Symptoms: Ow do not asking for help more out of... - NRAS

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Symptoms

Happy5 profile image
49 Replies

Ow do not asking for help more out of intrigue, what were your first symptoms when you were

diagnosed with RA/RD?

Mine was pain in left foot, to the point could barely walk on it. Asked for test for gout , lupus course came back negative but the GP told me it showed RA & sent me to RA dept asap. Have to say all the medical staff have been great treating me.

Have a good un 😊

49 Replies
CripLady profile image
CripLady

Mine was pain in my shoulder and arm. I made my own sling and wore that for a couple of months before going to my GP. Saying that I had been having ridulous fatigue for a few years, which had never been investigated. I put forward the suggestion of RA because of family history after discussion with them.

Lolabridge profile image
Lolabridge in reply to CripLady

It’s interesting that your early symptoms were very like mine. Shoulders, arms and fatigue rather than hands.

Boxerlady profile image
Boxerlady

Had what felt like post viral fatigue (although I didn't think that I'd had a virus) for several days and then my fingers became very stiff, swollen and sore which sent me to the GP.

Interestingly, I'd had something similar many years before but that was after a bout of stomach flu and I also had a non-itchy rash (didn't realise until GP examined me) and was told that my immune system had gone into overdrive and it would settle down. As hand dexterity was ( and still is) vital for my job, the GP gave me a short course of medication which I now suspect was steroids. On that occasion it did resolve but I now suspect that was my first RA attack. Very grateful that it didn't reappear for 30-odd years!

Fruitandnutcase profile image
Fruitandnutcase

Mine was pain in my fingers and at the base of my thumbs, also I didn’t have the strength to pull plugs out of their sockets - by that time I had bought and was using plug pulls. My doctor listened then tested by shaking and squeezing my hand then asking ‘did that hurt’ - of course it did. So good man that he was, he fast tracked me to rheumatology. When I said that my fingers looked ok he said ‘if you treat people early their joints don’t need to become deformed’

I’ve met so many people with distorted fingers whose doctors have just said ‘tough’ take a paracetamol for the pain. It really is a lottery who you see and how you are treated.

MadBunny profile image
MadBunny in reply to Fruitandnutcase

It certainly is! I was seeing my gp about my knee pain for about 3 months , everytime I asked him to look at my hands he ignored me.He referred me to an orthopedic specialist re my knee- I asked her to check my hands, she did , said it might be RA, sent me for blood tests , when the results came back she referred me to rheumatology, and the rest, as they say, is history 🤗

MadBunny profile image
MadBunny

Mine started with pain in my fingers , then I got it in my wrists.At first the osteopath thought it was either RSI or carpal tunnel and gave ne wrist supports. It spread to my elbows and then my shoulders. I was already being seen by my gp for knee pain but he didnt want to know about my hands. It was the orthopedic specialist who picked up on the RA .Once I saw the RA consultant I was started on treatment. By the time I saw him, though , I was in so much pain I could barely use my hands or lift my arms. Another gp put me on steroids while I was waiting, and they did help.

I remember,when it was at its worst, being scared I would never lead a normal life again. But 15 yrs on, here I am, on a biologic and have my life back.

Wishing you well x

Sunshinereturns profile image
Sunshinereturns

Mine was textbook stiff fingers for about 12 hours a day. No let up. After two months spread to back of knees then I knew what it was - was already undergoing tests at GP’s at this time and saw a rheumatologist soon after.

Neonkittie17 profile image
Neonkittie17

Fingers and toes for me. I was told it often starts their in pairs. We’re all different though.

HappykindaGal profile image
HappykindaGal

intense pain in my right knee and complete loss of strength in it so couldn’t get up off chairs etc..whilst on holiday. Came off the plane in a wheelchair.

Got home and went to the GP. She watched me have 20 attempts to get up and knew what it was straight away. Did a blood test and rest is history. It almost immediately spread to my wrists and shoulder so couldn’t hold a cup, pen and steroids then kept me independent at least. Then biologics which changed everything. It was brutal though. I still managed to drag myself to 6am business networking events. Looking back no idea how as driving made me cry and I was wearing all kinds of compression stuff. No option when you’re responsible for other peoples mortgages etc…though. I am quite hardcore! I probably wouldn’t recommend it.

I was fortunate in that it was so obvious very quickly what it was that I wasn’t pushed from pillars to post.

