Arthritis symptoms?? Advice please 🙏🏼: Hello there... - NRAS

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Arthritis symptoms?? Advice please 🙏🏼

CandiR
CandiR

Hello there, would love some advice...basically, I have some symptoms of RA, however, my bloods came back negative, so the GP is wanting to diagnose me with Fibromyalgia, but I’m not convinced, mainly because of the swollen knuckles, my symptoms are....

Painful swollen knuckles (can’t get my rings over the knuckle part anymore)

Very painful and very stiff joints, mainly knees, knuckles and elbows,

Very bad morning stiffness that lasts around 15 mins

My arms get ‘stuck’ with stiffness/pain if I carry anything or hold an umbrella for more than 5 mins

Legs get stiff and painful very quickly If I don’t keep moving and sit for more than 10 mins

Waves of extreme tiredness/weakness

Chronic (unexplained) anaemia

History of recurrent bacterial lung infections.

It does feel like some type of arthritis, it is in the family too,

Any advice would be greatly appreciated! thank you for reading.........

I added pic of the worst affected finger, can’t get my engagement band off and can’t get my wedding ring over the knuckle again, (it’s only the knuckles that are swollen, the rest of the hand/fingers aren’t swollen) 😊

84 Replies

Hi there - did the GP say they are referring you? When you say the bloods came back negative - did they say if there was any abnormalities (I guess it showed anaemia)? When u say negative, do you mean negative for RA?

CandiR
CandiR in reply to Aperson99

Thank you for replying, much appreciated! The GP just said ‘normal no action’ for RA blood test. (I have had anaemia for years, that comes up positive if I stop my Ferrous Fumarate tablets.)..... And no, they pretty much refused referral to anyone (just recommend physio)

helixhelix
helixhelix in reply to CandiR

You need to keep pushing to find out what they mean by negative. Do you have normal inflammatory markers (ESR and CRP) AND normal antibody tests (RF and anti-CCP)?

Sometimes GP’s only do half of them.

If they have done both inflammatory markers and antibodies and both are normal then you will have a hard time getting referred. All you can do is persist. Sorry.

Aperson99
Aperson99 in reply to helixhelix

Yes, completely agree. The bloods are key, as arthritisis is an auto-immune condition, there can be different types, but they will all demonstrate some elevated immune cells or other markers/proteins/enzymes as part of the immune pathway, because in arthritis it will be the immune system direct/indirectly that causes the symptoms. I hope you get to the bottom of it and definitely keep going back to your GP... as patients we can be the worst at pursuing our own needs!

CandiR
CandiR in reply to Aperson99

Thank you very much, I really hope I eventually get to the bottom of it. I had a low neutrophil count result just previous to the RA blood test, but that’s all I know. I shall persevere!

LoneEra
LoneEra in reply to CandiR

I have seronegative RA and consistently normal bloods. But I did have symptoms (swollen toes and knees) that pointed to RA and after a lot of hassle, a locum GP referred me to a rheumatologist. So it is possible, but yes, it takes persistence to get it looked into.

Even if it is fibro (you can occasionally get some limited swelling with this due to fluid) a rheumatologist is the person to see to get a proper diagnosis. I also have fibro, so it’s worth knowing that a lot of the symptoms you described do happen with fibro...stiffness and fatigue in particular. Anaemia is also slightly more prevalent in women with fibro.

CandiR
CandiR in reply to LoneEra

Thank you for that, that’s definitely worth knowing! I think it’s going to be a lot of hassle for me too! I did actually mention to the GP that I’d read on the NICE guidelines about ‘seronegative’ RA.....she just ignored me 😆

LoneEra
LoneEra in reply to CandiR

Oh, I know that feeling of being ignored 😂 Wishing you luck! x

CandiR
CandiR in reply to LoneEra

Thanks very much 😊

Mmrr
Mmrr in reply to CandiR

Other than neutropenia I have normal bloods, but have a diagnosis of seronegative RA and am currently on advanced therapy.

Around 30% of people with RA are seronegative, keep questioning your GP/request a referral.

