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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jo66120 mary76396
Posted
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??
mary76396 jo66120
Posted
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.
kristin3351 mary76396
Posted
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. ??
Rowbirdie jo66120
Posted
I m part of this new 60 s club!- diagnosed 2 and a half years ago at the age of 62 . I too had a very quick and severe onset which was so painful and debilitating and after 9 months was put on a biologic Rituximab which has really helped. Don't know why some get it worse than others......it would be great if they found a cure.
mary76396 kristin3351
Posted
I wonder about a link between family members and auto immune diseases as my Daughter has had MS for about 20'years and I have suffered raynauds syndrome since a teenager. I was also diagnosed with Menieres, Tinnitus, Spondylosis of the neck and fibromyalgia before they came up with RA so I think my auto immune system has been compromised for years and so has my Daughters. It would be good to find out if there is a link.
kristin3351 mary76396
Posted
I was told I have Fibromyalgia as well but never really believed it. I was told a number of years ago after a neck x Ray that they thought I may have spondylosis because of the way my vertebrae are curved, and my mom suffered horribly with menieres syndrome for years. It wouldn't surprise me if there is some genetic fault at play. My daughter that had JRA is now 32 but figures some day she will wind up wth RA. I certainly hope not.
I had my first mtx dose this past Friday and other than extreme tiredness I felt OK. Today is Tuesday and I feel horrible. I am in pain, slightly nauseated and having trouble staying awake. My big problem is that I am watching my 2 yr old granddaughter and have to take my 92 yr old mom to PT today. I can usually push through anything I need to do but today is challenging for sure.
My mom also has had a mild form of Raynauds since she was a teenager. Really strange to see all those similarities.
Light mary76396
Posted
Try asking them: "Oh? Do you have an auto-immune disease too?"
That'll shut them up.
ivan17274 mary76396
Posted
O....M....G.
does that mean this English pom has something in common with an Aussie Sheila? what am I to do? I'm a massive cricket fan.
only joking Mary. honestly. well sort of. me English and you erm well you know...anyway how does it feel make new friends that really understand. we can't all be good a cricket can we. (joke Mary joke). but honestly I wonder what's better? new friends or the lottery? to me now it's no brainier.
take care Mary and be well. my best wishes for you.
ivan.
stay cool dude. fair dinkum(groan).
mary76396 ivan17274
Posted
I've lived here in Aus for 26 years on a permanent visa but I've not 'eaten the pie' as they call it when you become a citizen so technically I'm still a Pom. It's been one of those 'around to it' things that never quite gets done. Can't stand cricket though, still follow the football (soccer over here)
ivan17274 mary76396
Posted
hello again Mary. glad things working out for you in Australia. hope I didn't offend you in the aussie-pom Dept. I was just teasing.funnily enough I saw relatives last year that came over to Stoke on Trent. they live in Australia but no idea where. my brother talks of living there all the time. asked me if I'd like go with him and his family. normally jump at it, but it's never that simple is it. is it as fantastic and idyllic as they say. would love to find out. take care look after yourself. feel free to stay in touch. ivan. ??
mary76396 ivan17274
Posted
Hey I'm British...I can take a joke......Certainly not offended, I'm a proud Pom who loves Australia. If you get the chance come over I promise you won't regret it. It's so huge that I haven't yet got to rural Eastern side but love Western Australia (all sixteen times the size of UK) and travel it extensively. We have the BEST beaches with pure white sand, a climate that ranges from UK type in Albany where I'm from (very rainy) to very hot and humid at the top end. We usually try to head North in the winter when the weather here is cold (and raining..sigh) to find perfect weather with temps in mid 30's which is perfect. Where I live I can count at least 20 perfect beaches, and within 5 minutes can be whale watching from the shore.. does that sound idyllic to you?
tami413 mary76396
Posted
Am I the only American in this forum? Now I can say I have brethren in other countries. I have had a horrid time making people understand the pain and symptoms of RA. I hear exactly what you hear .... "Oh, it's just arthritis - or, I have it to in my back. Um no u don't that Arthritis. Oh, what's difference?" Infuriates me. They say go walking when I'm stiff or why do you sleep so much - I'm anemic as well and another -as yet to be determined - auto-immune with my blood protein levels out of whack and this anti-cardiolipin antibody syndrome. I'm exhausted all the time. In pain, all the time. I need to find something to help or I think I may go mad from the pain. Methotrexate wasnt it. Now I'm back at drawing board. Waiting 2 weeks so this awful drug leaves. I heard about Arava from another friend - anyone try that yet?
jo66120 tami413
Posted
kristin3351 tami413
Posted
I'm in the States too. I was surprised when I joined this site how few Americans were in this group. I am so happy to have anyone to communicate with about this and I love all the cute expressions used by all from UK. Where in states are you from Tami? I live in Ga.
tami413 kristin3351
Posted
I live in Virginia! And you are right, the expressions are so awesome I hear them in my head in the accent! I've learned more in this forum than I have talking to doctors or reading myself. I know that I have to weigh quality of life over quantity but MTX almost killed me. I felt as if it were burning my insides. There has to be another way. Or we need advocates that will help us with developing new drugs or treatments. I'm only 52. I feel 92. I want a normal life - get on with my career or even start a new one as my brain is fine. But this is a vicious disease. I am so glad I've joins this group. I'm really hearing from the "experts" and not the "practicing" doctors.
patyrod tami413
Posted
ivan17274 kristin3351
Posted
I think everyone who spoke today should now class themselves as being in the Sunday smiley club.
regardless of where they're from, USA Africa India stoke on trent outside Staffordshire (me).
all raise a glass and shout as loud as they can
'i am NOT.... Spartacus!
erm.. anyone have any other ideas?
tami413 ivan17274
Posted
ivan17274 tami413
Posted
pgreene patyrod
Posted