Anyone else been here, please?

woodbine

Hi,

I haven’t been on this site for a while, partly because a physio has been trying to persuade me that I haven’t got a problem with my joints, so I felt a bit bad about posting here. Then I began to think that all the evidence seems to be that he’s in the wrong, so ended up feeling very confused. I’ve decided to post this, hoping that someone else has been i n this position and can help me decide if I’m going mad or not! :shock:

In brief, I started having lumbar pain about 15 years ago. An x ray showed ‘degeneration beyond what would be usual for this age’. (I was then 27, now 42). In my 30’s I began to get pain in my thumb joints, making writing and sewing very painful, and then both my knees started hurting in exactly the same area (on the inside leg) within a couple of months of each other. My GP suspected early OA – this runs in my family. I developed a lump below one knee, and clicking which can be felt if I have my hand on my knee when I move it, which another GP said were clear signs of OA. He wouldn’t send me to a rheumatologist as the said things weren’t advanced enough. After a bit of persuading, he eventually sent me to a pain clinic.
When I arrived, I was told that the Occ Therapist and physio didn’t deem it necessary for me to see a Dr, so I would only be seeing them.
The physio examined me and stated that he could find no clear evidence of OA, but that, anyway ‘labelling’ of conditions is no longer considered helpful. I asked him why the pains were so widespread, and symmetrical, if there was no systemic problem with the joints. He was adamant that I must have (coincidentally) injured them all. I said (politely!) that I would presumably have noticed injuring myself in so many places sufficiently to cause long term pain. So he changed his tack and said that possibly having pain in one area (spine) has made my brain unconsciously super-sensitive to pain in others, or maybe I have a low pain threshold. I explained that having given birth once with nothing but gas-and-air for pain relief, and once with g&a and half a dose of pethidine I disputed both of these 2 suggestions!

Now, I don’t claim to have advanced OA anywhere, but I live with daily moderate pain, and sometimes pain so bad in my back that I can barely move. My writing has changed totally because my thumbs are so stiff, and I have had to give up cross-stitching completely. I feel as if I’m being told it’s all in my mind, or that I can beat it with a bit of ‘mind over matter’. I’ve being given exercises which only make things worse (I did Pilates for 5 years or so and know exactly which exercises I can and can’t do). He also told me to walk a mile 3 times a week which was supposed to make me better.
He’s told me to get a Yoga DVD from the library, which will apparently sort me out in a week or so! At one point (I’ve been for 5 appointments now) he admitted that he couldn’t be sure what’s happening inside joints without a scan, and that there might be slight damage to one knee, but didn’t seem to remember saying this later on.

I was wondering if anyone else has met this sort of attitude – I’m not sure if I’m imagining everything, or if trying to persuade people there’s nothing wrong is a new type of physio!?
Sorry this is a bit long, I’m feeling very mixed up about things at the moment, so any thoughts about it gratefully received.
Thanks
Naomi :sad:

Poppyg1rl

Hi Naomi,
I dont think we've met before, so its good to meet you I think you've coped marvellously despite appaling 'care' from a physio that's clearly not listening to you. This is just not on, can I suggest you go back to your GP and ask for a 2nd opinion, state that you need to get the correct diagnosis from a rheumatologist or an ortho and not a physio that is diagnosing without any scans.
The next thing I would do Naomi, if you see your physio again is bring a diary with you, explain to the physio that you are going to write everything down that he tells you. I know it will be painful to write Naomi, I suffer with all the fingers and wrist on my writing hand crooked and sore so I do know, but, I bet once the physio sees that you are taking notes they might be a little more helpful. If they ask why, explain that you are being told different things each time.
Another thing to do Naomi is give the helplines a ring Monday, they are brilliant at listening and then offering practical help.
We're all here for you, if any of us can help we will Xxx

roses1

Hi Naomi,

It is NOT all in your head!!!!! it makes me so angry.... my stupid OT at the hospital was trying to explain ,very badly, that my pain was all in my head as the nerves are sending the wrong messages etc :shock: :x :x :x
she reduced me to tears and made me feel like i was / had lost the plot! (I haven't been back either :roll: I know i should go ) when we are suffering so much we want help and answers they really have no idea and just go by text book! I consider, like you, to have a high pain threshold after having 2 children with no painkillers at all! never used any painkillers for headaches etc either.

