OA is not a second class one!

hileena111

Hi Cris
I'm so glad you spoke to the clind assoc again ...thats one of the things that has worried me most about you.......the arthur yse but this other Let us know what happens.
I know you havent been on my thread pet and I know why......I didnt expect you to be on it....its not an important thing. You conserve your energy please.
Sending the special mug back to you again.......refilled along with loads of hugs (((((()))))))
Love
Hileena

scozzie

Keep well and as pain free as possible Cris – this has been, NO is a good topic! Thank you for starting it and showing me that we OAers suffer some real pain too!
Earlier in the year, when I still wasn't 100 per cent sure it was OA (and I'm still not 80 per cent certain) I said to my wife (from what I had read) that I would rather have one of the other arthurs. She asked why and I stated that there are things they can do to help them, whereas OA is – "here's some pills, learn to live with it" – not that it was ever said to me directly like that.

Take care
Scozzie

joysuffolk

Hi, Ive been complaining about my back pain for alot of years, now ive been told ive got spinal arthritis,, i agree with what u been saying as i feel ive been fobbed for years with"oh its just back pain"
ive now been told i may have to stop working because of it..
joy

kellerman

Oh Cris....I've taken what you've said on board hun...and promise to push for some answers.
But please please you take care.You've been through so much.
You are one brave,fantastic lady and I do hope you enjoy the talking books.
By the way I never had a twinge in back or anywhere else while nursing.
Only retired because of the cancer.
Think I need a different GP. Sure I need a different body.Preferably 40 years younger.
Love and hugs(((((()))))) May

suzygirl

Cris, I am ok. I will keep the pregabs in mind for the future or my next bad flare. You need to worry about you, if you are unable to post we all understand, and you have a number of PA's ready to step in.

Take all the help you can get, you deserve it. I know when I had eye trouble, it was hard to get proper treatment as it was considered to be the rheumys area as it was part of the disease. They eventually discharged me to the care of the rheumy, with the understanding I can call at any time to come back.

You can get voice recognition software for the pc as well, they may be able to help you with that. It must be hard if you can't look down either with the neck, being unable to look up is bad enough. I really feel for you and you don't complain.

Big (((hugs)))and warm hot water bottles for you. Izzy is bringing you an electric blanket and baileys cupcakes.

helpline_team

Hi everyone,
Thanks for inviting me onto your Living with Arthritis part of the forum with the opportunity to talk about osteoarthritis !
I absolutely agree with you all that the description ‘wear and tear’ is not helpful when talking about OA. We still get a lot of people contacting the Helplines confused because they have been given that as a diagnosis. I’m not in the habit of criticising GPs who have very little time, 10 minutes if you are lucky, to help with a complex condition such as OA. A shockingly small amount of time is given to arthritis in medical school but we need to raise their awareness that people can understand the word ‘osteoarthritis’ and sometimes ‘short hand’ or ‘slang’ just will not help. OA is not under the current Quality Outcomes Framework [QOF] which pays GPs extra for other conditions such as heart disease.
Yes, as Skezier has said, Arthritis Care is doing a lot to try and change things for people coping with OA and here are a few of them:
We are campaigning to get OA onto the QOF and a few months ago I went with our CE for a very positive meeting with Sir Andrew Dillon the CE of NICE to talk about that, a Quality Standard and also reviewing the current OA guidance.
The OA guidance for England and Wales is being revised and AC is a key part of that process.
In October we had our first presentation ever about OA to the RCGP conference in Liverpool – so we are getting to those docs.
The Helplines training on OA [and other conditions] is provided by top medical experts, researchers, physios, and other key people. Our information is always being reviewed and improved to help you.
Our branches support people across the UK and you all know how great our Challenging Pain and Challenging Arthritis courses are in helping people take back control.
We sit as patient reps on some of the committees which make decisions about future research in OA.
We can only do all this with your help and support !
If you have specific questions about OA – post onto the Chat to Helplines Forum the team are there to give you as much help, support and current info as you need. During the festive season there will be someone looking out for you on Chat to Helplines every day so pop over with a virtual mince pie. We are going to be around for you !
Happy holidays everyone and thanks again for asking me over from Chat to Helplines
Jo
x:-D

hileena111

Hi Jo
Thanks for coming on to LWA and bringing us up to date about what is happening
Have a very Merry Christmas
Love
Hileena

Starburst

I've been following this thread with interest. My primary diagnosis is Rheumatoid Arthritis but MRI scans show some "degenerative changes" in my ankles. I asked my rheumatologist what that meant, wondering if she felt it was related to RA. She told me it wasn't, that I do have synovitis but also some 'wear and tear'. How, I wondered? I'm only 23. I've (fortunately) had no severe trauma and I'm no athlete. Since then, a large lump of bone has appeared on my big toe joint. My rheumatologist looked at it and said "cartilage" and "there's nothing we can do".

I feel the arthritis "label" is not always helpful. When I tell people I have it, the first comment is about my age and the second about their mum/cousin/hairdresser who has "a bit of that in her knee" but still manages to go to the gym everyday. That tends to make me feel rather lousy that I can't even walk my dog for more than 15 minutes and that's on a good day!

