No inflammation showing on my ultrasound so why do I ... - NRAS


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No inflammation showing on my ultrasound so why do I have constant pain in my feet and hands?

Barb66 profile image
25 Replies

I've just got a letter from my rheumatologist following an ultrasound of my hand which shows no inflammation and to use his words my hand and wrist is 'normal'.

Ive taken methotrexate 15mgs for 8 months and hydroxychloroquine 200mgs twice a day for 2 months and my CRP and ESR are low. The only time I feel tolerablely okay is when I take 15-20mgs of prednisalone, Thecradiologist said au would show any inflammation as I was taking DMARDs ( he also said aid be better eating an anti inflammatory diet too)

My rheumatologist makes me feel like I'm malingering and says because Im showing no inflammation my pain and fatigue aren't RA in fact he now has me diagnosed as palindromic arthritis and oesteoarthritis but I have constant pains in my feet, ankles, hands and wrists. My RF is 35 and my anti CCP is 298. I just want a diagnosis and to be believed? I've only seen him twice and really don't want to see him again. He makes me feel I have to 'prove' my illness.

25 Replies
glenb profile image

Do you exercise regularly? I find that exercise is a great anti inflammatory in my fight.

Barb66 profile image
Barb66 in reply to glenb

Not regularly enough - I get so tired. How often do you exercise and what do you do?

glenb profile image
glenb in reply to Barb66

I have pains in wrists, hands and feet also. I try to treat my symptoms with diet and exercise coupled with MTX. I have been doing really well and tried to drop my MTX slowly but I am finding it really hard and the inflammation has returned. I do 30 minutes cardio every day and core exercises plus chest. I cannot do weights because of my hands flaring from the holding of the weights. I push myself and workout even if I am in pain or really tired. Feel better after. Still wake up stiff but it clears as the day passes. I think they say that the sweating washes toxins out of you? I don't know but I know I feel better after the cross trainer. Give it a try

helixhelix profile image

Has your doctor discussed polymyalgia rheumatica with you? If you respond well to steroids this could need to be ruled in or out.

Barb66 profile image
Barb66 in reply to helixhelix

No I haven't - I think I'm going to ask for a second opinion and will ask this. Thank you

I'd recommend exercise too. Understanding exactly what is causing pain can be difficult but exercise can help, I'm certain of that. Quite possibly it can help tremendously. I have a lot of damage in my feet and although there are phases when walking is painful, much of the time it isn't.

glenn's regime wouldn't be for me. Which just goes to show that the right exercise for you is exactly that - any exercise that you enjoy and which you can sustain. Exercising can also lessen fatigue, odd as that may seem. A stroll is exercise, swimming's brilliant, mowing the lawn, using an exercise bike in front of the telly ... anything is good as long as it happens regularly 'cos results don't show themselves overnight. Something that I've found absolutely great for foot pain is Tai Chi. And many Tai Chi classes are popular with a range of people including those with disabilities and chronic diseases. When I do Tai Chi my feet typically hurt A Lot for about 15 minutes and then the pain gradually eases up and the relief lasts all day.

I can see that you need to keep chasing a firm diagnosis. I'm a little surprised by your rheumatologist's attitude, pain is so commonplace with RA and other forms of inflammatory arthritis, even when inflammation is under control. You shouldn't feel that you have to 'prove' that things are difficult for you. Might a referral to another rheumy be possible?

Barb66 profile image
Barb66 in reply to

Thank you Postle2 I'll try Tai chi that's really interesting and reassuring to hear zi can have pain without inflammation. He's a locum Dr and I don't think he's bothered and interested tbh!

in reply to Barb66

I found tai chi boring and frustrating and I hated everyone in the group. For the first 2 years anyway. I'm not sure why I kept going except it was the only thing happening in a village in which nothing ever happened. Then I was diagnosed with PsA. I started paying attention a bit more. I gradually realised that it didn't matter that I couldn't remember the moves from one week to another (most people can't, though there are always some clever clogs who remember everything), that the other people there were just fine and, importantly, that it helped me greatly. It's one of the main things I've done that has given me a sense of taking back some control.

Megs4 profile image
Megs4 in reply to Barb66

When you see a proper doctor, be specific about what you cannot do:- example:- I cannot prepare meals, peel vegetables, turn doorknobs. I cannot stand for more than 10 minutes without being totally distracted by my burning and painful feet. I can't even do pool walking as my feet hurt too much. My hands are clumsy. This is my life 5/7 days a week. All the time? I can't sleep for the burning pain in my hands. Write a long list and read it to the doctors. Some just don't understand and they rely too much on tests. They need to hear how it affects your daily life and how much you have had to change to accomodate. Let them know that you could do x amount of walking a year ago and now you can't. While we don't get cured, there is relief and better control available.

