Hi guys - I've been a forum member for a while, but haven't posted much as I'm undiagnosed so I don't really feel knowledgable about anything here. But I wanted to share my recent success at finally getting a referral to somewhere which might be able to help me.
I came across an article on the ARC website a while ago - about enthesitis. As I read the article it felt like they were talking about me - long-standing pain in multiple joints, family history of inflammatory arthritis (mum and grandmother with RA), rheumatoid factor and anti-CCP both negative, consistent moderately high inflammatory markers (but not high enough for them to consider RA), calcific tendonitis (shoulders), difficulty getting a diagnosis as nothing seems to show up on X-rays or scans.
Anyway, my usual GP is on maternity leave so I went to see the locum GP. Would you believe it, his Masters research was on .... enthesitis! And he did this research at the department the article's main author is at. He agreed with me that what I had did sound very much like enthesitis, and he's referring me to that world class research-led rheumatology department. He was amazed that I had such a long history (nearly 20 years) of undiagnosed joint pain, and looked most annoyed that my continual red-flagged inflammation markers had been ignored.
Honestly, I feel like all my birthdays have come at once! Finally, I might be getting closer to (a) a diagnosis (other than my current one of fibromyalgia, which I'm sure it isn't) and (b) some treatment (which seems to be much the same as the treatment for RA, from what I've read).
Anyway, I just wanted to post this so that anyone else who is undiagnosed but feels sure there's some kind of inflammatory arthritis going on realises that there IS hope. Even when it seems no-one will listen to you, there is every chance you too might find a doctor who will.
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CarolineC57
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Hi Philip - my swelling is specific to certain joints: right knee, left hip, feet/ankles and occasionally my hands/fingers.
I'm fed up of doctors using the "it's just your fibromyalgia" thing on me. I've so far had two things which they said were due to fibro turn out to be something else completely when I finally managed to persuade them to investigate properly - cervical spondylosis in my neck and calcific tendonitis in my shoulder. Do you think your fibro diagnosis is correct or a misdiagnosis when they can't be bothered to investigate properly?
Yes I do because i managed to see several Consultants I had to learn about it because when I go to the my GP already armed with knowledge, so they then will listen to me, I opened a support group in my town of Southport. A big membership too lol.
Sometimes I feel some doctors no nothing about it and it's up to you to teach the doctor about it. No matter what your illness is, learn all you can about it.
Wow that's great news. I hope you get some treatment now. I was diagnosed with it where the tendons attach to my skull by a rheumatology registrar. I also have sero positive RA. Someone on here recently described it as toothache in their knee which I thought quite apt.
Yes, that does describe it perfectly. My affected joints are: shoulders, right knee, left hip and possibly feet/ankles (unless that's something else).
That sounds nasty by your skull. Does it give you headaches? Funnily enough, I've recently been diagnosed with cervical spondylosis (ie. OA in my neck) and that gives me bad headaches - especially through the night when my neck ends up in strange positions in my sleep. You're making me wonder if there's a problem with the entheses in my neck too!
Yes it does give me headches and it is tender to touch especially behind the ear and at the base of my scull. I'm taking etolodac which helps and codiene if it gets really bad.
I've just read the article you mentioned and found it very interesting. I've had achilles tendonitis and medial epicondylitis several times and now wonder if its related.
Yes, I do wonder if there are more connections between these things than we (or any medics) realise. That definitely makes me wonder about the back of my head. I get the tender-to-the-touch thing too. Another thing to add to my list to ask when I get this referral!
Next time you go maybe suggest that with fibromyalgia does not cause swelling in any part of the human body, when I was diagnosed with fibromyalgia 20 odd years ago and from then on as when I went to see my GP and like you , oh it's the Fibro, that's when I said it isn't the Fibro because I know when the pain is Fibro and when it isn't Fibro, you need to be firm with the medics nowadays because their lack of knowledge about the things is minimal at the best of times. Most times now I see a young dr because they know more and are willing to learn.
I'm afraid I've been trying that - ie. telling them fibro doesn't cause swelling. Hasn't worked until this locum doc though - they just put it on my medical records as "unexplained swelling". That's why it's such a relief, after so long, to finally be listened to by this locum GP.
Fibromyalgia seems to be flung around a good deal by docs. Seems to be a catch all. I had it stuck on my notes. I was actually allergic to a medication for PsA. It does feel, at times, that GPs can't be bothered. My bloods were completely out of whack for ages. I discovered this when I accessed my notes.
Sounds like you were in the same boat as me then. It's awful that doctors just throw this "fibro" label at people. Once you have that on your notes, it's really difficult to get any pain investigated at all.
