RA diagnosis without joint deformity: Hi there, just... - NRAS

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RA diagnosis without joint deformity

JoonPearl
JoonPearl
14 Replies

Hi there, just wondering has anyone else been in this situation? I’m being treated for RA but have no obvious joint deformity. I year of chronic pain in joints, constant low grade fevers, 2 stone weight loss, exhaustion and numb hand and foot. First appt in Rheumatology I was told probable fibromyalgia, second opinion with a second rheumatologist in Rheumatology still thinks it is maybe fibromyalgia but is treating me with quinoric and gave me a cortisone injection during the appointment (which was 2 weeks ago). It seems to have worked. During both appointments my joints were examined by the Rheumatologists, and both said they found nothing wrong with them. Both RF blood tests were positive and a c-anca test was weakly positive. Every other blood test was negative. If it’s not RA then what the heck could it be? If anyone has any thoughts at all on this I would greatly appreciate it. Xx

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Azzure

Hello JoonPearl

I have been off work for a month with stiff feet and hands so painful like they are broken. I crawl to bathroom in mornings. I was diagnosed 3 years ago been on Sulfasalazine but have now changed to hydroxychloroquine. My Rheumatologist has also said its probably fybromyalgia because my bloods are fine. And basically told me it’s my mental health. I’ve had the fatigue for a long time and been working full time. I’ve had pain in my hands before but it goes after couple days and has never lasted this long. I did say to my Rheumatologist the reason my mental health is not good is because of the pain. He’s suggesting counselling. By midday my pain has subsided it’s really more in the mornings and can start at night. I feel like I’m wasting their time having to convince them of the pain. because my joints are ok they don’t want to listen to me. I’ve lost weight too, and am very bony so maybe that’s why the inflammation isn’t showing. It is the worse time of my life and making me more depressed than ever. I wish I could give you some comforting words to help you but you are not alone x

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JoonPearl
JoonPearl
in reply to Azzure

Hi Azzure, I’ve just read your post, my heart goes out to you. What you have sounds horrendous.. totally understand the crawling to the bathroom, I had to do that too. They are bit too quick with the fibromyalgia diagnosis I think. And, using the topic of mental health to say it’s all in your head is very irritating when you are in absolute agony. My pain is in elbows, wrists, knuckles, fingers, knees, ankles and toes, 24/7 since August 2018. It was relentless and never ending till I got that injection. My knuckles, fingers, wrist, knees, ankles and toes have been swelling up for about 2 months. Im down to 7 stone 9 pounds (this time last year I was 10 stone). I’ve no appetite either, which doesn’t help. And constant fevers, and across my nose and cheeks I go bright red when I’m feeling really bad (super embarrassing!!). The fatigue is just too much as well. I felt like like I was wasting their time too, But we aren’t, we’re obviously not well. Is there any chance you can get a second opinion? I had to go back on the list for a second opinion from another consultant. But they won’t give me an X-ray or an mri for my joints. I did think about just going to a&e and telling them that I thought my arm was broken (just to get an X-ray!), which was obviously a bit stupid, but I was desperate! It is a very depressing situation to be in, I agree. Your just trying to keep your head above water, while waiting for help. It really is miserable. Xx

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Azzure
Azzure
in reply to JoonPearl

Thank you same to you. My diagnosis is sero-negative so I’ve been told by a private doctor the bloods won’t show. I’m hoping the hydroxychloroquine will start to kick in and I can get my life back a bit. Your symptoms are in a lot more joints and does sound there is a lot more going on. I’ve had ultra sounds and x rays in my feet and in the beginning they couldn’t tell me why I had so much inflammation and that’s how I ended up with diagnosis of RA. I’m off work I’m going to keep strong and hope it will start to go. Flares can last longer than a few days and I have to accept that. I’m taking Naproxen in morning and evening was Taking ibuprofen but needed stronger so that should start doing more. At the end of the day going to A&E isn’t a bad idea because if your in pain and cannot wait any longer why shouldn’t you go. I was lucky I did get the ultrasounds after a few months but it does depend where you live.

