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:

valval

hi how can they say you did not need to see a doc and to treat you when they do not have any idea what going on have you had bloods done ??? i think you should go back to docs and find out what it what val

bubbadog

Hi Woodbine, I came across a consultant for nurology when I was being treated for my sezuires in hospital. I have what is called Non-epileptic sezuires which is treated the same as normal epilepsy but mine is triggered off from stress and extreme upset anything really that 'pushes me over the edge'. And at the time I was in hospital because I had smashed my head when I hit concrete when I had a 'grand mal' sezuire. And this nurologist wasn't my normal consultant just one that happened to be treating people from A & E and she examined me and my smashed up face and turned around and said there's nothing wrong with you, your just faking it! I'm sending you to a shrink!!
So I went to see the shrink because I had to have this report on my records. And he turned round to me 5minutes into the session and said why are you here? I told him and he said to me what a waste of time your totally fine you haven't got any mental problems.
To cut along story short saw my normal consultant and he blew his top and yes I do still have Non-Epileptic sezuires and taking meds for it!
So I understand what your going through woodbine.

woodbine

Hi All,

It's been a while since I last posted on here - for the reason, see below! I wanted to post an update and also ask a question, please.

After many years of being told variations on the theme of 'there's nothing really wrong with you' I've finally got a diagnosis of OA in both thumbs, big toes and lumbar spine at various levels, with probable early signs of it in my neck and left knee too. I'm both relieved and a little bit nervous of what the future might hold (I'm 48, but have struggled with back pain for about 23 yrs - diagnosis took quite a while!) as I'm sure many of you will understand only too well.

My question is about my GP's response. The diagnosis came after a number of x rays and examinations by an ESP physio. On visiting the GP after that I was told, in effect, that there's nothing that can be done except to take pain killers ( I take Co-Dydramol when in much pain), avoid putting on weight and take moderate exercise.

They will obviously help, but I can't help thinking there must be more that the GP can do than that! The physio told me to buy orthotic insoles which do help with the toes, and a thumb spica splint, which does reduce the pain. Nothing much helps my back though, or the pain around my outer thigh said to be because the muscles around the base of the spine are very tight. Anyone out there got any other suggestions please?

Naomi

jennand

I think your GPS response is about normal these days. OA is one of those conditions that medics are floundering about because there is no proven treatment for it, just relief of symptoms ( pain) and activities to help reduce the acceleration. At the end of the road there is joint replacement but obviously it’s in your interest to ward this off as long as possible. Your insoles should also help with knee pain as this pain can alter your gait hence putting more strain on your knees. It’s important that you wear these all day

dreamdaisy

It is correct to say that GPs can offer is pain relief, maybe an anti-inflammatory medication and a referral to physio until things reach such a point that surgery (if applicable) becomes an option. In this day and age of medical advances that seems entirely unreasonable but it's how it is. OA is very common, around ten million people in the UK have arthritis and the majority of them have OA - its ubiquity doesn't help.

I am lucky in that I have a creaky foot in both camps, my rheumatologist ignores my OA because it is not her area of concern, my GP ignores the psoriatic for the same reason. Sadly I cannot ignore either. Some joints have one, some the other and others both but the OA chiefly affects both ankles, both knees and both hips. It's also present in my left shoulder and possibly my neck. I have recently begun working with a personal trainer and that is making a difference to my muscle strength and overall stamina - it is also increasing my pain levels because I am using my joints in a way they haven't been used for far too long but that will ease as I become stronger. DD

barbara12

Hi Naomi
I remember your first post very well, it sort of mirrored what I was going through..I had a great first consultant , but after that things went downhill..pain is pain however bad..
So glad to hear you at last got some help, physio is so important, has this will keep your joints form stiffening up..antiinflams will certainly help, I cant take these because of kidney probs..walking is such a good exercise ..I had injections in my thumbs and they worked well for a few years..and the pain clinic have been a big help...hopefully you are now taken seriously you will get the help you need..just keep pushing...x