I know AC are doing their bit and that's wonderful but we need to spread the word too. OA is not "a bit of wear and tear". It's a painful, debilitating condition of the joints that can affect younger adults. RA/inflammatory arthritis is not "swollen joints" either, it's a lifelong autoimmune disorder. My body is attacking my joints. In addition, apparently they are "wearing away" too but it has nothing to do with inflammation. Arthritis is much more than painful and swollen joints.

ironic

Hi Cris,
I have RA but I have always thought that OA which has been plaguing man since the year dot has not had the recognition which it deserved. To be fair there are some wonderful breakthroughs and ongoing promising research out there, but some of the medical fraternity must catch up and acknowledge the fact that this is a life changing and devastating condition which needs better training and understanding. In my naive way I could not and still cannot understand why someone who needs a replacement could not have the operation until after years of wasted life in pain. My neighbour was in agony and after 5 years of waiting she was lucky enough to be able to go private for a new hip and what a difference it made to her life. She had cancer so those years that she could get out and about after the op proved very precious to her. Wear and tear even sounds minimal and when you think that there is barely a family who have not been touched by it why are some doctors still so casual in their efforts to sideline it?
Please forgive me for not truly understanding the less obvious parts of the body that OA can affect but I am talking in general from the sidelines but never the less I totally agree that attitudes can and should be challenged.

I x

ritwren

This is a brilliant thread and well done Cris for starting it. The pity is that it needed to be started because of the perpetuation of the myth that OA is wear and tear. It's shocking but true that a lot of health professionals referr to this awful disease like this and often minimise or dismiss the severity of the pain and it's effect on the daily activities of living not forgetting the mental strain it puts on you.

Cris I hope tomorrow is a better day for you big hugs. Rita

scozzie

Thank you Rita ... well said. Wish I'd said it myself!


And Cris I hope you have dream run into the New Year ... ie pain free like a "normal" person ... not like the rest of us ... lol!!!

All the best
Scozzie

angie1973

When I tell people why I have the pain I do in my neck, hands and knees, and tell them it's arthritis, they just say 'Oh, I have that, we all do, it's just getting older'.

I wouldn't mind, but I'm only 38 now and I've had this for over 11 years, triggered by trauma to my neck during a car accident.

Doctors have been useless other than saying this is what you have, live with it. No advice on exercise, diet, or effective pain relief, what I could do to help make things easier during flares, or even mentioning there are 'flares'. I've found out more information on here than anywhere else, and what does that say about the medical profession?

There are degrees of arthur, and so many types. Some ravage from day one, and others creep up quietly, but the effect is the same, destruction. And for those bad days, it's hell.

Pity it's so poorly mislabelled as wear and tear when most of us now understand it to be damage and repair, because of our bodies will to repair itself.

When they stop relating it to just the older generations and realise it's not ageist, then maybe people will get it a bit better.

At least organisations like AC are trying to change the culture. I hope they succeed.

I for one am not looking forward to getting old and being in more pain.

woodbon

Hi I have oa and hate it being referred to as 'wear and tear' I have it in my hands too and the worst one is the left one and I'm very right handed. Mind you, the right one has been causing trouble and now looks worse! I'm 56, but I've had it for years slowly creeping on. I couldn't say how old I was when my back first started hurting and I was told to stay in bed for a week and not do school sports, (that was the only good thing about it, it got me out of netball in the winter!).

My Mum also had it for as long as I can remember. I have read some articles which say that the true cause seems to be in the tissues that around the joints, which appears to deteriate much quicker than normal and their seems to be a genetic link. I think its becoming slowly more 'fashionable to research and treat. I certainly hope so!! x:-?

skezier

Jo I am sorry i am so late answering but thank you for your post and also fr what you and the helplines do for folk, no matter how desperate they are or how up set. Its such a god thing to have people who understand and help.

You all have a good Christmas and thanks again for your post. Cris x


oh long old week one way and another

Hileena yep it was a wise move to talk to them I think.... i feel a bit of a fraud but then I do here as well.... i am riddled and yet still feel a fraud cus i am still plodding through mud and getting things fed and water... but at a price that I have to keep paying.... love traps you in more ways then one

Hope you are reasonably ok and leaving a bucket of happy Christmas's for you and your family. xx

Scozzie there is some hope on the horizon re controlling it in a similar way.... too late for me but you make sure you get as much help as it out there and there is so much now i am on palative (hey the rants lurking again )

I hope that your oa eases back, and it can Scozzie.... mine used to flare for a few months then ease back for a bit before it went for the continuous thing.

