Normal results but pain in joints

[Ms-D]

Hi, has anyone had normal x-ray, ultrasound and MRI results yet still experiencing joint pain? I was diagnosed with seronegative arthritis in September 2019 and was taking methatrexate, sulpasalazine and leflunomide with terrible side effects. But now consultant is saying that there is no inflammatory arthritis visible but I am waking up in agony with pain in my knees, elbows and hand. Any advice would be appreciated.

[helixhelix]

There are a lot of things that cause joint pain, so has the consultant discussed other possibilities? Like chronic regional pain syndrome, polymyalgia rheumatica, fibromyalgia, lyme disease etc etc? And does anything show up in blood tests? All you can do is keep on pushing for answers I’m afraid.

[Agoodlife in reply to helixhelix]

But why go on eating RA meds?

[helixhelix in reply to Agoodlife]

I “was” taking.....so my guess is that meds have stopped.

[Agoodlife in reply to helixhelix]

I hope they were😊

[AgedCrone in reply to Agoodlife]

Because they often work! A lot of us here thank our lucky stars for the RA meds we take.

They enable us to have a quality of life that is impossible without them.

[Ms-D in reply to AgedCrone]

I agree that these meds work on many people however for me they were a nightmare and they were talking about biologics as the next step as I am latent TB positive. I have started treatment for that too but now everything is up in the air.

[AgedCrone in reply to Ms-D]

I have just seen you were only diagnosed 4 months ago?

A lot of Dmards can take up to 6 months to work......do you think you gave them a good try?

I am sure life must be exceedingly hard for you right now, but I do repeat my suggestion that you have a discussion with your rheumy nurse.

Until you get clearance from the latent TB ......as you say you won’t be prescribed Biologic drugs....but you do need something.

Even once you have that clearance it can be 3/6 months before you start on a Biologic Drug.

Your rheumatologist probably won’t see you until you have that clearance, so your nurse could be your best friend at this point.

[Ms-D in reply to AgedCrone]

Hi

I started Mtx and after a week i was feeling sick and getting migraines so my consultant stopped those and swithched to sulphasalazine. I was fine for 2 week however as the dose was increased to 3 tablets i was getting more and more nauseous, panic attacks and dizziness. On 4 tablets i fainted at work and was then switched to leflunomide only to have chest pain and heart palpitations everyday for a week and half. My consultant then told me to stop until further tests.

I know biologics will take time to be given to me if they do that but i am still in limbo with everything.

Thank you for your advice and I am talking to my nurse who is very nice and more clued on. I just need to see my consultant as not seen her in over a month and i have no pain management. I am taking co-codamol but only at night.

[AgedCrone in reply to Ms-D]

Ask your nurse for some different pain meds .....she speak to the rheumatologist regularly and will be able to get a prescription for you. Probably whilst you wait for the latent TB to be sorted out there will be no point in seeing your rheumatologist because she won’t be able to prescribe any drugs.

I know this all sounds a bit unhelpful ....but I don’t feel there’s any point in telling you it’s all going to be alright tomorrow because it’s not is it?

Once you get better control of your pain things will fall into place.

In the meantime look after yourself......getting really stressed out & anxious will only add to your woes.

[Ms-D in reply to helixhelix]

Hi, they have done blood tests checking for lupus and all sorts but all are negative. I had a knee aspiration in September and then got told I have bursitis. I am in so much pain that no one seems to be able to give me any answers. I am no longer taking any meds as the side effects were so terrible from chest pain, dizziness, nausea, headaches....the list is endless. My consultant is a little arrogant so I am planning on seeing someone else but wanted to know if anyone has been going through something similar only to be told months later that it is some sort of arthritis. They started me on meds before even doing any xrays, ultrasounds or mris. The ultrasound showed some degenerative changes in the right hand with bone spurs. Yet the damn doctor is telling me that it is all okay.

[helixhelix in reply to Ms-D]

Bone spurs are often a feature of osteoarthritis rather than rheumatoid arthritis. So if all your blood tests are negative and the only thing showing up is the bone spur might it be possible that they jumped the gun with an inflammatory arthritis diagnosis? And them now saying “it’s ok” is referring to not having that after all.

I hope you have an opportunity to ask more questions soon? But if it is osteoarthritis then that’s not a nothing diagnosis. People often think of OA (or wear and tear arthritis) as a little twinge here and there, but at its worst it can be absolute hell.