Thank you for your reply xx

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daisychains58

Hi Azzure... I really feel for you. Auto immune disease is what we all have so just can’t put a name to it, well that’s my opinion anyway. Of course your going to miserable when your in chronic pain every day, I am too. I take the, shock horror opiates, they make life worth living. Dmards didn’t work, steroids brought synovitis sort of under control but now with metal hips, knees and an ankle I still suffer pain. Only Taking 4.5mg steroid and just dropping it half a mg had a flare for a week. How does that work, my legs feel like lead legs. Just did rehab this arvo and saw my doctor afterwards, his response, inflammation disease has no rhyme nor reason.

Plus my CRP And all other blood results are normal today, that’s a first hence why doesn’t my body reflect it. No rhyme nor reason. Try and get on top of the pain else life is just too hard. You are not alone, this disease is so variable. I’ve got my electric blanket on high to thaw my leg out, it really helps with the pain. I just don’t think you can put a name to any of these diseases, they are auto immune diseases, so gut health is important.

All the best, I’m. Im not the same person I was 2 years ago.. pain management I feel is being ignored to the patients detriment. Keep on their case for every possible option that can help you. 💕

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helixhelix

When the doctors said they thought there was nothing wrong with your joints, they were looking for signs of inflammation not deformity. Do your joints ever go hot, red and swollen? If so take a picture! I presume when you say all other blood tests are normal you mean your inflammation markers (ESR & CRP)? Which is why they are dragging their heels about an x-ray or ultrasound.

Have you told your doctors about the facial rash? As there is another related disease called lupus where a facial butterfly rash is quite typical, and also a hybrid disease called rhupus... Ask them if they have ruled this out (Lady gaga has lupus). And emphasise that the steroids have made a big difference as this suggests that even if blood tests normal there could be something inflammatory going on.

But fibromyalgia is not nothing. And mental stress doesn’t help. So if it does end up as that as a diagnosis then don’t feel that you are being dismissed. It’s not all in your head, but strangely having cognitive behaviour counselling does help. As you have to be mentally strong to del with it.

And finally, please don't go to A&E. I know it’s tempting when you are not getting the care you should get, but it is for life threatening events. My niece is an A&E doctor and I feel so much for her when she crawls home exhausted because her shift has gone on hours and hours longer because of treating people who should really have had better care from a GP.

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JoonPearl

Hi Helixhelix, I thought they were looking for some kind of deformity, thank you for clearing that up for me. I didn’t realise it was inflammation, it makes sense now. Yes, the joints become red, swollen and hot to the touch. I showed the last rheumatologist photographs I took when it happened. I also showed them a photo of the facial rash, but they didn’t say anything about it. My ANA test was negative. I thought fibromyalgia was all over body pain, and I don’t have that. I don’t have migraines, headaches or IBS. The pain is in the the joints in the lower half of my body. I don’t think fibromyalgia is nothing (to be fair it sounds incredibly painful) I just don’t think that is what I have... but perhaps I’m completely wrong and that is what I have. I didn’t go to A&E, I just felt like it because I was so desperate! Constant pain for a year that could not be alleviated in any way almost made me go. The injection and the quinoric have made a massive difference, with no icky side effects. Next appointment is in 5 and a half months, I’ll let them know it has been working. Xx

