may i ask you advice?

lilylou

hi all.

ive been reading this really informative forum and i can see what a friendly bunch of members. i would really appreciate your advice on my situation. It will be very long winded im sorry but would be grateful for your help.

Here goes!!!

Aprox 2 years ago i saw my g.p with swollen wrists knuckles knees and ankles. I also had achey feelings in my toes fingers and neck and elbows. I also suffered from really bad tiredness.

She gave me ibuprofen and did various blood tests. All of which came back ok except E.S.R which were high. RF was negative. She told me to go away and see what happens. That was around may time. I felt a little fobbed off but thought go with it. In the mean time my father died suddenly and had a very traumatic time and circumstance where as such that my problems were put on hold-rightly so. The swollen joints and achey feelings have come and gone lasting weeks at a time and ive put up with it as i could put up with the pain. Anyway the last time these symptoms arose is the last 5 weeks but ive had extra symptoms as well. these include tingling in my lower legs. A buring pain in both upper outer thighs and tingling around my eyes nose lips and sometimes in my mouth. Ive booked to see my g.p next week but in the mean time i would like to no if anyone else has had these symptoms, are they associated with arthritis? many thanks for reading my post.

regards lilylou x

deborahjane

i have rhematoid arther,i do get tingling in feet,it feels like bee stings i havn,t had it any where else though,you do get tired with it,and joints feel warm,i hope you get sorted out soon, 8)

lilylou

hi deborahjane.

thanks for your reply. i dont like going to the g.p and reeling a load of symptoms off-i feel like a hypocondriac-im going next week it would be just my luck to have no visible swelling in my joints-then i will feel a fraud.

thanks again.
lilylou

debsmartin

Hi Lillylou

Sorry to hear you are having a rough time, you mustn't feel a fraud when going to the doctors alot of the symptons you describe sounds like ones I have had with my RA. I'm afraid I always go to my dc or rheumy with my notebook which I jot everything down in as I always get flustered and forget things so don't worry about going with a list. I hope you get on ok at your next visit. My own GP was very good and got me referred to rheumatology very quickly which I thought really helped me.


Good luck and keep us all informed

debs

dreamdaisy

A high ESR is a mark on inflammation, and it is possible to have RA without an RF factor showing in the bloods. I know you have been 'lurking' so I am sure you have read the general advice about keeping a list of symptoms including pain levels, possible triggers, tiredness levels etc, as this does help to give as full a picture of you as possible to the doc. I have the concentration span of a gnat today - I can't remember what else you said so I shall go and have another read and then continue. Sorry - it's a roughish day today. :oops:

Right. I do occasionally get tingling in my arms and hands and lips but nowhere else. I ignore it (I usually ignore most things) as it is only mildly uncomfortable and it passes, but yes, tell the doc as yours seems to be more widepsread. I have PA (psoriatic arthritis, like RA but with the added benefit of crappy skin from time to time). I hope you get on OK with the doc - please let us know the outcome: he may suggest a referral to a rheumatologist and we can help on that too. DD

theresa4

HI
All the symptoms you describe were how my RA started 4 years ago the coming and going of the symptoms the swelling and pain. Do you get morning stiffness? (sorry if you have already put this as my memory is shot at the minute).
I have sero negative RA (I dont have RF in my blood either) alot of GP's dont realise this (something Ive learned from other sero neg patients who had to battle to be referred) I would ask to be referred to a rheumatologist if your GP doesnt already suggest this. I was lucky my GP is lovely and after my initial consult just like the one you described when I returned with the same complaint a little worse he put in the referral.

It took 2 years for me to get a final diagnosis which was clinically based with no RF in the picture. My ESR raises when I have a flare and my CRP only slighhtly raises but it is raised but they now think that my bloods do not show in the same way others do as they reduce right down following a dsteroid to reduce the pain and inflamtion.
Hope you get sorted soon

Theresa

frogmorton

Hi Lilylou

You have an idea already dont you :?

Now you have to be strong and force a diagnosis and some help.

You see if it is inflamatory arthritis of which RA is one - you may need to start on disease modifying anti rheumatic drugs to prevent any damage to your joints long term

Usually Rheumatologists prescribe these. so Gpp needs to refer you.

I am sorry about your Dad. That wont have helped, but I totally understand why you didnt think about you for such a long time.

Please take care

and let us know how thinks go.

Love

Toni xx

julie47

Hi there

I hope your dr refers you to a rheumatologist if he thinks it is RA or any other form of arthritis thn they can put you on the right meds.

The people before me have given you good advice, so I can't think what I could add.

just hope all goes well at the appointment please let us know

juliepf x

lilylou

hi all

im so grateful that you have all replied to my post. i didnt say in my original post that when i went to my g.p the begining of last year she said to me that it may be arthritis but wanted me to go away to see what happens :? i gather she wanted to see whether i presented myself again with the same symptoms. I didnt as i then had to change my g.p due to moving. No referal was made to see a rhuematologist at that time. When i went to register with my new g.p i did tell the practice nurse when she was asking questions about my health about my recurrent swelling of joints etc, and basicially thats the last time i went to my g.p infact next week will be the 1st time i have seen a doctor at the practise!!! I will take my list as advised but you all. Do i have to ask to be referred of is it the docs decision? any other advice would be helpful.

once again thankyou so much and promise to let you no how i get on.

lilylou

tillytop

Hi Lilylou and welcome!

