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Hip Problems – Help!

  • By Delphi

    Hi Everyone, I am new to this site but not new to RA. I was diagnosed in 2013 when I was 31 after suffering for a year with painful swollen joints. I am in NZ and under the public health system here, which for the most part has been excellent but as such I don’t think I can change Rheumatologists.

    I am sero-negative and my RA is pretty well controlled. I have been through a lot of meds though, started on MTX orally then switched to sub-q but the nausea remained so my Doc put me on leflunomide which seemed to be working, unfortunately I developed a rash and terrible itch so had to come off that. Sulfasalzine gave me headaches. I am now on hydroxychloriquine.

    I have had hip pain in my right hip of a few years now, it was always there but I put up with it, I managed to exercise well enough and ignore the pain, when it started getting worse I mentioned it to my Rheumatologist every time I visited, he would examine me and move the joint around, which I had told him never caused pain, it was sitting for long periods or waking in the morning that was worse. Eventually I felt like he got sick of me going on about it so said he thought i was caused from being very flexible and the tendons had stretched. This sounded like a cop out to me, if that was the case then half the population would have the same issues!

    In October all of a sudden my left hip began aching too. I was on a car trip through the South Island so did a lot of sitting in the car, which was like torture. Getting up out of the car was very painful,I couldn’t stand straight for the first few minutes as the hips felt tight lie the skin and muscles were going to break. I put my self on a course of prednisone which cleared it up and cleared up my sore toes that had started hurting at the same time. However as soon as I came off the prednisone the hip pain returned. It got worse, I couldn’t lay on my sides in bed as they felt bruised and I wasn’t sleeping well. So I took myself to my GP and told him all of the above. He was so kind and said he knows when someone is just complaining and he could tell I was not one of those so when I said it was affecting my life he believed me and he was sorry I felt like my Rheumatologist didn’t. Sadly as it was out of his expertise and he sent me to my Rheumatologist and put me back on 15mg of prednisone and celebrex.

    It seems all my rheumatologist is interested in is my bloods, and they are normal therefore it can’t be that bad. I feel better on the prednisone and celebrex so he wants me to see how I feel on 7.5mg a day and if it is good leave me on them permanently. This isn’t something I want to do, I am hungry all the time, and gaining weight and I know they are not good for you long term. I don’t qualify for biologics and I get that, there are people worse off than me and the government has to prioritize spending but surely there is something else I can do?

    Does any one else have hip pain like this? What do you do? Do they think it is your RA or something else?

    Sorry for the long post, I would just like some advise from fellow RA warriors.

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  • By CaseyH Moderator

    Hi there Delphi,

    First of all, welcome to our community! We’re so glad you’ve found us!

    Wow, thank you for sharing all of that with us. What an interesting and frustrating experience you have had. I hope others in the community can provide you with some personal experiences and suggestions. In the meantime, I wanted to share a few articles with you that I thought you may connect with, https://rheumatoidarthritis.net/living/the-hostest-with-the-mostest-hip-pain/ and https://rheumatoidarthritis.net/stories/sleep-best-medicine/ Both articles talk about hip pain and are written by contributors who struggle with this as well. You may be interested in joining in the conversation on these articles in the comments section, too!

    I’m so sorry to hear that you’re struggling with this, however, I did want to commend you on your self-advocacy. It was an awesome idea to go visit your GP when you felt your rheumatologist wasn’t listening nor taking your complaints seriously. Such a great example of fighting for yourself and what you feel. We know our bodies best, and it’s so important to trust that and advocate for ourselves and others. You are awesome.

    As I mentioned, we’re glad you’ve found our community, and we hope you’ll continue to share with us. We’re here to help you in any way we can. Hopefully others will chime in on this issue to provide you with more information soon!

    Best,

    Casey (RheumatoidArthritis.net Team)

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  • By mamadee

    Has anyone done an ultrasound or an x-ray of your hips?

    I ask because I kind of did it backward from you….lol. My hip pain is what finally pushed me over the edge to go see a doc again about joint pain. My hip had become the worst of it all. Left worse, but also right hurt, too.

    Went to a chiro first b/c I could get in right away. He did an x-ray, told me my hip bones looked great. But I could have hip bursitis. (and tennis elbow, but that’s another post!)

    Went to a rheum. who did an ultrasound and confirmed hip bursitis. Gave me an injection in my bursa and 3 down my IT band. Helped for a week, then pain came back. He said since my labs were ok, I did not have RA.

    Got a second opinion. That rheum did x-rays. Low and behold, she found bone erosion in my feet AND hips. Started talking about sero-neg. RA…….still figuring all that out. She also agreed I prob also could have hip bursitis. So just because you have arthritis, doesn’t mean you don’t have hip bursitis. And just because you have hip bursitis, doesn’t mean you don’t have arthritis! In fact, they seem to like each other.

    I am doing a 15 day course of prednisone, which is helping, but it doesn’t take it all away. I am also doing stretches that the PT gave me for bursitis, and that does help loosen things up a little.

    Hope you get some more help and answers. Don’t let a doc. tell you that just because your labs are ok, you are imagining things. I can attest to this scenario!

    I have six kids, and used to have tons of energy and work out hard six days a week. Do mud runs, 5k’s….whatever. In the last 2 years, I feel like someone has changed my body for someone else’s. I kept saying, “Look, I am not a whimp.
    I am not imagining this. Something is WRONG!” Sometimes we just need to find the right doc. to really listen.

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