Snap, pop, pain... what is this? Is this how it starts? Or is it something else entirely?

[Daddy2aj]

Hi

I am currently living with chronic joint pain in my shoulders, lower back and sporadically with other joints. My symptoms started a few years ago with excessive clicking, popping joints that would move out of place easily. This has gotten progressively worse over the years. I have been referred, re referred and referred again to different departments in rheumatology with only one possible diagnosis of joint hyper-mobility being the cause. My Lower back is now a complete mess it will loudly crack and almost seems to fall out of place and put in massive amounts of pain. I wake up stiff and unable to move my shoulders until I again painfully pop them into the correct position. With excessive popping developing in almost all other joints in my body I am completely crippled with anxiety that I will become completely disabled with this condition, I am a new dad and the thought of this crippling me, stopping me from being there for my daughter is tearing me apart. Although I have been diagnosed with hyper mobile joints, I wonder if this is the correct diagnosis. I have never been very flexible and this issue has only developed in the last few years in my late 20s! I have always taken very good care of myself. I go to the gym for strength training regularly, I do yoga, I eat well, I practise mindfulness and anything that can give me an edge but nothing is working and I’m just getting worse. Has anyone had similar symptoms? Can you really be hyper mobile with fairly poor flexibility? How do people deal with the uncertainty and anxiety of this getting worse? I’d really appreciate the help. Thank you

[cyberbarn]

Hi,

First of all, congratulations on being a new dad!

As for hypermobility and men, they do often present differently. We women have a different set of hormones that make us appear more hypermobile sometimes, whereas men may not display like that.

The interesting thing about EDS is that originally it was a concern for the dermatologists, (it was named after two dermatologists) because it also affects the skin and other tissues. So even if joints are mildly hypermobile, it doesn't mean to say that someone doesn't have HSD or hEDS.

It does sound like you need a proper assessment. Your GP could do this using the RCGP EDS toolkit. Have a read through it, take the URL and check list to your GP and ask them to diagnose you. If they refuse ask them to suggest someone that will.

rcgp.org.uk/clinical-and-re...

My Son has EDS much worse than either myself or his dad. His dad's joints aren't that hyper mobil, but he has stretchy skin and other manifestations. And a subluxing shoulder! As my son grew up he grew up knowing that Daddy couldn't do certain things because of his shoulder, but that didn't stop my son from loving his Dad, or his Dad from loving him and doing other things with him. So I got to go down the rapids at CenterParks with my son, while my husband sat around teaching my son maths.

As for dealing with the anxiety of it getting worse, you are ahead of others in that you are already practicing mindfulness. But you might want to check with the social prescriber at your GP surgery to see if there is any counselling or other activities locally that might be useful. I hear Men's Sheds are really good, but I wouldn't know as I have never been invited to one, have only seen the presentations which look really good!

[Daddy2aj in reply to cyberbarn]

Thank you so much for your input. I have another appointment with my GP today and I will be sure to mention the checks you have advised. I feel like maybe the anxiety and uncertainty of my condition is more than likely sending my pain through the roof at the moment. I have a very physical job and I have no idea what I would do if my body denied me the ability to perform my trade. I’m just sounding off here I’m sure you can’t offer much in the way of job advise. Did you, or anyone you know develop symptoms as late as me?It seems like this came from nowhere. I was fit, strong and healthy and now it feels like this is going to take everything away from me. Could you advise what i should be watching out for with my daughter? It breaks my heart to think she could be in pain in the future. Thank you!

[cyberbarn in reply to Daddy2aj]

How did it go with the GP?

And yes, it is common for some people to not show many symptoms until they are older. If my son hadn't been diagnosed when he was 13 I would never have know I had EDS!

As for your daughter, don't panic. Many children are very flexible when they are little, so you probably won't know for a few years if she is has the same thing as you. Just keep loving her!

[Daddy2aj in reply to cyberbarn]

I’ve managed to get referred for a second opinion with a different rheumatologist, I don’t have a very good relationship with my current doctor and she is far too blunt and lacking any real info, I have had a full MRI of all my problem joints, I have a few fused discs and inflammation in my SI joint and shoulders, from the little feedback I’ve had from this doc I couldn’t tell you if these issues point towards a real problem or just ware and tear! I was also offered a prescription for anti depressants which I took but decided not to pick up, I’m not ready to give up on conquering my demons on my own yet.

I completely agree with your advice for my daughter I am trying not to worry too much about her right now. She is very happy and very loved so that’s all I can do for now.

My pain is manageable at the moment, the anxiety of it getting worse is my biggest challenge day to day. A real trigger is when ever a joint pops out of place or snaps for no reason, I can literally take a deep inhale and feel multiple joints pop with very little movement and it’s driving me insane. Just when I quiet my mind I’m brought back to the issue at hand. Is this one of the main symptoms of EDS or do you find this isn’t a huge issue for you and your family?

[cyberbarn in reply to Daddy2aj]

I think my son gets this, but I don't any more, at my age all my joints are stiffing up with arthritis.

It sounds like you could do with some counselling or at least someone to talk to, certainly not antidepressants.

Or, have you thought of doing self CBT? I used to have a fear of doing hill starts in my car. But I realised I needed to get over this, because I could do them, I just had this fear that I would roll backwards that started when I did my driving test (forgot to put the car in gear when I released the handbrake!)

So I roped in my son who was about 10 at the time, and said that every time I got to the lights at the top of the big hill, he was to tell me how good I am at hill starts. He didn't get it at first and said, 'But mum, you are crap!'

So I explained again, that I am good at hill starts, it is my fear of rolling back that is holding me back ,so I just have to convince myself that I am really good at it.

So I measured my anxiety on a scale of one to 10, and it started out at 8. And my son would tell me how good I am at them, and I would say yep, I am good at them, repeating it over and over until I pulled away.

Then the next time I would measure my anxiety, and it was a little less, and over the space of a couple of months it dropped and dropped until one day I forgot to tell myself how good I was at hill starts!

So maybe this is something that you could try. Think about how anxious you are next time a joint pops, give it a number. Then tell yourself it is okay, joints pop like this, it isn't the end of the world, it isn't going to hurt you, and relax.

It might work, it might not, but if you know how to do mindfulness, you might be able to do this yourself too, and save a long wait for a counsellor or similar.

And as for hill starts, the whole situation came back to haunt me when I was driving my son and his friends to an activity. They were all 16-18, and they had heard the story of the hill start. And their drive was a steep hill up to the road. And as I drove up to the top and stopped to check for traffic before I pulled out... yes, you guessed it, this voice from the back of the car, from one of my son's friends, said quietly, 'You are very good at hill starts.' We all cracked up! Well, they say laughter is the best medicine!