oh dear feel great and ra appointment in 2 days no ac... - NRAS

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oh dear feel great and ra appointment in 2 days no aches /pain twinges except knees but thats osteo should i push myself to bring on or not

pauluk60 profile image
87 Replies

well wouldnt you believe it i have not felt this good for awhile so what to do should i push it and try to bring something on no painkillers nothing oh paracetomol or should i b gratefull over to your thoughts O girls put NEW LOG FIRE IN AND SMOKES GOING UP THE CHIMNEY shes says o thats nice nudge nudge wink what will i get it b cuddles let you now tomos

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87 Replies
oKerrio profile image
oKerrio

I’m pretty sure you can’t “bring” it on as you call it! I’d be grateful that you feel good, your doctor needs to see you on good days and bad days, like I said it’s not something you can bring on it’s your body’s choice how and when it rears it’s ugly head! Comments like that really get on my wick! It’s no wonder doctors have trouble diagnosing things when people say silly things like “bring it on” Trust me if your having a good day not in a million years if it was remotely possible would you want to “bring it on!”

pauluk60 profile image
pauluk60 in reply to oKerrio

this is rheumy 0kerrio just cant order app/ment like that that's to easy wont let you do it when put forward for app/ment i was rigid for ten days or so could not move even with my sons help big lad to sore i want to make this clear i am scared that i may loose mobility THAT AS TO BE AVOIDED AT ALL COSTS BAD BAD NEWS that flare from hell so if you can see my point don't want Ra but something needs needs treating what ever it is

oKerrio profile image
oKerrio in reply to pauluk60

I know how hard it is to get a rheumy appointment at the drop of a hat hence my harsh remark! You say you are scared to lose your mobility but you are quick enough to put yourself through pain just to “bring it on” in your own words, again you can’t bring it on, just because your doctor sees you having a good day doesn’t mean you will not get the treatment you need, doctors aren’t stupid they know we have good days and bad days but comments like your original one is a very silly one!

pauluk60 profile image
pauluk60 in reply to oKerrio

well saying what you say why did my first rheumy fail to find things and i aint silly i try to do things correctly when doc visited me at home did he do right by not sending me to hospital should/shouldn't he well he didn't and spent 6 more days in agony which i know effects lots of peeps but i am me and that's who i worry about

oKerrio profile image
oKerrio in reply to pauluk60

I didn’t say you were silly I said your comment was silly! I don’t dispute that you may have been done wrong in the past but I don’t think people who genuinely suffer day to day would appreciate comments like yours.

pauluk60 profile image
pauluk60 in reply to oKerrio

what comments r u talking about

keeta profile image
keeta in reply to pauluk60

Hi paul .i.ve heard liads of people on here saying kinda the same as you have said. You.ve had aflare frim hell and just as you have an aop everything calms down.

Ever had a sick child been up all night the minute you go to docs they look like theres nothin wrong.

I think we all ?? Understa d where you are at.

Keep calm the docs ha e seen it all before and understand .the last ultrasound i had things were calming down so much that i said it was alot better even tho 3 weeks before i was crying in the surgery. But she said to me she could see it all on the scan and couldn.t believe it was calmer.

Don.t no why you are getting picked up on what you say .

You are just texting as you feel .

We.ve all been there say things that come out wrong but looking for answers.

You.ll be fine .don.t stress.

What nomoreheels and annefield

Say is correct .

Hugs xxkathyxx

pauluk60 profile image
pauluk60 in reply to keeta

love you kath great to know someone gets it

keeta profile image
keeta in reply to oKerrio

???????????????????

pauluk60 profile image
pauluk60 in reply to oKerrio

you've been diagnosed there are lot on here who have not me included no one want ra or inflamatory arthritis but if got it needs treatment asp you need to look sometimes and some peeps plight at getting diagnosed have you not checked other peeps plight or should we not be on here shame on you

helixhelix profile image
helixhelix

It's quite legitimate not to take your anti-inflammatorys before an appointment, so you don't mask swellings that you may not even notice but the doctor can. Not taking painkillers is a bit pointless tho' as since pain is subjective it makes little difference, you can just as easily describe your normal levels of pain and where it is.

