J.H.S (Joint Hypermobility Syndrome) & Chronic Pain

Hi,

I'm Stacey I am 29 years young. A little back story...When I was 15 I began getting what can only be described as toothache in my knees, I saw the doctor several times...To no avail.. I began physiotherapy and was diagnosed with Joint Hypermobility Syndrome and given exercises etc to strengthen the joint. Unfortunately this didn't cure my pain...I used to and still get flare ups and woe betide me if I walk or any distance...My knees begin to balloon. Following this diagnosis and physiotherapy not helping I was referred to an orthopedic surgeon who diagnosed Chondromalacia which was later discounted through x-rays, MRI and an exploratory surgery at age 21

After years of doctors not knowing and saying there is nothing else we can do...I just got on with it...And lived with the pain.

Now however I get chronic pain in my hips down to my knees and also my shoulders....Again o have been referred to physiotherapy with doctors telling me it's JHS that's causing all this pain...But fail to acknowledge my other symptoms...I can sleep all night and feel completely drained when I wake as if I haven't had a wink of sleep....My partner regularly tells me that I cry out in pain if I move in my sleep!

It was suggested by a locom doctor that I have fibromyalgia which my mum is diagnosed with...But other doctors fail to recognise this because of my age or they don't know enough about it. I have witness my mum's struggles and how outwardly you can appear completely heathly but on the inside...you're itching to just sit and rest or want to close you eyes at your desk ecause you are so completely drained from just day to day tasks.....I am that person and it is a daily battle...But one I do my best to try and conquer....Sometimes without great success.

I am currently being referred back to physiotherapy to try and get a referral to the hip clinic as I get flare ups of it feeling like my thigh bones are on fire and I can't get comfortable...And sleep eludes me because of the pain...My question is how do I still the doctor to listen to me? How do I explain that my pain is completely debilitating when it is bad? And how do I say that I want another opinion or a referral to the pain management clinic to get a formal diagnosis for FM as it has even previously suggested?

I am struggling to stay on top of things...I am very fortunate that my work are supportive and my boss has witnessed me barely able to walk and I am still in work so she understands that when I do have time off....It is because I NEED it and not pulling the other one.

Any advice would be very welcome...Sorry for the long winded post and I definitely haven't covered everything it's just a snippet to give you guys an idea

7 Replies

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  • From what I have read on here previously, I gather you need to see a Rhumatologist Consultant to get a correct diagnosis for Fibro or whatever else it could be. I'm sure there will be someone more knowledgeable on this subject replying soon. Also on HU there is a Fibromyalgia Action uk forum which I am sure you will find helpful.

  • Thank you for your response, the doctors just keep saying it's JHS as it's easy and already diagnosed...Only one locom doctor has consider FM. My mum has long thought I have it as she is a suffer. I am not saying I do have it and will seek professional diagnosis when I can get a referral to the correct place but they only reference to physiotherapy which either makes things worse or doesn't help at all :-( it's getting the doctor to believe that's the hard part as outwardly I look ok except some bags under my eyes from poor sleep :-/

  • Hi,

    Sorry to hear about all of your pain and problems with diagnosis.

    I went through pain clinic as I was referred by my haematologist. I also see a specialist pain physio who is very knowledgeable about pain and mechanism of my hypermobility etc. A rhuematologist would be a good point of call as I am not sure if GPs can refer to pain clinic as they cannot in my hospital trust.

    Hope that helps

  • Stacey hello,keep on&on&on at them i have fibro and siatica but it took decades for them to diagnose me because my pain was mostly on one side they kept ruling it out i had to diagnose myself and simply say im not accepting what you just said cause i know myself and this has went on to long im living the pain not you also im not feeling as though i live,i just exist i want another opinion he wasnt fussed much about it ,so keep strong and keep on at them get them to refer you to a neurological doctor.let me know how you get on.

  • I have another phsio referral for the end of February....I shall keep you posted... Unfortunately I have the overwhelming feeling that doctors don't believe as all test and scans have come back clear :-(

  • See an Alexander technique teacher. They will help you use your muscles more effectively and help you become aware of any posture problems you may have.

    See a McTimony chiropractor. They may not cure the problem however, they may be able to reduce the pain you have. Some of the pain you have may be due to muscle micro cramps.

    Hope I have been able to be helpful.

  • Thank you, at this stage any help or advice is welcome

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