The Incredible Non-Performing Body

[Andrea_Shapiro]

I don't know if it's just me, but I can have absolutely raging symptoms, book a GP appointment, and then my body and RA decides that there's absolutely nothing wrong with me, and I'm quite capable of running a marathon or knitting a 20 foot scarf. I feel obliged to perform to the GP, (maybe get my bunions out). You know the drill: you can't get an appointment for love nor money: if you get one the same week, then you've won the lottery. A week later, even though you've had saveloy fingers & a massive flare up for 6 weeks, then it will a minor miracle if the same symptoms exist on appointment.

[allanah]

Tell me about it, used to be the same taking the kids to the doctor, you would phone worried out your mind and when u got there they were fine!

Have u taken photos of your flares, that's what I do?!

[Andrea_Shapiro in reply to allanah]

I have some photographs of sausage fingers, but rheumy appointments, as you know, go on how you're feeling on the day. "Raise your arms above your head, behind your back!" They don't like it if you decide your own DAS or pain threshold.

[allanah in reply to Andrea_Shapiro]

Well I think it doesn't go on the day, u have to show by other means how u have been since the last appointment. It really shouldn't be " on the day" and of all people the undies should understand the complexity of this illness, if u feel ok on the day tell him but add yesterday this or that happened. Write a pain diary? Tell him how u can't get out of bed or walk far depending on ur symptoms, if u can't raise ur arms tell him, shout loudly if it hurts , u need to be honest cos if you say I'm ok he's not a mind reader , the only one that can say exactly how it affects you .. Is you! My Rheumy welcomes my questions on a list and my showing him problems, they r supposed to be there for you, not to play god ! Sometimes with RA I feel you have to be ur own advocate and stick up for yourself, u have pain , tell him so, loudly if necessary, or take someone with u to help and give him the list! So good luck with the appointment and get as much as possible out of the time, did u know u can ask to speak for more advice to the nurse specialists too ? They r really good at passing on info to the docs, u could even phone before ur appointment and tell them ur fears of not showing symptoms on the day, and I bet they understand, hope it all goes wellxxxxx

[Hidden]

I wish I could photo my flares Allanah as I did for the first year or two. Now there's zilch to see. Podiatrist said there's plenty in my toe pads and Achilles' tendons but I can't photograph them! He said that RA doesn't always flare up in specific joints so with me I just have to trust him that I'm in real not imaginary pain and there swelling to prove it and they (my non exist ant rheumy team ) will have to trust me that I feel as if I've been run over by a bus!

Same with kids as you say. X

[funkyfran]

Same thing happened to me at pain clinic yesterday. Been waiting so long for appt. that I was perfectly fine. Ended up in tears cos she touched on a few raw spots re family history though. Stopped taking methotrexate as symptoms vanished but with winter coming getting a bit wary. Wish I was in Italy! xx

[Beachgirl]

It's the same with me every time I have a GP app; all the pain goes when I'm in the waiting room and exactly the same when I first saw my rheum consultant so annoying!!!

[DWhite]

Same happened to me . Waited 6 month for rheumy appointment after having suffered considerable pain all winter . The app. Occurred during the lovely warm spell we had this summer and all my pain had magically disappeared. The rheumy said that they could do nothing as I was not in pain and told me to come back 6 month later hopefully in pain. To which I said ,thank you but I hope not!! This illness is bizarre we can be totally debilitated one moment and able and agile the next. I also don't have any swelling or distortions but when in pain I can hardly walk and my wrists , knees and feet aches so much as if I was been tortured. My lovely sister said that maybe I have the bored housewife syndrome or the Moliere malady and that I should react ....I feel guilty now but that night I prayed to God to give her a taste of my ailment. Btw after 5 painful years I am still not certainly diagnosed as they are still not sure which of the rheumatic immune malfunction I have.

[Jill60]

Hi, I have RA also, but unlike the symptoms you all have described, mine is all year round.....nice weather or not.....I also have gastritis, B12 deficient,low serum ferritin, I suffer a lot of pain and there is never a day without pain, my joints in hands are huge, I have had 6 corrective ops due to RA.....I have never been ok in the summer, so count ya selves lucky there....lol.......pain is all year round, day in day out....

[Hidden]

Have you thought about creating a symptoms diary? It doesn't need to be complicated, just a simple record of date time and pain score on a scale of 1 to 10.

I am using a more complex form of this, in an Excel spreadsheet, to record and graphically plot mood versus pain scores as part of my CBT treatment for depression caused by the disease.

If you have such a diary then you could present the evidence to your GP and satisfy their 'inner scientist' need for evidence.That way you wouldn't feel so cheated if, when you turn up for your appointment, you have no symptoms!

[sylvi in reply to Hidden]

Now thats a good idea.xxxx

[Jill60]

Hi do any of you suffer from b12 deficiency? Or low serum Ferritin? Or Gastritis( inflamed stomach lining) ?

[binlid in reply to Jill60]

hi jil yes i suffered b12 def had a jabs on gsric tabs which have just been increased as one a day stopped working dont know about serum but take folic acid also seems to be the norm