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.
I also get sick of this reply - "Oh I just take a couple ibuprofens and get on with it"
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.
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.
Yeah! It hurts eh! Wish I could hand over the level of pain and then tell them to take a headache tablet 😩
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. 😉
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
Hi,my mam had RA but would not take anything.Was offered gold injections but refused them.Soldiered on but died of 3rd heart attack age67 and we will never know if non treatment led to the heart damage.
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)
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 .
I too am lucky.Although my husband tends to just give the literature a cursory glance as a community pharmacist he sees quite a rew people with RA when they come in for their prescriptions etc
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.
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 👽
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 😊
Oh! Natasa, 🙁 I wish we could transfer the pain and exhaustion to these people for a short time and expect them to carry on.
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.
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.
Well, agree or disagree, but My opinion is that I feel like the Arthritis foundation or etc does not put a big enough effort in finding out the cause of RA or other arthritis diseases. People see the ads about RA meds and it tells you to take this drug and life will just be peachy. I know that most of my friends think it's like like that and doesn't understand why there are days I am unable to do things. My life is good today and who knows what tomorrow will bring, I am elderly and my heart goes out to all the young folks with this disease. We really need to become active and push for more research to find the answer to this dreadful disease. What caused us to have it in the first place and why do some people have it so severe and others don't? I would love to know the answer. I know at least 3 of my friends that were diagnosed with RA but only take Methotrexate, Abrava or just an Advil or 2 a day and have had RA for years, for me I was diagnosed 3 yrs ago and I am on all the strong meds, right from the git go. Why??
Try asking them: "Oh? Do you have an auto-immune disease too?"
That'll shut them up.
I agree that not a lot seems to be done in finding answers.like you I'm in my 60's and got diagnosed just over a year ago but I've had trouble for nearly five years, pushed from Neurologists, two rheumatologists, gastroenterologists until I left my job through disability and moved to a cooler climate as I struggled with the heat and I went to a young newly qualified Doctor who picked it up and sent me to a great Rheumatologist. I ended up on Methotrexate tablets, the inflammation didn't subside so she started me on Hydroxycloroquine too, the inflammation still didn't subside so after a bone scan which showed it pooling in wrists, hands, fingers, ankles, feet and toes she has started me on Cimzia injections. unfortunately it has caused liver problems so now I'm off Methotrexate!
I think it is worse because it took so long to diagnose and possibly that's your cause too, I'm told it can be there for a while doing its damage.
I am 65 and was just diagnosed. I too wonder how long this has been brewing in my body. I was diagnosed with chronic fatigue but wonder if it was RA all along. I initially went to an urgent care center for such severe pain and swelling in my fingers. I was embarrassed to go for finger pain but I wasn't sleeping and was miserable. People don't realize the severity of the pain. The doctors were very understanding but my family thinks I am over reacting. I started on steroids about 3 weeks ago and on Methotrexate this past Friday. Today is Sunday and family wondered if I am better yet. I too have trouble holding things, drop almost everything and I'm like a rusty old machine for the first 3 to 4 hours of the day. The finger pain never lets up so I have been taking Tramadol at bedtime to help me get to sleep. I hate that you all are having pain but it is nice to know I am not alone in this. Hopefully they will find a cure someday. My youngest daughter had JRA when she was 11 and 12 yrs old. She was sick for months but fully recouped. I hope she doesn't wind up with this some day.
I like the, " oh do you have an auto immune disease", response. 😝