Julied24 profile image
Julied24

Interesting question 🤔

Mine started in my feet. I developed horrendous pain and trouble walking in the summer of 2018 - saw a private podiatrist who diagnosed plantar fasciitis but also referred me to the hospital. The Podiatrist there was concerned something else was going on (i.e. RA) so asked GP to do blood tests, which came back negative.

However in January 2017 whilst away on a mini break, the foot pain came back so severe that I could barely walk and by the end of the week my knees, hips, shoulders, elbows, wrists and fingers were also severely swollen and painful. My GP started me on steroids and codeine for the pain, whilst I waited for an urgent Rheumatology appointment at the hospital. But by the beginning of April, in desperation as I still hadn’t received a date, I arranged a private appointment and was immediately diagnosed with seronegative RA (hence why my blood tests were negative!) My consultant was amazing and was absolutely furious that I hadn’t been seen sooner at the NHS hospital and even delivered my first prescription for Methotrexate to my home for me. And it’s been an interesting “journey” ever since!

Sorry for the long reply but it was actually really interesting to think back to how it all started.

RAexperiences profile image
RAexperiences

i thought I broke my baby finger yet there was no “incident@. Went to GP who was feeling all my fingers only to notice quite a few were painful. Biggest symptom was crippling fatigue like I had a flu. Couldn’t do a thing (athletic). Now rheumi switches between RA and psoriatic arthritis diagnosis for me.

Pollypoppet profile image
Pollypoppet

Mine started in my big toe. I couldnt stand anything touching the skin and the pain on lifting from the floor was unbelievable. My Dr sent of blood tests and my inflammatory markers were very high. The toe pain and sensation were my only symptoms for some time then i suddenly had a raised line from my middle finger running to my wrist. It looked like a line of poison. The next day i had a bubble of swelling on the top of my wrist which was about half an inch high and 3 inches long. Fortunately i had my first appointment with the RA Consultant that day. I had a steroid injection and it helped. I was started on Sulfasalazine, then various meds when symptoms reappeared or had chest infections. Ive tried various biologics and lots of steroids, currently on Abatacept. Still waiting to see RA Consultant to change to another one and trying to put up with regular pain.

achyknitter profile image
achyknitter

My knees both swelled up and became incredibly painful. I was told that I had sprained my knees and to rest. Was eventually sent to physiotherapist a year later but could never kneel down again. 7 years later one finger swelled up for several weeks but went down again. However 4 months later my hands became very painful and swollen and my GP referred me to Rheumatology. Fatigue had been present since my first knee problems.

VeronicaF profile image
VeronicaF

Snap, mine was left foot and I couldn;t walk on it, but I had had pain in other places for ages coming and going and lumpy bits on my fingers

Sarahg62 profile image
Sarahg62

mine was a swollen thumb. This was back in 1980 (I was 18) and my GP diagnosed RA straight away 👍

Mmrr profile image
Mmrr

I had a red painful swelling on my foot and was completely incapacitated with fatigue and brain fog. Apart from being neutropenic my bloods were (sill are) normal.

After many visits to my GP I was given the diagnosis of tendonitis and migranes. She gave me gabapentin then pregabalin neither of which I could take due to side effects, so offered antidepressents and amitriptyline which I refused.

(An incorrect diagnosis of depression followed me around for several years, with a clinical psychologist eventually saying no. My new GP seconds that. I too know that I'm not, and never have been depressed.)

A private physio suggested that a referral to rheumatology might be appropriate. Which the GP did.

Six months after my initial visit to the GP I was eventually seen by rheumatology, there were issues with MRIs, several months later I was started on hydroxychloroquine. I was given a diagnosis of inflammitory arthritis.

Another year on I was given a diagnosis of seronegative RA.

I've taken all the conventional DMARDs, had biologics and now take JAK inhibitors.

I'm presently changing rheumatologists.

tanya1981 profile image
tanya1981 in reply to Mmrr

what a journey Mmmmr…. How many years did it

Take you to go through all the medication available for RA? And what are the reasons you kept moving to the next one?

Mmrr profile image
Mmrr in reply to tanya1981

That's only part of the story.

I've struggled with side effects, and many meds just have not worked.

Happy5 profile image
Happy5 in reply to Mmrr

What a nightmare for you, 🤗

lolamylo profile image
lolamylo

Was perfectly fine then Over the period of about 3 days, I felt like I had been hit by a steam roller, in severe pain in every joint, couldn't keep my eyes open, and my joints were all very hot, even my skin was sore, thought I had a bad flu but it didnt go away and my hands, elbows, knees, ankles and jaw began to swell. At that point I sought medical advice.