[Ms-D in reply to helixhelix]

I agree with everything that you have said. The Dr I spoke to said that degenerative changes are just wear and tear however she was happy to dismiss the bone spurs being anything. Both my parents have OA and RA and having being pumped with medication and no diagnosis is silly to me. I have terrible pain in my elbows and knees and having had tennis elbow and tendinitis for years I am struggling to get to the bottom of this as my consultant seems to be happy to see me and not actually take a look at the joints.

[AgedCrone in reply to Ms-D]

It sounds as if you have no confidence in your present Doctors.

Your idea of finding a new medical team sounds a good idea.

If you don’t trust your doctors, you won’t have the right mind set to agree the treatment they advise.

[Ms-D in reply to AgedCrone]

I am just not happy with my consultant as she seems to push the medicines on me to try without doing further tests. It was only after the side effects from the meds she asked for the xray, ultrasound and mri scan. I guess I am very annoyed especially as i am waking up in agony and struggling with day to day and working with 5-6 year olds daily is hard work lol.

[AgedCrone in reply to Ms-D]

What further tests would you like her to do?

Have you asked why she doesn’t do them?

Do you have a rheumy nurse?

It is often easier to have a talk with her as she has more time & is often more practical than the consultant.

[Ms-D in reply to AgedCrone]

She started me on methotrexate, sulfasalazine and leflunomide without actually knowing what i have or xrays or ultrasounds. I am sorry I am seem angry about this but it seems silly that someone would ask you to try these strong meds without knowing what you have. My xrays clearly showed something but I am shocked it is being dismissed as nothing to worry about.

[helixhelix in reply to Ms-D]

That’s dreadful! A doctor shouldn’t prescribe these drugs until they are pretty sure!

But there’s a difference between ‘nothing’ and ‘nothing to worry about’. It may well not be a cause for alarm, but you still need to be told what they believe is causing your pain.

[Ms-D in reply to helixhelix]

I agree with you but the doctor who i spoke to on Friday was happy to say there is no sign of inflammatory arthritis despite bone spurs and some narrowing of space in my finger joints. Oh well.

[helixhelix in reply to Ms-D]

Neither bone spurs or joint space narrowing are typical of rheumatoid or other inflammatory arthritis. So they may well now finally be right and it is osteoarthritis.

But why treatment for latent TB? I’m as confused as you are now! How did that pop up? Are they considering you for biologics? In which case they must think you do have something!!

[Ms-D in reply to helixhelix]

i was diagnosed with latent tb in 2018 after a chesty cough so was on meds but stopped after 2 months as it was only latent. when my consultant found out she said that eventually i will need to go onto biologics. you may be right this maybe OA and not RA but either way no one is telling me anything except for there is nothing to worry about. on top of that i have bursitis and now waiting for a joint injection which doesnt sound like fun

[helixhelix in reply to Ms-D]

Oh that’s even more dreadful. I get so cross when doctors don’t take the extra two minutes to explain things to people! Have you asked your GP to tell you what is going on? And asked for copies of letters from the consultant? They should write to your GP after each appointment to tell the, the conclusions (sometimes a long time after, but even so can be useful).

Joint injections are a bit ‘ouchy’, but only lasts a few seconds. And hopefully relief worth it. Hope it will be a guided one under ultrasound as those a bit easier.

[Ms-D in reply to helixhelix]

My GP failed to see my swollen knee last year and said it was just a bruise until i went to a private rheumatologist who said there was swelling and needed a knee aspiration and then went onto diagnose me as having seronegative arthritis. It will be ultrasounded guided but the thought of that scares me as i have a phobia of needles (sounds silly i know)

[Agoodlife in reply to helixhelix]

Truth being also that the rheumatologists may not have all the knowledge the patient needs

[AgedCrone in reply to Ms-D]

I’m afraid RA is not an exact science ....it’s not like cancer......Where you are diagnosed, treated and you hopefully get better.

It’s a continuous journey where ....you find a drug that suits you and then all of a sudden it doesn’t suit you any more. ...so your Rheumatologist calls on her experience & prescribes what she thinks will work for you.

But one of the first things the rheumatologist will do if she thinks there is any likelihood that you have RA is put you on a disease modifying anti rheumatic drug like methotrexate which will hopefully halt any more damage occurring in your joints. The trio of drugs you were prescribed is pretty much the norm,& for many people it does work.