Just make sure you have some decent anti-inflammatories and good pain relief cus that a huge pat of how to survive it eh? Leaving a hope you and your have a good time in the next few days and you have less pain in 2012. xx

Joy they really do just leave the back and the necks as well.. i guess its cus there isn't a lot they can do? but there is....

i hope you wont have to stop working unless you ant to. don't forget the oc health and maybe they can make some adjustments for you to be able to stay on for a while yet? Will keep my fingers crossed for you and well it just isn't fair but hang in there. xx

May you really must see someone who will send you to the people who can really diagnose and maybe help you more..... i have never had a GP that 'specialises' in oa..... i thing how good they are they don;t always have the understanding or access to the kind of help we need so yep.... see someone else or push your one and please get some tests arranged for the new year.

we all need a definitive diagnoses flower. leaving tea and seasonal greetings and hopes the new year will see things improving for you. xx

Suzy oh Izzy's brought some wonderful things

I get passed between 3 depts or the eyes to the point now i don;t bother.....they tell me it either my brain or lack of circulation... see thats the worst part in my idiotic bodies case the blood vessels just don;t work right....

you make sure you get as much help a possible... if i learnt nothing i learned my mistakes will let you know about the contraption..... 18th Jan and that one could be interesting eh?!" i need something if the lumber has given out once today its done it 6 x..... but... it don't feel so cut in half o taking it a bit easy might help eh.? just wish i could get better sleep..... its so sore and painful by nightfall it starts this hideous banging.... and cus of you folks i go on..... your al so brilliant actually.

leaving a sachet and a bone ease bucket with a wish for a happy Christmas xx

Sophie flowr i remember how hard t is when your young but i promise you it does get easier.

The degenerative changes... Sophie thats what they used to call mine but it doesn't mean it full blown oa yet. age, even at your age, does make some changed that are normal. for the bad days would wrapping it up help you? it used to me, even just doubled over tubigrip but be careful if its swells.

Sophie i so agree with you its so much more than wear and tear (Jo you taught me how to spell it :oops: ) so much more.

it might be worth asking about having an ortho opinion Sophie? i know my rumo doesn't seem to believe in them too much but he might have done had i got the oa treated by him years ago.

hang in there and just remember to fight you owner cus i didn't ..... hoping you have a good Christmas and leaving so many hopes it will ease back for you. xx

I right there nodding me had for all, you say. i think thats what the aer and the thing upsets me so much.... it does sound very casual and you know what... mine can and does paralyze me as and when it feels like it. .... they even seem to say that 'only' tempera... it is I, i know it is but on the surface ... it so hurts and i get so tired of it!

wow master if understatement there

leaving a hope and a hug with a side dish of other things we really shouldn't... not forgetting the manky drake and Sid have a good Christmas flowr. xx

Rita as always its good to see you! Your so right my friend I feel dismissed over half my life.... till the rumo about 14 years ago now. he was good stuck me on the hips list the lot... then the back and neck really gave some grief and now i feel even more dismissed.... off all the list, no treatment but a huge amount of help to cope with it via blocks etc..... the palliative thing has ht me like a ton weight,even after a year, but the pain control has improved glad about that cus t so hurts.

maybe thats what kicks this upset over ear and tear.. but Rita your so right its dismissive and well so many medics don;t get it. my hope is the nurse who went on the conference and has the book is the way forward.

mind she has always been kind to me bone wise but she now understands it a lot better. maybe they could bring that kind of book into training though i guess they all have so much to learn.... it is changing just so slowly :roll:

hope your keeping well and hope you and you family have a really good Christmas xx

Angie the bolds just messed up so i hope this comes out right.... for years they ignored mine and its cost me a lot so please you do have to fight your corner. they should at least give you decent pain control...... it took them years to get mine 'right' but the breakthrough now is sort of permanent and the pain relief now is done better in an intrusive way via the pain doc... i have a really god one now but tis taken years to get one!

I so agree with you but please you make sure you get some decent pain control cus thats the most important thing i think.

its so hard to be heard isn't it at times? Diets...... i have tried a few and none have made a difference but some do say diet helps..... i don't eat meat so there is less to play with then.

hang in the Angie and make sure you fight for some decent help and have a good Christmas. xx

Sue] oa is evil.... you have more than your fair share f the stuff and i wish you hadn';t... well wish none of us did have to be honest.

i think they have made huge advances in finding out hat causes it.... just not in how they treat it! Like you my back got me out of pe at times but the teacher wouldn't have it i had disc trouble and used to give me hell! in fact she was really nasty about it till i took in a letter from the gp.. she didn't believe it but wasn't about to go against it just the same.

like you my hands are effected but the oa is in direct competition with the pa but the splints help. the left is fairly fused now the right is behind it but gong.... the splints will at least help them to fuse straight....

i read post here from youngsters with oa and you know what... they are still having the same treble you and i had with diagnoses ad help.... something is wrong eh?

i so hope, as Jo says, it will filter through in time to the grass root level..... i hate the fact that the youngsters are walking the road i walked and medical attitudes are as bad! maybe one day eh?!

Hope your ok and leaving a bucket of happy Christmas for you and your family. xx


right i am freezing.....off to find a nice hot blanket and it's comforting warmth working on the spasming muscles.... i hate the end f the day cus everything you do comes at a price and payback.... well we all know its a........

you all sleep well and i promise to pull my weight more tomorrow.

valval

chris you more than pull your weight and you know that. we would all be lost with out your level headedness val

skezier

hi Val,

your very kind but I am very behind on forum duties.... i just hope folks know its not cus I don't care. I got this one handed thing and the wrong angle for the typing thats all. hugs and tea with a side dish of extra special stay awake draft... half drunk though :oops: Cris xx