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Sudden onset RA??

Sudden onset RA??

Very briefly, rheumatologist ruled out RA less than 3 months ago, told me my stiffness and swelling (mainly of shoulder and knees) were OA and my pain is Fibromyalgia.

Three weeks ago my index knuckle on left hand flared, followed by my right hand, then my left hand, now both! GP told me on Thurs that it was not Carpal Tunnel but to try wearing a splint overnight anyway. Not wasting my money I'm afraid 😕

So, the photo is of my hand today after a bit of gardening over the weekend...nothing much, potting a few plants, pruning. I can hardly move my fingers and can't lift a cuppa! Anyone recognise this? So frustrated and anxious 😔 Thanks for reading.

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Hi

I had a sudden ( overnight ) onset which was mainly in my shoulders and knees and I also recognise what you say about first one hand,then the other. RA usually affects joints symmetrically.

Why did the rheumatologist rule out RA or some sort of inflammatory arthritis? Do you know if your inflammatory markers were raised?

I'm sure you are hoping it's not RA but it must be frustrating not knowing for sure what it is.

It's quite unusual to get OA in your shoulders ( without inflammatory arthritis causing it) because OA usually affects weight bearing joints first. I don't know much about fibromyalgia but didn't think it caused swelling.

So....... If it were me, I would be asking my GP for another referral to a rheumy for further investigations.

Good luck and I hope you manage to get to the bottom of it.

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Thank you, yes no inflammatory markers but I understand there isn't always anything in the bloods? Knees are def OA originally but am seeing flares lately there too. Shoulders still to be fully dx but have mild OA in neck that might be contributing. Posture and RSI also possibly to blame but have ortho appt next month, hopefully they'll do MRI.

I really am getting short shrift from my GP and others in the surgery, think I have the codeword for "nuisance" hidden in my records! All I know is that a course of steroids for a chest infection in the New Year made me feel like I was 20 again, pain and stiffness gone. Neither rheumatologist nor GP willing to go down that road. Both said they make everyone feel wonderful 😠

I'm seeing the nurse this week for "MOT" blood tests results etc. She seems to be only inevitable practice who listens to me so I'll have a go! Don't think they've done inflammatory markers though so on and on we go...

Yes I'm worried more as time goes on as lasting damage is a risk.

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Hi

Yes I've heard too that some people don't have raised inflammatory markers so must be very hard to get a diagnosis......mine were through the roof so no problem there !

Hope the nurse listens to you and can offer some advice/ help.

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I had sudden onset on my right hand and 2 months passed until the other hand was affected. I thankfully have never had swelling of the joints but have had pretty nasty flares. I was diagnosed with Rd and continue ,of course with it 5 years later. Chronic pain is a daily reminder I have this disease. I do find that diet has a considerable effect on my inflammation and pain. I do not take Rd meds as They made me worse. I hope all with this disease the very best!

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Strikes me that it is exactly the same as my fast onset RA in discription and visually. I would rethink the splint, they can help alot and very unlikely to harm.

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I think you should be walking into your GPs office and the rheumys with a print out of Sero-negative Rheumatoid Arthritis. I think it's terrible you've been left this way. You can find out my journey by reading posts I've made but needless to say I have SN RA and the letter of complaint I wrote to my GPs surgery meant that others like me without the blood markets are now referred instead of being told it's fine or fibromyalgia (which j was told I had by my old GP). Please contact NRAS as they'll offer support too and assistance with how to proceed forward too. Sorry I've gotten on my high horse but it makes me cross. Keep us posted please. Do you have stiffness in the mornings and fatigue?

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I think it could help to get to the bottom of why the rheumatologist felt it wasn't RA or another type of inflammatory arthritis. Presumably they wrote to your GP after your appointment, so if you haven't had a copy then ask your GP to give you one. You are entitled to see it (they may charge you 10p for the photocopy)

There are several blood tests that should have been done, first off your inflammatory markers (either/both of ESR and CRP). And also the antibody tests for rheumatoid factor (which can be done by GP) and the anti-CCP (usually only done by a rheumatologist). All of these can be negative, and you can still have inflammatory arthritis. However, it's not clear from your post whether you have had these done or not? So do make sure you know, and the exact results.

