Referral done.: My feet were so swollen at work other... - NRAS

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Referral done.

mirren profile image
12 Replies

My feet were so swollen at work other day my boss allowed me to go early to GP to ask for referral.... Anti-ccp is still not back, and she was reluctant but I insisted because its affecting my work and life so much. She agreed in end after looking at my hands and feet. I have developed a sort of bulging varicose vein on one hand, some hard bumps under my skin which she thought might be early rh nodules.

I called the surgery yesterday to chase result and its still not back, but my referral has been done as urgent.

In past couple of days I have felt much better. Almost completely better. My fog has all but gone, the tiredness, all the swelling, and the pain is much less.... I am going to feel a fraud if I go to a consultant rheumatologist now.... Will it be worth going if I am fully recovered?? I know I have had pericarditis in January and mild joint pain for a while, but maybe I have overreacted to this.... I suppose I'm asking is it still possible I will be diagnosed while symptom free and neg bloods??

See below - feet with bones!!

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mirren
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12 Replies

Hi-I felt very much the same,I asked for a referrals as I wanted advice about medication as on steroids from GP and felt I needed a clearer diagnosis and plan, I explained flares to rheumy and that felt ok between ,I was fine when I went to see her ( said I feel like a fraud )

She thinks from symptoms and history I describe it may be pallindronic arthritis . she wanted to see me after reducing and stopping steroids .however they have sent an earlier appointment due to blood results so await with interest !

Hope it goes well for you - suppose the best thing to do is to remember how bad it is and how it affects you when you are unwell ! But long may the good times last - Good luck

mirren profile image
mirren in reply to

Thank you! I'm extra worried because I'm accessing care at the hospital I work in and after being sick in January with pericarditis and then telling people at work my GP suspects Rh A, if I don't get a diagnosis I am worried they will think I am a hypochondriac... I know they shouldn't access my records but in reality the can easily....

anne999 profile image
anne999 in reply tomirren

Hi. i too am a nurse where i am having my care and knowing that colleagues can access my results. i spoke with my matron, my results now are still put on the system but my name doesent come up, they have used a number for me, not my hospital number but another code, my rh nurse contacts me with my results. Also I'm assuming you mean they can access you via their smartcards, you can ask who has accessed your records........hope this helps. x

in reply tomirren

Sorry replied and have lost it as it says need body !!

Briefly I said can prevent access -ask who has viewed - bit also that it may be to your advantage if occ health hr need advice on supporting you- easy to say but try not to worry and take care

in reply to

Oh dear need more IT training !!

in reply to

You can ensure your privacy and you can I'm sure at any time ask to see who has viewed details- however if I was symptom free and feeling like a fraud I believe that specialists knowledge even if blood results are clear at that time will confirm - in some ways it may be an advantage I suppose if say occ health hr need advice to support you in work - easy to say but try not to worry and take care

mirren profile image
mirren in reply to

Thank you :) I even feel like a nut for worrying about it :) x

in reply tomirren

No you definitely not a nut - think when in pain we worry and stress then if it goes away worry whether nuts or when it's coming back lol. Looking at my daft efforts to reply I believe I am defiitely the nutty one 😕

mirren profile image
mirren

It's my letters I was thinking about, we use medisec at work, and after I see rheum my letter back to GP is easy to search. I was off sick for 3 months with pericarditis which was precipitated by a really stressful period. I was really only beginning to feel well again when I moved house and got really sick, severe chest pain joint pain ankles wrists and hands mainly, bilateral pitting oedema feet and hands, the worst fatigue I have ever known, so much brain fog I didn't think of going to a&e for an ECG ( may have been pericarditis again)

Because I was off so long I worked through this period and have not hidden the fact my Gp suspects Rh.a (mum had Ps a but I have bilateral joints and pericarditis) but if I am well at rheum and get discharged they might think I was imaginingvit all.... It's such a worry. I love my job, and my colleagues and am terrified of losing my credibility. Some of the more cutthroat consultants have perceptibly changed towards me.

anne999 profile image
anne999

I was well when i had my first appt, well apart from falling asleep in the waiting room!, my bloods were all normal!, however my MRI and scans showed evidence of disease plus i took photos when i was swollen to show her. Rh said that was enough to diagnose me. x

mirren profile image
mirren in reply toanne999

Thank you so much, when you know you have been ill but functioning for years and suddenly might get some validation and help.... It's daunting. I will go and hope my weird shaped knees and fingers are not just me but Arthritis so I can get well again :)

mirren profile image
mirren

Fed up today. Been really worried about my hands turning blue, knee and ankle pain and ⬆fatigue, then realised I hadn't had to shave my legs or pluck my eyebrows for ages.... Looks like its all naproxen! Probably even all the oedema after Paris. How can I tell if I'm better or worse when the nsaid causes symptoms of a flare??

Also called GP to see if I could collect my 'Urgent' referral letter from 30/6 appt.... It hasn't even been dictated and scary doc only dictates on Thursdays... I'm so annoyed. Im only trying to be proactive but met with animosity from receptionist. I asked for copies of my bloods and ECG too, you would think I'd asked her for the crown jewels.

Can't sleep for knee pain, needless to say not taking naproxen.

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