However trying to "bring it on", whatever it might be, could well turn against you. The relationship between you and the specialist has to have a degree of trust and that sort of thing can annoy a doctor quite a lot. To the degree that they'd be more likely to diagnose you with Munchausen's than anything else.

pauluk60 profile image
pauluk60 in reply to helixhelix

so when people say they have aggrevated thier arthritis by doing to much that doesnt happen i dont take any anti inflamatories non presscribed tramadol and nefopam are my painkillers i have seen 2 specialist in last fortnight over other probs in fact very pleased to talk to me as i explained what was going on and she made her diagnosis from endoscopy info as well no mention of munches leave that with you miss i dont have any degrees the other specialist thought i was crackers

oKerrio profile image
oKerrio in reply to pauluk60

Thought tramadol could only be prescribed? As for your last specialist I’m saying nothing.....

pauluk60 profile image
pauluk60 in reply to oKerrio

it is prescribed from my doctor last ra specialist simple as this did not do her job or she didn't know enough but now i now more so wheres my the answer to " complaints that upset peeps "

nomoreheels profile image
nomoreheels in reply to pauluk60

Paul, I'm being serious here & trying to help, if you go into the appointment with that sort of attitude you'll be given short shrift by the Rheumy. You know how long they've trained to hold the position of Consultant or Specialist & you do not know better than them by reading a few websites or by talking to us here. The Rheumy you saw did know her job & did know enough, do you really think she would be allowed to practice if she didn't? I'm sure you do know but what was presented before her that day obviously wasn't considered to be RD or another AI condition. However you are on the day understand when we say they know what they're looking for at a diagnostic appointment. They palpate joints as part of the clinical examination to test for inflammation & how tender they are, blood tests include chronic (longer term) inflammation as well acute (current) inflammation. They know the swelling RD causes & OA swelling, the two are quite different so be assured of that.

Please go into the appointment well prepared but also to listen, if possible have somebody accompany you, I find that very helpful when going over what whas discussed, that is if you go alone. Don't worry if things aren't as bad as it has been on the day, again, they know what they're looking for & nobody with RD or associated autoimmune diseases or conditions can pull the wool over their eyes, honest.

pauluk60 profile image
pauluk60 in reply to nomoreheels

hi nomore i have tried as b4 to listen to all i know osteo i have had at least ten yrs i am not the kind of person to cry this that or the other told you about the three oh sir you need a new car boiler and sent home hospital back with suspected sepsis next day so called experts you can have them and the last escapade 3yrs of being sick found luckly by me demanding to know answer to remark "TOLD ME OFF FOR EATING B4 ENDOSCOPE" which i had not eaten for10 hrs cause found to be gastroparesis frozen gut caused by db2 and vagus nerve see why i don't believe/trust the expert i know my body and theirs something going on different to osteo all read re read proof read full stops you put them in or ill go to back of class

nomoreheels profile image
nomoreheels in reply to pauluk60

From what you've told us there may be something going on. Yes, you've told us quite a few times now about your previous experiences which were indeed unfortunate & doubtless of great concern at the time but they are now done & dusted, history & not relative to this forum. I'm not being horrible but it's better if you keep to the subject of each particular forum, that way we don't veer away from your important current related 'arthritis' investigations. If you want to discuss them elsewhere on HU then I'm sure those members will help if they can as we do here. They are still in your file if they need to be reviewed by Specialists but otherwise they're case closed so to speak. The thing is you damn the profession as a whole from those experiences, that's unfair & certainly on Rheumatology as they weren't involved in your care. If you consider the Rheumy a 'so called expert' then you really are starting off on the wrong foot. To form a good doctor/patient relationship there has to be respect from both so please don't continue to presume as you are currently.

