To be sick of being in undiagnosed pain all the time

[year5teacher]

Hi,
I posted in general health but didn’t get any response so thought I’d try here.
I’m in my mid 20s and have suffered with chronic hip pain for YEARS. It radiates to my knee and I also have a sharp pain in my groin when I stand up from sitting which causes me to stagger and not be able to move my leg for a minute. (Not a great look)
I’ve had blood tests - it’s not RA, I had an x ray on my knees which is where I originally thought the pain was coming from. Other than that I’ve just been told “it’s muscle pain” “it’s joint pain” every time I’ve been to the GP. It hurts so much and most days, I can’t keep taking painkillers every day.
I was referred for physio which didn’t help. The woman said “you might have GTPS” but honestly the symptoms don’t fit with that - I have no sharp pain when I press my hip and I didn’t think that went on for like, over ten years.

Has anyone else experienced anything like this? I am so sick of it.

Sounds exactly like my bursitis. Xrsy and ct normal, mri not so much.

Pain deep in my groin, right on the hip crease. The illiopsoas bursa is inside your hip, the trochantar outside.

I would push for an mri in your case. A steroid injection (take the sedation, i didn't!), had given me about 2 years pain relief. Just started again now.

If you're overweight, as I am, this exacerbates it.

Mri all the way. Good luck.

@housemdwaswrong I do wonder if it’s this but I’m really not sure. 🤔 I think it might be this or arthritis. I’m going to phone the GP tomorrow to hopefully have at least a telephone consultation.

Something to keep in mind at least. Mine is very occasionally absolutely excruciating, and it definitely gets worse over time. So perseverance is key I think, especially when an injection sorts it all out.

Good luck.

With you saying it’s worse at night and worse with sitting down it sounds even more like Ankylosing Spondylitis. It’s a type of arthritis that gets worse with inactivity. All your posts so far mirror what I went through. The good news is since I’ve been diagnosed and on medication I’ve been 95% pain free and got my life back.

When you speak to your GP you could ask for a blood test for the HLA B27 genetic marker that makes you more predisposed to it. Push to see a rheumatologist as well.

I saw at least 15 different GPS over the 7 years I was ill and 3 different physios and osteopaths and not one suggested this as an illness even though I had classical symptoms. I had to self diagnose and ask to be investigated as I was getting through multiple packs of ibuprofen a day.

Don’t stop pushing at the doctors to get to the bottom of it, you are too young to live in constant pain!!

worse at night and worse sitting down

Many, many musculoskeletal problems present like this. It's almost certainly not Ankylosing Spondylitis.

Careful questioning and examination by someone experienced will help to narrow it down.

@GabriellaMontez out of interest, how come you think AS is unlikely?

I’m a Gp. Usually AS would have raised inflamm markers on blood tests which I assume your Gp would have done. Another thing to consider would be cam impingement of the hip (needs an mri) which can be the cause in younger people. If I was your Gp and it wasn’t better after physio I’d refer you to ortho to rule out the above

have you had steroid injextions in it

Have you ever had psoriasis or ant family members?

Psoriatic arthritis can present there and that frequently doesn't show up in bloods.

@GabriellaMontez

worse at night and worse sitting down

Many, many musculoskeletal problems present like this. It's almost certainly not Ankylosing Spondylitis.

Careful questioning and examination by someone experienced will help to narrow it down.

This is just untrue. How can you say it's almost certainly not AS when many of us with Spodyloarthropathies spend years being told it couldn't possibly be, until it is.

@vinoelle I think my bloods were part of the reason it took so many years to get diagnosed. I had raised inflammatory markers on multiple blood tests but not high enough by NHS standards to get referred. I went private through work to see a rheumatologist in the end and their thresholds were lower and that’s only when I got a diagnosis.

@HoratiotheHorsefly too right, I was told so many times that it couldn’t be arthritis, because my bloods weren’t bad enough.... because I wasn’t male.... because I was too young... because it’s pretty rare.... I think that’s why I comment on posts like this because if I can help one person get the diagnosis they need and not suffer for years it’s worth the 5 minutes it takes to post!