CandiR
CandiR in reply to Mmrr

Thank you for your reply, appreciated. I have neutropenia also, but am always told ‘nothing to worry about’ if I was fit and well, then I would agree with that, but I’m far from! Perhaps I should try a different GP.....that’s sometimes worth ago 🤔

HH is right about all those tests and I don't think GPs necessarily do them all routinely. Has the GP seen you to examine your joints and mobility or was it all done over the phone and with the blood test results? It's usually the Rheumatologist that diagnoses RA from a F2F appointment and so, as HH suggests, I suggest you keep trying for a referral based on the evidence you have listed.

Good luck.

CandiR
CandiR in reply to Lolabridge

Thank you for your reply, I had spoken to a GP whom, on hearing my symptoms, thought of RA and requested a blood test....however, it was a different locum GP who I then spoke to once my results had come back ‘normal no action’ and she then went off on the fibromyalgia path...I’ve not physically seen a GP yet....I’ll persevere!

Downtime
Downtime in reply to CandiR

I went to my doctor numerous times and had blood tests which came back normal. Finally when I was feeling really ill with swollen joints, fevers, nausea and extreme fatigue I went back and she had a student sitting in with her. He mentioned the fact that you can still have RA with normal bloods and after discussion she reluctantly did a referral. I asked to see someone privately as I was desperate. 5 minutes into the consultation the rheumatologist said I had RA and put me on Methotrexate .

CandiR
CandiR in reply to Downtime

Apologies I’ve only just seen this now! Thank you for your reply. That’s amazing.....what a fantastic student 👏 Thank goodness someone was on the ball. I just need someone like that now!

CandiR
CandiR in reply to helixhelix

Thank you for your reply, I wasn’t shown the results and didn’t have the results explained to me, just ‘normal no action’ but what I normally do, is ask for a printed result. I shall ask, suppose that’s a start 👍

AgedCrone
AgedCrone in reply to CandiR

Take the Physio appointment....a physiotherapist will recognise RA better than your GP....& despite the blood test result......will either. suggest he refers you to a Rheumatologist or will agree with the fibromyalgia diagnosis....& commence some treatment.

You obvious need a second opinion & a Physio is a good way of getting you a faster rheumatology referral.

CandiR
CandiR in reply to AgedCrone

That’s very interesting, I’ll will do then, wasn’t sure if it would be a waste of time, but glad you’ve said that, good advice, thank you!

Mmrr
Mmrr in reply to CandiR

It was a private physio who wrote to my GP suggesting a rheumatology referral would be appropriate that got things moving for me.

CandiR
CandiR in reply to Mmrr

I’ve definitely learnt a lot, thanks very much. I’m booking the physio 👍

Lolabridge
Lolabridge in reply to AgedCrone

Excellent suggestion AC!

AgedCrone
AgedCrone in reply to Lolabridge

Been around a long time LB...picked up a few shortcuts!

Lolabridge
Lolabridge in reply to AgedCrone

😂😂😂

Really really feel for ya I know what you mean coz my RA bloods were normal, however when I had an us on my hands it showed synovitis in the small joints of hands and coz of this they have me on treatment however I have been in pain for more than three years. However even with this shown they won't confirm actual diagnosis of RA they wrote Inflammatory Arthritis, well have really had to keep on at them. Take care really hope ya have the treatment really sounds like RA to me

CandiR
CandiR in reply to Lovetodanceto

Thank you for your reply....So I’m clearly not on my own then! How did they ‘diagnose’ synovitis? Did you have an X-ray/scan? I was basically told ‘without a positive RA blood test, there’s no point sending me for scans etc’ (just so frustrating isn’t it) Thanks for the kind words, means a lot

Lovetodanceto
Lovetodanceto in reply to CandiR

The synovitis was found on the Ultrasound Scan and if it wasn't for this I wouldn't have treatment. Take care.

CandiR
CandiR in reply to Lovetodanceto

Thank you. Yes, I feel this is what I also need. I will persevere! Take care 😊

Charlie_G
Charlie_G in reply to CandiR

Generally, unless you’ve got severe erosions and permanent joint damage, x-rays are less than useless for diagnosing RA or similar. I was at the height of a bad flare prior to being diagnosed, and had x-rays of both wrists and hands, both knees, and my spine and hip, and other than some osteoarthritis in one knee and a little bit of something with a hip, they were all completely normal even though I have inflammatory arthritis in most of them. The most crucial diagnostic test when your bloods are normal is an ultrasound of any symptomatic peripheral joints such as hands, wrists, feet etc.: this will show any active inflammation even if there’s no outward swelling.

