HELP! Hip/knee pain (+ other symptoms)

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I recently posted on here about my 14 year old daughter, she has been suffering from pains in her hips and knees for a few months now. Some days the pain doesn't bother her, other days she can hardly move! There is no pattern to when/why the pain occurs, she constantly limps (even on days when she doesn't really have any pain) Her leg also seems to go into spasm leaving her stuck to the spot for a few minutes. The pains started in her left side, but soon started to affect the right side (way worse than the left side) Her right hip bone also seems to jut out further than the left. We have seen 2 doctors, the first said it was growing pains, the second sent her straight to hospital for x-rays which came back normal. It seems to be getting worse, she used to struggle through the pain and get on with everything (this has always been in her nature) but it is now having more of an affect on her day to day life. She can hardly ever go out with friends, has had to take a letter to her school as she can't cope with P.E anymore, and has been unable to take part in her dance classes. She did try at her dance class on Monday as she said her hips and knees felt ok, but her teacher ended up pulling her out. I was there and it was painful to watch her! Every move seemed to be such a struggle for her! Even lifting her arms and everything! She just looked knackered! A few of the other Mums were also commenting on how she looked! Anyway, since her last appointment, we have noticed a few other little things, she has developed 2 strange roundish indentations on her legs, one on the side of her left thigh, and one on the front of her right thigh. She gets no pain if I press on them, but it feels strange! Very soft, as if there is no muscle behind them. The muscle (well.....I THINK its the muscle) on the bottom left hand side of her back also seems to be bulging out. She has also complained a couple of times about discomfort in her chest (she said right from her shoulders to the top of her tummy) and is getting puffed out more easily than she normally would. Everything just seems so much of an effort for her. Anyone got any ideas or advice????? Its stressing me! I called for another appointment to see the doctor, but they can't fit her in for another week.

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  • Posted

    PS. She is very thin and quite tall (don't know if this makes any difference to anything, but thought I would point it out just incase) She is sometimes kept awake at night from the pains, and her right leg seems to turn inwards. This turning inwards of the leg seems more prominent when the pain is bad.
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    • Posted

      Hi there,

      is your daughter very bendy. Look up hypermobility or Ehlers Danlos Syndrome. This can cause joint pain and dizziness (POTS) amongst other problems. 

      If you need more advice please contact me. Marfans syndrome is closely linked especially as she is tall. If bendy more likely EDS.

      would be great to hear how she is doing. I specially registered to answer your post. 

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  • Posted

    Mention Guillain-Barré Syndrome to your doctor, it affects the nerves of the limbs and body and is usually triggered by an infection. I have neuropathy which was triggered by an old spinal injury. I am not in any way medically qualified, but I would suggest that your daughter should be referred to a neurologist. I pray that she finds the help that she needs.
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  • Posted

    Oh, your poor daughter! It just seems all so unfair when you have to watch your child in pain. I hope your GP will be able to diagnose her at your next appointment. Otherwise, I think you should insist on seeing a specialist!

    Best wishes

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  • Posted

    Thanks smile Appointment is on Tuesday, hoping we get somewhere! Its sad to watch a previously very fit 14 year old struggling about like a crippled OAP!
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  • Posted

    I hope that you get a good doctor. Don't forget to mention Guillain-Barré Syndrome to your doctor at the very

    least it will point him in another direction and make him think. Give your daughter our kind regards and thoughts. Good Luck.

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  • Posted

    Well! Saw a new doctor with her today! Came out fuming! According to him, my daughters symptoms are all perfectly normal because "she is very tall"! He didn't even examine her in anyway! My daughter has always loved her food, and could eat you out of house and home (yet remains surprisingly slim! so unfair! :p) told him she was finding it hard to eat because it was causing tummy pain, to which the doctor turned to me and said " she is probably making that up to avoid eating because she is scared of getting fat"! I could have slapped him! Even my daughter was like "I love my food and couldn't care less about putting on weight"! I did manage to convince him to give her blood tests (which he agreed to to check for anemia) so we are back on Thursday morning to have bloods done. Doctor said if bloods come back normal we should "just leave her to get on with it"
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    • Posted

      Why are you forget to mention Guillain-Barré to the DOCTORS I don't u Der stand it some mentioned this to me I would have asked the DOCTORS to see if this could be it you are wasting time especially when he doesn't every touch her or xray her or even say let's do an ultrasound I think you need a new doctor so that your daughter can get some answers don't you think. I wish your daughter lost of luck and you too please look for a new doctor if this one is really not helping please and thank you for reading this.....??