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daisychains58

You always give excellent feedback 🙂

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Scholar90

Hi JoonPearl

So sorry to hear that you have been suffering like this. Your story and many others, sound so much like mine when I began my RA journey about 6 years ago now. Drs were not sure what was going on at all, so I was immediately told that I had fibromyalgia and attempted to be treated with anti depressants, Lyrica, etc. However, I don’t suffer from depression and never did and taking those medications did nothing for my joint pain and really made me feel I like myself so I threw them in the garbage one day. The Lyrica also made me swell up one day and retain so much water! This isn’t to say that fibromyalgia is not a valid condition at all—but I knew without a doubt that this was not me. I began to rapidly lose weight (about 25-30 pounds in a few months) & I couldn’t not teach all of my classes anymore from the constant pain (I am an English Professor). So, seeing several Rheumatalogists who did not even want to treat me—not even for the fibromyalgia they believed was coming from my mind causing pain, which they say to a lot of women by the way...—and shuffling through all of the doctors who literally told me that exercising would help my pain and I would just have to suffer through it but it would help—uh NO. I used to exercise twice a day everyday but I can’t barely walk let alone get on an arc trainer!—five Rheumatalogists later I found an amazing Dr who listened. She has me on Plaquenil (I also get skin rashes that are now gone, sensitivity to the sun, etc) and I was on MTX but pills made me sick injections even worse and started to mess with my lungs so now I’m on HUMIRA injections once every other week which have made a difference but I still flare too much so she is increasing to once a week. I haven’t seen anyone mention humira or meds like it—can you try this medicine? It does really help. I am seronegative too but my ANA is positive and my CRP has been through the roof. My joints (especially knees and wrists ) visibly swell too. You could do with looking into lupus as well because that butterfly redness sounds much like lupus. The main thing is: if your intuition is telling you something, find another doctor who will listen. There are so many societies and don’t give up. Be an advocate for your health. I KNOW it’s hard it took me five years to even steroids. You are stronger than you know!

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JoonPearl
JoonPearl
in reply to Scholar90

Hi there Scholar90, thanks a million for your reply. I was starting to think I was losing my mind, but you’ve said some things that really resonated with me, I appreciate it. The antidepressants don’t do much for my pain either, and 1 rheumatologist tried to diagnose me in the first few minutes of my appointment with fibromyalgia, but like yourself, I didn’t feel that was correct. My ana and Crp was negative. I did think about lupus, but I assumed the negative ANA would rule that out. I still think it might be though because of the facial rash and all the other things. But from what you’ve said it can take quite a while to get a diagnosis, it’s really hard to be patient though. I understand what you mean about your work, trying to do what you could do in the past is so upsetting. And an English Professor not being able to teach their classes, that would break my heart. It’s a devastating situation. I used to be a photographer, but I’ve had to give it up. I’ll check out Humira, I don’t know anything about it, but I’m going to do some research now! Thanks so much for your kind words and advice xx

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Scholar90
Scholar90
in reply to JoonPearl

Hi again!

You’re so welcome. I hope that I did offer you some help and solace. What interested me about your recent comment is the negative ANA & CRP. Two things: 1, my ANA was negative for about 3/3.5 years before anything showed up. My CRP normal for about 4? What is interesting to note as well is that my Rheumatalogist refuses to send my lab work to one of the largest labs in the country because the hospitals labs (which have access to research labs) are much more sensitive for most autoimmune condition lab work than others. So that’s definitely something to think about and explore. Also—one can be completely seronegative and have the symptoms of RA or Lupus (or both) and no markers in lab work, and may never have any markers.

I know it’s very difficult to be patient. I know. And this may sound an odd way to look at it, but going through this, I’ve learned so much about myself, I have become much more empathetic to others, and it has allowed me time to really navigate my place in the world spiritually (even if you aren’t religious) and metaphorically. Realize dreams that you never knew you had, emphasize time for yourself and that being selfish for health & overall wellness is OKAY; mostly to me that life is too short to not have a positive outlook as much as possible. And not to take things for granted (because as you know we’ve had to pass up on time with friends/family from being unwell & we didn’t have to before). I was like ‘Well! If I’m going to be in this, I may as well try and learn something and grow as much as I can...’

That’s why I said—You are stronger than you know. You are. After your flaring becomes settled (which it will, in time) I bet you’ll be taking photos from different perspectives that you never even thought of before! Maybe even be inspired by certain subject to study—you may even find yourself sitting inside and do a study on shadows, light, etc. that you actually Can do resting. I’m a writer personally, and that’s what I do, write. Passion keeps us going & creativity.

Do check into the HUMIRA! See if your doctor will do a steroid taper for you as well. Steroids are great but not a high dose for anymore than a month. All the best!!!

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Troygirl
Troygirl
in reply to Scholar90

Why do doctors always say it is in our heads!!

I was telling my doctor for the past 15 years I was tired all the time and had achy joints he said oh you must be depressed and he put me on anti-depressants!

I WAS NOT DEPRESSED! I was tired & sore!