I had my first symptoms of arthritis at around 16 in my lower back, then began having major flares in my mid 20s. I was back and forth repeatedly with swollen knees lasting months, crippling pain and swelling in my toes, problems with my hip, and near enough constant lower back and sacroiliac problems, all accompanied by fatigue: because I had completely normal bloods (including crp and esr, the inflammatory markers), they told me it couldn’t possibly be arthritis. I did eventually persuade one GP to send me to a rheum, only for the rheum to tell me ‘nope, your bloods are fine, so no clue why your toes have been swollen and painful for the last 7 months, but come back if it doesn’t get better’ 🤦‍♂️ We eventually moved a significant distance in 2019, and my hands flared properly for the first time that autumn. Told new GP the saga, had the usual bloods: all completely normal, can’t be arthritis. Then one of the stiff, painful fingers became swollen and sausage like in the bottom half. My GP has subsequently told me that swelling was the only reason I was sent for an ultrasound in the December, and had I not had that ultrasound, I might still be undiagnosed now. The sonographer pretty much told me there and then it was inflammatory arthritis, and it was confirmed by rheum in Jan of last year, more than 20 years after my first symptoms, and a decade after first saying there was something obviously wrong.

If you don’t have symptoms in peripheral joints, or you have persistent back/neck/hip problems, mri is often a really useful bet. In addition to current inflammation, it can pick up signs of historical inflammation and swelling, and in my case revealed all the back and hip problems I’d been having - that were even more dismissed than the swollen joints - were indeed long-standing inflammatory arthritis. The rheum requested the MRI after my initial appointment and going through my history, but it really was getting the ultrasound that was key, and ultrasounds are a mainstay of assessing disease activity even once diagnosed. I’d also tell you to keep pushing for referral and answers. Left undiagnosed for so long, I have far more joints involved now than I probably would have done with appropriate treatment, as well as permanent joint damage that might also have been avoidable.

CandiR
CandiR in reply to Charlie_G

Apologies I’ve only just seen this now! Thank you for your reply, much appreciated, that’s all so interesting (but awful for you) My toes and feet are nearly the only part of me that’s ok! Yours sound like crystal arthritis/gout as well as RA! (Only say that because my fathers had it since a teen) I genuinely did not know that about X-rays vs ultrasound, thank you. I’ve only had symptoms 6months, I shall persevere

Lovetodanceto
Lovetodanceto in reply to CandiR

Well take care and keep on pestering them coz my battle has lasted for two years having first of all being discharged even though I knew there was something really really wrong yeah

CandiR
CandiR in reply to Lovetodanceto

You do know don’t you. In a way, I’m ‘glad’ I do have visibly swollen knuckles because all the pain and stiffness is (obviously) invisible, it’s like your making it up, you can’t prove the pain your in!

Lovetodanceto
Lovetodanceto in reply to CandiR

Yeah lovely well hang on in there you will get there ❤

When you finally manage to get it, inflammatory arthritis is actually just as useful as RA in terms of a diagnosis. All RA really means in practice is that you may potentially have abnormal anti-CCP and rheumatoid factor (but not everyone does), along with abnormal inflammatory markers such as crp and esr (although, again, not everyone does), but one of the most useful bits of arthritis for diagnostic purposes - particularly where bloods are normal - is the pattern of joint involvement. For example, RA is typically symmetrical, effecting both joints in a pair even if it takes years for the matching joint to begin showing symptoms, whereas other types of inflammatory arthritis can have a permanently asymmetrical presentation, or are more prone to spinal involvement. Someone with an inflammatory arthritis diagnosis should still get the same treatment, and may get a formal diagnosis of a particular type a few years down the line when rheum have seen how the disease develops over time. I fit the profile for psoriatic arthritis perfectly, complete with history of skin psoriasis in my teens and toenail psoriasis over the last few years, but even with the medics saying they’re 99% certain, my official diagnosis remains ‘seronegative inflammatory arthritis with spinal involvement’ some 15 months post finally, finally getting diagnosed. I’d had symptoms for 20 years, and been back and forth for more than a decade actively trying to get diagnosed but hampered by completely normal blood work, in spite of prolonged periods of swollen joints that responded to steroids.

There will be reasons why rheum are opting for an IA diagnosis over an RA one for you at this point, and I wonder if you might find it useful to ask them what they are?