And as jlmack says, then make sure you ask specifically if they've ruled out sero-negative types of inflammatory arthritis if all these are negative. And ask if your hands can be looked at under ultrasound to look for active synovitis - ultrasound is good for diagnosis and often quicker to access than an MRI.

Good luck!

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Thank you all! I have copies of my rheumatologist letters in my bag ready to call his secretary later to ask to be seen again. I had normal inflammatory markers and ESR, normal muscle enzymes, bone chemistry, kidney and liver function, thyroid and blood count. At time of writing letter he was awaiting ANA and calcium results. No mention of anti CCP!

If I'm honest, I'm morbidly obese and I think that may be swaying judgements 😢 They're all insisting that if I lost weight everything would be better. I know that, but try being active when you're in so much pain, so fatigued and food is your only comfort. He did refer me to Pain Clinic and Weight Management and am waiting to see them.

My mother has RA, my sister has very similar symptoms, makes sense to you and me, but sadly not them...

Thanks so much for your support so far, I will report back 😀

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Hi, Deb_Dragon, That's definitely some type of inflammatory arthritis in your hands. Whilst they needle you about your weight, I never heard of anyone who did much standing on their hands! It would be weight bearing joints that got arthritis through obesity, not your hands, (unless of course you are a weight lifter!) I was reading somewhere that there are hundreds of different kinds of arthritis. Both my husband and I have RA in our hands and they look a bit like yours when they flair-up. Both of us have some swollen fingers bigger than the others on our right hands, where we use them the most as we are both right handed, although our left ones have it too, but are less painful, as we don't use them as much. We find magnetic gloves and braces good. Remember the medical people will tell you anything to get rid of you! People seem to forget that they are primarily there to make themselves a living, not to help people. Kind regards.

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Deb_Dragon - your story could be my story, and your photo of your hand could be my photo of my hand! I have the same as you. My blood tests are always "normal" except my inflammatory markers are always high. I've had chronic joint pain for some time - knees, ankles, shoulders, hips - and now my feet and hands are affected too. My left foot and left hand are always visibly swollen. But still the doctors won't look at the possibility of sero-negative RA!

I have managed to get my GP to refer me back to rheumatology - but there's a long waiting list and my appointment has finally come through for November. I only hope they'll listen to me this time and not just send me away without treatment again.

Anyway, I'm afraid I can't offer you any words of advice but I wanted you to know I'm in the same boat as you - and I'm sure we're not the only ones. It's very frustrating when the medics just seem to fob us off (I've got the fibromyalgia diagnosis too, by the way). I hope you get somewhere with your doctors.

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Thanks again. Scruffyrabbit, my thoughts exactly re the "blame it on the weight" issue! I've had neck and shoulder issues for a while too and admittedly it could be aggravated by my breast weight, or is my head too heavy too!! 😒

Caroline, so nice to hear I'm not alone in my frustration, not nice for you though I know! I don't even have inflammatory markers but then I've not had a blood test whilst I've been having a flare. Do you get numbness and tingling with your pain? Top of my shoulders cramp up, but maybe that's something different.

I did ring rheumy clinic only to be told that as I'd been discharged then I need to be re-referred. Another few months then, on top of the wait to see GP.

Good luck to you all awaiting a diagnosis. If it is RA, or one of the other many inflammatory arthritis conditions, then I'm hoping the fact I have no markers mean that it might not be so severe and debilitating as seropositive RA. Watch this space. Please also feel free to PM me at any point if you want to share horror stories! 😁

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Hi Deb - no, I don't get numbness and tingling. Actually the fact that I don't get those is one of the reasons why I think their diagnosis of fibromyalgia is wrong in my case. Anyone else I spoke to on a fibro forum says they get numbness and tingling - ie. nerve pain. Mine's nothing like that - just severe pain which feels deep in the bone, along with restricted movement and lots of swelling (my left foot/ankle is really problematic tonight - it's so painful with the swelling it feels like it's going to burst).

