Any advice?

[Rukia99]

Hi. I'm a 17-year-old girl and I've been having pain in my lower back, knee and shin/ankles for about 6 years now. The doctors have kept coming up with different diagnosis - Calcium deficiency, Vitamin D deficiency, flat feet etc that they thought explained it but I've had Vitamin D and Calcium supplements for around a year now and I've had special insoles made for my shoes that I've been wearing for around 3 years and they haven't made a difference - if anything, the pain has gotten worse. I had a physiotherapist for about a year but he told me there was nothing else he could do for me other than tell me to keep doing the exercises he suggested for me and tell me to join a local Pilates group. I have done both of these things, the exercises everyday, for about 2-3 years now but the pain is just getting worse. I dislocate my shoulders by accident, my back cracks and I can't get up on my own when I lie down and sometimes when I walk to my lessons I feel like my hip is continuously popping in and out of place. I've been told I can't run or jump and I can't walk for long periods of time because it causes too much impact on my hips and knees and my back. If just like to know why this is happening and if anyone has any ideas on how to manage it better. Sorry about the long paragraph, thank you

[Philip]

This is sad aged 17 and going through your own torment, That is grounds for going back to our maker, and tell him/her you would like a new body, if only, it was a nice thought

I hope you find the answers that you are looking for, I wish you a speedy answer.

[Rosepetal60]

Apart from the shoulder problem,Have you seen any specialist consultants ? And if so, have you read their reports ? There should be some clues there. Pilates is the last thing I would be thinking of doing or to put it another way, I would get a second or third option on doing Pilates especially if as you say and think your pain is worsening. I feel I'm missing something here, will check back later in the day when hopefully I've had some sleep.

[Rukia99 in reply to Rosepetal60]

The Pilates group I joined is one especially for older people and people who've recently been with a physiotherapist ^.^ it's all low-intensity stretching and core-building moves.

[Bevvy]

I read your posting with interest. Obviously we can't diagnose here but some of your symptoms ring a bell to me..... you shouldn't be dislocating shoulders or feeling hips pop out. Might be worth looking up hyper mobility syndrome.

I don't have condition but is something I know about due to work. There is a support group for the condition here in the U.K.

[Jewiemax15]

have you seen a rhuematologist? What you are describing might well be Ehlers Danlos hypermobility.

[PFKAAde]

EDS / hypermobility was going through my mind also, but I too am not a doctor and find it hard to imagine a series of doctors would overlook something that us mere laypeople thought of straight away.

Do you know what you have been investigated for and what they have ruled out?

[Rukia99]

I don't have any problems with the bone structure in my hips - I had an x-Ray of them. Also, it shouldn't be a calcium or vitamin D deficiency as I've been on the vitamin supplements for about a year now. I think they tried to test me for Hypermobility but they didn't tell me what they were doing so I tensed when they tried to bend my wrist and they couldn't bend it so I think they took that as me being negative for it :/

[PFKAAde]

Ok, I'm afraid my knowledge of hypermobility is not that good, but idk if it would necessarily show up in x-ray. As far as I know it isn't the bone structure itself but rather the connective tissue that is to blame. Would that cause an effect that would show up in x-ray? I don't know. Also (and again I'm no expert) I think it can present in different ways with different people affected differently. So I'd be surprised if there was one simple check they could do, I'd imagine a specialist would have to investigate thoroughly before making a diagnosis.

Have a look at:

nhs.uk/conditions/joint-hyp...

Also, be careful when researching - none of us are doctors and we don't know your full history. It can be scary googling things, and more often than not what we find is not relevant to us. But you could do a bit of reading and see if it sounds familiar before your next doctor's appointment. At least then they can rule it out for you and you can move on.

All the best.

[Mary-intussuception]

Hi I'm not qualified and don't know about this but has anyone actually given you a diagnosis?

Other than x rays what investigations have you had? Have you had MRI scans ? Have you had DXA scan? Full blood tests?

Have you or your parents in the past ever applied for a copy of your hospital records?

Just some things for you to consider.

Also if the Consultant or any Doctor advises you to do anything that makes your pain worse then I would report this back immediately.

You have a right to ask for a diagnosis and a prognosis. They surely must keep searching, and help you achieve the best quality of life you can.

So sorry to hear that you are in so much pain.

Hope you get some answers and some more helpful care. Tell them at hospital everything you said here.

X Mary

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[Rukia99 in reply to Mary-intussuception]

Thank you and apart from the vitamin deficiencies and flat feet, both of which should have gotten better pain-wise with what they've given me, I haven't had a diagnosis. My parents said they'd take me to the doctors after my exams - they don't want to do it before because exams are so close and they don't want me missing school or having less time to revise. I haven't had an MRI or the other think but I've had a lot of full blood tests - they noticed I have a lot of deficiencies so I have one every 3-4 months. I've also had a scan on my kidneys and bladder but I don't think it was related.

[Mary-intussuception]

Just got your reply through.

I think you are a very brave woman.

You and your parents have been through so much these past 6 years.

Hope you do really well in your exams.

And after them hope you get some answers and help from the Medical profession that you need.

You deserve it.

All the best.

Love

Mary X

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