So sorry you have been having such a tough time over the past couple of years and I am so sorry about your Dad.

As the others have said, RA/inflammatory arthritis can be hard to diagnose and GPs are not always good at recognising it for what it is. RF is not a definitive diagnosis, neither are bloods, which, in my experience can appear only slightly raised even when inflammation is active – and the other way around sometimes too.

Your symptoms do sound fairly classic though. When I was newly diagnosed with RA and hadn’t really got going on the meds, I used to have the horrible burning pains in my arms and legs and, if I touched the skin, it literally felt as if I had been burned. The tingling could be a compressed nerve, caused by the inflammation but not sure about the tingling in your face and mouth so definitely worth mentioning to the doc when you go.

In terms of referral Lilylou – hopefully your GP will make that decision based on your symptoms but, if not, you need to ask to be referred to a rheumatologist sooner rather than later. As the other peeps have said, go prepared with your list and tell it just as you have told us here, so the GP can see how long it’s been going on. One of the indicators the docs use is whether you have prolonged morning stiffness (characteristic of inflammatory arthritis) so, if you do, note the length of time it lasts – or if it doesn’t wear off, let the doc know that too.

I would hope that the GP would arrange a set of blood tests for RF and inflammatory markers (ESR, CRP) so that he can see what is going on.

Please, please don’t feel a fraud. Because arthritis is hard to diagnose and not always obvious, most of us have felt like a fraud at some point.

Good luck at your GP appt next week. Please let us know when it is so we can be thinking of you. And any more questions, please do post and we’ll do our best to help.

Love Tilly xxx

lindalegs

Hi Lilylou,

I agree with the others you need to tell your GP all your symptoms because it helps with the diagnosis. Look at it like baking a cake you wouldn't follow a recipe and then decide to leave things out because then it wouldn't turn out as you'd expect. I'd write my symptoms down as the doc will get a clearer picture then.

I'm so sorry that your Dad passed away and hope that you've been able to come to terms with it a little now.

Let us know how you go on.

Luv Legs

sillyswede

Hi LilyLou,

I definitely think you need to speak to your GP again. With an elevated ESR, there's clearly an infection/inflammation present in your body. A negative rheumatoid factor doesn't mean you don't have arthritis, it just means that you could be one of the approx. 15-20% that presents with a seronegative arthritis.

As far as I know (the others will probably confirm this), flare-ups are typical of RA - symptoms come and go!

Best of luck next week, don't hold back. Write down all of your symptoms, explain to her that you're concerned. We'll all be thinking of you and keeping our fingers and toes crossed (as best as we can ) that your GP is understanding enough to give you a referral! SS x

lilylou

hi all

you are all so kind and i value your advice and support. With regards to my joints being stiff in the morning-i dont suffer to bad really although when i first get up i do take a while to get going!!! My fingers probably feel tight so they are swollen, this stays the same for most of the day.

thanks to all that have mentioned my dad. Im starting to come to terms with it-it has only been recently i have been able to talk about it.

once again thankyou.

lilylou

hileena111

Hi Lilylou
Sorry not much help with the symptoms...I have OA and it is my hip back and ankle.
But we've all come across unhelpful GP's that think we are faking it.
We've also all {or I'm sure nearly all} gone with no symptoms when the previous day/night we have been in agnoy. Make a note of everything and take it to your GP....Your GP might refer you but if he doesnt.... ask to be referred....you do need a referral from him but ask for it if he doesnt suggest it
Good luck and let us know what happens

Love
Hileena

dorcas

H Lilylou

I agree with what everyone else has said... you should ask for a referral to rheummy.

there are many forms of sero-negative inflammatory arthritis (have negative result in blood tests for RA Factor) and it can take time for a diagnosis...... based on signs and symptoms as well as further blood tests and x rays. So keeping a note or diary of symptoms can be very helpful to rheummys,

Good luck with your referral Lilylou. Arthritis is a mean illness so the sooner you see the doc the better.

I'm sorry about your dad too.... my dad died last year so I know how acute the loss still feels for you.

Remember we are always around to offer support Lilylou.

Iris x

lilylou

sillyswede,collywobble,hileena and dorcas.

thankyou so much for taking the time to reply to my post. I will be glad once i've been to see my g.p next week, hopefully i will be able to come back on and tell how i got on.

your support is amazing-you have made me feel very welcome to the forum.

dorcas-im sorry you lost your dad last year too. Its the worst thing i have had to deal with but hopefully i will be a stonger person for it.


take care all.

lilylou

lilylou. x

chrissycl

My R A started with just aching fingers ,just told my practise nurse at a well women check she tested me and it came back positive and said ask my doc for referral, he was reluctant saying maybe i should lose some weight, couldn't see what effect that would have on my hands tho' so insisted and was referred ,thankfully ,

lilylou

hi chrissycl

thanks for replying. my fingers ache and my toes are having a party today!!!

hopefully by next week i may have some idea whats going on :?

lilylou