Waiting for appointment - is it RA?

karenjane

Hi all - I'm waiting for an appointment with a rheumatologist but in the mean time i was wondering if any of you has had similar sysmptons to mine.

It started in August 09 with sore feet after i'd been sitting or when i got out of bed, this eases once i've got going but feet and anckles ache on and off during the day. In November i had severe pain in my left knuckle and numbness in the same finger (the numbness is still there) At christmas the pain spread to my right hand as well and now i have sore knuckles and aches in my hands and wrists. Also when i do certain things like pull off my childs welly i get an "exsplosion" of pain and tingling which lasts a few minutes.

Doethis sound familiar with RA? Xrays of my left hand haven't shown anything and all my blood tests are normal?

Would really appreciate any comments or advise

Thank you
x

skezier

Hi Karen,

Welcome to the site, they are a good lot here There are so many different types of arthritis so I shouldn't like to say if its ra or not. Certainly something is going on there and some of it is familiar. So many types don't show up in bloods either but hopefully they will see you soon and then you may be able to get some treatment for it. My hands are iffy sometimes and I find sticking them in hot water helps to get them freed up a bit. My feet are just painful at the mo what ever I try but some of mine is complicated by really bad circulation and if thats not been an issue hot water helps them as well. I got oa and pa in them so they are quick to complain after rest.

Has your gp given you anything to help re pain and inflamation wise? If not it might be worth asking him. I really hope they get you sorted soon. Take care Cris

karenjane

Thanks Chris - I have an appointment on the 29th Jan so not to long to wait!... I've been given anti inflamitory pills and pain killers but to be honest i'm not in "severe pain" just aches really and now and again i'll get this explosion if i do something that sets it off but it doesn't last for long?...

Today my knuckles are very "sore" and have achy wrists and feet.

Thanks again
x

skezier

Hi Karen,

Try heat for your hands, some people say cold like either water or they often say peas but I am allergic to cold so can't bring my self to try it Glad they are seeing you soon an also that they have referred you to the Rumo. I got stupid wrists as well and I find tubigrip doubled over helps (Thanks Debs for suggesting that it was a good one). You take care and keep us posted if you don't mind. Its all so horrible and does get better once you have a diagnosis I promise you. (((( )))) Cris x

karenjane

Thanks Chris - I will try that for the wrists, and heat sounds good - I'm allergic to cold too!!... Will def keep you posted its great to have found somewhere like this - do you have any idea what will happen at my first appointment?.. what they will do etc, sorry to sound dumb but my doctor is a little vague to say the least!!

xx

skezier

Hi Karen,

Your not being dumb, none of us know initially. My first one was a while ago but I think he asked for history (so its worth writing stuff down incase you forget when your there), he did an examination and then sent me for more bloods and xrays. Saw him after the xrays and was sent for ultrasound and then he decided what was what. Have you got someone to go with? Sometimes it helps so they can remember as well if you forget whats been said? Cris x

karenjane

Thats a good point - i will write it all down, i always come out of appointments thinking "oh i forgot to mention that".. and yes my partner or my mum will come with me and they're both good at asking questions too. Thanks again for all your help. x

frogmorton

Hi Karen
Welcome to the forum from me This is a good place to be.
Bloods can be negative you know. Mine were and still are I think.
My rheumy still says I have RA though.....?
I had other symptoms too Karen Like exhaustion and a low grade raised temperature. Bet you haven't taken it? take the kids at the slightest thing don't we, but ignore ourselves eh???
Serioulsy though do what Cris says make a note of all the bits and peices - they may help the rheumy no end. Things you dont think are important.
I wish you luck
Toni x

page35

Hi Karen
just to add when i first saw rhuemy i had to undress down to underwear so you might want to not wear your old grey ones like i did as cris said i had bloods and xrays too. they done a blood test on me called ccp as i had nothing come up in any bloods before. this ccp test came back very high and from this and my symptoms they said i have early RA, they also have called it anti ccp positive arthritis and sero neg inflammatory arthritis, it all boils down to the same thing as far as i can tell and treatment is the same.
good luck with your appointment.

karenjane

Thanks for the underwaer advise!!!! I will make sure i have my "nice" set on!..