Not sure if I'm understanding but unless told otherwise you don't eat before an endoscopy, you're usually told & a printed information sheet is given or sent to you explaining what you need to do or not before the procedure. Anyway, that's not what I was attempting to help you with, neither was punctuating your text, although it would be very helpful if you could use full stops. Thanks.

pauluk60 profile image
pauluk60 in reply to nomoreheels

nomore now you the thats not reading what i said they the endoscope peeps said your stomach is half full of food got it so far nomore i told i had not eaten for 10 hours to when endoscopy done ah camt the reply are you diabetic yes says i o it will b vagus nerve causing slow emptying of stomach hence diagnosis of gastroparasis frozen gut

nomoreheels profile image
nomoreheels in reply to pauluk60

Ah, that makes sense to me now. I did read what you said but with you not adding a full stop after 'which I had not' I read it to mean 'which I had not found to be gastroparesis.'. You omitted to add you'd not eaten for 10 hours. Text becomes very confusing without punctuation marks you see. Anyway this isn't really helping, it's not related to what we're trying to help with. Just turn up at the appointment, as I said before accompanied preferably, then see what is said.

Do you ever have inflammation or is it purely pain?

pauluk60 profile image
pauluk60 in reply to nomoreheels

major dull aches no strength the fumbles pain very little swelling that i would call rheumy on wrist a bump. thumb becomes extremely painful fatigue to end fatigue 3 days out of it numerous other things like you been through mincer can always tell if something going wrong chin/head drops to floor and i go quite then ITS STARTING

nomoreheels profile image
nomoreheels in reply to pauluk60

Write all these things down Paul. Make a list of them, not in a sentence, then it's clear, a bullet point list really. I wonder if... have you read anything about fibromyalgia? I would have thought if you do have/also had that the Rheumy would have connected the symptoms though. Whilst it's true fatigue is a major symptom of AI diseases, as is bone pain, some overlap making it that bit more difficult to diagnose just what's causing what. Not everyone presents the same you see, we'll just have to leave it to the ones who will know, the professionals.

pauluk60 profile image
pauluk60 in reply to nomoreheels

my computer got fatigue had to reboot again to free up i am listening to you nomore yes read about fibro what it is or what i want is the the mobility issue told to me as best they can nomore i will stand all other pain not gladly but must have mobility issues at front of anything here a question as anyone stayed in a permanent flare debilitating them

nomoreheels profile image
nomoreheels in reply to pauluk60

How did your Rheumy appointment go Paul?

pauluk60 profile image
pauluk60 in reply to nomoreheels

tomos nomore do you get your results at app/ment mending computers at moment kept freezing up so reinstalled it working ok so far updates caused probs i think well to b found out 4 new doors for my mmmmmmmmmmmisses

nomoreheels profile image
nomoreheels in reply to pauluk60

Oh, ok. Thought it was yesterday. You started this thread 3 days ago saying it was 2 days til your appointment.

It differs, some do but others don't. Some Rheumys request further imaging &/or blood tests & you have a return appointment. Obviously if there's no doubting symptoms etc then you're diagnosed, a treatment plan formed, meds discussed& given a prescription for your meds. I was diagnosed & started on meds the same day, just over a fortnight after seeing my GP with my first symptoms so I was fortunate (!) though I wasn't diagnosed in the UK.

All the best for tomorrow.

pauluk60 profile image
pauluk60 in reply to nomoreheels

nomore the are to stop the inflammatory side of it pain also???? the big question from me is MOBILITY how bad will it get it scares me that bad flare but know only knees sore a bit i will tell truthfully all what happened but want a proper exam and I AM TAKING MY GUN WITH ME SEE WHAT THEY SAY the daft heat gun so i will tell you all tomos inflammatory day for paul we will see

nomoreheels profile image
nomoreheels in reply to pauluk60

I can't can honestly answer that Paul because I've no idea what the examination will reveal, what is thought is causing your symptoms & in turn your current mobility issues. What I can say is when I was diagnosed with RD I was prescribed a DMARD to help slow down joint damage, steroids to work on the immediate inflammation & 2 NSAIDs to continue working on the inflammation & pain. But I'm not qualified, I'm only saying what happened when I was diagnosed. Have you written a list of all your symptoms? Also, have you either listed all the meds you currently take of have a repeat prescrition list to take along with you?

