RA joint pain with out inflammation

[Jennicel]

Is it possible for an RA patient to have all RA symptoms except inflammation on the joints?

[helixhelix]

RA, and the other similar diseases, are inflammatory diseases so you do usually have raised CRP +/or ESR levels, even if only quite modest rises. And that usually shows up as tender, pink or slightly puffy joints particularly on your hands, or can be seen on ultrasound. But having said that, these are also very variable diseases so anything is possible as far as I can tell from people's stories on here.

A good rheumy should diagnose based on blood tests, physical symptoms and how you say you feel, and even your family history. So for example if you have a positive RF factor and anti-CCP, plus joint pain, then a doc might consider early stage RA even with low inflammation levels.

[somaiah in reply to helixhelix]

i have in left knee only,it means?

[nomoreheels in reply to somaiah]

Maybe Osteoarthritis? Look up how Osteoarthritis differs from Rheumatoid, that might help.

[jaydeeh]

I've been having a few problems again lately I thought was my RA starting to flare with no inflammation. Saw Rheumy Nurse and its Fibromyalgia as well (and Sjogrens) which I know I have but I didn't really know how to tell the difference. Could this be an answer for you too?

[jaydeeh in reply to jaydeeh]

Sorry meant to read I know I have Fibromyalgia as well. So hard sometimes to type on the phone!

[denden in reply to jaydeeh]

Hi Jaydeeh, how did u eventually know the difference?

[jaydeeh in reply to denden]

The Rheumy Nurse went over the Fibromyalgia points and I yelped. So she explained about certain points in the body particularly round the shoulders I remember and of course no inflammation my hands show no sign of RA for example but of course fatigue as with all these things. It did make sense at the time, I'm already on amitriptlyne at night but otherwise just painkillers.

[Jennicel in reply to jaydeeh]

I also have fibromyalgia.

[Hidden]

Inflammation can be a very subtle thing and for some, more systemic than others. For me it hasn't shown in my joints for well over a year now but my ESR continues to fluctuate and I get tired and have a lot of nerve pain and other issues which affect my autonomic nervous system. I have checked and double checked and my rheumy still says mine is only RA for now. Whether this means that he regards the other stuff as all a figment of my imagination I don't know, but I definitely have high levels of inflammation in my system and still have flare ups that don't involve any joint swelling or pain of this type anymore.

I thinks Fibro that comes with RA for some is to do with the brain's response to pain. Basically it is the synovial swelling - warm, boggy joints they concern themselves with, because this kind of swelling is the destructive kind.

[denden in reply to Hidden]

Hi twitchytoes, can u remind me what ESR means? Been racking my brains from morning and realise Having a brain fog day, pride prevented me asking before now😞

[Hidden in reply to denden]

I thought I'd posted this? Blinking iPhone not behaving. ESR = erythrocyte sedimentation rate. A measure of inflammation in your blood by watching how long the sedement takes to settle. I only know cos I'm a bit of a detail anorak about blood results now! X

[denden in reply to Hidden]

Thank you 😄.

[EasternBunny]

On Sulfasalazine and Naproxen my ESR/CRP levels are in the normal range, however I am still in pain and fatigued sometimes but my joints look absolutely normal most of the time (rheumy doc told me the same when I wasn't able to walk at a weekend with normal level of inflammation markers!).

Initially (years ago...) my wrists were swollen sometimes (but no sign when I got to the gp and blood tests were clear but I couldn't straighten my fingers in the morning, had painful wrists and shoulders and have seen several doctors who thought I made everything up...

[denden in reply to EasternBunny]

Hi Eastern bunny, how are u feeling today? Don't you just hate it when this happens? As if even your very body plots against u 😣

[EasternBunny in reply to denden]

Hey denden, thank you I'm good today, enjoying the scottish summer sometimes I'm not really grateful to my body indeed. But with RD we should learn to appreciate that body more, whatever happens

[denden in reply to EasternBunny]

😃 yeah. 😃

For me it's summer yet have to in bed with bed slippers and under quilt. This constant feeling sense of being cold all the time ridiculous but you know what it

makes me know still alive and can feel! 😊

[moomie]

My problem at the moment is I have swollen boggy fingers knuckles and knees with the pain stiffnes ect. But my crp and esr are still in normal levels.

Both Nurses and a Dr think I should be on biologics but the DAS score is just under because of the bloods. Had lots of steroids and increases in meds since the strat of the year. On 3 DMARDS and NSAID latest plan is to stop mtx for a month if I can manage to see if that will alter the bloods oh and no steroids.