I do get very tired and breathless?.. not sure if thats related?.. and no i haven't taken my tempature - going to do that now, whats a "low grade raised tempature?"

Thanks again everyone - so glad i found this site! x

karenjane

OK just taken my temp and its 35.5 - is that about normal?

page35

I think Toni means temp raised a bit but not like when your really ill with flu.

Hi toni, im following you

page35

karenjane wrote:

OK just taken my temp and its 35.5 - is that about normal?

i think thats normal :?

karenjane

Thanks Page x

dorcas

Hi Karen,
just popped by to add my welcome to you ':D'

Hope your rheummy appointment goes well...as others have already said write everything down and don't be afraid to ask questions! no matter how daft you think your questions are or how varied your symptoms..... everything is significant when they are looking for a diagnosis!

Lots of peeps here don't show a positive rheumatoid factor in their blood tests, but do have other forms of arthritis... there is a whole range of them, so just let the docs do their job and don't be surprised if it takes time for the rheummy's to give you a diagnosis...took a year for me to be told I have Psoriatic Arthritis which is one of the sero negative arthropathies (don't have psoriasis though)

Important thing is that you start on treatment and have proper pain relief.

hope you enjoy being part of the forum family. look forward to chatting some more. Iris x

karenjane

Thanks Iris - I have already started to make notes - I am going to take my Mum to the appointment as she's very good at asking the right questions! - My brother was diognosed with Alkalyne Spondalitus in his 20's (in remission now) so she spent many an hour in consulting rooms!

caprica

Hey karenjane,

Sounds like we're in a similar boat. I only joined up a few days ago. Similar symptoms to yours, aches that come and go, no 'extreme' pain when doing stuff yet but I had some fun swollen fingers on my right hand a few weeks ago that are still a bit weird. Anyway waiting on my rheumatologist appointment, I'm glad they're seeing you so soon. I might have to wait till March!! Raging. Anyway good luck, I hope you feel better soon.

dorcas

Sounds as though you've got a really supportive family! that's great if mum will be with you too ':D'

good luck! Iris x

Hi caprica! just noticed you there! welcome to the forum! '')Iris x

caprica

Hey Dorcas!
Thanks for the welcome! I spied on your profile you're in central scotland. Me too! Woo hoo. Do you go to the Royal in Glasgow? That's where I'm waiting for my app..

frogmorton

karenjane wrote:

Thanks Page x

Hi Karen
Yes normal but check it at diferent times of the day (not after meals though as it goes up anyway then!) normal is 37 I mean sort of 37.5/38ish.
Hi Page
Hope you and yours doing ok???
Love
Toni xx

karenjane

Hi Caprice - end of March is a long time! - I'm in Essex/Suffolk and we get to choose what ever hospital we like, so you check the waitng lists and see which is the earliest - All the other hospitals within 40 miles were 2 to 3 months wait too. Can you do this in Scotland?

Have you had or do you get like an "exsplosion/spasm" of pain when doing certain things?

xx

valval

karenjane wrote:

Hi Caprice - end of March is a long time! - I'm in Essex/Suffolk and we get to choose what ever hospital we like, so you check the waitng lists and see which is the earliest - All the other hospitals within 40 miles were 2 to 3 months wait too. Can you do this in Scotland?

Have you had or do you get like an "exsplosion/spasm" of pain when doing certain things?

xx

hi i tend to say it like lots of little mild electric shocks lol been to rhummy twice and had bloods done first time got different meds second time as bloods showing mild inflimation doc thought had oa but keep getting swollen joints never same one twice lol so go with the flow it will take time but they will get there lol u can keep your shoe on where i go when u get weighed if u have trouble getting them on and off lol good luck

dorcas

caprica wrote:

Hey Dorcas!
Thanks for the welcome! I spied on your profile you're in central scotland. Me too! Woo hoo. Do you go to the Royal in Glasgow? That's where I'm waiting for my app..

Hi caprica,
nice to meet a another scots lassie!

I did attend the Royal for my elbow ops.... as the have the best elbow surgeon!

I had my wrist fusion in the Western and will have the total joint replacement there too...best hand surgeon!

