, and think I can express how I am feeling quite well, but I have had a GP shout at me, and I have been left in terrible pain because for weeks they wouldn't give me anything except nsaids.
As for partner/family/friends..... All been rubbish! My partner wants to pretend it isn't happening ( he can't fix it so tries to ignore it) my adult son either doesn't believe me or doesn't care as he has been appallingly lazy and making everything harder for me, and my friends are just whinging because I can't drink or telling me to buy copper bracelets, or about their sore knees....
I don't think I have felt so alone in my life.... I have started dreaming I am banging on a window and screaming and people are just going by not seeing or hearing me. (I also keep dreaming about wrist replacements:))
If it hadn't been for all the excellent support and advice I got from here I wouldn't even have seen a rheumatologist yet, I had to stage a sit in at my Gp for my letter and burst into tears on phone to rheum nurse to get an urgent appt, the waiting list was 12 weeks!!
I am just learning myself, I don't fully understand what's happening to me, and what to expect, its a worrying, frightening time. We have to find ways of communicating that gets us what we need - whether it's stronger pain relief, a cuddle or the hoovering done, so far i have tried asking, writing, crying, shouting and begging, with varying levels of success. Some people have completely let me down, and one or two, (my boss in particular) have been fantastic.
Hope you have had the right treatment to get you back on your feet properly? Do you know your condition inside out and all your results? Treat it like part of your business, you need to factor it in and manage it just like that, as the impact it can have can be not just painful but expensive. And a knowledgeable calm and assertive patient gets further with doctors faster too.
Hope things improve soon 
Hi you are correct unless somebody has RA they have no idea how you feel so let it out and tell them ! It's a horrible illness to put up with. My wife normally just lets life go by and acts as if I'm ok which is great sometimes as it stops me feeling sorry for myself, well I am a man things are changing for me now and looking at medical retirement from work, sell the house etc not an easy descision as I have 3 children and at 51 not what I expected out of life. Having RA since 2002 I've been lucky to carry on this long I know that but what the future holds I don't know citizens advice say we are entitled to nothing as my wife works 24 hours a week and earns over £114 we'll keep calm and carry on !
Hi Burtonbradstock
I read and reread your reply. My husband was diagnoised with mild ra and I keep asking him if he is "OK?" He always answers that he is fine....I have visable swelling on my hands and he does not, so he says everything is "all sorted out"...so I am now wondering if he is "sucking the pain up" as not to upset me. He is also 51 and has always been the main bread winner....I really have to get him to open up to me about his RA, as he doesn't want to talk about it.
Thanks again for opening up my eyes,
Sue
Perhaps if you jotted down things to share with your GP as to how the pain affects you rather than/as well as telling him about the pain, in terms of the functional impact ----so can only walk x yards, the tasks of daily living that you find difficult and so on?
I'm with Mirren re treating it like a part of your business and learning as much as possible about your blood results, drug requirements etc.
I don't think gender has much bearing on stoicism as women sometimes have much higher pain thresholds having had babies etc - hence the term "man flu" for example. Some people have much lower pain thresholds than others and this makes pain a pretty subjective thing. I've been in hospital a lot this year and when asked to quantify my pain from 0-3 I find this really hard because a lot of my pain I've just grown accustomed to.
It's very hard to get the balance right with communicating pain. I'm like you, despite being a 52 year old woman, and tend to play it down , make jokes and be too chatty because I'm phobic about being dismissed as a hypochondriac or just menopausal, an overly emotional type. The advantage this has is that when we do break or spell it out to our doctors they are more likely to take us seriously. But only if they know us quite well to start with.
I think Sylvi's suggestion is good too - keep a journal recording your pain and stiffness levels and putting your pain out of 3 each day. This way you can just hand it to the doctor without having to spell it out to them and feel awkward.
Hi James,
Well you've spilt the beans now and started to voice just how s***y RA is at times and how it's affecting you at the moment - keep going! Journal it or better still ask your GP to refer you to a counsellor to help deal with the emotional strain of living with a debilitation condition... Loads of us here have someone professional to chat to and find it invaluable.
Also, because your RA is effecting your mobility you may be entitled to a PIP payment - your best bet there is speak to you local citizens advice bureau as they know this stuff pretty well.
I hope things start to look up for you soon
Ali
James I know what you feel like you are the man you do not feel pain you do not cry out when the pain gets bad. I have sero positive and sometimes it hurts like hell but without my other half I would be nowhere if it hurts say so even if you have to cry! As for your gp and rummy docs you will be surprised how you can find the right words to say after all you are the one in pain not them. All I can say mate if they don't believe you stand your ground and say you will listen they are there to help you not the other way round.
Good luck
Hi James00
Feel free to have a rant , does all good . I'm 55 been off work for 12 weeks with OA , work won't let me go back as they see me as a liability . First time in my life I've been off so long , time on hands to think . But no one around when you want a moan , it's a man thing where we don't tell people how we really feel as it makes you feel weaker . It takes strength to carry on , but it's also ok to let someone know what your struggling with
Stay Strong
Thanks for all your replys, keeping a diary will help for sure, what has helped the most is spending a week in hospital and that I have been on crutches for 4 weeks friends are now aware of how serious it can be, I knew I wasn't alone in the way I'm feeling but surprised to find women suffer equally (please forgive me)
my rhumy is great, my mother is a hypocondriac who sees the same GP and I'm sure I get tarred with the same brush so I'm thinking of changing and the doctors at the hospital didn't want to know what I thought, I was diagnosed around 2011 but since 19 went through stages of strapping my ankles and knees up just to go to work, i know my body inside and out and they should really listen.
