Hip pain: I am being treated for fibromyalgia and... - NRAS

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Hip pain

charlie9 profile image
13 Replies

I am being treated for fibromyalgia and prodromal RA. I have had hip pain that varies and I find it very hard to describe. It's always been bundled in with fibromyalgia and not looked at further. Today I asked gp if we can re think it to make sure we're not missing anything and have been referred to physio she thinks it's muscular. (I have seen so many physio's since this began 15 years ago! But none specifically for my hip so who knows maybe this one might help unlike the others!)

Is there anyone out there similar or have hip problems they actually know what it is. I feel like I'm a crazy person with all of it to be honest at the moment. Strong family history of RA and my dad has needed double hip and knee replacement (due they think now junior arthritis causing some damage that caused misalignment type thing leading to a lot of wear and needing replacement) also has parkinsonism. Cervical spondylitis. Mum has severe RA started at 17. She believes was seronegative at first. Never really shows much on bloods even when she has a nasty flare and obvious inflammation.

I feel like crying today I don't know why I've battled on carried on with a smile on my face and I take it head on but I have to admit right now I feel like I'm a crazy person..like it's always in my head some how because realistically I haven't a clue why I have this pain and in particular bothering me what is going on with my hip. Its not that it's changed its just I'm managing on hydroxychloroquine well but my hip is the worst area and it's never been scanned.

I guess I'm asking if any of this sounds familiar. How would you describe your hip pain? Does psychological treatment truly help is it on my head?! I sometimes think I'm thinking I have something because my mum and dad do. But saying that my brothers hands look arthritic and he's not right either. Maybe I just need a cry and let it out!! Not felt like this for a while.

Thanks for reading my jibbering. If anyone has any thoughts or wants to say hi!! Crazy person going to find some chocolate.

X

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13 Replies
AgedCrone profile image
AgedCrone

Presuming you have had blood tests that don’t show any clinical signs of RA, has OA been mentioned by your doctors? After 15 years if the hip pain has only just appeared it obviously needs a new diagnosis.

If you haven’t been referred to a rheumatologist ......that should definitely be your first request to your GP.

If that throws up nothing - ask if the rheumatologist thinks you should see an orthopaedic Consultant.

There are many hip conditions unrelated to RA.....but you need to see a Specialist to diagnose what it is .

Good Luck.

Lyndy profile image
Lyndy

Mmmm typically RA presents in pairs of joints such as the wrist. Mine didn’t get to my hips for several years and I would still say hips are not my typical RA joints. My daughter was referred to rheumy due to hip and knee pain but they completely missed that she has IT band syndrome. It’s worth getting input from different sources to see what helps xx

PS.. it’s very reasonable to cry too, particularly cos you are in pain x

Endless profile image
Endless

I’m sorry you’re dealing with this. I have hip pain with my RA. It’s bursitis - you can get it without RA. I’ve had both hips injected with steriods under ultasound guidance. My RA consultant referred me, it helps but is not permanent. See if you can get your Gp to refer you to rheumatology ...

sylvi profile image
sylvi

I'll join you in the chocolate darling. Your in a bad way darling and to be honest I don't have any answers for you, apart from keep plugging at the drs who treat you. Someone will listen to you.xxxxx

I had pain in my left hip for many years and still do. It can wake me at night and generally hurts in the morning. Most of the time it will ease off once I get moving but sometimes it doesn't. It's right in the bone and can noticeably affect my ability to walk. The skin is not red, no fever accompanies it. I also had extreme fatigue with this and my lower back would become very painful if I stood for more than about 5 minutes. For 25 years I was told it was all in my head. Turned out it wasn't: I had ankylosing spondylitis. Luckily I was diagnosed before fusion occurred but the inflammation on MRI was extensive and I was rushed on to anti-tnf treatment.

I felt exactly as you do: I thought I was a weirdo who was imagining she had an illness! I would keep trying to live a normal life and then get cross with myself when I inevitably crashed and had to spend days in bed.

