Swelling and pain without raised crp or esr

[Legley]

Hi saw my ra nurse last week who said its possible swelling finger joint amd overall pain

Could be down to fibromyalgia and not my RA as crp and esr levels are not raised.

Pain that l am feeling is joint pain and stiffness

Is it possible

[Deniseelk]

Hello! I have swelling / hot joints but my bloods have never been out of range ( apart from my anti-ccp). I have RA. Luckily, my Rheumatologist goes by how I am feeling together with the visual of inflamed joints / my pain level / my fatigue and not on my blood readings.

[Legley in reply to Deniseelk]

Thank you love u made me feel like lm not losing my mind.

[Jacey15 in reply to Deniseelk]

Me too. Anti CCP positive, pain and swelling but normal CRP and ESR.

[Matilda_1922]

I have the same problem my rheumatologist goes by bloods not how you are feeling. My inflammatory markers are rarely raised.

I saw my consultant a few weeks ago and completely dismissed my right elbow which is painful and I can’t straighten and it feels heavy. I have had steroid injection into the same elbow over the last 3 years but last one didn’t work. There is also swollen patch at the back of my elbow and I pointed this out too. Said it’s not anything to do with RA and didn’t do anything. By the way the consultant said the swelling was fatty tissue and there was no sign of synovitis. (How can you tell there is no synovitis without an ultrasound).

I’ve seen my GP who was gobsmacked that I couldn’t straighten my arm as well as pain and swelling. I’m going to have a X-ray which will show any synovitis but may show some degeneration

[Mmrr in reply to Matilda_1922]

My experience with seronegative, or for some others on this site who have low blood levels of markers etc is a nightmare. It is a case if 'computer says no' these days. All diagnostic ability has gone , but in a few Drs.

You need to keep fighting and asking for evidence , if they are saying 'no' to active disease due to absent blood markers, then what evidence do they have for their alternative diagnosis?

Evidence cannot be selectively used.

Be confident, be polite, but be determined. Remember Drs are only public servants, be confident.

[Matilda_1922 in reply to Mmrr]

I have seri positive RA but crp or esr are rarely higher than 12 on diagnosis crp 18

[Legley in reply to Mmrr]

Hi Mmrr

Im also sero negative and my crp and esr have always been within normal range. Its just frustrating that my pain is now down to fibro not RA and yet still same stiffness and issues with moving in morning

Thank you for ur advice x

[helixhelix]

Do you know how your ESR/CRP has reacted in the past? Some people do have naturally low levels. However if previously your ESR/CRP have behaved "normally" - ie gone up when you have had active disease - then it's more likely that there's another cause for the pain.

[Sarah_89]

Hi Legley,

I’ve posted about this recently and it seems that quite few people have this same thing; where inflammatory markers are low yet there is definitely active disease. I had quite a bit of damage to my wrist during a period where my ESR and CRP levels were very low, so it’s definitely possible.

I don’t know much about fibromyalgia but it may be a good idea to persevere with your RA nurse in any case.

Hope you manage to get this sorted

[Legley in reply to Sarah_89]

Thanx love been looking on report and crp under 5 and esr 7 which lm still none the wiser.

I just feel with latest diagnosis of fibro ontop of RA that at mo they saying its all fibro as lm on leflunomide for RA and to nurse its working

[barbieg]

I feel for you as I had a long fight last year with my Rheumatologist who kept insisting my ongoing pain was down to my Fibromyalgia. I kept telling her the pain was different, but my bloods were always within range. In the end I insisted on X-rays and Ultrasound tests, but also stopped my inflammatory pill that I take alongside the Sulfasalazine I was on at the time for 48hrs before the ultrasound. Thankfully it showed up synovitis so I was listened to at last, and have now been put on Methotrexate. Keep asking questions such as “why do you think it’s Fibromyalgia if I’ve not had X-rays and Ultrasound tests?” I feel it’s a curse being diagnosed with Fibromyalgia but as I’ve had it for 30yrs I can tell the difference. Wishing you all the best and good luck.

[Basilly]

I posted about this recently as I had the same as you. I recently had an isotope bone scan which showed the inflammation in my joints from RA that I had been feeling for years despite the normal blood tests. My rheumatologist now says I meet the criteria for ‘anti-TNF’ medication, so I’m pleased that I had the bone scan but can’t believe that it took the scan for my rheumatologist to realise how bad my arthritis is and has been for so long.

Keep pushing if you aren’t getting the support that you need. It made me realise that the pain is not in my head! Wishing you all the best x

[CatAngel]

I wish I had joined this site sooner. I have been diagnosed with just fibromyalgia because the rheumatologist was going off my bloods only. I had a bad flare a few years ago which left me with shoulder impingement and I have just had my wrists diagnosed with carpal tunnel syndrome. A wrist xray showed I am generally osteopenic (thinning bones precursor to osteoporosis). My rheumatologist wouldn't do scans or xrays at the time. She gave me a depomedrol shot which was supposed to rule out fibro if it helped me. It helped me 100% but because my bloods weren't showing enough markers she diagnosed me with FMS. I am having another bad flare and my current gp listened when I said if it was just FMS then why are the areas that flare getting damaged permanently and I actually am having raised temp during flare. My latest flare has gone for my hips and elbows.

[Hidden in reply to CatAngel]

I was miss diagnosed first told I was depressed then I didn’t have RA because my bloods were good then 5 years later diagnosed s- negative RA. My bloods were still good but my feet and hands were a mess ( still are) I reckon I had RA 15years or more before diagnosis. Wish I knew then what I know now. I now listen to my body if I’m not happy I fight my corner although this often takes time and many doctors visits but I don’t give up . Finally being listened to and things a moving all be a bit slower than I would like.

[CatAngel in reply to Hidden]

I am glad you are being listened to finally. Thank you for your reply.It is so hard when you are so ill and have to try and find the energy to fight. The FMS syndrome has never sat comfortable as I have hot joint that swell and a low grade fever. I have no reason to start with carpal tunnel bit after a flare my hands were weak and agony. I have been just dealing with it all for a few years but I am at breaking point as I flared last summer and am currently flaring atm. My latest gp ordered bloods and noted my temp with no signs of infection. She listened to my concerns. My bloods came back and they rang and booked me for more bloods next week as they were borderline again. I don't want to get my hopes up as I am so used to being told there is nothing and no pain help etc. That's why I started researching as I feel so lost. It is nice but super scary to know I am not alone.