I agree, my GP insisted I had Fibromyalgia and wanted to send me off with yet another prescription. I had to have my husband drive me as I could no longer walk. I refused to leave without lab requisitions and insisted on an MRI. I said I would pay for them myself , if nessesary. The rest is a long and painful year of tests, specialists and drugs. Not only were all markers positive but nearly off the charts. My CCP antibody is 300 my CRP was 85, RF 23 and Nuclear AB was also positive. This indicates a connective tissue disorder. The good news is I no longer spend all my time trying to convince my doctor that the pain is real. In his defence, he has been prescribing opiates for fifteen years. Clearly not something he would do if he did not believe. It can be so frustrating for those who are seronegative. There is a test called Jointstat. It is based on a new protein 14.3.3.3. They claim it is 90% accurate. I do feel that those numbers seem inflated but I would think from an insurance perspective it may proof essential. They are very difficult about funding Biologics with seronegative RD.
Yes, according to this locum GP with an interest in enthesitis I'll probably get an MRI done when I go to this rheumy department. They've never done one before. I've had difficulty even getting X-rays as they keep telling me it isn't necessary!
Yup. I'm seronegative. Odd that docs tend to bypass this. I knew about seronegative inflammatory arthritis, and I'm just a regular Jo with no medical training!
Have they suggested psoriatic arthritis? I have just had my diagnosis changed from sero negative RA to psoriatic arthritis due to a similar issue to you. Good luck
No. I do have dry/rough skin problems - but my GP (the one now on maternity leave) just said "it doesn't look like psoriasis" and that was it - no further investigations. I'm hopeful, with this new referral to a team which seems to know what they're doing, that this will be looked at too.
There are different types of psoriasis. My GP said the same thing, despite all my toenails falling off.
I seem to have two different types of psoriasis. One is like a small pin prick rash all over body. The other is in creases and under arm pits, and is itchy and painful.
Sounds nasty! Mine isn't like that. It's just very dry skin (particularly on hands, feet and legs), and my hands chap and split a lot when the weather is cold. Oh, and they itch too.
Me neither and I never have had any rough dry skin or any form of psoraisis. They have come to that conclusion because of the tendon and joint problems. Tell them to reconsider, it has taken me 5 years to get to this point. Don't give up.
Oh, I'm not going to give up. I almost did as I've got so fed up of being fobbed off for all these years - but when the opportunity of a referral to this particular hospital came up I grabbed it! I honestly think this is my last chance at finally getting proper investigations and (hopefully) a correct diagnosis (and maybe treatment).
I also agree with Someonesmother as I was diagnosed with Psoriatic Arthritis over 2 years ago and enthesitis showed up quite clearly on MRI scans. I have virtually no obvious sign of psoriasis.
The good thing is that you have now been referred for investigation so I wish you well in getting the answers you need and a treatment plan sorted.
Best wishes.
I am sorry you are having such a hard time getting diagnosed, but congratulations on finding one that is interested in actually determining what is going on. Keeping fingers crossed for a firm diagnosis so they can next start treatment!
That was a stroke of luck with the Locum wasn't it ?! Enthesitis is more closely related/typical to the spondyloarthropathy group, you may find it helpful to research those. This site may be a starting point arthritisresearchuk.org/hea...
A GP will typically go by the common symptoms of RD to refer but I'm surprised given your family history (genetics are thought to be a consideration when suspecting these diseases) plus the length of time you've presented with your joint symptoms & 'unexplained inflammation'. Surely if it's been unexplained more than three times say it should be investigated or at least be sent for appropriate imaging? My GP has a 'three times & you're out' policy, meaning if she's not had a clear idea of the cause of anything & three treatments have failed she refers, unless she has a clear idea beforehand.
I've never been diagnosed with fibromyalgia but I do think once you are it can cloud other symptoms, or is something to blame your problems on. I also think it's often lazy diagnosing, not by all by any means but not long before I was diagnosed with RD & OA I remember seeing Dr Chris on This Morning discussing it with a guest who had it & also had a call-in & he 'diagnosed' fibromyalgia. It was the first time I'd heard of it so looked it up & thought that it wasn't wholly what the caller was describing, it appeared more arthritis connected. I had done some cursory research on RD as a group of us had been talking about genetics & I didn't follow any pattern other than heart problems & I didn't have any of those but as my Nan had RD I'd had a read. Maybe I shouldn't have, maybe I should but I disagreed with my h's 'diagnosis' of gout & it meant I saw my GP promptly as much to prove him wrong as anything but it did mean I was referred & diagnosed quickly!
Anyway, I hope now you're on the right track you'll have your diagnosis & appropriate treatment soon. 🙂
It's awful how we have to fight for our rights to be referred, isn't it? I have seen several rheumatologists but they all seem to dismiss me out of hand - either it's fibromyalgia (the last one reconfirmed that diagnosis even though only four of the so-called "tender points" were tender, and those were the ones in my shoulders - later found to be calcific tendonitis) or they just say the blood tests show it isn't RA so they discharge me and leave me to my own devices.
I do think that I've now got the best possible chance of getting thorough investigations with this new referral. By the way, that article you first linked to - by Prof McGonagle - is the one I found which set me off on this route. It really was a stroke of luck that this locum did his research with him!