You know your body (I told my GP at the start of my symptoms that I felt my body was attacking itself and I was right on the money there!) and you know if it's not right. If you are not under the care of a rheumatologist then ask your GP to refer you - you need a specialist to undertake the correct investigations and diagnose or not as the case may be. The rheumy will be interested in the family history (in my case a cousin who died aged 7 from complications of junior RA, an aunt with lupus, a nephew with coeliac disease, note the auto-immune thread going on there!). Funnily enough no-one else in my family has been diagnosed with AS, just lucky old me.

I find heat helps the pain. And I still don't actually know if it's caused by the AS or something else as the rheumy did not MRI that part of me!

Leics profile image
Leics

Hi I don’t think that you’re being unreasonable if you’re suffering with hip pain. I’ve had RA for about 10 years it doesn’t affect my hands much my main problem is my hips, knees and ankles. I’ve never had a scan or X-ray or anything on my hips but my rheumy knows that they’re the worst. I think as the hips are such a large joint they don’t often do this.

Generally it’s quite normal to think when 1st diagnosed that the docs have got it wrong and it’s all in your mind because occasionally in the 1st few years you could have days when you were pretty ok and question yourself that it’s all in your mind but in my experience that doesn’t last.

Maybe you should have a good cry in your GP’s surgery and let out all the frustration there I’ve been known to do that usually when I was in so much pain I couldn’t bare it and it’s about the only time I’ve ever been treated quickly and properly. Don’t bottle your emotions up, you know your own body and definitely know when something’s wrong. Time to have a good rant be proactive and start asking fo some answers.

charisma profile image
charisma

Hi Charlie

Prodromal means an early sign/symptom... not a helpful term, I think! Therefore you might well be developing RA and could be experiencing RA pain. It can start in any single joint or in many, varying very much among individuals.

It hit my hips within weeks of starting in one knee... all my joints were affected.

Best to get GP/Rheumatology advice ASAP as RA requires early, aggressive treatment.

Best of luck in getting this the attention it deserves. And I love chocolate!

Pulfs profile image
Pulfs

Has your Dr not suggested an xray to see if there is any erosion going on. I've always been referred for x rays before being diagnosed. Each time showed I needed hip replacements. Try asking for one ,good luck and don't put up with the pain xx

oldtimer profile image
oldtimer

A friend of mine spent months getting a diagnosis of hip pain. She felt that she was not believed because she had a good range of movement in the hip and minor X-ray evidence of OA. Eventually she had a MRI scan which revealed that she had hip bursitis which no-one had even considered...

AgedCrone profile image
AgedCrone in reply to oldtimer

Surprisingly OT, my rheumatologist diagnosed bursitis within five minutes of me hobbling into his office explaining how much pain I was in.

When I went to the physio ....as soon as I walked into his room he said” you’ve got bursitis haven’t you”?

Not that it did me very much good knowing -as far as I have ascertained apart from ultrasound guided injections into the joint there is nothing much to be done about it. Unfortunately that treatment had no effect whatsoever for me.

I believe there is some sort of surgery to draw off the fluid but I don’t fancy that.

I have now decided all I can do is take painkillers and look forward to the periods when the pain magically goes away for some reason

Hi Charlie, blood tests don't always show RA up even though it also runs in the family , if your hip is really bad a X ray or scan might show something up . My wife got RA when she was 30 and like I said it didn't show up in her bloods but they still treated her for it , her specialist doesn't know why it doesn't show up earlier either . I would have a good talk with your GP X.

RAreyna profile image
RAreyna

I've got bursitis in both my hips and it's horrid. I've had steroid shots, which help, and I do hip stretches everyday to make sure the muscles aren't making things worse. The last time I saw my rheum doc, she prescribed an IM steroid shot as well as shots into each hip. I know it's time to do extra stretches and get into a hot bath when I start walking like an old sailor!

auldreekie2 profile image
auldreekie2

Hi Charlie9

My hip was ok until about 3 weeks ago, it came to the stage one morning that I could not walk, it took me a long time to get to the loo my loo is next to my bedroom, I thought enough is enough, I phoned the doctor for a house call thinking they would give me a jag,I got admitted to hospital got kept in for 5 days, they thought I had a infection in hip,I got a X-ray first showed up no infection, then I got a ultrasound it showed up RA and osteoarthritis, so I was kept in they never done nothing just got pain killers all the time, seen a physio and OT. So that was that still getting pain in the hip but not as bad, still have problems walking.

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