I too have had lower back and thumb joint pain from an early age,diagnosed with OA about 9 yrs ago with no offer of help! To be honest its not much better now! All my joints crunch,get sore stiff painful, and because i have been diagnosed with fibromyalgia (now everything is due to that!) i was told i just had to go and 'live' with it! no cure, no magic pill, no medication will help .. i could be taking heroine , cocaine and it wouldnt help!! :shock: :eek:
Told a lot more besides :roll: i fully understand and it its THEM driving us crazy for being such ignorant, unsympathetic, uncaring nob heads!!! can i say that? :oops:

I can tell the difference between fibro and OA pains but no one is listening :x


Can you try changing the physio ? or just punch him on the nose tell him theres no pain its all in his head!!!!


Hope you feeling a bit better now ((((((hugs)))))

Rose x

jez

Hi all,
This makes me mad, I would be tempted no insistent at seeing a rheumatologist i would not take no for an answer. It's time for us to stand up and tell authority about us.
Keep going at your doctor they will submit eventually even if you have to get them in a half-nelson to do it
jess

dreamdaisy

Typical. They cannot supply a decent explanation of your pain so YOU are imagining it. This reminds me of a teacher who told me that dyslexia was an excuse utilised by parents who could not accept that their child was stupid. A few years later she turned up on my doorstep delivering a pupil who was her grandson.

There is something amiss with you, of that I have no doubt, and you are not imagining it. I was in a similar position to you in the early stages of my imflammatory arthritis, even rheumatology turned me away - hah! I got the last laugh on them! I think you are going to have to dig your heels in and demand more Xrays, especially of your knees. If they have already stated that your spine shows more than a usual level of degeneration then surely they must be aware that OA is a distinct posiibility. Anyway, what do physios know? They are trained in anatomy, not diagnostics. Rheumatologists do not usually deal with OA, they stick to the auto-immune based sorts of arthritis, so a referral to one of them may not be that helpful to you, but who knows?

Stick to your guns girl, you are in the right, the physio is in the wrong. I wish you well. DD

barbara12

Hi Naomi
Gosh you are being put through the mill, Its is awful how most of us seem to have a long battle on to get a diagnosis or even be taken seriously.
Why this is I dont know, like the others have said you keep on at your GP, believe me I know its not easy to keep going to see them, and it can be embarrassing, but remember that is what they get paid for.
I do wish you well with everything xx

kellerman

Hi
YOU are not imagining pain but to get any help you have to be prepared for a fight.
Thanks to the lovely folk on here I did have a "discussion" with my GP.
I have now had bloods taken...history of RA and I'm waiting for an xray appointment.
I was referred to physio with OA but no idea how the doc knew this as I'd had no examination.
The Physio looks about 12.She brought a skeleton over...its got a name but I can't remember it...I'm 63 not 3.
Told me it was my lower back and had me doing exercises but told me not to let my bones crack.Well the only way to do that is to stand still.
I only go now for the pool..I can't cope with idiots when I'm in so much pain and it sounds to me that you have one as well.
Either that or we are both imagining it....I don't think so.
I wish you luck...don't be fobbed off. May

woodbine

Hello again, and thanks for all the sympathy and suggestions

I've just typed a reply which disappeared somewhere, so I'm trying again!

I've had a few blood tests to rule out RA, but after a x ray of my hands disn't show anything, my GP has refused any more tests. This is particularly annoying as both the GP and physio have told me that x rays don't always reveal early joint damage, especially in small joints like fingers, but have refuses to send me for any scans.The GP also insists that there's no point in seeing a hospital Dr for early stage joint problems.

I wonder why it is that it's so hard to get a proper diagnosis for OA and related conditions? My physio seems full of theories about the brain learining to over-react to pain and pathways of pain, and as I said before thinks that 'labelling' a condition or a cause of pain is unhelpful! I shouldn't be ageist, but he is pretty young and I suspect a few more years of experience in the real world will do him good! Hopefully it will make him a little less patronising too :x

I'm hoping that my husband will come with me next time - maybe we'll be able to get through to the physio better if there are 2 of us - I hope.

Thanks again for all your support

Naomi

Colin1

Hello
First of dont let anyone put off writing or talking to people on the forum if it feels ok to you just do it. you know how helpful it can be just talking to the guys on here.
I was miss diagnosed for a long time. its hard to deal with when your in pain or you know yourself that somethings wrong. Hope you get it all sorted out and take it easy.
Colin

flossy47

Hi. Just because the blood tests didn't show anything don't give up fighting. I was diagnosed for over a year. My bloods all came back negative but I have finally been told i have inflammatory arthritis.