Where were your first symptoms : Hello All After... - NRAS

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Where were your first symptoms

Juliehh73 profile image
21 Replies

Hello All

After having a bout of viral arthritis which never really ‘clear up’ my GP sent me to get my bloods done to get for rheumatoid factor and a couple of other inflammatory markers (forgive me I can’t remember what they were called)

Anyway, my results have been ‘lost in transit’ so had to have them redone.

But in the meantime, I wonder if you very helpful people could tell me what your main systems were?

I ask as I do have the swelling, pain and stiffness in my hands and wrists, but also in my knees. My GP is telling it is unlikely to be RA if I am experiencing symptoms in my knees....... but reading your posts it doesn’t seem that RA is too choosy which joints it attacts!

Many thanks

Julie

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Juliehh73 profile image
Juliehh73
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21 Replies
wishbone profile image
wishbone

During and following long walks with my dog in the hills, and in order of appearance......

Feet, wrists, knees. No real swelling to speak of in the early stages, but that needn't occur for the joints to be very painful.

helixhelix profile image
helixhelix

Huh! My knees were like balloons when I was diagnosed....

wishbone profile image
wishbone in reply tohelixhelix

I never had much swelling in the early years. Even now, though a number of my joints are deformed and ankles & knees are permanently swollen, though a little less now I've started back on meds. None have ever reached the balloon stage as happens with some folks, including your good self. :-)

Evaflo10s profile image
Evaflo10s

My knees have been huge since the start !

Matilda_1922 profile image
Matilda_1922

Hi

My symptoms started in my wrists and hands. No swelling just pain.

GP thought of had carpal tunnel so my Referral was sent to a hand specialist who did some tests one was nerve conduct and another was mri. They said at the time that what I'm describing doesn't sound like carpal tunnel.

Nerve conduct studies came back normal but mri showed synovitis.

oldtimer profile image
oldtimer

When I first started I found it difficult to cross roads because of pain in my ankles, feet and toes (as well as my wrists and hand joints) but no-one pays any attention to those, so they are not listed in the text books! But Bath - where I went for diagnosis - kindly injected my feet joints as well as a demonstration for the students there and miraculously I could walk again.

Doughnut61 profile image
Doughnut61

I had pain everywhere!! Don’t be fooled!! Ask for anti ccp test this is only when it showed and was very aggressive x Good luck x

For my husband this was the order over a 6month period: Neck, one shoulder, both thumbs, top of feet, one ankle, then diagnosed when major flare all joints swollen,even breastbone/collarbones. i do wish GPs had some updating re RA, but as you say RA is not picky which joints or which people it goes for. All the best.

Mainly hands, wrists etc but yes other joints too nd had it in hips (mirrored) and told unlikely for RD, like you, huh? X

Juliehh73 profile image
Juliehh73

Thank you so much for all you replies.

I certainly think my GP could do with a little refresher course in the signs and symptoms of RA....... he initially told me that My family history of grandmother and two aunts with RA as well as already having hypothyroid myself didn’t make the slightest bit of difference to chances to getting RA myself, then change his mind. Later he tells me not to hurry getting my repeat blood done after my result when astray, as they weren’t anything really important!! And his parting punch was it can’t be RA as it effects your hand and feet first....... my knees are more swollen and painful than my mothers and she’s three weeks post knee replacement!!!

I think I just need a new GP who will take the time to listen and refer me to a rheumy. X

Mmrr profile image
Mmrr in reply toJuliehh73

Juliehh73, my hand's, feet, knee and neck joints had bothered me on and off for years. My presenting symptom's were fatigue and a red swollen circular patch on my right foot. My GP initially suggested tendonitis and migranes (of which I knew it wasn't). I was so Ill and was visiting her most weeks. I tried 3 other GPs in the practice and got no further, one more or less said I needed to stop visiting them . Another suggested I had a Mortons neuroma. I visted a private podiatrist, who sent me to A and E, who sent me home. I tried a private physio who referred me to his companies Dr who thought I had chronic regional pain syndrome and sent me back to the GP, with a letter suggesting I needed further investigation. She then referred me to rheumatology.

So, you need to be strong and insist on further investigation. Most GPs have very limited knowledge of RD, many know nothing, and to be fair are under pressure not to refer on due to waiting lists. You need to be insistent and directly ask for a referral, if refused ask why.

Fra22-57 profile image
Fra22-57

My right shoulder and right hand.the hand was twice the size of the other.

Millysmum profile image
Millysmum

Started with hands and feet, a month later right knee, kept going until had bakers cyst rupture, and that was not so nice.... Saw rheumy, had steroid jab and big course steroid pills. Worked a treat, on methotrexate 15mg. Hands and feet went, knee was 95% better. However, been off the steroids 2 weeks and its all slowly creeping back.... So disappointed.

brightangel profile image
brightangel

There is a family history of an older sister who had it from age 19. Given I grew up seeing her showing obvious signs I didn't necessarily pick that my first sign was for RA.

The first thing I noticed was that my fingers seemed to be twisting to one side, ever so slightly. It was like the fingers and nails had a slight lean to them

As I wore a lot of rings and was paying attention to them not getting lost, I did notice. The next thing was after a recent fall, I found my wrist gave out when I was trimming a plant. I put it down to injury rather than R.A. until it became really obvious.

lynz1983 profile image
lynz1983

Mine started in my left hip due to damage from a slipped upper femeral epiphysis which was corrected when I was 12 after being undetected for a year and also my lower back but at first both where put down to weight gain due to being pregnant was only after my son was born and the pain continued I was was regarded back to the consultant that delt with the SUFE 9 years earlier.

marie66 profile image
marie66

Like Matilda for me! Tingling numbness in wrists and hands so sent to orthopaedic all set for carpal tunnel surgery when left wrist and hand ballooned up like elephant man! Surgeon took a look and referred me to rheumatology, who said no doubt RA - they would have found it quicker if it was in the bloods but I'm sero negative so it was missed! M x

Maggsie profile image
Maggsie

Mine started with one swollen finger joint, I mentioned it to a locum GP because I thought I had damaged it playing hockey. Lucky for me he was a rheumatoid specialist and he sent me straight to hospital for tests. RA was confirmed within a week. 32 years on I've had all of my knuckles replaced, a plate put in my thumb, one full and one partial shoulder replacement. All have been somewhat successful but have left me with very restricted movement in my upper body meaning I need quite a bit of help and support. I now have problems with feet and knees but not sure I can face any more ops!

Mine started with pain and swelling in one finger joint and then moved on to most of the other finger joints as well. I also felt like my arms had become too heavy for me to bear the weight of them and they hung from my like blocks of concrete. I just didn't know what to do with my arms in bed at night at the time.

Pulfs profile image
Pulfs

24yrs ago mine started as neck pain by time I had looks test both wrists were very painful. Results showed sero positive RA . After that diagnoses my whole body became painful and was hospitalised for 3 wks till they sorted meds out for me.

Keep badgering your GP and ask for referral to a rheumatologist .

Good luck x

beeckey profile image
beeckey

Mine started in mt wrist.I had my wrist fused but RA was never brought up then about 2 years later it hit me hard my feet first then moved to nearly every joint including my jaws

Shalf profile image
Shalf

Hi Julie, mines started in right shoulder but was a year before correct diagnosis. I then had a very swollen and painful finger. Was sent to hospital and blood tests revealed RA - RF positive.

Change your GP love!

Suzie x

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