Ta for that am finding it crazy that they haven't written RA coz my feet was the first to have extreme pain every day when waking and getting out of bed. They were originally going to US the feet then I told the department that my hands had an extreme flare then they changed the US to the hands and that's when they found the synovitis in the small joints in both hands. Well a very long road.

My point is that it could potentially be another type of arthritis other than RA. Pain in the feet is not unique to RA, it could be RA, psoriatic arthritis, even ankylosing spondylitis or a broader autoimmune condition like lupus: these are all different types of inflammatory arthritis. In actual fact, whilst there are patterns of involvement, all inflammatory arthritis can cause pain and swelling in any joint, which is why the overall pattern (along with any other relevant history like psoriasis) becomes important in establishing what it is when someone is seronegative. As a specialty, rheumatology seems to be based 50% on clinical tests and 50% on guesswork and experience, and my understanding is that it’s not that uncommon to have a diagnosis of inflammatory arthritis for years until they’re confident they know what they’re dealing with. That won’t effect the treatment you receive, though, because it’s pretty much all the same for all types of inflammatory arthritis, and inflammatory autoimmune issues more generally. If you have seropositive bloods and symmetrical joint issues, it’s pretty easy to call RA, but anything that deviates from that may not be considered so cut and dried. Like I said, ask your rheum why they’re still saying IA rather than RA - if you understand the reasoning for it, the lack of having the RA label might drive you less crazy.

helixhelix
helixhelix in reply to Charlie_G

Great explanation! And so true!

Sal53
Sal53 in reply to Charlie_G

Hi Charlie_G

I would love some advice too about whatever that I am suffering from especially lately. Everyday I am in distress. You mentioned psoriatic arthritis and I think this is what I have. I was diagnosed with multilevel cervical spondylosis back in 2014. 2016, I started feeling some mild pain on my left side like neck, shoulder and light tingling or numbness in my 2 left small fingers. Then a weird sensation on left side of my face and head which always comes if I carry a bag a little heavy on my left shoulder. I was sooo worried about all this thinking it might be stroke or heart attack or something to do with my heart. I have seen the cardiologist in 2018 who said everything was fine with my heart. I was really relieved then I

Battled to get referred to a rheumatologist after many normal X-rays and blood tests, physio and different supplements, only to discharge me at the 1st appt saying it’s all coming from my neck. Slowly things got worse, I started feeling this horrible deep dull pain, always on my left side on my ribs just at the same level as by left breast

Under my armpit with pressure on my chest and short breath with rest of the others symptoms I mentioned. back to square one with worries about my heart. Did a cardiac MRI: normal then MRI on head and neck last November Which showed degenerative changes at C5/C6 with narrowing of the right side foramen.

And discharged. Now this pain on my ribs is present everyday all day with pressure on the epigastric area which gives me short breaths and I have to always breath deeply in the attempt to get rid of it ans open my blocked chest.

Now I am at lost as I don’t know what is wrong with me and everyday I think maybe I am going to have a heart attack and die.I suffered with psoriasis when young then disappeared for many years now it’s back slightly. That’s why when you mentioned psoriatic arthritis I thought maybe this what I have. What are your symptoms if you don’t mind me asking. I am very sorry for the long message and grateful for any help I may get. My Gp is not much interested

nomoreheels
nomoreheels in reply to Sal53

Hiya Sal53, sorry to but in but have you thought about starting your own thread? That way you can ask your question & it's more likely others could also help, those with experience from a diagnosis viewpoint.

Sal53
Sal53 in reply to nomoreheels

Hello nomoreheels,

Great idea, you are right. Thank you

nomoreheels
nomoreheels in reply to Sal53

I see you've started your thread on the Arthritis Action site. I'm sure you'll receive answers there also but what I thought was to do it here. Not a worry though, the more the better.

Sal53
Sal53 in reply to nomoreheels

I did here too.

nomoreheels
nomoreheels in reply to Sal53

No, not here I’m afraid. You have on the Pain Concern site though, around an hour ago?

CandiR
CandiR in reply to Sal53

Hi, I know this wasn’t to me but read your ‘story’ My mother has exactly the same, and like you, got no real help. Just told never heavy bags anymore and received a small amount of physio years ago. I do know she has to have steroid injections when the pain in her neck/shoulder get too bad. But I really feel for you, really hope you get the help you deserve....

mairtea
mairtea in reply to AgedCrone

Do see a physio! I'd had a painful, swollen wrist, initially diagnosed as tendonitis. It just wasn't getting any better after a year, so I was referred to a physio. She suspected symptoms were RA, and pushed for a referral to rheumatology. Sulfasalazine seems to be doing the trick for me!