I figured it might be but had copied it & sent it before thinking... then thought about the other site (link above), it may be useful too? Oh & be careful, that Professor McGonagle, she's a witch & fictitious lol. 😅
I previously posted the following comment onto another thread and thought that my own experience will illustrate that the Docs don't know much about it.
Interesting thread as when I was diagnosed with Fibro, I went off and did my own research using all my prior medical history, which 3 consultants, ignored, called irrelevant and the last one said I could not have been diagnosed with OA. It all made me angry enough to do a proper investigation and after much research was pointing in the direction of Enthesitis, I went straight to an opticians to check for Glaucoma, the last symptom is AS. It resulted in yet another appointment with a consultant, I refused to see the other 3 for a variety of attitude and courtesy reasons. The result was a more thorough investigation which confirmed some enthesitis along with all the other symptoms that had been previously diagnosed and a couple of new ones, this has been a very long road and the end is closer but still not yet in sight.
There is very little, good, information available, when you remove all the internet dross, Wikipedia, you tube etc that is out there.
I suppose my point here is that I am being treated with Fibro as my main problem, all the other symptoms being secondary and I still consider that Enthesitis to be the real diagnosis and everything else is just a symptom of it.
It is frustrating that when I describe my symptoms and compare them to a broken down car, they still insist on repairs to the periphery and ignore the cause, which is the engine. I hope they fix me before the engine seizes entirely, the computer has already had an attack (TIA), so the diagnostic systems are failing.
Interesting. May I ask what are your eye symptoms? There's no glaucoma in my family yet I suddenly developed high pressure in my eyes for no reason. Also I have very dry eyes. Would be interested to hear what your eye symptoms are?
I rely totally on the advice of my optician, it is not something I have investigated, it is one of the last two symptoms, the final one being Ankylosing spondylitis.
There is no history of it in my family, but then other than in my siblings, there is no history of Enthesitis as far back as our grandparents on both sides of the family. It takes a great leap of faith to ignore a genetic link, considering the sibling data available, I don't believe in that level of coincidence.
I only discovered the link as I accumulated data, using facts that I knew, even though the evidence is not written in my medical records and all the letters relating to its commencement with JIA have vanished from the records that do remain.
Fortunately when I became aware, I had an immediate eye test, stating my reasons which now form part of my permanent record for future tests, it was all clear so I will continue to monitor this with my optician and GP.
Hi Paul - yes, I'm still here, though I haven't posted here for ages as I'm afraid I'm *still* undiagnosed to a large extent. I've been seeing a nice doc at Chapel Allerton and she has confirmed enthesitis in my right knee - that's the joint that's been bothering me most for the longest period of time (around 20 years, I think). She hasn't checked any other joints though, but she did say that it's highly likely I have it in other joints. The calcification in my shoulders is the same kind of thing. So, from that point of view, I feel vindicated - she says I don't have nerve pain (so no fibromyalgia).
However, she tells me that enthesitis can be caused by osteoarthritis as well as inflammatory arthritis. Basically, until my inflammation markers go much higher (they're always over the top of the range but not really high) she isn't prepared to say it's inflammatory arthritis or try me on any immuno-suppressants. I do have osteoarthritis in various joints so, at the moment, they're assuming it's that that's causing the enthesitis. I'm not convinced myself. My mum's history was identical to mine - her symptoms, her "fibrositis" diagnosis (the old name for fibromyalgia). But eventually she was diagnosed with RA (when it was too late and the damage was already done). I do fear I'm heading the same way as my mum.
But, they have instructed my GP to check my inflammation markers and rheumatoid factor regularly and refer me back if anything changes, so I'm in a better position than I was when I was being fobbed off by other rheumatologists. My pain is worsening considerably though and I do struggle at times.
Do you have a RA diagnosis, Paul, and are you on immuno-suppressants? If you have/are then I think that's the best they will do for you. There is no treatment for enthesitis specifically I'm afraid - apart from trying to keep the joints moving and having arthroscopies if the calcification gets really bad.
i am in same boat no diagnoses Caroline lovely name not heard for awhile back to topic got a lot of what you your are talking about last trip to rheumy 4/5yrs ago really bad app just a push me pull me touch toes no xrays or bloods taken i have just seen video about missing diagnoses healthline.com/health/rheum... worth a watch and guess what paul been diagnosed with frozen gut gastroparesis well there's so many on here with no diagnoses and its saying what it can cause anyway Caroline nice of to contact me whether either any better off well i am meeting you so its been worth it so keep in touch if anything you need to get a diagnosis
Oh, sorry to hear you're struggling to get a diagnosis/treatment too, Paul. Yes, I think there are a lot of us in the same boat. I'm pleased I've finally got this enthesitis diagnosis and I'm seeing a good doc now though, but it just seems to be a waiting game for my blood results to change before I can get any proper treatment.
i go on 15 november to rheumy sparks will fly if nothing comes out of it cant lleave me like this im not down with getedgy with wife gets out and goes shopping
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