I still find it difficult using crutches in front of some people but getting better, My wife since hospital has been great but before defo felt like I was in a glass box banging and no one listening, Mirren I was in your boat with familly and friends until being in hospital now friends are just glad I'm there drinking or not, my familly will never understand as I'm over weight they talk to me like that is what's caused it, I say it isnt the reason I have this, but they are adamant I will be cured by losing a couple of stone! My goal is to stop hiding let the world know when I'm struggling, get help when needed and lose weight (lost 15 pounds already) I'm going to change GP also.
Love this site and all who listen, thank you!!
Sorry to hear about the troubles you are having. sometimes it just helps having the support of others who are going through issues. It is pretty hard if all your friends ar active, healthy and have no problems. Until they have been through pain, have,a,hard time getting around etc. They just can't empathize.
I hope things get better for you.
Yes it's a man thing! Sorry for this, maybe, non pc comment here to all you ladies. we should be the rough tough hunter gathererers, keep going like Sly Stallone even though we've been shot twenty times and blown up! And then suddenly RA hits and we find we cant! We have to accept we are in pain and can't do the things we used to, or at least as fast or efficiently. All the advice I can give is admit you need help, rest when you need to, accept it then keep battling. all the best.
Yip I know how you feel this RA really stops us in our tracks, I've had it for 2 years not and it has changed my life,it dictates what you do and if you try to do to much it comes back and kicks you in the teeth.i used to be really outgoing but now I know I can't do the things I used to do and as for work I've been off for nearly 2 months now but I don't think I will be able to return as I have to use a walking stick now which took a we while getting used to (you know what us men are like) but I found this site as a god saver because we are all in the same boat
Not all men are like that and not all women give in to things! Personally, I am very much try and keep it to myself and I am sure the doctors don't realise how bad I am as I can joke and laugh when I see them, instead of going in with a miserable face. I get it from my mum. When I was 7 years old I caught her walking round her bedroom with her hands out in front of her and her eyes closed. I told me dad and after a lot of pressure we found out that she was practicing for when she went blind as she was stating to lose her sight! It turned out to be a detached retina.
It's very hard to show weakness but I'm getting the hang of it and writting about it was a massive step for me and now listening to all the great comments it's made me feel a lot stronger more willing to admit my weaknesses to myself and others!!
The only ones who suffers by keeping it all to ourselves is us, shame we find out the hard way!!
Hi James, I have to say after reading your post and all the lovely replies you received from this site it reduced me to tears (soppy sole I know!) This is one wonderful site for people like us. I hope things will now be on the up for you. Keeping posting. Wishing you all the best. Smiler53 x
Don't think of describing pain and other forms of suffering as weakness. I personally think it takes brains and willpower to clearly identify what I'm going through rather than leaving it as a murky miserableness that defies description. That's probably why I find it so difficult.
Communicating to doctors is a challenge. Communicating the experience of chronic disease to relatives and friends requires a bloody miracle. My rheumy is a breath of fresh air, he shows little in the way of compassion but interrogates me so cleverly that he cuts through stoicism or incoherence. I do feel like a 'thing' during those appointments but I'm a thing that is getting a very good service from that rheumatology department.
I hope you find an equally good doctor. But regardless, just tell it like it is .... very matter of fact like you were talking to a mechanic about your car. Sorry if that is a bit of a stereotype ... but you started it lol!
Thank you Smiler53,
I have found this site such a pick me up at times, on top of learning loads.
I have recommended this site to a lot of people who suffer with ra and said its a massive help when coming to terms with it all, and the information gained is from personal experience as opposed to be written by a doctor, keep being soppy as your comments are great to hear thanks!!
I am 67 and have RA since I was 27.I have had several joint replacements over the years.. I find now apart from the pain the fatigue is the worst for me . Does anyone else feel the same about the fatigue x
Hi Joyce,
I find the fatigue is one of the worst things. Most days I can cope with the pain but the tiredness seems to make the pain feel some much more.
You then seem to get into a vicious circle where the pain means you can't sleep and then your more tired. I don't know how u feel but some days I feel like I've had no sleep.
When I was allowed pain relief (before all bad medication reactions) they helped to ease things and I got a decent nights sleep. Now I try a warm bath and a hot chocolate. 😀
All the best
Ruth
X
Hi Ruth I have had the worst fatigue this last week I have ever had in all my years of having ra.Its just the pits Are not on any pain medications at all. How long have you had RA ,I have had it for 40 years
Joyce x
Hi Joyce,
Certainly not as long as you, hats of to you for dealing with it over the years.
I was only diagnosed two years ago, but I must admit it wasn't really that much of a shock as my maternal grandfather suffered from 19 and both my grandmother and mother have arthritis too.
When I think back my grandfather must have gritted his teeth a lot when I was little and bounced up and down on his knee.
Take care, rest when you can,
Ruth
Hello, I think alot of us "work' through the pain. Just today I had a co worker force me to go home, and I get sick pay. I just don't want to be sick anymore, so I ignor the pain...I guess I wasn't doing a good enough job of "faking" being well..lol..We all have to learn to listen to our bodies I guess.
Take care
Sue
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