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EmeraldMosaic

330d

So, I have a problem where my hip flexor will begin to hurt as I walk, and will get to the point that the *only* thing that relieves it is sitting down to rest. Just standing for a bit doesn't make the next step any less painful. I don't even know what to call it; it isn't a spasm or cramp, because it only really hurts when I take a step (aside from a residual achiness that gradually gets worse as I keep trying to walk). Stretching can make it worse, even though it temporarily feels good. I'm taking Baclofen 20 mg 3 times a day (with an optional 2am dose if I wake up in spasms/cramps). I also have tizanidine (Zanaflex) that I can take between Baclofen doses as needed. Neither of them helps with this. This started in late spring of 2011, and has not gotten better. I had a scope surgery of that hip Dec. 2011 for torn cartilage, and a total hip replacement in 2016 for advanced arthritis. This particular pain has, at times, improved a little, but I always reach a plateau, and then it goes right back to bad. Does *anyone* have any ideas - either of what this is, or what to do about it? I really miss going for walks.

    • TINAMARIE85

      316d

      Also, y'all, here are a couple of links that may be of some use for support/information. πŸ™πŸ½ Hope you find these helpful. https://m.facebook.com/ehlers.danlos/?wtsid=rdr_07KEHzOWCUD5meiMI&refsrc=deprecated&_rdr#_=_ https://www.ehlers-danlos.com/

    • Flutter

      329d

      I have bursitis in my hip and get it drained every few months and cortisone injections

      • Flutter

        329d

        @Flutter Have you had scans done?

        • EmeraldMosaic

          315d

          @Flutter I have bursitis in both hips; never heard of having them drained, but I have periodically had cortisone injections. I don't see how that relates to the hip flexor, though. Yes, I've had scans done. They don't show anything that would cause this. I figure it's caused by EDS.

    • Vidya

      329d

      If I were in your position, I would check out my lumbar spine and sacroiliac. Maybe it’s not coming from your hip

      • EmeraldMosaic

        315d

        @Vidya The lumbar MRI showed nothing that would cause this - or my lower back muscles cramping up from standing too much. I have also had steroid injections into the SI joints; that is not causing *hip flexor* pain & cramping. I know my body, and I know where the pain is. It's absolutely 100% the hip flexor muscle that is hurting.

    • RhondaRad

      329d

      πŸ™

      • Vidya

        329d

        @RhondaRad I don’t know how to check the message here, but you can find me on TikTok under holaback123

    • RhondaRad

      329d

      I have similar issues and I'm just getting worse and worse with no action taken and my muscles and ability to stand going downhill from lack of use. Any ideas on how to do this together? I've asked for physical therapy and they basically hand me a piece of paper to take home to try for 2 weeks and come back that's not what I need I need support and people. Is there a way to do that in a group...online..... with supportive people experiencing much the same thing? That would be such a godsend. I am at home alone all day and then I go to work in the office where I'm by myself. Everyday is getting worse and I can't get the answer to start going forward somehow.

      • Vidya

        329d

        @RhondaRad perhaps you can start an online Facebook group with the title for chronic pain patients. I would be willing to help moderate with the admin part. . You’re always gonna get trolls online.

    • Anir

      329d

      Sounds like you may have a little stenosis going on in your lumbar spine? Have you tried seeing a chiropractor? Usually a daily routine of stretches and exercises can help you build up your ability to stand and walk a little longer? It’s a headache and sometimes depending on your mood? Can feel burdensome? But if you get into a routine, it really does help.

      • EmeraldMosaic

        315d

        @Anir The lumbar MRI showed nothing that would cause this - or my lower back muscles cramping up from standing too much. I do see a chiropractor regularly; I was actually raised on chiropractic care. As for a daily routine of stretches and exercises... To repeat what I told TinaMarie85, the problem is that, every time I try to strengthen the muscles, even when I progress slowly over a period of weeks, I ALWAYS hit a plateau and then worsen. This has been a consistent pattern since 2011. How do I break the pattern, is my question?

      • Bijoux_bean22

        320d

        @Anir use caution when the chiropractor is involved. Many times they can end up accidentally subluxing, dislocating, or otherwise making things worse.

      • Vidya

        329d

        @Anir routine is key for all chronic conditions and conducive to life in general. Right?