Yes it is frustrating this thing and seemingly nothing is clear cut.

Do hope you get a solution and help.

[Hidden in reply to moomie]

I'm in opposite boat as I don't qualify for biologics only because of lack of joint swelling but as soon as I come off steroids I get awful nerve pain and my ESR and CRP go right up high. If only we could share some of our symptoms we would have a sufficiently soaring DAS each!

But on lots of levels I am wary of biologics since I'm very prone to infections at the moment so I can understand my rheumy and neuro's reluctance to let me try any more immunesuppressants. I bet it's the steroids, even at a low dose, that are keeping your markers low by masking them. Good luck meeting the DAS criteria. And NSAIDs significantly alter my bloods too. Tx

[moomie in reply to Hidden]

Yes let's get together and share. It feels so wrong wanting abnormal test results and even powerful drugs. Don't want either really just for things to settle and get back to normal again. Just getting ready to work my first football match of the season. Hope everyone behaves because I am a bit cranky at the moment lol!

Yes do not need anymore lowering of your immune system with all you have been through. Do hope things settle for you now and you start to pick up and get stronger.

Bloods again on Monday so see what that says its been 3 weeks since my last depot injection.

[noelkruse11 in reply to moomie]

I'm not sure if you've come to realize this yet but with or without high powered drugs your life will never 'go back to normal', you'll get used to the new normal, the ups and downs, medicine side effects are sometimes worse than the disease is. Be careful what you ask for.

[johnjohn]

Ow yes I can hardly walk t both knees in incredable pain not signes of swelling or heat

[magglen]

I have painful,stiff joints with no swelling or inflammation. Otherwise feel reasonably well and am able to walk several miles a day in spite of painful toes. I can't describe the pain to be much compared with how they were when I was first ill and was virtually bed- ridden and in great pain even with strong analgaesics.

[denden in reply to magglen]

Hi Magglen, I am now bed ridden how did you get past this stage, if you have? I can't engage in walking as wheelchair bound but never thought I would long to be back in it as much as I do now. Gheeze 😳

[flow4 in reply to denden]

Could you swim, denden? There are a couple of wheelchair users who use my local pool. I find it helps my pain a lot, and it has been an important way for me to keep mobile while I can't walk much.

[denden in reply to flow4]

Hi Flow4, u have me thinking. For the whole world the answer wld be simple yes/no. But for me I don't know. As a child I did take swimming lessons but as soon as the water got into my ears it would hurt so badly had to stop. Even now can't deal with water in ears. Very painful. Also found floating an issue- couldn't balance myself. Because of this, don't know what I can or can't do in water and I do love all water sports!

😿😳😟 Guess I must be the only novice who attempted to learn to swim with head above the water! 😃hmmm very good question flow4, don't know. With Meniere disease and lower lumbar issues and degenerative C3-C5 discs does anyone know if I could start learning again? I sure would love to! Very good question flow4, very good. Why didn't I think of that?

[flow4 in reply to denden]

Well, I guess that list of complications is exactly why swimming isn't the first thing that springs to mind for you! BUT there are all sorts of things you could try, for instance...

- There are very effective ear plugs these days; and with ear plugs plus a swimming cap, you can pretty much guarantee keeping the water out...

- It IS possible to swim with Meniere's. A friend of mine just started again, 4-5 years after diagnosis. She says it took her a while because her balance was wonky and at first she couldn't work out which way was up, but she learned and got used to it;

- Your lumbar issues might make breast-stroke impossible. Crawl would be fine, but only if you can tolerate putting your head in the water... Maybe something to build up to?

- Even if you can't SWIM, you could perhaps do other exercise in water. Some people who can't walk on dry land CAN walk in the pool. Some can 'cycle' in the water (but that requires better leg muscles!) And 2-3 of the people in my aqua-fit class use crutches full-time but are still able to take part in the water without them.

- You can find a teacher to do a 1:1 lesson/consultation with you. You can look for something/someone with appropriate experience local to you via the internet...

You can search for pools that are disability-friendly on the ASA website: swimming.org/go/disability

[flow4 in reply to flow4]

Oh, by the way, if you're not in the UK, that weblink won't be very useful to you I'm afraid!

[noelkruse11 in reply to denden]

There are water aerobics or exercise classes that a PT could get you in. The pools are shallow, usually only 4 ft deep or so. Might ask for a referral to a PT.

[magglen in reply to denden]

I was virtually bedridden but then was put on Enbrel ten years ago and was soon back on my feet and now able to walk several miles a day. I do hope the right medication can be found for you very soon.

