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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be sick of being in undiagnosed pain all the time

55 replies

year5teacher · 31/08/2020 09:40

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.

OP posts:
frustrationcentral · 31/08/2020 09:46

Could it be bursitis? Sounds awful Sad

FelicityBennett · 31/08/2020 09:49

Have you had a hip xr or just knees?

Singlebutmarried · 31/08/2020 09:52

I had hip pain for years. Tests similar to what you’ve had. Nothing showed up.

Went to an osteopath as a last resort.

I was out of kilter. Four sessions later and no pain for a year. It’s starting to ache again now. So I’m booking in for a top up in a couple of weeks.

Stephenfrylust · 31/08/2020 09:55

You can ask to be referred to a pain clinic. Or a second opinion with another physio?

Original poster
year5teacher · 31/08/2020 09:57

@frustrationcentral

Could it be bursitis? Sounds awful Sad
That’s what the physio said, greater trochanteric pain syndrome (which is what she suggested) is the same as hip bursitis I think? I’m not sure, to me it doesn’t fit the profile for that as it says you get a pain all down the side of your leg when it’s definitely focused on my joints. It also doesn’t hurt when I press it there.
OP posts:
Original poster
year5teacher · 31/08/2020 09:58

@FelicityBennett

Have you had a hip xr or just knees?
Just knees, I asked for hip x ray the last time I went to the GP before Covid and he said I didn’t need one as he was sure it was muscular (hadn’t examined me). I wanted to chase it up but then Covid happened. I will get back on that.
OP posts:
BlueJag · 31/08/2020 09:59

Could be sciatica if it's only in one side. Very painful. Sometimes you can even touch the nerve poking out.

k1233 · 31/08/2020 10:02

Sounds like what I have and it's caused by a nasty little muscle in your backside called the piriformis. Have a Google and see if it is similar to your symptoms. When mine locked up once the groin pain was unbearable and I could barely walk. It's giving me grief at the moment and the deep ongoing pain is nauseating. You can't get away from it.

Disco91 · 31/08/2020 10:08

Could it be ankylosing spondylitis?

I have it and it started when I was 16. I had sciatica for 7 years before it got diagnosed. It starts in the teen years and causes chronic pain in the back and radiating down the legs.

Do you worse in the morning and it improves over the day?
Is your back hot to the touch?
Does it go away and come back again (so flare up)?

I hope you find a cause soon. I got fobbed off by so many doctors saying it was a muscular problem or growing pains when infect it’s an autoimmune problem.

littlepeas · 31/08/2020 10:11

I’d try to get an mri of your pelvis.

Disco91 · 31/08/2020 10:12

Also I thought I had Piriformis syndrome for years and tried so much to correct it, I then got told it was greater trochanteric pain syndrome! So could well be ankylosing spondylitis which takes on average 8 years to get diagnosed

dontgobaconmyheart · 31/08/2020 10:12

Have you been referred to a pain management specialist or team OP? Medication is not for everyone of course but can work in some instances.

Do you have any other symptoms? Any hypermobility in your joints?

ChristmasFluff · 31/08/2020 10:22

To me it sounds like a hip joint problem - some form of arthritis, in spite of your age. Although there are other things it could be to do with the hip, but I'd certainly go for it being jointy rather than muscular or sciatica - the groin pain and the radiation to the knee are pretty classic hip join stuff.

Having said that, even a physio giving a suspected diagnosis on mumsnet is not going to help you. See if you can get to see a specialist orthopaedic physio, or seek an orthopaedic consultant appointment.

At your age you should have already received an orthopaedic consultation, and it's a poor show that the physio you saw hasn't suggested that to your GP.

StepAwayFromTheEcclesCakes · 31/08/2020 10:38

Have they ruled out any gynaecological cause, before I had my hip replacement my gp sent me for an internal scan to rule out any possible cause of pain from ovary because of the groin pain i had.

lockdownalli · 31/08/2020 10:44

I had years of a very similar sounding issue which was finally diagnosed as pubic tubercle inflammation. Had all the other interrogations before hand - RA/Gynae/spinal/multiple MRI scans and internals before getting the right diagnosis.

Steroid injections every five years (not for the faint hearted) and I am right as rain.

At one point I was wheelchair bound but now I can walk for miles. I find keeping my weight lower helps, and I will have to take strong painkillers for the rest of my life, but I have my mobility back and a fairly pain free life. Good luck OP Flowers

Original poster
year5teacher · 31/08/2020 11:25

Thank you so much everyone for your kind comments and suggestions. 💕

@ChristmasFluff I worry it could be arthritis. 😔

The groin pain is more recent but I hadn’t thought of gynae problems being behind it, to me it’s very much like the joint having sort of locked in place and I can’t put any weight on it because it hurts so much.

I think my next step is to go back to the GP and ask for more scans and a referral. I find there’s not much of a pattern as to when it hurts - it’s often bad at night but it hurts now and it hurts at random in the day. Really painful if I sit down for a long time or if I sit with my legs crossed.

OP posts:
Original poster
year5teacher · 31/08/2020 11:26

@dontgobaconmyheart no hyper mobility as such (I don’t have EDS) but my hips are more flexible than normal people according to the physio.

OP posts:
jajabanks · 31/08/2020 11:34

Do you have flat get by any chance? I do and life was transformed after having insole s in my shoes, hip pain knee pain much improved, I really notice the pain if I wear a shoe that I can't have them in

jajabanks · 31/08/2020 11:35

*flat feet 🤦

doadeer · 31/08/2020 11:43

Ask to be referred for an MRI - I think that's the only way they can determine joint pain.

I've got one in two weeks as I have severe S.I joint pain.

Have you tried wearing a pelvic support brace?

What exercises did physio give - are they to stretch or to strengthen?

PablosHoney · 31/08/2020 11:45

Ahh that’s awful, I feel for you 💕 Has the Dr mentioned Complex regional pain syndrome?

Sanjii · 31/08/2020 11:45

was wondering too if it could be gynae related. some radiating pain.

GabriellaMontez · 31/08/2020 11:51

Ask around, get a recommendation for a really good physio. Save up to pay if necessary. It may only take a few treatments if you find someone who knows what they're doing.

raspberryk · 31/08/2020 11:52

I have this, early 30s, had it since my mid teens, never got to the bottom of it. It has got to the point now where I'm so exhausted from the pain, no energy etc and I get pains in other places now.

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