Did you actually faithfully take those drugs.... Or did you think when they didn’t work in a couple of months they were never going to work?

I know I keep saying this but unless you have a good discussion with your rheumatology nurse explaining all your fears and questions you’re not really going to get very far very quickly,

I don’t want to depress you.....but many people wait a couple of years before they get a final diagnosis and a successful drug regime.

So get talking with your nurse & get some pain relief to help whilst you wait....have you been prescribed any drugs to settle the latent TB?

[Ms-D in reply to AgedCrone]

I gave the drugs a try however I was not the one who stopped them the consultant was. I had to go into hospital with chest pains due to the leflunomide and fainted on the other drug so i am sorry if they didnt work on me but the side effects were too much. I was no in much pain taking them so i know they were beginning to work and know they take months to kick in.

I am taking isonaizid for the latent TB and that is ongoing till otherwise told different

[AgedCrone in reply to Ms-D]

Well you have least started on antibiotics so when you next see your nurse she should be able to tell you when you need the next test to see if they are working.... have you been told how long you need to take them?

But really the most important thing for you now is to control your pain isn’t it?

Hope your nurse comes up with something that helps.

[Ms-D in reply to AgedCrone]

Thank you. Take them for a year but all depends on tomorrow on what the nurse at the hospital says.

[AgedCrone in reply to Ms-D]

Don’t despair Ms-D you will get there....allbeit by the circuitous route.

If you can just get the pain under more control it will make the waiting easier.

[Agoodlife in reply to Ms-D]

I do wonder sometimes that do the docs think it’s no point in listening to the patient and reactions of meds? That perhaps the patients reactions are trying to communicate something of the bad effects of the med?

[Hidden in reply to Ms-D]

Hi there

Yes I went through very similar to you. Also had an appalling time with the drugs. Sulfasalazine nearly killed me. After all the drugs either failed or caused problems I was told by one rheumatologist that I didn't have inflammatory arthritis. Infact after an MRI significant damage to my sacriiliac joints was noted, plus I've had bilateral knee ops and tendonitis etc and swollen joints!

I am slightly suspicious that a lack of treatment is about money and not quite reaching the requirements in terms of funding for drugs. I was eventually prescribed benepali but it caused more problems than it solved. I did have several intramuscular steroid shots which helped. The next line of action would have been Jak inhibitors. However, I seem to be in a bit of remission right now, so not bad enough to take that.

I do hope you get some answers soon. I'm seronegative. Always a real pig trying to get help if seronegative. I feel for you.

[Ms-D in reply to Hidden]

Thank you for your message. I really hope you feel better soon.

This is a long process and I hope to get some answers soon.

[Rahbob]

Yes! I am stuck in diagnosis limbo. Blood results indicate RA but my joints aren't swollen.

They hurt like crazy, I have trouble walking and holding things.

The best way I can describe the pain is that it's like something pushing out from inside my joints. They look normal though.

In the meantime I'm in my 30's, I use a stick and I'm not well enough to work.

[Ms-D in reply to Rahbob]

I hope you get some answers soon. It is so frustrating being in so much pain and yet not having any answers.

[Rahbob in reply to Ms-D]

Thank you, you too x

[Ms-D in reply to Rahbob]

Are you seeing a specialist at the moment? If so where and who is it?

[Rahbob in reply to Ms-D]

I started at the Rheumatology dept St Bart's earlier last year. By the time I got an appointment my flare up was gone and I was feeling a lot better. Of course a few weeks later it was back! I have another appointment soon and I'm hoping that this current flare up will stay put so I don't look like I'm crazy!

My GP has suggested that I email them to update my records every time I've had a course of prednisone and also take a video of my walking so even if it improves I can show them what it's been like.

[Ms-D in reply to Rahbob]

I am beginning to feel the same as I am sure they think there is nothing there but then again the doc has already said this. I am seeing a specialist at the Royal National Orthopaedic Hospital. I hope you get some results soon.

[Rahbob in reply to Ms-D]

It's maddening when you don't tick the right boxes!

[Ms-D in reply to Rahbob]

How are you feeling today? I finally got an appointment to see my consultant next week. I am in the middle of a flare up with every joint hurting and unable to pick anything up without being in agony. Oh well I hope i get some answers soon.