I'm saying nowt about owt o't rest.

nomoreheels profile image
nomoreheels in reply to pauluk60

Tchh, you've just added 'eaten for 10 hrs'!

pauluk60 profile image
pauluk60 in reply to nomoreheels

yes i did sos you caught me

nomoreheels profile image
nomoreheels in reply to oKerrio

You need to imagine your own punctuation oKerrio. I also read it as you did & I'm sure you're able but to clarify it should read 'I don't take any anti inflammatories, none prescribed. Tramadol & nefopam are my painkillers.'

pauluk60 profile image
pauluk60 in reply to nomoreheels

thank you

nomoreheels profile image
nomoreheels in reply to pauluk60

Paul, who was it who diagnosed your Osteoarthritis? If it was your GP then the usual medicinal treatment is anti inflammatories (Non-Steroidal Anti-Inflammatories or NSAIDs) as well as pain relief. You might have read about it? There are other things you can do help your joints too like exercise & keep a healthy weight, which I know you're trying to do, but it's the anti inflammatory you might want to discuss with your GP. Another option is a topical NSAID (cream or gel) to apply the affected joints, an alternative if taking NSAIDs is a problem.

pauluk60 profile image
pauluk60 in reply to nomoreheels

osteo been diagnosed ten yrs a go by specialist and xrays was going in for op but my cellulitis got in way then they refused it on weight /infection grounds so left it there no more without sounding big headed what i dont know about excersise could b written on back of postage stamp lost 10 stone twice and others as well just lost 2st in 8 weeks i would be glad of what you say but i have been telling them for yrs and yrs even the blood test woman carol said its your medication causeing bone aches/pains all over at that i gave up

helixhelix profile image
helixhelix in reply to pauluk60

Nobody in their right mind would want to bring on a flare deliberately. It happens, sure, but normally by accident.

pauluk60 profile image
pauluk60 in reply to helixhelix

it woulld be 'crackers'

oKerrio profile image
oKerrio

I’m gonna leave this convo where it is before the cheese slides right off my cracker!

pauluk60 profile image
pauluk60 in reply to oKerrio

bad spreading id say dont put butter on your crackers it all SLIPS OFF DIDNT YOUR MUM TELL YOU SILLY GIRL/BOY PUT MAYO ON LAST

Ssmart profile image
Ssmart in reply to oKerrio

I couldn’t even reply to this at all, thread confused me so bit my tongue haha!

Go play bingo- I’ll see you on there 😋

(Sorry if this makes no sense to you but hi if it does 😂I think it’s you anyway) sassi x

And all the best to you all

And if anyone’s having a good day then enjoy it xxxxx

AnneField profile image
AnneField

No, you don't need to do anything unless you are having a scan. The doc will be able to tell what state your joints are in by manipulating them. They will feel "crickety", as mine says. "Boggy" is another one. They'll probably want to test your blood too.

Besides, a good rheumatologist knows full well that RA is variable - you have good days, ok days and bloody awful days! So you don't need to put yourself in any discomfort, they know what they are looking for : )

I hope your appointment goes well.

pauluk60 profile image
pauluk60 in reply to

netty and all seems as stirring things again i dont want ra but know my body and want proper analysis not like last time

in reply to pauluk60

Just say how it is for you. Thats all you can do.