AgedCrone
AgedCrone in reply to mairtea

I think this was meant for CandiR?

mairtea
mairtea in reply to AgedCrone

Indeed - sorry!

CandiR
CandiR in reply to mairtea

(Think this was for me!?) Thank you very much....I will definitely book that physio appointment! I’ve learned a lot coming on here! Glad you’ve managed to get some relief too, I’m only 6 months into symptoms, so compared to a lot of you, I’m early days! I’ve got a long journey ahead, really appreciate the advice

AgedCrone
AgedCrone in reply to CandiR

I have only just seen the photo you posted of your hands....have you asked your GP if he has considered Osteo Arthritis?

Your fingers look just like mine did & I was told it is OA...... hope you read this again the first time I wrote RA there Aaaaagh....muzzy head today.

Most of the time it’s no problem...some days my fingers are painful...but not as much of a problem as the RA.

CandiR
CandiR in reply to AgedCrone

Sorry for delayed reply! Thank you for the response, glad you’ve seen my ‘bendy lumpy’ fingers! So have you got RA and OA?

AgedCrone
AgedCrone in reply to CandiR

Yes...I’m greedy got the pair...but tbh apart from wonky fingers the OA isn’t much of a problem....it doesn’t look nice but I’ll settle for that as long as it doesn’t hurt too much.

CandiR
CandiR in reply to AgedCrone

That’s a truly awful buy one get one free offer! Poor you. Does seem to be quite a few of you diagnosed with more than one type of arthritis. If I do have OA, I’m hoping there’s treatment!? I feel as though I’m in my 80s...and I’m 43

AgedCrone
AgedCrone in reply to CandiR

Well believe me being in your 80’s is just fine as long as you don’t let RA rule your life.

Once you are settled on a drug regime that suits you.....life goes on as well as anyone else’s. ....be a little patient & it will happen for you.

Hiya CandiR, welcome, though I do hope there will be no need to stay around, in the nicest way.

Did your GP happen to give you a print out of the blood test by any chance or were you just told that it was negative? The reason I'm asking is to see what the result actually was, the figures basically. You may be aware but there are two types of RD, seropositive & seronegative. Seropositive is when Rheumatoid Factor or anti-CCP is a positive number, you have the antibodies. It is possible though to have a slightly raised RF & not have RD at all, the RF test isn't sensitive enough & why other testing is necessary, that & a full examination. Not all GP's request the anti-CCP test but a Rheumy will include it in his diagnostic tests. Seronegative is when neither test is positive, or a weak positive in the case of RF. Unfortunately often GP's have little understanding of other than a positive result so a delay in referral sometimes then happens.

What should be taken into account is your symptoms, which sound very familiar, except stiffness often lasts longer, half an hour up to an hour & joint symmetry too, though you have pluralised some. Also the inflammation levels, ESR (chronic or longer term inflammation) & CRP (acute or present inflammation) which should have been added to the blood test,

A few years ago all GP's were sent updated guidelines which you can read here gpnotebook.com/simplepage.c... considered to be help or to be an aide mémoir in recognising RD as many who tested as seronegative were slipping through the net resulting in delays in diagnosis & treatment. It's important to not delay treatment, both types respond better the sooner treatment starts. It seems not all have retained the information & from being here it's quite clear that there are still delays of those tested as seronegative as they are needing to return to their GP time & again. Sometimes another pair of eyes are recognising the difference in the two & referring.

Have a read of these nras.org.uk/resource/seropo... nras.org.uk/resource/gettin... nras.org.uk/resource/unders... They may help you, & your GP, or another in the Practice if you feel you'll not be taken seriously or be told it's fibromyalgia again. Either way the Specialist who would diagnose FM would also be a Rheumatologist so why hasn't he referred even if that was his considered opinion would be the question I’d consider asking.

It may serve you well to read through the NRAS site at leisure anyway. Nothing like being informed.