Anyway after a few years of having me on every anti-depressant know to man kind, I finally threw them in the garbage. They made me even MORE tired and zombie like!

Even when taking them I was STILL tired & now even more tired.

During these years I also had complaints of achy wrists & elbows. He said wear some wrist braces and the other time it was tennis elbow and gave me a cortisone shot. Ouch!

Then 3 years ago, during the night, it felt like someone was tasking a jack hammer to my right wrist. In the morning both hands were the size of baseball mitts. I called my GP and got an emergency appointment.

He looked at them and said wow! What is going on with you!

He did various blood tests for lyme and autoimmune stuff.

Sure enough, one of my markers showed I had RA!!

So, after all those years of me complaining I was tired was most likely the onset of RA and went years without treatment for RA and it might be so different today if it was caught then.

It is now three years later, and the RA doctor STILL cannot find the correct biological to end my endless nightmare flares, so he has had me on prednisone for a long time!

I now have a condition from all that prednisone called Cushingoid!

Now if only the doctor had said the tiredness, achy joints, etc was not in my head!

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J1707
J1707
in reply to Troygirl

Arrrgggggg😡🤬🤯 me too years (5)of going to the doctors with extreme fatigue,separated toes, flu like symptoms, swollen knuckles, lumps on the sole of feet and stiff hobbling walk in the morning was told I was depressed i knew I wasn’t fought for ages eventually gave in took antidepressants they didn’t work so they wanted to send me to counselling I refused. Kept tellingly them I’m not depressed. Saw another GP who said it was the menopause. This was entirely possible started HRT helped with some things but not all especially the fatigue. Still I was not helped. 3 years laterSaw a young Doctor doing placement she thought I had RA and referred me and here I am. 5 years lost and now joint problems lots of things still not solved but now I know what it is. Such a relief to know I’m not insane or hypochondriac.

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Rheumagal

I have seronegative RA and similar blood test results. But the symptoms are obvious. I had a doctor tell me once it what fibro and I just need to exercise. Boy was I mad! I exercise every single day! My muscles feel pretty good. It’s my joints! (Sometimes select muscles hurt during flares and inactivity) it’s not fibromyalgia. Classic Ra- pain and swelling in hands and feet ( and other joints) worse upon waking and with inactivity. My Rheumatologist has definitely ruled out fibro in the absence of typical fibro symptoms and reassures me that many of her RA patients manifest this way with no blood markers. And that she believes there’s a whole bunch of “fibro” patients walking around misdiagnosed. But every 3 months I see her and it’s obvious to her that my joints are swollen, painful and inflamed. I was diagnosed almost 3 years ago and am starting biologics after trying pretty much every dmard etc. I have been housebound by my illness in the last year because of crippling pain, fatigue etc. I look forward to hopefully finding relief with change in meds.

I have also learned from my Rheumatologist that there are lots of different types of autoimmune Inflammatory Arthritis. So sometimes the type becomes more evident as the disease progresses. (Example: psoriatic with or without presence of psoriasis) sometimes too, autoimmune disease mimics another. Lupus?

Be reassured - you know how you feel and what you have to go through each day. Don’t give up hope. I felt for a long time that I would be forgotten about or dismissed and wouldn’t get proper treatment and would have to suffer alone. Don’t give up and don’t stop letting your doctors know how you feel. Your not alone!

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Troygirl

I was diagnosed early by the onset of hands that where the size of baseball mits.

My GP did various blood tests and bam have RA and officially been sent off to the RA specialist.

Thankfully, they caught it early and I have no joint deformities at all. He did hand, shoulder & elbow and no damage!

However, still searching for the correct RA medication to combat these 7 month long flares that just will not go away!

Recently started yet another drug, IV Infusion Acterma. Have only received two doses so far (1 every 30 days) and still waiting for it to work.

Have been taking Prednisone for 7 long months and that drug is tearing me up and now have Cushingoid!

Sometimes I wonder if I should stop trying to find the correct RA drug because none of them are working for me! None!

But then I will have to wonder if I will get the deformities down the road if I do not take the stupid RA biologicals!

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