I would think swimming in a warm pool or even moving joints in a jacuzzi would help [a lot of swimming pools have them these days]

I send you many good wishes and am thinking of you xxx

[jasper2014oscar]

I'm glad you mentioned that. I was'nt sure about this but for the past 4 weeks that is exactly what is happening to me. My GP says yes and its not uncommon. I getting really beat up with it. I was'nt sure if it was down to something else but is RA. At the moment its proving hard to control. I'm thankful theres no swelling.

I hope it can be controlled its not nice being in pain.

Goodluck sorry for your situation like mine i hope we both improve.

[denden in reply to jasper2014oscar]

Same here, sometimes I wonder if they were to collate our symptoms would it make things any better or easier for the future? Symptoms without swelling, fatigue and pain, etc.

we are all from different spectrum of the globe but we can all identify with each other in one form or another. Why wait until joints are so severe before acknowledging our concerns? This puzzles me - thought prevention/control is better than cure

[jasper2014oscar]

I told my rheumy about it and all i got was a blank expression she made me feel like i was imagining it. Even more concerning because there is no swelling but heaps of pain she said there was no point in scoring my joints on the das 28 scale so I've got no chance of being considered for biologic therapy ! I just feel like I'm invisible to these people. Everybody is different we dont all have exactly the same symptoms. When will they ever take note and stop bracketing RA sufferers as one and all the same. We are individuals and our disease effects us in many different ways.

Kev.

[Stephpzagain]

This group is brilliant. so helpful to read its not just me. I have chronic feet and hand and hip and shoulder pain and lots of stiffness but only teeny weeny swelling and no raised blood markers.

[popsmith1874 in reply to Stephpzagain]

Hi all in a lot of pain just now in ankles and feet also knees very swollen and bruised,on sulfa and MTX inj on 20mgs. Been on inj amonth before that on. Oral MTX since November,getting worse so phoned my Reimy nurse last week and she's trying to fit me in need to see Reumy soon as I'll never last until november

[Braecoon]

It's 'fingers down a blackboard' (showing my age now) frustration and anger, that we do not fit into the nice tidy diagnosis boxes and often made to feel like second class citizens because we do not fit or respond to the standard treatments or worse still not believed. I score very little on the DAS 28 scoring system as I have one swelling on my left pinky finger and ankle swelling (which is not counted because it's the feet)!!!!!!!? I think we need to start a petition to campaign for feet to be included - they are joints and contain lots of connective tissue after all. If you can't walk or your bones collapse, I would say that is a pretty significant disability, so feet need to be included.

[nomoreheels in reply to Braecoon]

I'll be first to sign that petition Anne!!! The reasons my Rheumy gave me is just as you say there are a lot of bones & as we're constantly on our feet damage could be due to anything. My response was that surely if the joints where RD first presented a patient who also has previous imaging of erosion then they should at least be examined even if they're not included in the DAS 28. Her response was that her hands were tied. At my appointment in February I must have worn her down because she examined them (I include them at each appointment when asked how I'm doing). Her reaction was one of guilt & profuse apologies & arranged an urgent referral to Podietry & increased my MTX. I had an urgent appointment last week where it was suggested I start doubly therapy againl. I have multiple problems, the biggies are walking on bone as I've lost the protective fatty part underneath my foot & my arches have virtually collapsed. Two years they'd been left. What's so annoying is that they work on the original DAS in Spain, a 44 point exam so my feet had always been included & of course if any changes occurred imaging was ordered & meds adjusted or prescribed a short course of steroids.

I really feel for anybody in the same boat, it's not funny!

[binlid in reply to Braecoon]

i think so too last week i felt as though i had no skin on my feet and i was walking on bare bones it was killing me but as you say ive mentioned feet before and ignored

[Hidden]

Most decent rheumies can make a case for someone who's feet and ankles are severely affected by RA - adherence to the DAS28 shouldn't put your rheumy off if there's ultrasound or X-Rays showing inflammation or even this damage in action. My rheumy always checks my feet and ankles - he has X-Rayed them once and he says "rules are there to be broken".

Not sure if it's all talk though because my ESR can be 70 or over with no infection while I feel lousy - and yet this only shows I have autoimmunity not active RA I'm told. Also as Denden pointed out - why wait until irreparable damage is done to joints or organs before trying to get control over systemic inflammation?

[gillpalmer]

I was told as my feet had been x-rayed last year and they all ok, and they would have not got worse in a year. They do not swell but very painfull to walk some times.

[gillpalmer in reply to gillpalmer]

Sorry missed off my post was asking if this is correct or just my rheumy saying this. Thanks.