Keep us updated? 😊

CandiR
CandiR in reply to nomoreheels

Hi and thanks so much for all that valuable information! Fantastic. My stiffness and pain is basically 24/7, just more intense first thing on a morning when I can’t bend my legs to walk down stairs. The areas affected are symmetrical, both knees, both elbows both hands, but one finger is far worse than the rest...visually so. I do not have any heat or redness though, and touch wood, my feet aren’t affected. I think I need a different GP, I did mention ‘seronegative’ RA, but she ignored that comment 🤭......I had no idea that it would be a Rheumatologist who would diagnose Fibromyalgia, how interesting! I’ll read all the links you’ve kindly given me now. Very much appreciated. Kind regards Candi

nomoreheels
nomoreheels in reply to CandiR

You're welcome! I'd agree in your thoughts, another pair of eyes often opens up options, especially so if it's a younger, relatively newly qualified GP. Bear in mind that of the required basic 3 years GP Speciality Training plus 2 foundation years to earn their stripes they quite literally spend a day or so on Rheumatology, that is if they don't choose it as their GP Specialty, fewer do, it's not the most popular.

Yes, in the same way a GP can't diagnose RD he can't with FM either. He can suspect, but this is why referral to those who have taken all the exams to become a Specialist is necessary. Only a Rheumy can initiate the prescribing of the meds for RD, though with OA & FM because medication is for symptomatic relief, NSAIDs, pain relievers, antidepressants, all of which a GP can prescribe, you are referred back under the care of your GP.

Seropositive is more common & in the depths of time less is recalled of the more idiocyncratic variations of some conditions, or rather differing to the more frequently presented. This is why if there is obvious inflammation it's helpful as scratchy head time ensues & a referral is made. It's unusual for it not to be hot or red though, that's more indicative of Osteoarthritis, where the inflammation around the joint is harder, not as boggy as RD inflammation. Both have similar symptoms otherwise, inflammation, pain & stiffness except with OA morning stiffness generally lasts less than half an hour & after resting your joints become stiff again. Again stiffness is worst in the evening. I have to get up every hour or so from sitting otherwise I seize up. It's not beyond the realms to have both diagnosed at the same time, I did, but I was 48, a typical age for both conditions. Out of interest, which finger joint is affected, the one nearest the nail or the middle one, or knuckle?

To help you get downstairs without putting strain on your joints you could try some gentle knee/ankle exercises, movements really, on the edge of your bed, just twist yourself round onto the edge. Or, better still, if you shower before attempting the stairs the warmth helps ease stiffness, you could then do some light movements then before heading downstairs. Either should make the pain & stiffness easier, safer too.

If you've not been examined he hadn't the opportunity to see more obvious signs of either inflammatory arthritis. Plus, a blood test alone isn't to be relied on, it only forms part of the picture, like a cartoon before the masterpiece is painted! ✏️🎨

CandiR
CandiR in reply to nomoreheels

Excellent help, thank you so much. Ah...my knuckle/joint swellings are definitely hard, and no redness or heat! I posted a pic of my hand today and someone else has just mentioned OA too! It’s my middle finger joints that are the problem , one feels like a marble. My great grandmother was apparently crippled with OA. I’m 43 (you wouldn’t think so looking at my hands) 😆 and had these symptoms 6 months. Do you have OA and RA?.....Much appreciated

nomoreheels
nomoreheels in reply to CandiR

Yes, I do. OA was the secondary diagnosis, the two were diagnosed at the same time in 2008. Until the differences in inflammation were physically shown me I found it difficult to distinguish between the two, that was after 7 years or so so don't worry. Both can be painful if not treated adequately. This is a problem I have my fingers, I've no longer any cartilage between my DIP joints, the ones OA affected. Nothing I’ve tried to date works well for long enough & the option is joint replacement which I’m putting off for as long as I'm able. I have Buchard's Nodes & Herden's Nodes as well, really bonny hands they are! The PIP joints can be affected by both RD & OA, & my little finger PIP joints are inflamed but like you rings are a problem. I've had my wedding ring cut off twice & had it re-sized up a couple of sizes last time.

Whatever you have it bees treating. Even if it turns out not be be RD you need help so please persevere. See if you can get an appointment with the first GP. He was the one who ordered the bloods wasn't he? Til then we're here if you need anything.

Just to add to what I said above, it’s worth seeing how many of the other common fibro symptoms you do...or don’t have. Could help with your gut feel of it being seronegative RA.