    • MCADBox

      329d

      Going to message you

    • SleepyLizard

      329d

      Hey! I get a similar pain in my right hip that will start when I'm walking and it's a sharp pain that is only relieved when sitting down or lying down for a while. I don't have any drugs that help but I find that if I walk with a walking stick it helps prevent the pain from getting too much worse

      • EmeraldMosaic

        315d

        @SleepyLizard For years, before my hip replacement, I used a crutch on the left side to support the right (always use your support on the opposite side; counterintuitive, but it really is better). But that triggered tendonitis and nerve pain in my left wrist & hand. I now have a walker that has an armrest attachment on the left side, but using a walker outside absolutely sucks. The wheels catch on things. I've been thinking about pushing my wheelchair along the sidewalk, so I have something to sit down on when I need to, but then my left wrist will hurt... πŸ˜’ I'm just frustrated.

        • SleepyLizard

          310d

          @EmeraldMosaic omg that sucks. I've also done the thing where I've pushed a wheelchair and it has hurt my wrists. And I also get wrist pain while using sticks which is why I have to keep switching sides when I use a stick! Thanks for the tip about using the support on the opposite side. I was able to save up for an electric wheelchair which has helped me get out and about without risking hip joints hurting and getting dislocated and saves my wrists too.

    • RainbowNarwhal

      330d

      I can't speak to your specific pain, but I second what the above commenter is saying. The main thing I'm doing to improve my pain is physical therapy to strengthen muscles to stabilize and support my joints. It has started to really help me, but I still have quite a ways to go. I hope you find solutions!

      • EmeraldMosaic

        315d

        @RainbowNarwhal I appreciate your comment. As I told TinaMarie85, the problem is that, every time I try to strengthen the muscles, even when I progress slowly over a period of weeks, I ALWAYS hit a plateau and then worsen. This has been a consistent pattern since 2011. How do I break the pattern, is my question?

        • RainbowNarwhal

          310d

          @EmeraldMosaic I'm sorry, that must be so frustrating and discouraging

    • TINAMARIE85

      330d

      I would say truly be careful as we have a connective tissue issue! So when we are taking MUSCLE RELAXERS and anything that RELAXES, our main issue is ALREADY LAXITY in our connective tissues. So, we want to remain cognizant of that. OUR ENTIRE BODY IS CONNECTIVE TISSUES! If you're anything like me, it is your PIRIFORMIS MUSCLE which is deep DEEP under your gluteus maximus minimus, your medial gluteal and everything else. Look up the anatomy on Google, or better yet download 3D SKELETON in the App Store! That way you can really get a close-up look at your anatomy each time you want to break down and understand your body better. The BEST THING you can do for yourself right now is MUSCLE BUILDING & STRENGTHENING. What you want to do, the ultimate goal, is to build support to hold yourself in place, which is going to be that muscle structure around your bones, ligaments, and tendons! It is a hard thing to do and trust me I'm doing it myself right now after having two back-to-back spine surgeries, but let's do it together! I too have hEDS (along with a bunch of other overlapping, compounding conditions!)! You're in my prayers!πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ™πŸ½πŸ₯°πŸ™πŸ½

      • EmeraldMosaic

        315d

        @TINAMARIE85 The problem is that, every time I try to strengthen the muscles, even when I progress slowly over a period of weeks, I ALWAYS hit a plateau and then worsen. This has been a consistent pattern since 2011. How do I break the pattern, is my question? (Oh, and I actually do know that it's my hip flexor, not the piriformas, as you suggested. I was a nurse for 17 yrs, and I know my body really well.)

      • Chronicdecay

        329d

        @TINAMARIE85 The suggestion of the 3D skeleton app is brilliant. I'm constantly trying to figure out exactly what's hurting. Thank you.

        • TINAMARIE85

          316d

          @Chronicdecay DOESN'T THAT APP ROCK!?! THANKS! πŸ€—πŸ€—πŸ€—πŸ’ͺπŸ½πŸ™πŸ½

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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Based on the shared experiences in the context, some people have found relief from hip pain through methods such as hot showers or baths, hip opening and back lengthening stretches, yoga, physical therapy, and using a cane to take some pressure off of the legs. However, it's important to note that these are personal experiences and may not work for everyone. It would be best to consult with a healthcare professional for personalized advice.

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