Posted , 19 users are following.
im fed up of being asked what is wrong with me and then being told 'oh, I've got that' then when you ask what meds they take, or what rheumatologist they go to, you find its not R A at all or they've diagnosed themselves. When I think of the misery and pain I've gone through in the last few years it's almost as though they are dismissing it as nothing.
2 likes, 69 replies
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lrevenden mary76396
Posted
I also get sick of this reply - "Oh I just take a couple ibuprofens and get on with it"
mary76396 lrevenden
Posted
tami413 mary76396
Posted
I agree. Many say to me - or why do they give u cancer drug if housing have cancer. I explain about the killing of all cells to hopefully start making new. Then I found out some were on same chemo drug for years. The agony some must go through with the Crippling effects of RA and the debilitating effects of drugs used to treat. Not comparing RA w/other diseases - there are some far worse. But when it's your body its devastating. I know tell them read about it or google methotrexate and side effects.
mary76396 tami413
Posted
Your right, they've just taken me off Methotrexate as it was causing liver function problems but I'm still on Hydroxycloriquine tablets and Cimzia injections. I know there are lots of people worse off,I have a friend who has just passed away from cancer and another friend just given a death sentence for mesothelioma and I'm devastated for them. I don't look for sympathy in fact my Husband gets annoyed as I won't ask for help but it's disheartening that some people ask what's wrong and then shrug it off as if it's nothing.
martin_F mary76396
Posted
Same here Mary, "oh I have that" I've even had it said, "oh we've all got that" but no one ever takes medication or sees a specialist, and if you ever mention fatigue it's "oh I'm really tired" but it never ever stops them doing anything.
mary76396 martin_F
Posted
lol you are sooooo right Martin, I'd love to be tired. I always say fatigue is like dementors sucking the life out of me ??
ivan17274 mary76396
Posted
hello Mary. nice to meet you. I also have RA. 25+ years. believe me I know how your feeling. even now I get same stuff. it's nothing serious. get on with it. lazy sod, get a job take your mind off it. have you had the fantasy yet you win the big euro? the end of those people making your life hell. but you never do. at first I shrugged it off. then the family started saying same. devastated. so now just take it as it comes.if they ask my problem I just say I am capable of empathizing with other people's problems. if they say how is that a problem? I just say 'ooop don't know. you tell me.' seems to baffle them enough. take care all the best ivan. ??
mary76396 ivan17274
Posted
thanks Ivan, it's good to hear I'm not alone. Even my Sister said she had it too, I was so annoyed I asked what meds she took and who was her Rheumy, of course the answer was nothing! I always fantasise about winning lotto as we both gave up well paid jobs, we lived in Kalgoorlie Western Australia which is very hot and I struggled with the heat and I was working up to ten hours a day and permanently on call. We moved to a coastal town with cooler weather, I don't qualify for a pension and we have to live on our superannuation so a lotto win would be wonderful. All the best to you too Ivan, don't let the buggers grind you down either ??
natasa24657 mary76396
Posted
Hi
I know my boss thinks it's nothing and I am very lazy for not being able to do much. So I am off sick as I can't lift anything or bend down
mary76396 natasa24657
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ruth03300 natasa24657
Posted
I knew I had RA because my mother had it but it took ages to get the diagnosis. The best day ever was when I took the report into work to show my supervisor and her snidey friend. I had suffed so any remarks from such as "ooooooh i never get I'll" and "pople who have oneday off, are not ill at all, they are just taking a sickie". Well put that n your pipe and suck it up. e
gillian_25383 mary76396
Posted
So much for no hereditary trend-I too have RA and am on 25mg /week methotrexate injection.Luckily my friends and relatives do get the seriousness of it (except for husbands family who have not known anyone with RA)
mary76396 gillian_25383
Posted
Gillian I'm so sorry for your loss. in your Mums time I think the only solution was gold injections, my sister in law had it and went from a very active lady to needing months of bed rest, it didn't stop her elbow growing so big it locked her arm in a bent position, she is now in her 80's but suffers, kidney, liver and heart problems, most of which is attributed to R A. We are much luckier to have all these meds to help us and reduce the pain. They've taken me off Methotrexate because it was affecting my liver but I take Hydroxycloroquine tablets and Cimzia injections. I have blood tests every month to check my levels and do a spreadsheet of each lot of results as I get them. Good luck with your RA and keep our fingers crossed for a cure.
Rowbirdie mary76396
Posted
Hi Mary
your post has had a heartfelt response from the forum! - important topic - how to get other people more informed.
some people call it rheumatoid disease rather than rheumatoid arthritis which might stop the ' I ve got arthritis too' response.
With my nearest and dearest, especially my hubby , I just got him to read all the literature on symptoms, fatigue, different meds etc and he s learnt to 'read' me if I m crabby, spaced out, anxious, exhausted etc( due to RA or meds) - I m very fortunate to have his support.
The most affirming response I got was from a friend who s a health visitor who said' At your worst, how does it affect you?' I ve noted that one to ask anyone else I meet who has a disease I know little about as it was easy to open up to that question .
gillian_25383 Rowbirdie
Posted
mary76396 Rowbirdie
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what a lovely reply to my post! I will certainly use the 'how does it affect you' response to others in the future. I too am very fortunate that my Husband is very supportive, his Sister has battled it for 30+ years, so knew how she suffered! especially as she didn't have access to all the meds or help that we have. I'm not very good at accepting help but am getting to a point where I have to let go of a lot of things and he's always there to take lids off, mash potatoes, take things from the oven and vac the floors.
meg83590 mary76396
Posted
Hi Mary, I completely understand, I'm a Reg Nurse and the nurses I work with even say "gee I had that but I just rubbed (some homemade remedy) onto my fingers and now they are better you should try that. I wanted to cry with pain and lethargy thinking if only she knew how hard it was to drag myself out of bed to work! So I think now well if trained nurses don't get it no one will! I have a very understanding husband so I'm very lucky. Take care, we are all in this together