All the best.

pauluk60 profile image
pauluk60 in reply to

i suppose so netty but i did not wont peeps falling out but such is life

Shalf profile image
Shalf

All the best Paul. Great supportive post from nomoreheels. We are here for you. Xx

pauluk60 profile image
pauluk60 in reply to Shalf

i am all heart till riled honest

keeta profile image
keeta in reply to Shalf

Love you shalf xxkathyxx

Shalf profile image
Shalf in reply to keeta

You too Kathy. You speak common sense and have empathy which is so important on this forum. Well done you! Xx

keeta profile image
keeta in reply to Shalf

pauluk60 profile image
pauluk60 in reply to keeta

hi kath your driving computer mad with your likes ta thanks good for the ego

keeta profile image
keeta in reply to pauluk60

Sorry paul was just waiting for my b12 jab so was going through posts.x

pauluk60 profile image
pauluk60 in reply to keeta

don't b sorry b12 is that something to with iron

keeta profile image
keeta in reply to pauluk60

No my iron is fine .penicious aneamia. Short of b12 its another RD thing.x

pauluk60 profile image
pauluk60 in reply to keeta

thanks kath they come and do it for you or do it yourself kath just done a new post see what you think of it on home page

keeta profile image
keeta in reply to pauluk60

Hi paul doc does it every 12 weeks xx

pauluk60 profile image
pauluk60 in reply to keeta

ok kath have seen helix video very good

keeta profile image
keeta in reply to pauluk60

You ok paul ?

pauluk60 profile image
pauluk60 in reply to keeta

yes kath legs a bit stiff from walk to quite

keeta profile image
keeta in reply to pauluk60

Rest now .don.t push yourself too much ..don.t let anything worry you x

pauluk60 profile image
pauluk60 in reply to keeta

no i am ok honest and your here it all good this computer keeps lagging driving me mad keep going ok then goes up the wall cant find my clean up disc to give it fresh start me fires working wifes got her proggys so all good no wars

keeta profile image
keeta in reply to pauluk60

Xx

pauluk60 profile image
pauluk60 in reply to keeta

found me disc and reinstalled so flying now

sylvi profile image
sylvi

You naughty boy hinting at something without saying it.It could mean she is going to make you a cup of tea.pmsl.xxx

pauluk60 profile image
pauluk60 in reply to sylvi

hi sylvi how are you me keyboard keeps running out of ink like me it just stops no text any ideas anyways working again and your are here i am happy fire lit last night great job two men just over half day 900 hundred with fire & fuel fitted and big cuddles i am happy again new low threshold front door so as no tripping going out front had busy day yesterday answering posts some for some against seemed to stir things up again but that's life

sylvi profile image
sylvi in reply to pauluk60

Tell me about it darling. I missed the rememberence parade as i wasn't well enough,damn ra/fibro. It takes everything out of me and leaves me so exhausted,so i know how you feel.xxxxx

Shalf profile image
Shalf in reply to sylvi

Hi Sylvi, exhaustion is over the top with me too last few weeks. Seeing GP again today. Rheumy has suggested gabapentin for sleep. Will see what doctor says. Xx

sylvi profile image
sylvi in reply to Shalf

I am seeing rheumy tomorrow darling after having a scan on my hands and fingers.xxxx

pauluk60 profile image
pauluk60 in reply to sylvi

hope you ok

Shalf profile image
Shalf in reply to sylvi

Great Sylvi. Make sure you come out feeling satisfied. Xxx

pauluk60 profile image
pauluk60 in reply to Shalf

shaif mite sound daft but the tablet that knocks me out best is anti histamin

Shalf profile image
Shalf in reply to pauluk60

Thanks Paul. Will discuss with GP. If all fails I'll use a hammer to knock me out! 😂 Xx

pauluk60 profile image
pauluk60 in reply to Shalf

it may not be strong enough for pain i like a touch of the strong stuff to put me out but mite not mix with tabs

Shalf profile image
Shalf in reply to pauluk60

GP has prescribed 300mgs of Gabapentin for sleep and fibromyalgia pain. Hope it works!

pauluk60 profile image
pauluk60 in reply to Shalf

good do you take them just when needed or on a regular basis

Shalf profile image
Shalf in reply to pauluk60

Just when needed Paul. The less drugs the better. Once I get good sleep I think I'll feel better overall. Fibro is a nightmare with lack of sleep! X

pauluk60 profile image
pauluk60 in reply to Shalf

yep i dont like taking to many tabs but you got to when needed luckily it very rarely bothered in sleep ways as done but not lately i can tell w hen things are going to happening my head/chin its the floor and i go quite then all hell breaks loose there are so many variations on the arthritis list isnt there not 2 alike similar but different

