I was diagnosed with fibromyalgia by a rheumatologist in 2014 as although I had joint pain at the time no joints were swollen and bloods came back normal. In February this year I had a major flare up, small joints in my fingers were very swollen and I could hardly walk due to pain in most joints in the body. My GP took more bloods and told me that my RF value was high although CCP was ok. She referred me back to a rheumatologist. Since then I have been left with permanent pain in the joints that were swollen plus the pain in pretty much all joints in my body has remained bad, including toes, knees, hips, lower and upper spine, shoulders and fingers. I got to see a different consultant rheumatologist yesterday and almost immediately she ruled out rheumatoid arthritis (this was before she even looked at any joints) even though I explain all my symptoms and have it in the family. She said it was more likely to be linked to inflammation of tendons/ligaments which can be triggered by stress, and was unlikely to cause any lasting damage so I shouldn't worry. She said in time it should calm down. I mentioned my RF being high and she said that 25% of the population is (including her) and not to worry about it. She has referred me for an MRI scan of my pelvis as I could hardly walk yesterday and taken more bloods and told me to continue with anti inflammatories and go back in 3 months. She said that there maybe a chance it is psoriatic arthritis as I have psoriasis but that is nothing to worry about as it doesn't cause long lasting damage like rheumatoid arthritis. I have been left very confused as when I got home last night and looked all this info up there seems to be a lot of inconsistency with what she told me compared to the arthritic websites. Also I am not sure how she can be so confident to rule out rheumatoid arthritis at this stage. Could anyone shed some light on what you think she meant by all this as I thought I may have got some answers yesterday but have been left even more confused. Thanks for reading xx
Left confused by my visit to the rheumatologist. - NRAS
Left confused by my visit to the rheumatologist.
Hi sorry to hear about your experience yesterday. Contact your previous consultants secretary and ask for an appointment to see them to discuss. Explain your concerns and that you really need to see them sooner than 3 months time as you are not sure why you saw a different team and your symptoms are affecting daily life. It's OK to do this. Don't be fobbed off
Please keep pushing to get to see another consultant. My symptoms were blamed on " the menopause " -- for 4.5 years. It was only when I pushed and persuaded them to do a scan of my hands that I was formally diagnosed. Remember --- you may not be at the top of their priority list, but you are at the top of your own. Good luck☺x
I actually think that probably wasn't a bad appointment. The pelvic xray is what is required to show spondyloarthritis (of which psoriatic arthritis is one type), so at least you are having that considered. Antiinflammatories (NSAIDs) are the first line treatment for spondyloarthritis, so asking you to continue with those also seems sensible. The pattern of your pain (including spine, and if the tendonitis was possibly enthesitis right at the point where tendon joins bone) could have been one thing along with the negative anti-CCP that made them rule out RA, but it does seem they have recognised that you could still have an inflammatory arthritis (spondyloarthritis).
The only thing I would disagree with and challenge is that spondyloarthritis doesn't cause lasting damage - it can and does, but generally takes a lot longer than RA to do its nastiness, and damages in different ways (ankylosis - or bony growths triggered by inflammation on the outside of joints that can if left untreated for many years lead to fusion of joints). Spondyloarthritis can also cause quite severe disability if left untreated, as I know only too well. So good that at last it is being considered for you, as I think far too many women end up with a fibromyalgia diagnosis without spondy ever being ruled out.
Do make sure that you ask lots of questions next time you see the doctor, so you understand what they are thinking. It might be a good idea to see if a friend or relative can come to the appointment with you - in my experience it helps both to have another set of ears to hear and remember what is being said, but also doctors seem more inclined to explain more when there is someone else in the room.
Thank you for your comments, like you say earthwitch at least they are running more tests. It was more the info she gave me seemed to conflict with what I read about last night. What you have said seems to be very similar to things I have read. I will have to go in more prepared with questions next time. I just felt she was being very dismissive about the pain I was in, and made me feel a bit of a wimp (usually I think I have quite a good pain threshold) but when you are living with it day in day out it can really affect your life. There didn't seem to be any recognition of that xx
Katt
Whilst I do not have spondyloarthritis,psoriasis arthritis,tendonitis or enthesitis I am not in any position to pass comment on these conditions but what I would say is this.
My rheumy is a foreign gentleman, so please anyone don't think that is being a derogatory or racialist remark because it is not- it's a statement of fact..The point I am trying to make is that sometimes he explains things in a way I cannot understand and I often leave the surgery either confused or feeling downright thick! The following day I ring the rheumatoid nurse at the clinic and she puts things into context for me.I also take my husband with me for my appointments as Earthwitch says it's another pair of ears and someone else can pick up on things that you may miss or even put a different spin on things.
The other point I wanted to make was just how many rheumatologists have RD or psoriatic arthritis or any other form of inflammatory arthritis? I suspect not very many.So whilst they attend to us sufferers they are dealing with the disease not as a first hand sufferer but the theory behind it,and yes of course their experience but it's not their experience its someone else's so how could they know just how we feel ?
I often feel that if they really knew what we were all going through they would be a little more understanding of how we interpret their sometimes cryptic responses.I know that in the past that I have hung on every word they have told me,so they need to make sure that the message they give to us is clear.We don't always expect an answer there and then we just need to know that they are working on it and have some clear direction on where we are going.
Crusee
XX
I sometimes think we should take a tape recorder into consultations.Because as you rightly say sometimes we come out more confused than when we go in.
Playing it back afterwards would help clarify.
