RA to be changed to RAD - your thoughts?

suzygirl

Mat, sorry you are in so much pain. I am not doing too well on the pain front myself at the moment.

I just expressed my opinion on the thread, and don't believe that in any way I either criticised you or your point of view?

We are all entitled to our point of view, and a debate is lively and often challenging, which is what makes it enjoyable.

We are all bound to have differing views on the issue, as we all have individual expereinces and journeys. I have gone through various emotions, anger, bitterness, denial, and grief along the way. At the moment, its pain and I am struggling with it. This is bound to affect the way we feel about the name.

The one good thing is I have found many true and genuine friends, who have helped me enormously. Some of the people on this forum have been a massive source of support, we all need that along the way.

tiggernut

Not heard about this, but seems quite a good idea. It may stop those people saying oh yes I have that or is it rheumatism!!

dreamdaisy

You're an interesting person Mat, with some interesting takes on life, but remember that we see the posts, not the face and we certainly don't hear the tone of voice. This is precisely why it's 'dangerous' sometimes to put one's thoughts down because sometimes they don't come across in the way one writes them (as I know all too well.)

Of course my friends whinge about their aches and pains and why shouldn't they? They are looking at things from a very different perspective but in no way would I tell them to shut up or 'cull' them from my social circle.They are trying to tell me that they have some insight into my life (well, that's how I read it) and I empathise, offer them a paracetamol or two, tell 'em about the limited wonders (and stench!) of Deep Heat and then we carry on as before. The sarcastic thoughts I keep to myself as they help no-one, least of all me, but on here I can put them as I know some will grasp what I am trying to say. On re-reading the thread perhaps I have omitted a vital point (but thoughts do run away with one every now and again) - if I meet someone who is ill then I don't just blnak the illness, I try to ask reasonable questions to show an interest (not just bang on about my stuff) and if they want to offer up any details then of course I will listen. I like to learn just as much as you do, but maybe I go about it in a different way. I spent Friday evening with five others, including a chap who probably won't be here by the Autumn (he's had numerous ops, lost a fair bit of his guts and plumbing due to three cancers, has bags etc) and not once, throughout the whole evening, was cancer or arthritis mentioned by anyone. It was fabulous, a wonderful break from the general, pervasive, tiresomeness of life. Oh, and I did say 'those who like to think they have something wrong bore for England. You do have something wrong and you are struggling with it, as do we all.

Perhaps one of the 'problems' with AC is that there are a fair few of us on here who are veterans of the fight and perhaps some of us don't fully grasp the emotions that you newer ones to the fray are going through, me especially. In my case this is because I probably didn't feel them, this was just another hurdle in a life full of 'em, I had years to get used to the idea that life had taken yet another plunge and that leads to my cynicism. Those who are enjoying success with the meds scarper and get on with life, leaving us old hands who maybe are not doing that well on them to try and bolster when, actually, we are struggling ourselves. It's hard to re-assure when one's own life is nothing like one wanted or hoped for. I don't know anyone in my circle with arthritis, only the lovely people on here. For fourteen years I had no-one to talk to, no-one to hear my un-answerable questions (including the doctors) but I will always do my best to help those who have found here and will carry on trying to do it in a less-skewed manner. Blandness here I come!

This has been a fab thread Mat, I have to say you start some corkers! I hope you are feeling better today, I really do. I am looking at the snow, wondering if I should even attempt to try a poddle around in my lovely pink wellies, but as usual caution rears its Medusa head: yet another pleasure lost to the demands of my arthritis. C'es la vie, well, or more accurately, c'est ma vie! DD

Mat48

Good day - all okay again really. Yes DD and Suzie you are right - pain affected my judgement last night so when I read your and DD's posts I took them a bit to heart - but only because I was being assaulted by this stupid disease - don't care what others feel about the word for me that's what it is. I love animated debate and I knew this would be one such, just don't like being misunderstood - it's bad enough with the rest of the pain free world without coming over all wrong on here with you lot! My fault for being too lateral and not editing properly or seeing how I sounded. RAD or RA who cares as long as the doctors believe us and give us the drugs we need that's where I'm at now.

I come from a different place to others as well DD - had my own share of suffering and some days this seems like light relief compared to other things because it's just arther and therefore just mechanical and at least I no longer look like i've been dipped in acid as I often did in the bad old chronic eczema days and don't have it aggressively like many I'm getting to know and read of.

But my current pattern seems to be a that it comes in like a hooligan hellbent on surprising me and leaving me good for nothing much 24 hours later - and it brings a deep freeze with it now and this is new - a kind of Raynauds thing I believe- so I go very very cold and am only just beginning to realise this is the moment I should go "hey ho very bad things on way". You older hands will only ever incur my profoundest admiration and it's only myself I feel critical of here.

Assault now abated but hands seem to be changing shape daily and that's not helping my state of mind much either. After a night of screaming into my pillow hubby came bouncing in with a cuppa and looked at my hands and said "my God it looks as though someone took three wedges and hammered them in between each of your fingers to prize them apart?!" - yeah that's exactly how it felt too. Have a good day all. Mat x

Ps have apt to see GP tomorrow as never had my inflam markers (CRP and ESR) taken for over 3 months. I think from what other RAers have told me it should be done a bit more often. This way I can get some cheer perhaps if they are lower and feel that validates taking this methotrexate that is making my hair go thin and frizzy and giving me funny gum bleeds and getting me so tired out. But actually I think I'll just ask her for some drugs to take when the hooligan breaks down the door because unfortunately I've got an ulcer forming from all the ibuprofen of past 6 months and really would prefer to blot out consciousness with something very powerful when these occasions arrise.

suzygirl

Mat, you have no need to be critical of yourself. When I am in pain, I just want to be left alone, and I can get very cranky. :oops: It does hit hard at times, I cried my eyes out Thursday night with sheer frustration. I can't do things I want to, and it gets to me. I am only 39 and am housebound due to this blasted disease a good deal of the time.

I should have said that I do think of my illnesses as a disease, but my OA I think of as arthritis. I feel 'ill' with my lupus etc most of the time, and am always in severe pain due to my neck and back. It is miserable, and can be grim.

However, when I log on here and read the posts, which are so supportive and encouraging it helps. I read of other peoples struggles, and am reminded I am not alone, it eases the isolation the illness brings.

I hope your gp appt goes well, you need stomach protectors if you are taking nsaids for a long time. You could ask try to something other than ibuprofen. Diclofenac or naproxen maybe are slightly stronger I believe, then get some good pain killers, to keep for when things get really bad. Tell the doc how bad it is making you feel.

Take care

Mat48

Thanks Suzygirl you are a brave woman - my mum had a close friend with lupus and I often wonder how she is getting on now that mum is dead. I have a bit of osteo in my fingers too but luckily nothing compared to the RA stuff. I find that the OA nodes are really sore when they are forming on my joints but once they have arrived they seem to be painfree.

Will talk to GP tomorrow and tell her about the past week where things have been much worse again. Hoping to get some Tramadol as many reccommend - can't take Diclofenac as it makes me swell with fluid retention.
Mat xxx