Undiagnosed and rare conditions
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Combination of extremely tight muscles, weak muscles, loose SI joins and bi-lateral hip replacements

HI all, first off I'm excited a community like this exists out there. I'm hoping it will help me find some answers. I'm 37 y/o male and have been battling this since I was 18. All my life every doctor, PT, chiro, LMT and everyone else I've seen has had different opinions and approaches and I've yet to find relief. 
I've had both of my hips replaced in the last 12 months due to hip impingements on both sides. Left was December 18 and right was March 19. The doctor said they were two of the most inverted hips that he'd ever seen, meaning the ball was so far turned down inside the socket that he was shocked I made it this long without replacement.
I had a DO tell me that my hips weren't the source of my pain, that my SI joints were so blown out that they weren't stabilizing the middle of my body anymore, and that I would regret having the hip surgeries. So far, he's not wrong.

Basically, everything from my knees to my nipples hurt. My hamstrings, quads, glutes (all sizes), lower back, QL and everything else is super tight and/or weak from years of compensation and use/overuse. I've been in constant PT for over a year now with no real progress on muscle tightness, flexibility and overall pain. My PT says my muscle strength and flexibility are close to normal, yet I struggle to walk up a flight of stairs, more than a few blocks, or chase my kid around the yard for a few minutes. If I choose to overdue it, it's in exchange for increased pain and loss of mobility and functionality for a few days after.

My PCP, who is a DO, adjusts me every 3 weeks, and most times my pelvis/hips are rotated differently and she needs to adjust me in a different manner. She says my sacrum sits about 2-3" higher than typical (belly button level) and my muscles are the tightest she's ever encountered. A former PT related them to steel cables, not just tight ropes. Trigger points galore, and the only thing that gives any level of relief is hands on body work with solid stretching after. 

I'm at my wits end on what to do, as every doctor still has a different opinion, and resolution, that I give a fair chance with no great improvement. My PCP told me this morning that she's unsure if we'll ever get to complete relief and I might need to consider dealing with this type of pain my entire life. Honestly, I can't do anything (sitting, standing, walking) for more than 30 minutes at a time w/o needing rest or to switch it up. I can barely lift my 45 pound daughter or hold her for more than 30 seconds.

I could use any help I could get. Many thanks for any thoughts.

Replies

  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @robdawg99    Pleased to meet you.

    Thank you for joining and sharing.

    I am one of the team of community champions.  We advise, help and support members of our community.

    Please have a look around our website we are friendly.

    I know we have members who may have similar issues to you, whether they can advise or not so not know.

    I am sure if they will be in touch with will do so. In due course.

    Please can I inform you we are not medical professionals. Sorry to tell you that.

    Please ask if we help further. Happy to be supportive.

    Please take care.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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  • chiariedschiarieds Community Co-Production Group Posts: 9,207 Disability Gamechanger
    Hi @robdawg99 - Welcome to this community, which is indeed a great place for people with their very many different disorders. I hope, however, that you may understand, as my friend the spiceman has said, that whilst we share our difficulties, & support each other, it would be impossible to give guidance as to what your problems are as we can't see you, or your medical notes.
    I can identify with SI problems, & a Dr I saw, who was also an osteopath, saying that he'd never seen muscles at either side of the spine as tight (in so much spasm) as mine.
    I'm sorry that the different modalities you've tried haven't given longer lasting relief. If you'd be interested in how some here, myself included, try to find other strategies to cope with chronic pain, please say. Some have fibromyalgia, neurological problems, arthritis, etc.
  • robdawg99robdawg99 Member Posts: 2 Listener
    thanks for the kind words you two. I understand we're not medical professionals here, but I was hoping there might be someone with similar experiences that can point me in the right direction on a treatment that has worked for them.

    I am going to see a rheumatologist in January, maybe there will be something there???
  • chiariedschiarieds Community Co-Production Group Posts: 9,207 Disability Gamechanger
    Hi, sorry we've not been of much use. Sometimes I wish you could just get all of the specialists whom you feel you might need in one room; explain your difficulties, then hopefully get some answers. Just to explain, I worked as a physio quite a long time ago. You'd think that would help.....well I worked out what I thought I had through researching medical papers, but still had to go the rounds of seeing 3 geneticists, 3 rheumatologist's, 2 neurologists, 2 neurosurgeons; talked to 2 neuroradiologists, etc. & had emailed a New York neurosurgeon, who had begun to see a few patients that also had my putative combination of disorders, when I initially contacted him. As I thought it was a genetic disorder, it was important to have this confirmed by our UK Drs, as I'd passed this on to my children, & 3 grandchildren.
    I hope you may get some answers from your rheumatologist. Specialists are incredibly good at working out what you might have as far as their speciality goes, but don't always consider looking at the whole person, to see what else may be going on IMHO.
    Please keep in touch, & let us know how you get on.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @robdawg99    Good morning to you, I would like to suggest to you have look on the web.

    This is something I would recommend. Sit down key in words and see what you come up with.

    I just think would be useful.

    Hope that helps just an idea. You are seeking answers we as a community can and do recognise. Yet we are bound by rules.

    It is worth sometime finding out.

    Some times you never know. What is out there.

    Please if I can help further please get in touch.

    Please take care.

    @thespiceman


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @robdawg99 and a very warm welcome to the community! It sounds like things have been really difficult and a bit of a constant fight! Sounds like you certainly are fighting though! Please do have a look around, get chatting and give me a shout if there is anything I can do to help. :)
    Scope

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