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  • Posted

    All I can say is that pain is not normal, it's a symptom of something even if it's psychological. We can only trust in the doctor's judgement. Good luck anyway.
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  • Posted

    Viatro is right, pain is not normal. From what you have written, your daughter really must be suffering. I think you should get a second even third opinion immediately!

    Even if it is psychological, the doctor should diagnosis it, so your daughter can be treated accordingly. Not just to 'get on with it'! If the doctor suspected an eating disorder, surely it should be diagnosed too.

    At least you got some blood work done. Let hope you get an answer once the results are in.

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  • Posted

    Hello,

    Sorry to hear about your daughter. I recently starting getting Pain in my groin area and upper thigh. It started off feeling like a pulled muscle. But then got worse and worse to the point that I developed a limp. And it became very painful to walk. My foot started to curve in and I was getting alot of muscle spasms in my right leg. It became very stiff and to painful lift my leg up. I finally went to the doctor and was diagnosed with AVASCULAR NECORSIS. I did alot of research on it and it is possible your Daughter may have this. It happens to alot of young people. I am 30 but it ranges from 13-40 year olds. It can affect your HIP'S, KNEE's, SHOULDERS, ANKELS. It's mostly in Hips and knees though. In early stages a X-Ray cannot detect it but a MRI Can. Ask your doctor to order a MRI. I will keep your daughter in my prayers. If you would like anymore info about AVN just let me know

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    • Posted

      That's sounds like maybe it could be please ask for the MRI with that I know that if there is anything they will find it there. Your awesome Marie.

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  • Posted

    Thanks for your reply. Any advice on what could be my daughters problem is appreciated as I dont seem to be getting anywhere with doctors! My daughters symptoms continue with this knee/hip pain which continues to come and go, but also another list of symptoms. I have no idea if the symptoms are connected?

    the list goes:

    Hip and knee pain (one sided, comes and goes)

    Back pain (mild, but constant)

    Pain along right collar bone (comes occasionally, sharp pain, makes her have to stop what she is doing, sit down and hold the area)

    Chest pain (moderate, occasional)

    Upper arm pain (one sided, occasional, dull ache, tender to touch)

    Breathlessness (persistent, she used to be very fit, and done long distance running, dance classes etc, now just walking upstairs leaves her completely puffed out)

    Headaches (frequently)

    Dizziness (frequently)

    Shivering cold (frequently, although she feels really hot to touch)

    Occasional bleeding gums, and the gums round her lower teeth seem to be receding.

    Petechiae rash on feet and ankles (persistent, somedays it looks faint, other days its very noticable) also a couple further up her legs.

    What seems to be dents in her thigh muscles (looks like sunken craters, one on each thigh, but not in the same place on each thigh)

    Her torso has become "pushed" to one side. Her spine looks perfectly straight, but if you look at her waist, its clearly pushed to one side, if I try to "straighten" her up, a huge bulge comes out on the lower side of her back, and her ribs on the front also bulge out.

    Sorry for the long list, but I thought I would list EVERYTHING just to see if anyone can make anything of them! My doctor agreed to test her for Anemia as she has been anemic in the past. 6 days after the test I got a call from doc's receptionist to say there was a prescription for iron for her and that was it.

    I know a lot of her symptoms can be caused by the anemia.

    She has been on the iron supplements for 2 weeks (still no improvement in symptoms, infact. the dizziness, headaches, breathlessness continue to become more frequent) I have no idea how long iron supplements take to kick in?

    Its really stressing me out, mainly because I am looking at my daughter thinking "something is NOT right" Yet doc's are just telling me its apparently "normal"!

    Some days, she seems not to bad, almost her "old self"! Then the next day she is just "ill"! She will look awful, be burning up and will just and just spend the day lying on the sofa.

    Her school has commented on the fact this is about the first time she has not received a perfect attendance certificate! She is normally NEVER off school! She loves school, and hates staying off (strange child rolleyes) but she had had to have so much time off recently.

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