has anyone been told they have enthesitis? Does that... - NRAS

NRAS

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has anyone been told they have enthesitis? Does that come only with PsA or also RA? Could fibromyalgia diagnosis actually be enthesitis?

smilelines profile image
30 Replies

I was diagnosed with Fibromyalsia and then a year later I was told I have fibromyalgia and RA. Then yesterday, a year and a half later, I was told I have psoriatic arthritis and not RA. I have always said that my muscles and ligaments hurt and the rhuemotologist said that was fibromyalgia. But after reading about psoriatic arthritis I am wondering if it is the enthesitis which is inflammation of where the ligaments and tendons join the joints rather than fibromyalgia. I think people with RA get this too but I am not sure. Nor do I know what it feels like. Really I barely know what I am talking about so if anyone knows anything about this let me know.

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Mmrr profile image
Mmrr

I have a diagnosis of seronegative RA and have enthesitis. To be honest enthesitis and tenosynovitis have always been more of a problem for me than the joints themselves. Enthesitis can be very painful, but quite localised to the ends of the bones (for me anyway).

smilelines profile image
smilelines in reply to Mmrr

Thank you for your reply. Good to know. Everyone is so different.

Karen12 profile image
Karen12

Like Mmr I have a diagnosis of sero negative rheumatoid arthritis and enthesitis has always been a problem for me. It is why I was given the original diagnosis of inflammatory arthritis at the time as I had (still have) Costochondritis and Achilles tendinitis at the insertion of the bone.

Since being diagnosed officially 4 years ago I have had insertion tendinopathy of the left knee (above and below) as well and my left ankle now has Achilles tendinitis (previously only the right).

A few people on here have mentioned it and whilst it common with PsA it can happen with RA too.

janmary profile image
janmary

I’m not convinced that anyone knows where one condition starts and another ends - we’re all different and symptoms of each “label” overlap. Then different clinicians have different ideas. In short the ‘diagnostic boxes’ aren’t precise - more like a pick and mix. So I haven’t helped you at all! But best wishes

smilelines profile image
smilelines in reply to janmary

I am thinking my doctor might have changed my diagnosis so that I could go on biologics sooner. I should have asked! Why didn’t I?????🤷‍♀️

rabbits65 profile image
rabbits65 in reply to janmary

I agree with you , definitely things overlap for me . Smile

I am seroneg and they say I have RA and also fibromyalgia. I'm honestly not sure about the fybro part as like you alot of my pain now is attributed to tendon / ligament pain. I get costochondritis alot and it hurts like a bad boy.

Like Janmary says sometimes its hard to know where one stops and starts. I wouldn't be surprised if one day I woke up with a patch of psoriasis and they just changed the diagnosis 🤷‍♀️

PsA is associated more with enthesis from what I've read x

smilelines profile image
smilelines in reply to Marionfromhappydays

I don’t have psoriasis either and hope it does not pop up. 😳. I was serio negative RA, too.

Barrister profile image
Barrister

I was initially diagnosed with sero negative RA but that was revisited to PsA and I have enthesitis.

smilelines profile image
smilelines in reply to Barrister

I read that methotrexate and leflunimide do not generally work at controlling the enthesitis. Maybe that is way nothing is working for me.

Barrister profile image
Barrister in reply to smilelines

I’ve never taken Leflunamide as I have colitis and it is known to cause bowel issues. I inject methotrexate and Benepali.

Wobbies profile image
Wobbies

Yes I have a diagnosis of axial spondyloarthritis, polymyalgia rheumatica and enthesitis. Whatever, it hurts!

in reply to Wobbies

Empathy 🤗

Downtime profile image
Downtime

Yes I have seronegative RA and get enthesitis. It’s more troublesome than swollen joint etc.

Mmrr profile image
Mmrr in reply to Downtime

Same here, I do wonder if I have RA at times or if it something else.

smilelines profile image
smilelines in reply to Mmrr

I wondered that too. It seems like my symptoms were/are not symmetrical but for 1.5 years she called it RA. I thought RA was always symmetrical. And I have had more muscular tendon type pain rather than joint. Seems like my immune system is attacking my soft tissue.

smilelines profile image
smilelines in reply to Downtime

How did they diagnosis the enthesitis?