I often feel that the rheumatologist (or other health professionals) seem dismissive of our pain because they can't allow themselves to be too empathetic. They hear the words but not the meaning because of their own defences against feeling too much and getting distressed. Then they can't deal sensibly and logically with the problem. This comes across as being insensitive - and I do think they ought to learn better skills - but does mean that they are able to think clearly about what needs to be done next.
After all, if there is a fire, you don't want the firemen to sympathise. You want them to put out the fire, even if it means treading all over your flowers in the front garden!
The consultant may well be right about the psoriatic. It's unusual to have RF in that case, though. I understand that it's possible, however, to have RA and PsA at the same time.
If you have psoriasis and you have joint and tendon pain, PsA is a credible explanation for your misery. Please don't be put off by the consultant's downplaying the seriousness of that, though. Pain and fatigue are damaging too: relationships, jobs, incomes, mental health can all suffer. And that's just as bad as joint damage, although joint damage is the only thing that comes out of the NHS budget.
I would have to take issue with the notion that PsA does not cause long lasting damage like RA. I have PsA. And PsA has gifted me with two knee replacements, a hip replacement (and another on order) catastrophic foot damage, a blue badge, early retirement and a reduced pension. No, nothing to worry about.
You are right they do not have time to see the knock on effects the early retirement, the lifestyle changes. The lack of independence. It is not a holistic approach and realistically never will be.
Oh if hospitals were like Casualty on television.
Hi katt
Some excellent advice already in this thread.
The only other thing I would say is although it is a good thing to find out as much as possible about what is going on in your body, be very careful when you search the Internet for answers.
There is some excellent information available and some not so good. Telling it apart is a skill in its own right.
Also we tend to read technical / medical information and the pessimist in us comes out, rather than being able to objectively assess it and work out what is actually relevant.
As an example back when I first became ill, I had a flu-like illness for 3 weeks that left me in a very sorry state. To cut a very long story short I was eventually found to be anaemic. I of course went home and looked up anaemia, having already been told that 'young men don't get anaemic unless they have a chronic bleed or their bone marrow isn't functioning correctly'.
I found information on aplastic anemia. I can honestly say I was terrified. I was convinced that even if it wasn't that it was something along those lines. I found nothing to suggest that it is actually quite common for people with chronic illnesses to be slightly anaemic. Not that I knew at the time I was in the process of developing a chronic illness but nevertheless. And even if I had found that out I would still have been terrified.
So although knowledge is power, a little knowledge is a dangerous thing.
I agree with earthwitch, the results of the tests they are doing should help to shed some light. I know it is pointless me saying it, but try not to worry too much before you know what's going on.
Good luck.
Ade
Eh? Psoriatic Arthritis doesn't cause lasting damage ..... that is complete & utter codswallop.
Sadly, every now & then up pops a rheumy who would appear to be in serious need of going back to med school. I'm not knocking the whole lot of them, there are some wonderful rheumatologists out there, but those who get it very, very wrong can cause havoc.
Psoriatic Arthritis does affect tendons ..... that's another definite.
Personally I think what she meant by this is not fathomable. We are not doctors here I know, we cannot give medical information. But I've been diagnosed with PsA for 4 years and there are some key facts about which I am certain.
I expect you are hoping that there IS some method in this madness, that it'll all come good. Because who wants to go through the rigmarole of seeking a second opinion? Well I had an 'interesting' rheumy too and was getting nowhere fast in terms of a secure diagnosis and effective treatment. So I asked my GP to refer me to another rheumy in a different hospital & despite the hassle it was the best thing I've ever done. I would suggest that you consider doing the same thing.
I guess the tests you are having just might clarify the picture and your rheumy might yet get her act together. Possibly!! I think the way I'd play this would be to have the MRI etc. and set about becoming very well-informed about both PsA and RA. And I'd work on my battle plan.
Thank you so much for your thoughts and suggestions, it can feel incredibly lonely on this journey even with loved ones and friends support. They still cannot fully understand how hard it can be. I have had a day to think about things and like some of you say at least more investigations are being done, and I guess what is more important is to get me on the right treatment rather than fixate on what form of inflammatory arthritis it is xxx
Hi Katt, I'm not surprised you're confused; I would have been too!
I have psoriatic arthritis, and I can tell you that the symptoms you describe are consistent with that. In fact, with joint pain, tendon inflammation (also known as enthesitis), current psoriasis, and badly swollen fingers (also called dactylis), I am really very surprised that you have not been given a firm diagnosis of PsA. You meet the CASPAR diagnostic criteria for it: rheumtutor.com/caspar-crite...
I guess if your rheumy doesn't know much about enthesitis (many/most don't seem to) and doesn't think you have joint inflammation, then maybe she doesn't think you meet the primary requirement to have "inflammatory articular disease". As well as a spine MRI, I think you should ask for an ultrasound of your hands - that, plus psoriasis, is what got my diagnosis confirmed.
I would think very seriously about asking your GP to refer you for a second opinion. This rheumy is absolutely wrong that PsA doesn't cause long lasting damage, especially if it is undiagnosed and left untreated. I have deformed fingers and toes and an artificial hip to prove it... If you have PsA, which seems quite likely, you need to be treated as quickly as possible, probably with DMARDs.
Good luck!
Anyone feel they have symptoms that could apply to more than one type of arthritis?
How long should a first visit to a rheumatologist last?
Rude rheumatologist, exhaustion and the need to inject.
Still no real answer.