Egpa profile image
Egpa

hi Happy5, mine where my arms, legs and feet swell ed up like a balloon, i could hardly walk or bend my joints. It took 22 months to get me wedding ring back on. Nearly 2 years to sort it all out.

Plumcrumble profile image
Plumcrumble

Hi Happy5 I had a swollen index finger that a couldnt bend, then shoulder pain going from one shoulder to the other, and then very stiff knees. Best wishes Sarah x

Otto11 profile image
Otto11

Gosh where to start. I had a very swollen hot knee which kept giving way. I was sent to Orthopaedics who diagnosed a lipoma which required surgery. After surgery I developed a heamarthrosis & had to keep having it drained. I was off work as this went on for months. I then had awful flu symptoms with severe fatigue in bed for days. This occurred regularly every 2-3 months. GP referred me to Rheumy who sent me packing. This continued for next few years with my bouts of “flu” becoming more frequent. Constantly off work sick. I was re referred back to same & only local Rheumy who again sent me away saying nothing wrong. A few years later after really struggling to continue work in pain & constant dreadful fatigue I broke down at GP’s who sent me for a third time to Rheumy this time I insisted something was very wrong but once again I was sent away & my letter said both myself & my husband seemed greatly disappointed that I didn’t have a long term debilitating condition!!! At this point my GP pleaded with me against everything he believed in to go privately in a different area. I had been off work for 6 months & really struggled to walk my feet & knees hurt so much, hands were so stiff my shoulders were painful too. At my first appointment with a different Rheumatologist in a different area 8 years later i was finally diagnosed with sero negative inflammatory arthritis.

I was never well enough to return to work again & got I’ll health retirement at just 45.

That was 23 years ago & im still being seen in the same Rheumatology hospital which is a 50 mile round trip to each appointment. 🙁 x

Happy5 profile image
Happy5 in reply to Otto11

Wow indeed 🤗

Otto11 profile image
Otto11 in reply to Happy5

Bet you wish you never asked! Thanks for the hugs. Much appreciated. Take care x

Happy5 profile image
Happy5 in reply to Otto11

Nah always been told off for asking questions, I'm happy to get the answers too ;)

Mmrr profile image
Mmrr in reply to Otto11

😢 different symptoms , but the same story of not being believed 😢 with seronegative RA

J1707- profile image
J1707- in reply to Mmrr

me too !!

Otto11 profile image
Otto11 in reply to Mmrr

Just one shit consultant. Things were different back then & there was only him & his ego. I did put in a complaint but only wanted an apology. The Chief Executive was very nice & we all sat round a table. I went through my letter & he then said sorry, there was a pause & he then said but I e no idea what I’m apologising for. The Chief Executive screamed at him to GET OUT! And that was my apology!! Thank god he’s long retired. I still have the letter & all these years later still feel so angry about how I was treat also angry with myself for letting it happen. 😡 x

Mmrr profile image
Mmrr in reply to Otto11

My experience was only 5 years ago.

There are still a lot of big egos around

Otto11 profile image
Otto11 in reply to Mmrr

Yes you’re right. It was very different 33 years ago. Take care x

Otto11 profile image
Otto11 in reply to Mmrr

Oh & strangely about 15 years after diagnosis my RF turned to positive so diagnosis changed to sero positive 🤷🏻‍♀️X

Leics profile image
Leics

I’ve always had painful knees since I was a teenager they used to swell often so when I was 16 I went to see a GP who examined me with knee length boots on and was told to soak my feet with a paracetamol in the water. Fast forward to my 40’s and my hands were virtually useless no grip and I had severe pain and swelling in my wrists was sent to an orthopaedic consultant who was next to useless but I eventually went back to GP as by this time I could barely walk and my job was almost impossible to do but I still stuck it out until I was 49 I was put on SSZ which helped to get me walking again and then stopped working and I got hives etc umpteen Dmards later and Rtx which knocked my immune system out (and it’s never recovered) I’m now 58 and back on Mtx my choice and low dose but at least it’s starting to calm things down and I have somewhere to go from here. So actual diagnosis was made in my 40’s I was told I have seropositive RA but now I’m told I’m seronegative so who knows but my bloods are always normal but my life isn’t yet.

oldtimer2 profile image
oldtimer2

In a way I was fortunate to have classical signs of swollen metocarpal joints, wrists as well as in the feet sufficiently severe that I couldn't walk across a road without stopping. Local GP knew a consultant at Bath Hospital for Rheumatic Diseases and got me a rapid appointment. They used me for teaching for quite a while!