I don't know if numbness and tingling does happen with RA. One of the others on here might be able to answer that for you.

Oh, I forgot to say in my previous post - RA runs in my family too. Both my mum and her mum before her had it. In fact my symptoms now are absolutely identical to my mum's when she was around my age. Still the docs won't entertain the fact that I might have it though.

Anyway, good luck to you! :-)

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I think you need to go back and see your Specialist or get a second opinion.

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Well guess what! This morning I've woken up with a sticky eye, conjunctivitis maybe. Can't remember the last time I had it, more than a coincidence I think. I did have some blurred vision in work yesterday and it was a little sore last night.

I'm seeing the nurse tomorrow for another reason but will nag her to do some blood tests whilst this is all going on, hopefully those markers will finally show.

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I recognize this completely I am going through the same thing now mine also started with waking up one hand swollen then as time went on it was both swollen in am that's when I decided to see doctor. Now it rotates to my shoulders knees feets back hips and jaw now it's crazy how on minute one joint will be hurting then anther the next. I hope you get help soon hunny and try and get it under control. I hope this for myself too as I can't be seen by rhumy until August.

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Hi Jaclyn, sorry you're suffering so much too. Good luck with the rheumy. Absolutely, one joint after the other!! For the last 24 hours I have been in agony with my left shoulder... had plenty of problems with my right but never my left. I cannot use my upper arm at all, lifting it is excruciating and my thumb is sore. Maybe it's an impingement but it came out of the blue.

I'm keeping a diary now! I have a telephone appt with my GP on 18th, that's all I can get for now 😕 Hopefully I can persuade her to refer me back to rheumy, another few months wait though.

Hope you get answers and the proper treatment.

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The waiting is terrible I know how you feel I had a :-P appt yesterday but like she said it's out of her field and she's not comfortable prescribe medicine she is not familiar with. I can respect that but she did up my pain meds so hope that will give some realieve.

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My joint attacks started nearly 30 years ago. I was convinced I had RA but my bloods were consistently normal despite the obvious swelling and redness. My Rheumy was very on the ball and opted for ANA neg Lupus at my very first appointment and this diagnosis has remained. None of my Docs has ever mentioned Palindromic Rheumatism/arthritis but I have a hunch that this is actually what I have. Many report crippling pain, swelling etc and sudden onset but absence of markers. It is under recognised and consequently under-diagnosed and, as a result, is considered rare but the very active PR group on Facebook will soon make you realise how many suffer with it. It's just a thought. I hope you get some recognition and treatment very soon. Clare x

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Thanks Clare, it's strange you mention Lupus. I spoke to a GP earlier for advice via a health insurance plan I have . She mentioned Lupus and that it is very important that I find out what my ANA results were...I noticed on the rheumy letter that he was still awaiting the results at time of writing the letter and discharging me. I had assumed that I would have been notified if the results may have changed the diagnosis, but this GP gave me the impression that it's not always that straightforward!!

I don't however have a rash but she did say my symptoms were typical of some sort of connective tissue disorder such as Lupus. It's also interesting what you say about Palindromic Arthritis, again some of it fits my experiences. I'll look up the FB group and see what people are saying.

Thanks for your advice and good luck with your issues 😀 x

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My ANA is negative but my diagnosis remains. i dont gave skin rashes either but apparently my presentation was 'textbook'. I may not be typical but no one can dispute the inflammatory nature of my condition. There are many who do not fit the required tick boxes but you need a really good rheumatologist. Xx

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Hi Deb_Dragon,

I would agree with ClareB67 that this could be Palindromic Arthritis.

