Pain without obvious inflammation..... confused - NRAS

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Pain without obvious inflammation..... confused

girli1111 profile image
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Im about 15 years past diagnosis, (I’m aged 49 now) but still don’t properly understand this disease..... at the moment I know my bloods are good (tested last week), only ESR is slightly raised above ‘normal’ at ‘10’. I’m on 20mg methotrexate plus hydroxychloroquine. But I am in so much pain in my ankles, hands, behind my knees, elbows, forearms, and my fatigue is ridiculous. (Fortunately it’s half term for me this week!). I next see rheumatology in January. Does this sound like RA that is ‘under control’ or should I be looking at changing drugs. My joints don’t (and have never) looked particularly swollen or inflamed, although rheumatologist has noted swellings in finger joints and X-rays show my left hand has ‘moderate to advanced osteoarthritis) in addition to the RA. I just want to know if this is the ‘normal’ that I need to accept now, or can I expect better than this. I thought pain meant disease activity, which equals damage being done, and yet my bloods inflammation levels say otherwise..... I’m feeling really low about this again in the last few weeks! (I’m apparently seronpositive for Rheumatoid factor but negative for ain’t CCP)

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Mmrr profile image
Mmrr

I'm comparatively new to this, being diagnosed under 2 years ago. I'm not yet on medication that controls either my fatigue or continuing joint problems. I'm seronegative, but feel rubbish most of the time.

For what it's worth I don't believe you sound particularly well controlled either. Blood markers are one thing ,but they don't tell the whole story.

It might be worth while contacting the rheumatology nurse for advice. January is a long way off.

oldtimer profile image
oldtimer

The best medical teams take the whole picture into consideration, not just blood tests. Blood tests may reassure them (and you) that your joints are not being actively destroyed and that the medication is not affecting you adversely - as far as the blood test capability goes.

But if you are still having severe fatigue and pain, then you are not being adequately treated. So complain to them, persistently and calmly, that you are suffering.

Mmrr profile image
Mmrr in reply to oldtimer

Oldtimer, just interested in something you wrote above .....my bloods are 'normal' , I have no inflammatory markers at all, yet my hand and feet joints have deteriorated rapidly in the 2 years since I have become unwell. Both hands and feet are very hot, and all joints in my hands were inflamed on scanning last year. Still nothing showing up on my bloods.

oldtimer profile image
oldtimer in reply to Mmrr

It does seem that some people have continuing damage to their joints without inflammatory markers being raised, but this is not usual. Ultrasound may be a more reliable test of inflammation, but I am a bit sceptical as it seems to depend so much on the operator's interpretation!

The other problem is osteo-arthritis developing in joints previously affected by Rheumatoid or Psoriatic arthritis... there are also suggestions recently that OA may be an inflammatory process as well/instead of wear and tear. Confusion reigns.

I am sure that it is important to treat the person, not the disease however measured. Health professionals vary in their acceptance of the patient's point of view. The best ones look at the whole picture, not just the tests.

Mmrr profile image
Mmrr in reply to oldtimer

Thanks for that. Every joint in both hands was inflamed on ultrasound and previous MRI, my hands are often burning hot and stiff. My feet burn and regularly wake me during the night, but have not shown to be inflamed on ultrasound or MRI, so I expect different pathological processes are going on (feet chondrocalcinosis of the metatarsal joints) . The metatarsal joints are so sore at the moment, the result of being told to drop the steroids, and the voltarol and get moving, which I foolishly did. All my drugs are now increased again, I wont be decreasing like this again. I have a new rheumatologist who doesnt know my history. It is so complicated.

I’m also comparatively new to diagnosis. My short experience thus far, using one DMARD is that swelling reduced but fatigue and pain didn’t. My “markers” went from outrageous to normal in blood tests, but the experience was “not normal” - if that makes sense :) I’ve just spent about 4 weeks on no medication and I’ve arrived back at square one, in terms of pain, swelling and fatigue. As you’ve been diagnosed for quite some time, perhaps your meds aren’t working as effectively, and, despite the blood test results, you’re heading towards not being controlled? Based on experiences I have read here, you’ve had a really good run with that combination. I would try and get an earlier appointment, if that’s possible. Hoping things improve for you, cheers Deb :)

nomoreheels profile image
nomoreheels

Like myself & many others you have the added issue of OA, it's determining what is causing pain. Also like myself & others you don't always show inflammation in blood tests, this isn't helpful, particularly when your Rheumy takes bloods as gospel. I don't have answers for you I'm afraid, other than the difference in the slight inflammation you may have, my Rheumy describes it as boggy in RD whereas OA is harder. My OA affected finger & thumb joints the DIP joints (nearest the nails) are square as well.

Has anyone mentioned if your blood is showing low levels in your drug monitoring blood test? I ask as I had been particularly tired then my GP contacted me to have repeat bloods to check my red blood cells again. I was anaemic, she prescribed ferrous fumarate & ordered tests which came back clear. As yet I've no reason for it though she wants me to discuss it with my Rheumy next time, like you in January, see if it's disease related.

I'd ask your Rheumy to perform a full joint examination when you're seen, ask which of the specific joints you mention are RD affected & which are OA, see if you need a medical review from that. I think that's what I would do in a similar position.

girli1111 profile image
girli1111

Thank you, I know that all the tests that are routinely done as part of the DAWN monitoring are normal, although don’t think iron levels etc are checked. Think I I’ll make a gp appointment for now and get them to check the obvious things x

Fruitandnutcase profile image
Fruitandnutcase

This is the weirdest condition. I had blood tests done recently, they all seem ok as do my hand xrays - my rheumatologist is talking OA rather than the inflammatory arthritis I was diagnosed with originally, then another one added in ? Sjorgens - I now wondering if he things there’s nothing wrong we th me.

I’ve got tendonitis in my right foot now - has it in my left foot in August - my feet feel like they’ve flattened out, both ankles feel weird, I wake up in the morning and the muscles right through my buttocks really ache, hands hurt as well as the feet. How can things look like everything is ok when your body is protesting like mad.

I don’t know enough about the different types arthritis but I would have thought ( but I really don’t know much - I’m just going on my husband whose hip crumbled before he had his hip replaced ) that osteoarthritis which I gather is wear and tear of the joints would be more of a grinding pain whenever you moved and wouldn’t make your muscles stiff and painful like what I find worse.

Make sure you rest up for half term and try and do something enjoyable too.

girli1111 profile image
girli1111 in reply to Fruitandnutcase

You sounds so like me! I often say to my husband that my ankles and elbows feel like they are being inflated tightly from inside even though there’s little to see. As for half term rest.... I perhaps foolishly planned to decorate a room ahead of new sofas arriving next month.... my back is killing me after putting up coving yesterday, but it’s good knowing I can progress without needing to go to work the next day! I do have some rest days planned too, and am currently pacing myself with lots of tea breaks!

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