in the real world not in cyber land .. how many people do you know ? who suffer with some form of arthritis .. someone you know personally and can talk to .. ??
in my family ,, nobody suffers thankly also none of my friends do either ,, where i work ,, there are two people who suffer with RA ,, one male , one female ... the only person i know with A.S "same as me " is someone i knew many years ago , when we worked together ,, and hes in a wheelchair im sorry to say ... although id never wish this on anyone ,, i feel its nice to know fellow suffers , just someone you can natter to now n then .. i can imagine if you dont know anyone ,, you can feel very isolated and it seems like your on your own ...
so my answer is 3 people .. how many is your s ????
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Hi andy none of my family or friends have anything like this. When people ask how I am I'm really fed up of saying I feel poorly. So i try to not get into a coversation about me as it just puts me in a bad mood. My family are very supportive and I would be lost without them but Until people suffer like we do they will never understand what we go through. I'm so pleased I joined this site cos now I don't feel alone. Ive stopped going out as much cos since I've started on the metho injections 6 weeks now I feel sick everyday. I'm going have a word with my doctor to see if there's an anti sickness drug I can take as I'm sick of feeling sick rant over take care prairie.
No-one! My sister has aggressive hand osteoarthritis, but because it's much more visible she seems to think having that is worse than RA, so no point in talking to her about it! She was offered Hydroxy once, but said she wasn't prepared to risk taking it.....so I do sometimes wonder why it doesn't occur to her that I don't really have that choice and have to stuff myself full of toxic stuff to keep moving. But I much more aware of people in the street who are struggling to move, and am always peering at people's hands in the hope that one day I'll spot someone with knobbly knuckles like mine... Polly
No one directly, but I have been introduced to the grandmother of one of the children at school and I'm going to go to our local NRAS meeting with her. So she will be the first person I can talk to in real life. Like Scouser said that's why this site is so wonderful. Tracyxx
Mother RA, father AS, brother AS, sister "arthritis", nephew probable AS and definite coeliac; aunt inflammatory arthritis and crohns; cousin AS; second cousins: RA, juvenile RA, coeliac, crohns, diabetes, thyroid disease, autoimmune pancreatitis. Plus virtually every adult without a formal diagnosis in my extended family has "arthritis". I've got autoimmune disorders right through 3 out of my 4 grandparent lines, and the only reason I haven't said 4 out of 4 is because I don't know any relatives on the fourth.
Plus, locally, I have a really good friend who has quite aggressive and longstanding RA, another with dermatomyositis, another who is very crippled with badly treated PsA, another with severe osteoporosis (and likely to have had inflammatory arthritis as well), and a much younger friend who seems to be going the spondyloarthritis way (family history of it) with some pretty severe knee and back pain, but is having trouble getting the GP to take her seriously.
So yes, quite a few folk who I can talk with and empathise with.
About 20 of my family! And 3 friends! It's was negative for me as they all did quite badly as it was before the advent od biologicals or dmards, so I am glad for the new drugs xx
Oa = Mum, and three friends. My grandpa had rheumatism, but I am wondering if he actually had RA, as he had three hip replacements, and his right foot and knee were so bad and the pain he was in was terrible, he had his shot gun to it. Which has been how I have felt at times!
For PsA, I had a school friend who had this but she died from seconday PsA, so when I got my diagnosis, I was extremely worried about it, even though I knew I had this disease through having the skin complaint as well.
I can honestly say the people who have Oa that I know, do emphasise with the aches and pains and the tiredness, as they say they go through that but in a lesser version to what I have experienced. This is on seeing me at my worse.
No one with RA, But MUm, Dad, Aunty with OA, close friend at work with OA. My Dad nursed my Mum with her OA, crumbling Back, Ostoporosis & empheseyma, He now very upset & worried about me. I only know you all on here that I can talk with & know you will understand about this horrible disease.
No one. And it does give you a feeling of lonliness if you have no one to talk to. Thats why I find this site so useful. We can 'vent' and people know what we are going through without being judgemental.
Grand mother (maternal)= RA, Osteoporosis, Osteoarthritis...RIP
Father= Good pastures (immune disease of lungs)...RIP
Sister= showing symptoms of Osteo/RA
Me=RF positive bloods awaiting rheumy appointment next month!!
Also have a sister in law with RA/fibromyalgia/thyroidprobs/lupus?...to whom I talk about symptoms but she is 20 years older than me...and is on lots of meds for her "other probs!"
but None i reconise for RA
This site is invaluable font of knowledge and first hand experience THANK YOU ALL...X
Wendy..x
I don't know anyone apart from cyber pals here and Cathie from this site with RA. My first cousin apparently has it but she is in denial and just carries a hip flask for when the pain gets too much, according to my aunt. I slightly dread meeting people up here with RA because I fear they may have it so much more obviously than me that I will seem a fraud, or that they have it so mildly that they will make me feel like a sucker for talking about it or taking the MTX by injection.
But it is a lonely disease. A lot of the time I feel a bit of a freak or a bit of a fraud or both so I'm learning to shutup about it even to my family. Its hard enough having RA without further stress of others to worry about and I do have this site.
Good question though Andy. I hope you're still doing well on the Enbrel? Tilda xx
i am doing great still ,, on the enbrel ,, thanks ,, still get the odd ache n pain ,, but nothing like it were before enbrel .. i`ll be a happy man if things stay like this .. "fingers crossed "..
i dont think anyone would be taking MTX for the sake of it , so you should never feel a fraud talking about it , to no one .. xx
Thanks Andy I will try not to feel fraudulent - agree re MTX. So pleased you are still thriving on Enbrel - so hope that continues. X
I know loads way to many to count
And all because I went along to the NRAS meeting in my area, I know for some people support groups sound corny and I was one off those people. I went to my first group and came away thinking oh it's not for me cause there wasn't anyone my age group or near, however a few months later I gave it another go there was one lady there around my age and she had done the same not kept the group up cause off the age gap so I now go to every group meet I can and I'm on the committee too , this way when new younger members come along they stay too as they don't feel out off place.
I can honestly say I've never looked back from going to the groups and if there isn't one in your area why don't you look into setting one up?
i can relate to that myself ,, i went along to a support group that ran exercise classes along with physio s from the local hospital , but felt abit out of place .. needless to say i only went along twice ..
adding yourself to the commitee is a good idea ,,with your age it will encourage the younger ones to stay ,, well done you .. these groups are so good for everyone ,, especially the newly diagnosed .. who are just looking for someone who understands ..
Quite a lot, Andy, through doing voluntary work with disabled people, several of which have RA and OA but some of these people, sad to say, not very supportive or understanding. The three most understanding and supportive people I know, are not RA/OA sufferers.
I have 6 friends with Lupus, a couple of people with Fibromyalgia, and I have met several new people with RA, recently. I went thru my entire childhood & 20's & 30's before I met anyone even close to my age with RA. It was very lonely, that's why I'm so glad that I found this site & can share my experiences & troubles & hopes & dreams.
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rant over take care prairie.
How many people?
How do people find Amytriptyline?
If on painkillers how do you know if you are doing damage when exercising