Basically, I wouldn’t want to be pushed into the fibro diagnosis without ruling out other options...for a number of reasons, not least something being left untreated.

There are also still a lot of medics who do not believe fibro is a real thing...and the stories some people post on the fibro forum are honestly heartbreaking. Also very challenging to get benefits and so on.

Anyway...besides pain in muscles (and joints) as well as debilitating fatigue fibromyalgia symptoms often include:

- Non refreshing sleep (you never feel energised after rest)

- waking up very stiff

- headaches ranging from ordinary to migraines

- irritable bowel

- cognitive disturbances including lack of concentration and word mix up

- clumsiness and dizziness

- sensitivity to noise, bright lights, smoke and other environmental factors

If you don’t have any or many of these, it might help disprove the fibro theory!

Hope you can get to the bottom of everything xx

helixhelix
helixhelix in reply to LoneEra

Interesting! I’ve never looked at fibro symptoms before and apart from migraines I have all those, which rheumy ascribes to RA and/or the drugs. Must be hard to distinguish.

I thought fibro was more about the pattern of pain and enthesis.

LoneEra
LoneEra in reply to helixhelix

It is very hard to distinguish! They used to diagnose fibro by looking at the pain and the 18 points test but now they only use that as back up or additional confirmation essentially. Diagnosis is now much more about the bigger picture.

I definitely had some of the above symptoms with MTX - especially the cognitive disturbances. But once I came off it, that improved dramatically. Now it only happens when my fibro is flaring.

helixhelix
helixhelix in reply to LoneEra

Well I’m not looking for another disease, so I will gently tun the page and carry one with the one I have 🙂

LoneEra
LoneEra in reply to helixhelix

Haha. Sounds sensible to me 🙂

CandiR
CandiR in reply to LoneEra

Excellent, thank you!

Hi CandiR, as others have said if you can't get anywhere with your current GP it's definitely worth getting a second opinion. I had to go down the same path after months of pain, stiffness and fatigue. I kept going back to my doctor who eventually ordered a rheumatoid factor test, and when that came back negative he insisted there was nothing wrong with my body and insinuated it was all in my head.

I knew he was wrong, got a second opinion from a different gp who immediately referred me to a rheumatologist. I had an ultrasound, which found damage in my hands and wrists, and I was diagnosed with seronegative rheumatoid arthritis.

There are a lot of crappy GPs out there, and it's exhausting to have to keep pushing for an answer when you feel so ill, but you need to get a confirmed diagnosis so you can get the right treatment.

CandiR
CandiR in reply to mjrminor

Thank you for your reply, it’s sounds a very similar experience to mine! I’ll keep on then! Always helpful hearing other people’s stories, so thank you 😊

Hi. My bloods and xrays were all fine but I pushed for referral to early arthritis clinic and was diagnosed at first appointment with seronegative inflammatory arthritis. The rheumatologist could see and feel swelling I couldn't.

CandiR
CandiR in reply to 1029286

Wow, just shows you doesn’t it! I’m just going to have to push for it, following the advice of another kind person on here, I’m going to take up the GPs offer of free physio, that also sounds like it could help with a diagnosis....perhaps

Hi I have RA but it has never shown in my blood. This happens in a small group of people. You can find a full explanation on NRAS site. Hope this helps

CandiR
CandiR in reply to Wraf22

Yes! I had read about this and did mention this to the GP...but was ignored 😆 I’ll keep on though! Thank you

Hi, I went back and for to my GP for months, he said my bloods were all ok, referred me to a physio and said to progress further I had to go down this route first, after about 3 months and a couple of visits to a physio and the pain getting worse with no improvement despite following all the exercises given I went back to the GP, he said that the pain in my leg (hamstring) was sciatica, I've had sciatica in the past and knew it certainly wasn't, I asked if he'd write a referral letter for me to go private, I read the letter first where he stated he believed it to be just sciatica, I asked the physio if he too would write me a referral in which he wrote that I was presenting with RA symptoms, I gave both to the consultant, sciatica was never mentioned at my consultation and after a number of xray's, blood tests, MRI & an ultrasound scan (which showed severe inflammation in my elbow with a build up of calcium and a spur) was diagnosed in November with psoriatic arthritis, my bloods do show raised CRP.