Barb66 profile image
Barb66 in reply to Megs4

Thank you and that's how I feel - burning aching heels and soles of my feet, especially at night and my wrist, backs of hands and fingers have dull throbbing pain with shooting pains down my fingers and toes. And the clumsy hands drive me mad!

KJac profile image

Hi there, from what I understand palindromic rheumatism (which I assume is the same thing as palindromic arthritis) is quite rare and can be a precursor to RA. The inflammation and pain associated can be a daily occurrence or less frequently, although it does not cause damage to the joints. Usually anti-malarials/DMARDs like hydroxychlroquine are used to limit the possibility of RA.

So now you have a rheumatologist opinion, it sounds like your current treatment is appropriate and you have something to work with. I know it's difficult, as some medics do not have the most supportative attitude, but this suggested diagnosis might actually be good news. The next thing probably is to try and confirm if your blood results are suggestive that RA could be developing and to find a way of getting your pain more manageable - as others have said this is very much trial and error to find what helps you. I find pacing really helps me. Like you I have painful hands, wrists, feet, heels and ankles at times, to a degree where I cannot do common place activities in the day and I've had to learn to listen to my body and take my time completing the tasks I need to do. It's very frustrating but it does help limit the pain and like others on the site I've found some form of gentle exercise does help.

The attitude of the team of professionals that are there to support you through this disease process is so important to how you feel about yourself, but try to remember you are the expert on your condition and the professional experts are there to help you find a way to live successfully with your condition not hinder. They have opinions but you are the expert on you, so try to let them know if what they are saying is not helpful or does not make sense to you.

in reply to KJac

Wise words Kjac. I suppose that really we also have to acknowledge that the rheumatologists are the experts, alongside us. Their expertise comes from a different angle, but is so vital. Some doctors with a poor 'bedside manner' can nonetheless prove themselves to be absolutely on the money and the awkwardness of consultations fades into insignificance if they prove themselves over time.

I guess the biggest issue is if we feel we're being under-treated. And it does look as if Barb66 is getting appropriate treatment. And, confusingly, pain is not necessarily a sign of high disease activity as I understand it. I am pretty sure that pain can be bad even when inflammatory arthritis is 'officially' under control and therefore the disease is likely to do the minimum of damage, which is the key aim of treatment with DMARDs and biologics.

But if someone's living with a lot of pain .... AND there is doubt about the diagnosis ..... AND a rheumy is not explaining their thinking respectfully and fully, then that's a very difficult situation to tolerate. Just too many question marks for most of us. So in your situation Barb66 (sorry to talk about you in the third person for so long!) I think I'd be thinking second opinion too.

But yes, as Kjac says, it might be worth at least one more attempt to get through to your rheumy, to let him know that you need to understand what is happening as clearly as possible in order to go forward confidently. The pain is real, it might well be possible to tackle it in different ways but for you to do so with real determination you need to be sure that the drugs you're getting really are the best ones for you right now. And that everything possible is being done to firm up the diagnosis. And that you're being taken seriously.

Barb66 profile image
Barb66 in reply to

My RF and anti-CCP are very strongly positive so I do have RA according to them, and my pain is fixed and constant ( although worst as my MTX wears off) in my feet and hands so not palindromic and yes you're right I am atm getting the right treatment, but only I feel because I wrote a letter of complaint to him saying he wasn't treating me under NICE guidance, I'm a nurse and my fathers a pharmacist . I guess what makes me anxious is that if this latest medication doesn't work, then what ? And is that right that I can be in pain and have fatigue to this extent which makes working full time impossible and be 'well controlled'? 😱

in reply to Barb66

Yep, you sound like a second opinion type of gal to me. Sorry to hit you with the 'well-controlled' thing that sounds so ridiculous when you're struggling with pain & fatigue. I think the only answer to that one is to find a rheumy you can trust and respect who will address exactly that issue. Then if they say disease control is good, they should also suggest a way forward with the pain & fatigue. Or they may well say that control could be better.

I guess I should say that although my PsA is generally very well-controlled, I am not able to work full-time. Dancing to someone else's tune, doing long hours, day in, day out, would tip me over the edge and when I flare it's total wipe out. I accept this situation because it's just about doable financially and have various projects on the go. If you want and need to work then you most certainly need the best rheumy possible though of course that's the bottom line anyway.

Ccupcakes profile image
Ccupcakes in reply to Barb66

Sorry, this may be naive, but I suppose they have ruled out Fibromyalgia?

