Pain and brain fog

[cathie]

I went to the orthopaedic knee replacement post op and all seems well, I just have to be patient while they arrange the second one. But while discussing pain the nurse practitioner said ah you've got RA so you'll know about coping with pain - high pain threshold. And it occurred to me that the brain fog some of us get is part of that, it helps us to edit out the pain. I often have difficulty in saying where my pain is - I just deal with it. It is a horrible background noise and sometimes something happens which makes me cry out in agony. But I do bear it.

[net2012]

Ah the word "Bear it", also put "up with it". I bet many of us use that word. I know I do, but actually found I am doing a dis-service to myself with regards to treatment. Two years of pain in my ankle has now left me with problems with it, so I now say I may come in with a smile on my face but actuallyI am in agony with walking.

Hope all continues to go well Cathie

[cathie]

Yes I know what you mean, net2012!

I find it difficult to identify pain when I'm asked. And I'm often torn when discussing my response to treatment - if something is working a bit, do I want them to discard it altogether? Difficult things.

[net2012 in reply to cathie]

Humira is working for me and at my appt in October with my Rheumy. I said it is working really well and because of that could I now just see him once a year and my biologics nurse inbetween only once. So basically just 2 appts a year now.

Luckily or unluckily which ever way you want to view it I get problems with tendons because of the synovitis that was uncontrolled before the drugs really started working.

So I do mention pain but know it is mechanical pain, not flares but I am mad really really mad that if I mention anything now he says osteo. My ankle last February I asked him to examine, he said osteo no scans. I asked him about my finger,, osteo. Ayear on I am left with an ankle that I can hardly walk on. So in the end I had to go to GP, which I don;t really use for RA as I have an RA team behind me. He send me to MSK and diagnoses Posterior Tibial tenosynovitis, should have had an mri but he said not needed as I have a little movement. So go to this rheumy appt in Oct and show him letter with diagnosis so rheumy arranges xray which as far as I know is normal. I ask for physio appt, have only 2 appts with her and she says I need a scan as it is not acting like a posterior tibial tendon problem so go back to Gp with copy of her letter and am now seeing orthopedics at hospital next month.

I think we should be able to explain in a way that although our treatment is working and I have not had a flare for 18 months, something that has been ongoing for quite a while pre drug treatment needs looking at.

Infact at my February appt I said Humiria was working but having real probs with ankle and he diagnosed basic everything going on was osteo I recived a copy of his letter to GP and he was talking about changing my medication. Why would he do that when biologic meds do nothing for osteo.

Sorry Cathie rant over

[cathie]

Rant on!! I do. I went to a knee surgeon a couple of years ago and when I asked him what had caused the deterioration in my knees he told me that the difference between RA and OA was academic as far as the op was concerned.

What is interesting is that methotrexate can hold the progression of OA. I loathed it as much as the next person - 8 little yellow pills once a week - but when it was stopped my knees went into freefall in less than a month.

I cant stand it when drs are vague about things. My present rheumy tends to think aloud which is quite endearing.

[strawberryshortcake in reply to cathie]

I have never been offered anything other than diclofenac or paracetamol. It wasn't so bad when I took 200 mg diclofenac but they changed the dose to 150 because of the side affects. I buy my own asprins now. I've had both my knees done and 2 ops on my ankles as I have CMT as well.

[net2012]

The problem I have now with my ankle is because it was not investigated really early on. I could only do so much with helping myself ie ibuprofen to get swelling down, icing, heating and support bandages so it has just deteriorated over time. We have an ultrasound as well at my rheumy unit!! My rheumy has been fantastic at getting me on to treatment and changing treatment ie drugs but not really good at getting me onto support services. After he said osteo of ankle and I had to go to a works Occupational health Dr I asked him to look at my ankle and he said no osteo and my bio nurse said it was my tendons and then msk said tendons so I can;t help but fill a little bit let down with the misdiagnosis especially when they have the equipment at the unit. Again last Feb he said my finger was osteo but it is showing all the signs of trigger finger which I had in the same finger of other hand which he sorted beautifully with a steroid shot into the nodule. Guess I have to toughen up a bit and ask outright for scans though it is hard and unpolite really to question an experts opinion.

To be honest Cathie although I would not like a diagnosis of osteo I would accept it if it was backed up by clincial means, not just moving a joint about lol.

[cathie]

That all sounds frustrating. Having an ultrasound ought to be good though, I had to wait 8 weeks for a go last year. I think background osteo is fairly common and if I was a dr I'd say it probably was but it was important to exclude other things.

I'm with you on the experts - they dont like their judgement being questioned.

[net2012]

To be honest I am going to have to say it at some point... why let things deteriorate, to not have a scan while having 2 years of pain!

My appt for orthopedics is in 3 weeks time, so I think that is fantastic. To be honest I really have had the best of treatment from the NHS, my gp, rheumy, occupational health and physio, just fallen through the net with this one problem, but I will continue to make a nuisance of myself lol.

[Hidden]

I agree I think we make a rod for our own backs by "putting up" with pain. I "just got on with it " when I ruptured my Achilles. Partly because the GP I saw at the time just said go away and lose weight and take paracetamol and they will stop hurting. Of course they didn't (and haven't) and I recently got told off by a rheumy because they could have done something to help but now my Achilles are painful boney nodules which I "have to put up with". Joolz,x

[oldtimer]

This seems to be a particular problem with feet! The rheumy didn't want to look at my feet at all, so I ended up (when I couldn't walk) going to see an orthopaedic surgeon privately who specialised in feet. Result - fixation with screws and a report from him that the cartilage was non-existent, however had I put up with the pain! Now it's wonderful compared with my other joints.