I have just been diagnosed with this based on swelling of the hands & wrist joints, left elbow, right shoulder and right knee not all at the same time but the pain changes from day to day and the flare up lasts about 2-3 days.

My rheumatologist ruled out Lupus from the blood tests but I had a positive ANA test, Negative RF test but CRP test was 36 (it should I believe be less than 5). He says it could go 3 ways, burn itself out, stay as palindromic arthritis for years (with no joint damage) or precede rheumatoid arthritis. I hope you get some answers and appropriate treatment for the pain. Best wishes, Jay-jay :)

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Jay-jay, Clare, I'm beginning to think you're both right! I've just been reading more about Palindromic Arthritis and it really does fit everything I've been going through the last 4 weeks, and indeed even before that but to a lesser extent. I'm going to speak to Benenden tomorrow to ask for their help with a private referral. Can I ask you both if you've been given specific medication or is it just NSAIDs and regular painkillers? I'm beginning to believe it's not all in my head or just down to wear and tear/obesity. I've said fora long time that it feels like my tendons/muscles or synovial fluid/bursas are being affected rather than the joint itself! Thanks again 😀

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Hi Deb_Dragon,

I'm currently just taking ibuprofen or co-dydramol from the GP as I've only just been diagnosed. The rhumatologist is going to monitor me to see how this develops and will then set up a pain plan, he mentioned sulfasalazine as an option. When my hands flare up I get a bubble effect around my knuckles and the swelling is also painful inside the palm of my hand and wrist.

I also feel that my hands are shaking all the time and he said this could be inflamation of the tendons.

I hope you get answers soon, it's taken over a year for mine to all come together but finally I am now getting answers.

Take care 😀 Jay-jay x

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Hey, guess what folks?!! Two years down the line and I'm still waiting to be seen by another rheumatologist after yet another "flare". Unfortunately my life changed dramatically just after this last post and I have moved and changed Health Authority. I've just about managed to convince my new GP to re-refer me.

So, three months or so ago I had the first signs of a flare...Carpal Tunnel like symptoms. Then just right index finger became permanently swollen and I started developing painful nodules on many of my fingers and thumbs. Then the knees, then my big toe joints, etc, etc. By this time I had access to Prednisolone as part of a rescue pack for my Bronchiectasis. After a fortnight of crawling around the house, being unable to go shopping, feeling almost suicidal, I finally succumbed to temptation and curiosity and took 30mg.

Within 8 hours I was climbing the stairs like never before!!! I have taken them regularly, reduced the dose down to 10mg and taken two or three breaks to see if my symptoms returned. They did. I confessed all to my GP yesterday, he mentioned sero-negative RA, ordered some more blood tests and will chase up the rheumatologist referral that was done three months ago then I first had the hand problems return.

He's also prescribed 5mg Prednisolone a day for now, but I have to try and leave them off totally now before my blood tests on Monday. Rheumatology waiting list is 7 months routine and 2-3 urgent! I am thinking of going private and would welcome any advice about this too. Déjà vu eh?? 🙄

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Could you have a hidden focal infection? Any recent Root canals before the pain started? I recently went through months with RA/MS/Fibro symptoms. Tests showed negative for RA, initially I thought carpel tunnel in both hands...as it spread to my arms an shoulders, and then legs in following months, I got desperate after a bunch of negative tests and had a tooth removed despite there be no pain or sings of infection. 3 weeks later I am almost completely recovered. The weakness in my hands went away almost immediately, but it took a few weeks for toxins to leave my body to be 100%. Good luck. Please note I did not have swelling, but that was the location of my initial pain and weakness.

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So folks, I was right all along... probably! It has taken a totally new GP practice and Health Authority to actually get somewhere. I was referred back to a rheumatologist in January after more hand problems and Carpal Tunnel was diagnosed, 7 month waiting list. This happened last week!

healthunlocked.com/nras/pos...

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