My rheumatologist is in Gartnavel hospital, been going there for 13yrs even though I have moved house twice to different areas in Scotland during that time and am not now in their normal 'catchment' area..I have chosen to remain with rheummys at Gartnavel as they know me best!

You can ask to be referred to a specific rheummy or ortho surgeon...but usually your GP decides initially where to refer you.

good luck with your appointment. let us know how you get on! Iris x

Sorry Karen for hijacking your post! Iris x ':oops:'

caprica

karenjane wrote:

Hi Caprice - end of March is a long time! - I'm in Essex/Suffolk and we get to choose what ever hospital we like, so you check the waitng lists and see which is the earliest - All the other hospitals within 40 miles were 2 to 3 months wait too. Can you do this in Scotland?

Have you had or do you get like an "exsplosion/spasm" of pain when doing certain things?

xx

Hmm not really, so far the biggest drama has been the two swollen fingers on my right hand which were pretty huge for 2-3 weeks but have mostly gone down by themselves now thankfully, even though the knuckle of one still looks really ridiculous. They were stiff when they were inflammed but not anymore. Although never got pain in them, oddly. And then aside from that it's just strange aches, like a..i dunno.. a very light tooth ache, in various joints. Usually stays for about 10 mins, then goes away. Then a bit later later, or the next day it'll be in another joint. Get the aches in my right wrist mostly. Although today it has been my left hand fingers. Oh and I have got weird pains in my feet as well, on the ball of the foot, like the bones are sticking out too much and feel like walking on a pebble beach. That tends to come and go as well, been much better the past week. Also various other little things, knee cracking more than should be normal, muscles feel tired..etc. Not noticed a fever/change in energy but who knows..

Not on painkillers for any of it yet as it's not too terrible and certainly nothing like what some people on here have experienced but it just feels WRONG, you know?? Like I'm slowly but surely falling apart.

I guess that's why Im so keen to get diagnosed and treated soon, so that I don't have to wait until I'm in unbearable agony! But knowing the NHS...

I'm not sure if we can do that with hospitals here, maybe I will ask my GP, thanks for the idea! I'm hopefully finding out the exact date of the appointment this week. If it's any later than mid Feb, I'm not standing for it! It's ridiculous waiting so long when everyone goes on about 'early treatment' being the key...

Feel free to message me privately if you wanna chat about 'newbie' symptoms/worries etc! I know you probably are in the same blind panic that I'm in..
Best of luck!!!!

caprica

dorcas wrote:

caprica wrote:

Hey Dorcas!
Thanks for the welcome! I spied on your profile you're in central scotland. Me too! Woo hoo. Do you go to the Royal in Glasgow? That's where I'm waiting for my app..

Hi caprica,
nice to meet a another scots lassie!

I did attend the Royal for my elbow ops.... as the have the best elbow surgeon!

I had my wrist fusion in the Western and will have the total joint replacement there too...best hand surgeon!

My rheumatologist is in Gartnavel hospital, been going there for 13yrs even though I have moved house twice to different areas in Scotland during that time and am not now in their normal 'catchment' area..I have chosen to remain with rheummys at Gartnavel as they know me best!

You can ask to be referred to a specific rheummy or ortho surgeon...but usually your GP decides initially where to refer you.

good luck with your appointment. let us know how you get on! Iris x

Sorry Karen for hijacking your post! Iris x ':oops:'

Hi Iris,
Wow you seem to know your way around the rheumatologists in Scotland! I'll definitely let you know who it is I get at Royal. I hope it's not some space cadet, and that he/she takes me seriously and sorts me out. Although I'm on the warpath lately (either that or I'll just start crying!) so I'm not going to take no for an answer, if I get a bad feeling about the doctor I'll make sure I speak to someone else! Sigh. So hard to be assertive when you're not feeling well.

Thanks for sharing your experience, I hope you're getting good treatment from your doctors!

skezier

Hi Caprica,

A welcome from me as well. Is there anyway you can get the appointment;hurried' up at all? Its a very different system in Scotland and people say better than down here but thats our time for consultants but if you can get your doctor to push it they can see you sooner....... Sometimes you have to make a nuisance of your self and its so wrong to have to but maybe you could? Anyway they are a good lot here and though I am sorry you have had to find them its nice to meet you. Take care Cris x