Haz58 profile image
Haz58

I woke up one morning and put my feet down on the floor and thought I was standing on glass or pebbles. I looked and nothing there. It was very strange. When this happened for a few days I saw a doctor and he said it wasn’t Morton’s neuroma (I’d googled the feeling of walking on glass or pebbles) but possibly RA. Had blood test and my counts for it were very high. So referred to rheumatologist. Took nearly a year to get to see her. By that time id got dreadful fatigue, swollen fingers and felt dreadful. It all started in July 2020.

madme1 profile image
madme1

Mine was being barely able to move i woke up one morning screaming in agony. Couldnt walk hubby had to carry me up the stairs to the bathroom as it had affected my control of bladder and bowels. I had been waiting over 3 months to see a specialist who then accused me of lying to him. I finally adked my own doctor to admit me to hospital that day. I was so ill i could barely stand. Doctor said my thrn 82 year old mother looked fitter than me. I was told at the hospital that the inflammation of my body stood at 148% its was off the scale and had started to affect my major organs. Thankfully with fluids and antibiotics im still here.

Happy5 profile image
Happy5 in reply to madme1

🤗

dippyd09 profile image
dippyd09

like you my first symptoms were in my feet. They were agony with a bit of discomfort in my hands and wrists which quickly evolved to a lot of joints. Everyone has different experiences of RA, thankfully not everyone has severe disease. Hopefully with the correct treatment quickly enough your pain will lessen.

Happy5 profile image
Happy5 in reply to dippyd09

I'm ok at present thanks fascinating reading everyone's experience. 🤗

Sheila_G profile image
Sheila_G

I was absolutely fine until one morning I woke up and couldn't unclench my fist. I got an emergency appointment with GP that morning, blood tests that same afternoon, diagnosis following morning and private appointment with Rheumatologist 2 weeks later. Brilliant but that was 20 years ago.

Happy5 profile image
Happy5

Well thank you one and all very interesting, amazing how individual our first symptoms were. As it progressed I recall at night I ould wake up with what was like fire in all my small joints. Ankles, wrists , shoulders & neck, thought to myself "don't know what I've got, but it'll kill me "

Ten years on and caring treatment has helped me to get some quality of life. Worse thing is ones who knew me before deciding I'm too disabled to be included in things.🙄

Onwards and upwards my lovelies 😀

Otto11 profile image
Otto11 in reply to Happy5

I I’m sorry to hear about your so called friends. I had exactly the same thing happen. A couple of work colleagues visited once or twice then stopped all contact. Friends I’ve had for a long time have stopped asking me along to things. I’ve really struggled with that tbh. It hurts. Sending 🤗 xx

Happy5 profile image
Happy5 in reply to Otto11

Thanks Otto11 fortunately our son and wife are gems, then again my daughter-in-law has a cystic fibrosis condition. not diagnosed till about the time she had their son, late thirties. They've been life savers and we've been able to look after our grandson two days a week since he was nine month so mum could return to work.

Gives a lot of insight into people their reaction eh?

Have a good 'un

Otto11 profile image
Otto11 in reply to Happy5

I’m pleased you have support. Take care x

Evie3 profile image
Evie3

painful feet first then hands. RA undiagnosed for a year. In my 4Oth year of living with RA…..where did that time go?!

jf211 profile image
jf211

mine - pain in the feet like walking on marbles in the mornings - and much of the day at 1st

Interesting - they don’t use feet for scoring joints - but when examined, hands were also involved

Blodynhaul profile image
Blodynhaul

Originally, horrendous pain in left wrist, like electric broken wrist, but no swelling, redness or inflammation, no external sign. Looking back think it was neurological response. Then 2 days later the right wrist joined in. Hands constant painful aching too. It started after a very bad reaction to larium, anti-malarial drug. Wasn't diagnosed for 3 years. All sorts of other joints followed wrists & hands, but they were always the most common problem for me.

Happy5 profile image
Happy5 in reply to Blodynhaul

Relate to the electric broken joint .

🤗

Calla2712 profile image
Calla2712

Pain in finger, just one finger, doctor gave me cream to rub on, Then it progresses to feet and hands . Changed doctors and new gp did blood test which revealed RA, I was 32 at the time.

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