Barb66 profile image
Barb66 in reply to Ccupcakes

I have RF and high anti CCP (>60 ish strong positive and mines 298) plus I'm 'cured' on steroids so I'm pretty sure it's RA . That's what I don't understand, if it's not inflammation why do I respond so well to steroids?

Elmo333 profile image

I'm in exactly the opposite position to you! My bone scan did show evidence of inflammation (not joint deformity though) and my CCP and RF are raised. My CRP and ESR are also constantly very high. I think I have Palendromic rheumatism because the awful pain and stiffness moves around my body every few days and I can have days in between which are fine. My rheumatology nurse just says I have RA because my bloods are so positive. She says it's probably palendromic as well as RA but she just says she would treat it with the same meds. I take MTX and Sulphasalazine. Good luck!

I know exactly how you feel.. Mine always makes me feel like i'm better off than some people he sees and I don't show the classic signs..

I too have swelling & pain in Wrists, Knuckles, base of thumbs, elbows, shoulders & feet.. but he's now saying the shoulders are fibromyalgia?.. .. & dismisses the pain in wrists/thumbs as Osteo.. BUT When I first had the DAS scores done in the first 2 years they 'test' all of those points? Recently come off of MTX as I believed it had stopped working but still taking SFZ & Hydroxychloroquine..

I just want a drug that reduces the pain in my feet so I can walk normally in the mornings..

I also like to Cycle, I have an electric bike.. Aqua Aerobics too is a good work out :O)

Good Luck!

Gretchy profile image

This could be me writing. I test positive for anti-ccp but my bloods never show inflammation. I am waiting for a scan in June but don't hold out much hope. I have excruciating pain in my elbows, hands, knees and toes and wrists and ankles. You can see my knees and hands are swollen. I can't bend my thumbs. I was told I clearly had RA and treatment started but I've been allergic to all the dmards tried. I was told I need biologics but don't qualify and I have been taken off all treatment in the hope my condition will do some permanent damage they can use as evidence. On my last appointment the consultant who said I had obvious swelling in my elbows originally said oh no I think actually you have tennis elbow in your left arm and golf elbow in your right arm so you probably have fibromyalgia. I have been left to suffer with no treatment because I am not a model patient with straight forward symptoms.

My GP called me yesterday to say he's disgusted with my treatment at my local hospital which he feels makes no sense. He says he has written to them to demand a cleat treatment plan with a rationale behind it. He has also referred me to another hospital for a second opinion.

I do not understand if you have a high anti-ccp why they aren't saying RA etc my consultant told me that you only get a positive result if you have or will develop RA and that a high reading like yours means you have.

I'd get a second opinion.

I used to exercise a lot but the dmards effected my health so much I had to stop. I've recently started again but find the day after my symptoms are much worse.

I'm always wary of doctors saying to patients with some long term conditions if you diet and exercise it will all be okay as it's a very easy way to reduce their meds budget whilst blaming the patient. I work with doctors who tell me it's a known tactic

Joy_1 profile image

Exercise works for me too. I find it keeps the pains in my feet under control.

I do aqua aerobics + swim three times a week. The water as you know supports your joints and it has meant I can get a really good aerobic workout in the pool.

Megs4 profile image

Please try a new rheumatologist and get help. Painful hands and feet are not normal. When my ra is flaring mine hurt and I only get relief and control from Enbrel now, although in 2013 I did get relief from 25 mg methotrexate which lasted about six months until havingcto add leflunomide which worked but made me sick in other way. Now on Enbrel as I had got to the point of not being able to walk and my hands were weak and I could hardly stand to use them. I changed doctors to get the Enbrel. My tests are always close to normal. They mean nothing.

Megs4 profile image

And my family and I can't believe my energy . I can go all day. That terrible fatigue is not normal and I wonder about the tendency to label as fibromyalgia

Barb66 profile image
Barb66 in reply to Megs4

That's so reassuring to hear as my rheumatologist said the DMARDs would make no difference to my tiredness either ( or my pain as I haven't blood markers of inflammation) I've never know anything so confusing and conflicting?? 😩

Sa61 profile image

Go to a different Rhumatologist for a second opinion.

I know how you feel. My first Rhumatologist was excellent but I had to change to a different Rhumatologist because of ins.

My second Rhumatologist didn't seem to interested in me at first but in January when my body started swelling up again he tried to find out why. So at least I feel he cares more than I thought.

Hope you can find someone to help you. 🙏🏻For you.

Lesley_1 profile image

Why can't you talk to somebody about having a different doctor.

He doesn't sound like he has much empathy. You need to work as a team to manage your health and if you don't trust him that's not good.

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