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Benign Joint Hypermobility Syndrome

So, it’s taken 12 years to even begin to get to the root of my son’s back pain. Thanks to a suggestion by this group he went to see a rheumatologist. This obviously brilliant and very compassionate doctor, explained what we now know what started this whole avalanche of problems in the first place. What a journey it’s been. The very recent diagnosis is Benign Joint Hypermobility Syndrome. Just a side note...it’s not very benign after all. Long story short - his joints move too much due to super flexible tendons that don’t hold his joints in place. This has particularly affected his lumbar spine region and is causing significant arthritis. Also what probably made him more prone to stress fractures (which he suffered while playing football) and  spondylolisthesis. We are waiting for our follow-up appointment with the rheumatologist to see how to proceed from here. 

But I wanted to post this in case it helps someone else solve a back (or other joint) mystery. We had never been referred to a rheumatologist by any of our (literally dozens) of doctors we’ve seen over the years and I just thought rheumatologists only treated rheumatic arthritis. We now know that they can treat a huge variety of types of arthritis. The doc we saw was so nice and very positive that he can help. No one else has been able to uncover the mystery that we’ve been dealing with for so long. Apparently this is an uncommon disorder that is rarely diagnosed by GP’s or even specialists. So, anyone dealing with arthritis from mysterious origins might consider visiting with a rheumatologist. 

Once again, I can’t say this enough, thank you to this group. You’re literally been my lifeline over the years! 

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Comments

  • Glad you got an answer finally. Was the onset of his pain sudden or gradual?

  • Hi L4_L5! He suffered an acute back injury...a stress fracture...while lifting weights in off season football his freshman year in high school. But it took us a couple of years to even find the fracture. Several years of worsening back pain followed along with many crazy complications including a spine infection from injections. Truly a nightmare that ruined his life and seems never ending. But we never knew why his back was so prone to injury, pain, dislocation, and arthritis until now. 

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  • I am very thankful that he has a diagnosis, hopefully the doctor can get him a treatment plan that will give both of you your lives back.

    Take care and keep us posted

    Chip

  • Thank you so much, Chip! Weren’t you the one who initially suggested that we go to a rheumatologist? I can’t tell you how glad I am that we went! Much appreciation! And yes, I hope we can find something that helps. I know there won’t be a “perfect” answer that will cure his back issues, but if he could just go back to a relatively normal life (work, sleep, go to the movies, etc) that would be amazing! 

  • I am so glad that the possibility is there for him to live a normal life, I had the same issue of geting a referral to a rheumatologist, I finally had to tell my doctor that I wanted to see one, it seems like doctors are scared to send you to somebody else or just don't want to.

    I am just glad I could help in some small way.

    Take care and keep us posted

    Chip

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  • Icarpenter, I'm SO glad you found someone who is kind, compassionate AND brilliant! My daughter has fibromyalgia and my DIL has hypermobile joint instability, hers is caused by an immune system disease (ehlers danlos). They both see rheumatologist. Not many people know they treat so many different issues, it's such a comfort to know someone can help! I've learned so much from this group besides the great support I find here. Thanks for posting what you found out. Keep us posted on your sons progress when you can.

    Joanne 

  • Thank you, Chip and Joanne!

  • Well, no help. My son had his follow up appointment with the rheumatologist today. I can’t even begin to describe how disappointed I am. It was obvious that the doctor had not even read my sons history. He basically just told him that he probably has lots of scar tissue and inflammation (no kidding) along with joint Hypermobility syndrome and asked him if he’s ever tried physical therapy before. Also recommended seeing a pain management doctor. We’ve only spent 12 years and literally hundreds of thousands of dollars doing both. Nothing has helped and several things have made him worse. I’m sitting here at work and can’t do anything but cry and cry. I don’t know what to do or what will become of my son. I’m so scared and so sad. 

  • Would it be reasonable to see a different rheumatologist, one that is willing to put the time in.

    Chip

  • I'm so sorry to hear this. It's so hard to get your hopes up only to have that hope snuffed out. I know it makes you want to give up. It takes so much courage and energy to persevere. I get a little of what you're going through because I have a grandson with multiple health issues. It's just plain hard! I'll pray for strength to keep searching for answers. I think Chip's idea is a good next step even though it's probably the last thing you and your son want to do, another doctor! I always tell myself to take a deep breath and keep going. My DIL has been all over the country and has finally found some alternative treatments that have helped. My heart hurts for you and I'll sure be praying for wisdom for the next step. Take it a day at a time. 

    Joanne 

  • Chip beat me to it. First thing that came to my mind was to see a different rheumatologist. That specialty IMO has more volatility and differing of opinions than any other specialty (just IMO).

    And/or

    How about an upright lumbar MRI? Maybe something is being missed on the recumbent MRI? Just brainstorming.

    Don’t give up and please keep us updated 

  • Just a thoughtful, are you close to a Mayo Clinic? They are amazing and deal with a lot of things most places don't. My DIL couldn't get in because their insurance didn't cover it. 

  • Chip, L4\L5, and joanne2 -I appreciate your support so much. Really, this group has kept me going when I didn’t think I would be able to.  One of the most difficult parts of this is that when I send my son to yet another doctor that doesn’t help, it feels like I set him up for utter disappointment and my heart breaks for him. And I know it will be several months before he will even consider going to anyone else. I know from research and reading the comments from so many here that it is common for there to be no real help for some spine conditions. It just seems hard to believe that my son has been doomed to a life of such pain at such a young age. I have looked into the Mayo Pain Rehabilitation Clinic and it looks great and I’m pretty sure his insurance would cover it, but none of the clinics are near us and we are flat broke at this point from paying for alternative treatments daily. We don’t have money for three weeks in a hotel. I keep looking for something similar in Texas but haven’t found anything yet. Again, thank you all so very much!!! I appreciate you all! 

  • I really hope that something comes up to help him, I know your heart is breaking just seeing his pain, I have 2 sons and I can only imagine the frustration of it, all you is keep supporting him the best you can and keep looking, you are in my prayers.

    Chip 

  • Thank you, Chip. I appreciate those prayers so much. 

  • We ended up in the ER last night. Tons of pain and anxiety out the roof. He kinda panics when his back amps up. Super nice doc (who also has back issues and also  had a fusion done by our same surgeon) ordered a CT scan. This was very helpful because we were scheduled to get a CT at an imaging place and this saves us a trip and saves me from having to miss work (it’s the small things). It didn’t show a lot of changes from previous CT scans except the redevelopment of 2mm retrolisthesis that was surgically corrected in 2013. Guessing that his joint Hypermobility is the culprit. We’ll see what his doc has to say. Thanks to everyone for your support. 

  • memerainboltmemerainbolt IndianaPosts: 4,461

    lcarpenter

    As always you, your son and family are in my prayers. Sometimes it takes something like his trip to the ER to possibly bring something new forward or looked at by someone different. Please keep us posted.

    Sandra

  • Thank you so much, Sandra. I appreciate the prayers and support! Often times going to the ER is just an exercise in frustration because the ER staff usually just doesn’t understand chronic back pain. But I’m this case they were so understanding and nice. Didn’t get a hint of the suspicion we frequently get when a young man in his 20’s comes in complaining of pain. Was actually a helpful visit. 

  • memerainboltmemerainbolt IndianaPosts: 4,461

    It is really sad that the medical field has put chronic pain patients in the same category as drug seekers. I am so glad to hear this time it was helpful.
    Keep us posted and take care.
    Sandra

  • I hope this visit leads to something that will help him

    Chip

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