Mmrr profile image
Mmrr in reply to smilelines

Severe pain at the end of the bones, where the bones join together. My elbows are the worst, but other bones are affected too. Unbeknown to me at one physical examination my rheumatologist pressed on my elbow joints and I nearly jumped off the bed (a surreptitious test for enthesitis I believe)

Wobbies profile image
Wobbies in reply to Mmrr

Yes that happened top me and I wasn't aware of my elbows being that bad either until he touched them.

smilelines profile image
smilelines in reply to Downtime

How can you tell it is enthesitis? Do you feel it in your hands? My tendons in my hands hurt more than the joints.

in reply to Downtime

It’s quite acute pain isn’t it 😖

Rhiannon1970 profile image
Rhiannon1970 in reply to Downtime

Absolutely

Kgj2112 profile image
Kgj2112

I have AS and was diagnosed due to the enthesitis on spine , hip and SI joints . The tendon issues r my most painful and frequent as well

smilelines profile image
smilelines in reply to Kgj2112

I wonder if ethesitis shows up on ultrasounds or if it just MRI.

Note my diagnosis is Stills Disease (JRA) which manifests as afternoon fever, constant sore throat, joint pain and stiffness; I also have related AI conditions Lichen Sclerosis and Interstitial Cystitis.I injured my lower leg badly last year and have been told I haveEnethesis, Synovial swelling and Tendinitis….. they don’t really know. I now have a permanent limp.

Sorry, pressed reply before completing text. So as my condition is LIKE RA but not actually I guess it means it’s not restricted to RA which means you are right.Merry Christmas 🎄

smilelines profile image
smilelines in reply to

The more I Know the less I Know they know. It is crazy. My doctor says, we will try and see what happens, a lot.

Garnacha profile image
Garnacha

Hi I was diagnosed with psa last November after a number of visits to a private consultant, my pain had started in my left elbow, left hamstring & right shoulder, initially diagnosed with enthesitis along with tennis elbow & golfers elbow, I had a number of steroid injections & one was done under a guided ultrasound, they could see I had a spur on my elbow & massive calcium build up, was then prescribed methotrexate to go with etoricoxib, hydroxy & in March this year lefluminode, back on steroids as due to a break in mtx for 3 weeks everything gone into a flare.

Seems every time I stop or have a break in a medication I seem to spiral into a worse flare than what I originally started with. X

smilelines profile image
smilelines

Oh, not fun!!!! I hope you can get stable and sort things out so you don’t have anymore flares.

Brychni profile image
Brychni

Hi there - I too feel that my pain is mostly inthe tendons and muscles but not throughout my whole body as described in fibromyalgia. I was diagnosed with Undifferentiated Inflammatory Arthritis PsA being one of the 'possibles' and like you I have had my doubts about that diagnosis and also excrutiating pain not helped by anything except Prednisone - apparently this 'proves' there is an inflammatory arthritis.

So after lots of ups and downs with sulfa, MTX, hydroxyc. I am now back on hydroxyc. and HRT. I believe the combination is responsible for relief at last. I never had any perimenopause symptoms but was out on hrt for migraines, it didn't work but has had many other benefits including for the UIA.

I have been in so mch pain at times that I totally overlooked the fact that hydroxyc. had in fact worked for certain things eg my Raynaud's is not nearly as bad as it was.

The drugs are all trial and error and I kept being reminded that DMARDS are not pain killers rather they should reduce the number of flares and inflammatory episodes. I was also told that I could in fact hit the Pred. if it all became nbearable again without haveing to take it for too long or 'taper'. rheumatologist said I could take it and stop as soon as I felt some benefit even if it's only after a few days. However, it hasn't come to it as I feel a lot better now. I still get bad days but overall the improvement has been huge.

With regard to migraines I have had my first Ajovy injection yesterday, it is a CGRP. I promised myself I wouldn't do any research about side effects etc but instead looked up CGRP and some of the stuff I read mentioned RA. Can't remember exactly but something to do with pain recptors or something - so perhaps there may be even more improvements now! I researched HRT and RA, PsA etc and surprise, surprise there is established medical knowledge about oestrogen and RA - I fired off about it on here and got replies saying exactly the same thing. Apparently some rheumatologists are more switched on with the HRT thing than others.

Not sure if any of the above helps you but remember it's trial and error and most of the drugs take a looong time to work.

🙂

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