Shalf profile image
Shalf in reply to pauluk60

That's very true! Take it easy pal xx

pauluk60 profile image
pauluk60 in reply to sylvi

hi sylvi weve been going down to london for last few years but wifes got wary of me and the DREADED IT we will call it so not keen on going down and look what happened all but clear of anything stood from chair walk to kitchen out back to look at me new chimney standing proud it was and smoking will have to get smokeless fuel on as smokes police will be here but no probs with legs slightly weary when came in no stumbles shuffles falls or the like it was good at the cenotaph i liked the walk by when family's could pay respect at the end 10000 peeps it said wife well she cant managed me if something were to happen and she gets on edge so thought best to leave it and would you believe it son out of work job finished so could have come but these things you dont know

sylvi profile image
sylvi in reply to pauluk60

My daughter has won the competition to become the county standard bearer so i believe she will be at the festival of rememberence,but i doubt i will be able to go as i don't travel so well these days. We saw the field of red round the tower of London and what a magnifecent site it was too.xxx

pauluk60 profile image
pauluk60 in reply to sylvi

we were there to sylvi good wasn't it we stayed at the travelodge round corner great there catch that 15 bus from tower all the way trafalgar sq that where i stand looking straight down at cenotaph i was CHASING ROUND BUSKERS TO STOP FOR SILENCE got some dirty looks but they stopped or i would kicked their pots over

keeta profile image
keeta in reply to sylvi

Hope you are feeling better sylvi. Hugs xxkathyxx

Dodo1943 profile image
Dodo1943 in reply to sylvi

Bless you Sylvi: we appear to be on the same wavelength!

Dodo1943 profile image
Dodo1943

I smiled when I saw your 1st post on this thread: assumed you were hoping to ‘bring on’ a bit of ‘hanky panky’? [I’m just a soul whose intentions are good. Please don’t let me be misunderstood.]

pauluk60 profile image
pauluk60 in reply to Dodo1943

nice yes i was i am loosing weight at moment quite rapid to but wife hates it as intentions go from fridge to her oh dear

spzgirl51 profile image
spzgirl51

Hello pauluk60 ,

I have Ra , osteoarthritis and fibromyalgia. In my case they were all diagnosed by a rheumatologist consultant. Many people have multiple reasons for joint pain. It can be hard to know what illnesses cause different pains. It is very important to go to your appointment with optimism and trust. Especially your first meeting

I think it is a very good idea to make a list of your pain and recent symptoms. This will save time and help the appointment run smoothly.

In addition to your list, say clearly what you have been having the most difficulty with. And stress how much this has been affecting your mobility. Be very frank about how much help you have needed to get through the day .

I wanted to say good luck with losing weight. I know how important it is to be a sensible weight. Extra weight makes moving harder , whatever joint disease you have.

Best wishes

pauluk60 profile image
pauluk60 in reply to spzgirl51

thanks for taking time to write spzgirl that's trouble this is second app/ment first one a disaster to me just a physical check and more said nowt wrong on yer bike GP had done blood test and was reluctant to send me to say the least but a lot as happened since so its wait and see

Shirley3000 profile image
Shirley3000

Hi Paul,

My advice is to present yourself as you are. I have had appointments when I felt like death and the labs were fine and days when I felt better and my inflamation in the blood test was very high. Unfortunately as the disease progresses the signs can come and go unpredictably and the damage piles up. The only way to know treatment is working or not is to show up for your appointments and trust the doctor to tease out the info from your symptoms and labs. I'm glad you are feeling better!

pauluk60 profile image
pauluk60 in reply to Shirley3000

will try to follow all advice given and thrown at me Shirley yours is good some dont seem to realize that it is my mobility i am worried about as you have said the damaged gets worse and they cant reverse it You know this weight loss is surprising me getting a lot of xtras from it whether they stay or not is another question but not complaining the wife is though but thats the naughty side

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