Disco Yep. I was lucky after a long time of being fobbed off by out of date rheumatologists to be referred to one with very up to date info. That rheumatologist saved me, literally saved me.

I do get fed up with having to get through the gatekeepers because we're women and it couldn't possibly be.

No offence to the Gp who,posted above, but you've literally just stated that SA would usually have raised inflammatory markers. PsA has roughly 50% of patients with no raised markers and not all patients with AS have the HLA B27 gene either.

DH has ongoing pains that sounds a lot like yours but only meets the criteria for "suspected" Ankylosing Spondylitis. Inflammation markers alway normal and no other signs of rheumatism (he is HLA positive though). However the pain has a significant impact on daily life, and comes and goes over the years. It started in his early 20s, as do many autoimmune conditions.

There's one pain medication that works much better than others for AS can indomethacin (Indocid). Might be worth mentioning that to a doctor. If it is AS then you should at least get more relief. Paracetamol, ibuprofen or even co-codamol barely touch the sides of AS pain. The rest is all management through lifestyle factors like regular massage, exercise, yoga etc.

Arthritis/Rheumatism rarely has clear cut markers so be sure to chase up several doctors if needed. Speaking from experience, my dad has entirely normal bloodwork but obvious arthritis in his hands because the fingers are immobile. In my own case, I spent 7 years getting diagnosed for lupus because I also had normal inflammation markers and none of the typical physical symptoms (facial rash, sunlight aversion etc). I was only diagnosed after an autoimmune anti-body panel turned out wildly abnormal.

disco
AS is a lot more unusual. Nothing the OP has said here makes it seem like AS anymore than a musculoskeletal problem.

Of course we just have some basic details but I'm not sure this is the place to question her further.

I agree shes been dismissed and should be going back to the GP.

I wonder if you had a slipped upper femoral Epipysis as a teenager/ child and it's been missed.

It's where the growth plate at the top of the femur slips.

Thanks everyone. I know I had two blood tests, one for RA and one for.. I can’t remember. Probably inflammation. They came back all clear so I was sent for knee x days. This was probably 3 years ago, and at the time I thought the pain was primarily in my left knee.
I now find the pain focused on my hip and it radiates to my knee. My knee and hip also click constantly (especially when painful) and my hip sometimes feels like it’s “grinding”, but only very rarely.

I think the best thing I can do is phone the GP tomorrow and ask for an appointment or telephone consultation and ask to be referred for further testing. I’ve looked up AS and I’m not sure. There’s no swelling and I’m not fatigued which are two of the top symptoms on NHS.
While I know no one can diagnose me it’s incredibly helpful to hear people’s comments and experiences. Thank you

@HoratiotheHorsefly no psoriasis and no one in my family has it either so I don’t think it would be the arthritis which is linked with that.

Only recently I realised it’s not actually normal to be in really extreme crippling pain after walking a long distance or standing up for a while.

Festivals as a teenager were not fun 😬

I am sorry you are in so much pain. Knee pain is notoriously a sign of a hip or back problem. I really think you need to see a chiro. Physios are wonderful but with the best will in the world can’t correct bones which are out of place. Twice I have had knee or feet problems and spent months in physio sometimes twice weekly - both times a few sessions of chiro putting my back and hips straight have solved the problem. Hope you find and sort the problem.

Not sure if this helps but have had similar which is thought to be because of slipped disc causing sciatica and also a very tight piriformis which can agravate sciatica.

I have recently developed pains in lots of other joints and very dry eyes - GP tested for RA (negative) but also did a generalized autoimmune test which was positive. Been referred to rheumatology.

Is your pain on one side?

OP it sounds like femoroacetabular impingement (FAI) to me - which can cause labral tears (which might be the groin pain).

I have recently been diagnosed with this and it’s a real pain!

My mum had terrible pain in her groin and hip which radiated down to her knee.
Turns out it was a problem with her lower back (spurring on the base of her spine) which was causing referred pain elsewhere.
The problem showed up on an MRI scan.

Sending you a virtual hug 🤗

It does sound as if ankylosing spondylitis is one possibility. One tool of diagnosis is a blood test for a certain antigen most AS patients have called HLA B27.