[Biofreak]

Hi Ms-D. As HH says your condition may be osteoarthritis which can be just as painful. I have both rheumatoid and osteo arthritis. In my case the osteo arthritis came first or at least was diagnosed first. As it started in my shoulders and elbows, I was referred to physiotherapy and also had hydrotherapy which worked wonders to improve my mobility. However, I was initially given a steroid injection in my upper arm which reduced the pain. I think you need to discuss the options with your consultant. Best wishes xx

[Ms-D in reply to Biofreak]

Hi, thank you for replying to my thread. I have had steroid injections, acupuncture and physio for my hand and tennis elbow but they were all short term pain relievers. The pain in my knee only started in August 2019 and my GP was dismissive so I decided to see a private consultant in London. She was very good but I guess with me paying a great deal of money she was going to be nice. However I then saw her again via the NHS and she seems to be less responsive.

Thank you for all the support and advice from people who are messaging me back xx

[Biofreak]

You are very welcome. I only hope your doctor's find a way to relieve your pain and find a longer term treatment that works for you. X

[Ms-D in reply to Biofreak]

Have a lovely evening and I hope the pain eases for you too. x

[turtlemom2]

Yes. There are a lot of things that can cause it. However, I am considered sero negative RA. Meaning some of my blood work shows inflammation but I am still testing neg for the RA factor. Just because you have not advanced enough to show up on X rays yet or showing on blood work does not mean you do not have some form of arthritis. Beware of a doctor that bases their diagnosis on blood work alone. It did take me two years of testing and going back and forth to get diagnosed. It can also take a while from the first symptoms to the actual showing up in the blood work. They don't know why some show on blood work and some do not. You can research it and there are countless articles about it. It can also be a definicency of some sort as well in your diet that can cause joint pain. Make sure they do a complete blood panel.

[Ms-D in reply to turtlemom2]

Thank you for your message. I was initially diagnosed with seronegative arthritis but changed to inflammatory arthritis and now it is nothing. It is all very disheartening as i am having to take time off work for tests and appointments and working in a school is not easy to keep taking that leave. I am also tired and feverish all the time.

[turtlemom2]

Don't give up. See another Rhemy. If you are not seeing an actual Rhematologist then you need to start there. If you are then see another one. You can have RA or inflammatory arthritis without it showing on blood work or swelling. Do not let them brush you off. Your pain is real if it stops you from your daily life. It took me two years of coming back and forth and being my own advacate until finally one day my blood work showed highly elevated sed rates. I do not get red or always swell with a flare but my pain is just as real. She finally diagnosed me with Sero Negative RA. Do not give up. If they don't take you seriously go see another one. You also need to check a complete blood panel as some vitatmin or mineral deficencies can cause joint pain.

[Ms-D]

All my other bloods are normal so no vitamin deficiencies. I will see what happens this week and keep you informed. Thank you x

[embroy]

You are lucky to have an x-ray, I had to ask my consultant many times before it did happen.

[Ms-D in reply to embroy]

My consultant didnt initially arrange this. It was only when I saw her colleague she was shocked that after being told to take methatrexate and sulfasalazine that no xrays or ultrasounds were done so she arranged for these. The doctor who called me friday is no rheumatologist but she was quick so rule out any kind of arthritis and said that everything was okay. I do not have any faith in what she said as waking up in agony, struggling all day and night in pain is not okay for me and i know that it is my joints that are hurting and not my muscles or that this is in my head.

I will go get a second opinion and if again there is nothing then i guess i will have to wait for the true path of this to appear.

[Blot]

Try getting MSM capsules on their own not mixed with any other ingredient. This may well answer the purpose. You won’t get it from England but from Germany. Google it and you will find it

[Matilda_1922]

My bloods don't always show inflammation but joints can be swollen and painful

I'm seropositve RA

[Ms-D in reply to Matilda_1922]

Thank you for all the messages.

I am hoping to get an appointment this week as the last one was cancelled as consultant was sick. I will keep you all posted on what is going on. I think or at least i know that it is possible to have OA in the hands as i already have tendinitis so having bone spurs and narrowing space could me OA. The pain in my knees and elbows including inflammation and swelling is something that is worrying me as i can not lift anything and walking is becoming a chore for me. But my job entails being on the move constantly as 5-6 year olds are very active but i love my job.

Thank you for everyone's messages it means alot to know there are people out there who may be in the same boat as me x

[lovemydoggy]

Have you looked at Palindromic Rheumatism?

[Ms-D in reply to lovemydoggy]

No I have not but it may be an option. Never heard of it before so thank you for suggesting it.