Good luck with it all x

CandiR
CandiR in reply to Garnacha

Wow....what a nightmare, sounds familiar! I’m definitely going to book the physio appointment and see where that leads me, ‘glad’ (you know what I mean!) that you’ve finally got an answer 😊

I have seronegative RA and nothing shows in my bloods. I have all the same symptoms as you. I was about to start trying Biologics, when along came a new consultant, who decided it was Fibro and discharged me.

Once you have the Fibro tag its difficult to get the RA diagnosed as the symptoms are similar. A good Consultant will look at your joints as a whole as opposed to the GP who goes by your bloods.

Keep pushing with your GP. Please don't give up. Make a nuisance of yourself and hopefully you will get a referral eventually.

You deserve help.

Good luck x

LoneEra
LoneEra in reply to Ticketyboo1

What treatment are you getting now? Do you agree with the fibro diagnosis?

Ticketyboo1
Ticketyboo1 in reply to LoneEra

I am having no treatment whatsoever. Once the new Consultant decided it was Fibro she discharged me with no follow up. She said I could return if symptoms got worse but try telling my GP that, he simply wont refer me.

I've just been left out in the wilderness in the ladt 2 years.

I have a lot of the Fibro symptoms apart from shoulder pain, so yes I do agree but I also know I have OA and RA due to the swollen knuckles and fingers disjointed, along with OA nodules on fingers. My elbows and ankles swell and get warm, I get stiff and generally find mobility very difficult as all my joints are painful.

I actually had to take early retirement from a job I loved due to RA so why does my GP think I don't actually have it now?

I am desperate for some medication so I've decided to go and see my original Consultant privately.

LoneEra
LoneEra in reply to Ticketyboo1

Wow, that’s crazy. So sorry to hear. Sounds like a good idea to go back to see the original consultant. Good luck x

CandiR
CandiR in reply to Ticketyboo1

It really does sound very very similar to me, except I’ve only been like this 6 months, it’s so awful, I really feel for you, it sounds a nightmare. Are Biologics, as you mentioned earlier, a supplement?? Ahiflower oil capsules are good (if you can take them) But, obviously....you just need proper help, I really hope you get some

CandiR
CandiR in reply to Ticketyboo1

Thanks so much for that, I won’t give up! It’s reassuring to hear other people in the same situation who did get a diagnosis in the end...thank you

Not everyone with RA is positive for rheumatoid factor, if it's in your family I would ask your GP to refer you to rheumatology to get checked out. Because the rheumatologist has an arsenal of meds that can help you and that can also stop your joints from being damaged further

CandiR
CandiR in reply to SueBaker

Thank you for your reply, much appreciated. Mother has some form of arthritis, her grandmother was crippled with some kind of arthritis and my father has had gout since a teen. So although there’s not RA in the family (I don’t think) there’s is a certain arthritic element there. I told the GP I was very concerned about the damage to my joints, but she replied..... ‘nothing to worry about as your bloods came back negative, you should be happy you don’t have RA’ 😳🙄

Just go to a private rheumatologist. My Rheumatoid factor is -be so I've got Aero negative inflammatory arthritis. I had to see private consultant at start. £170 but it was that or 18mth waiting list and I couldn't walk. Once diagnosed...based on nhs bloods and an ultrasound I was seen reasonably quickly by nhs consultant and started treatment.

Your GP is likely great... As a GP...but not neccesarily at a complex blood picture. And it's OK to get a second opinion.

Good luck

Thank you for your reply, much appreciated,... to be honest, £170 is worth it isn’t it! I’d definitely look into that....thank you!

I thought so, I was seen within a week, although had to travel an hour and a half. I actually went twice in the beginning as the GP would not believe the consultant (probably because they didn't know them personally, I live in a small place) and then refused to give the recommended initial treatment. I went back and got a steroid injection, so had to pay again but it worked so fast and I was so much better and then got started on all the drugs.

That was 3 1/2 years ago and I'm still not on a stable dose of anything and still sore. I hope you haven't got this but a consultant will be better able to give you a diagnosis.

What an ordeal! Sounds as though you’ve been let down, does your GP support you now? I do worry I’m going to have a battle too 😳

You have to stay positive, it could always be worse...sometimes it's very difficult but take the drugs and carry on.🙈

I have good support now there are specialist rheumatology nurses I can ring for help and advice and the GP is grand. It's difficult for them as they often don't know about some of the treatments the consultants prescribe. There are great medications now so once you get a diagnosis it will be better.

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