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Barney

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Don't know if anyone else has similar symptoms as my daughter. She has always had knee problems patella not sitting right and had spells of flu like illnesses all through secondary school. Also had for over two years on and off when she was younger what seemed like bladder infections but no infection showing. Since she started Uni in Sept symptoms of knee deep bone pain how she describes it had bilateral arthroscopy which has caused hips to rotate inwards and knees pretty useless and now only walk about 10 mins with stick and fears she will soon be in wheelchair. Have seen specialist who has said she has hyper mobility syndrome which makes no sense as she is very stiff and does not fit criteria. Her nurse at Uni has suggested may also be fibro which does seem to fit with symptoms. Does anyone else have similar symptoms or advice.
Would appreciate all comments as losing hope at minute.
 

Barney

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Sorry should have mentioned she's been checked for arthritis not had she doesn't sleep at night for pain in legs. Thanks for any thoughts you may have
 

twiztc

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Well I have been told that I have hypermobility in ninety percent of my joints. It was said it was a major factor in me developing Fibro as the joints move further than supposed to causing too much stress on the soft tissues. This I too found confusing because of the stiffness I constantly feel. Because the soft tissues are stressed it then causes inflammation around the damage and it's that inflammation that gives you the stiffness.
Hope that helps a bit.
 

1sweed

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I don't know anything about the hypermobility issue, in fact I never heard of it before. However, you might have her checked for Interstitial Cystitis, it behaves like bladder infection, but there is no infection, only inflamation of the inner bladder walls. It is very painful and makes sitting down uncomfortable. I was diagnosised with it in 2000. They have to go in through a tube and look at the bladder to diagnosis it.
 

mudrock

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Hypermobility is now considered a risk factor for developing Fibro by some experts.

If you are hypermobile as well, you do need to know this as specialist physiotherapy and expert advice is going to be needed for you to exercise in such a way that supports your joints, rather than straining them. Hypermobility is also likely to cause ongoing myofascial restrictions.
 

PegGinger

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Don't know if anyone else has similar symptoms as my daughter. She has always had knee problems patella not sitting right and had spells of flu like illnesses all through secondary school. Also had for over two years on and off when she was younger what seemed like bladder infections but no infection showing. Since she started Uni in Sept symptoms of knee deep bone pain how she describes it had bilateral arthroscopy which has caused hips to rotate inwards and knees pretty useless and now only walk about 10 mins with stick and fears she will soon be in wheelchair. Have seen specialist who has said she has hyper mobility syndrome which makes no sense as she is very stiff and does not fit criteria. Her nurse at Uni has suggested may also be fibro which does seem to fit with symptoms. Does anyone else have similar symptoms or advice.
Would appreciate all comments as losing hope at minute.

Hello,

You can have hypermobility and other issues/conditions/diseases. You do not state your daughter's age. My daughter has just been diagnosed by physical therapist who is very familiar and knows how to treat hypermobility. She is doing much better, now that she knows what it is and is doing the exercises (which do not hurt) to strengthen the muscles around the ligaments ( they are very loose with this condition, and there are usually numerous "trigger points" in the muscles that cause restriction and stiffness etc. I, after going to numerous neurologists, and other physical therapists, went to this woman because my daughter said mama I think you have what I have. and yes, I do, except have had for over 30 years longer than my daughter, so is going to take me much longer to get my body stronger. Because the exercises, which she keeps telling me " should NOT hurt" only may make muscles sore.. PAIN is NOT good, which is not what many physical therapists seem to believe. She also does "dry needling: which can help much better than manual massage and pressure to release the trigger points in the muscles. Only after these trigger points are released, can you truly make good progress. Otherwise, they are so tight and restrict movement (stiffness and pain) that it is difficult to do many things. Her name is Karen and is with Appalachian Physical Therapy in Pinehurst, NC, but she is booked for at least 2 months for new patients. She is THAT good! But, if you call the office, perhaps they can give you name of another, who "treats the whole body" not just one part, in your area. Dont give up! I was ready to before our doctor sent my daughter to Karen. At 54, I was feeling like in my 80s when it came to doing everyday things, walking up and down stairs, doing light household chores...sometimes just getting out of bed....so there is hope. And, she could also have IC, my daughter does also. But, apparently fibro patients (have that also--you can have both) can have "overactive bladder", which can mimic symptoms of bladder infection also. I may have IC, or I may have that, but I have issues with severe spasms sometimes with no infection, so I just get it checked and if negative, take the over the counter pain spasm medication and drink more water and try to calm the stress, since that can make it worse. And if it is IC, then cranberry juice or other acidic juices, sodas, etc will make the bladder symptoms much worse. So will any artificial sweeteners. Take care, and good luck to you and your daughter in finding what is causing her issues, and finding the "right" person(s) to help her.

Peggy
 

PegGinger

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I think through all that I typed, above I did not emphasize enough, that if you have had hypermobility for awhile, without treatment, or the correct treatments, the stiffness will come.....in the beginning your daughter probably did not have the stiffness, but since this has not been diagnosed until now, she would have the stiffness and limited mobility......due to not keeping the muscles conditioned and strong, and the trigger points that tighten and restrict the muscles. Also, my daughter had so many knots in her neck and back that I just knew that she had Fibro like myself, but she does not, just the hypermobility (not that its a "just"--but you know what I mean). But again, you can have both.


Peggy
 

twiztc

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I was diagnosed with hypermobility the very same day by the same doc that told me I had Fibro but I have never to this day (over ten years later) ever been given any kind of treatment for it. All my family doc said to me was "look on the bright side, when the arthritis really kicks in your joints will stop moving that far anyway"!
 

PegGinger

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What a horrible and extremely unprofessional thing to say! Granted, some people who have hyper-mobility have not damaged their muscles etc, and are not in pain or stiff from it.....but I think most are, so to say to just be happy etc........I would search for another doctor if it were me......There are Rheumatologists who can help, but again do your research, not all of them ,just like not all physical therapists etc KNOW what they are doing, and have no clue how to treat hyper-mobile patients.....Obviously, from what I typed above, my daughter has already gotten much better...and I am slowing getting there (again, I'm 54 and shes 23, so realistically, it will take my much longer to drastically improve, but already have some).Research and find a doctor, physical therapist who is knowledgeable and knows the correct treatments to help you get better. Best way is word of mouth, and research patient reviews, or check with the Mayo clinic, they should be able to refer you to someone in your area. I drive an hour to mine, but is worth it, and that is probably not much driving for most people. It is for me, but well worth it! IT is HORRIBLE for your body to over-extend when you have hyper-mobility syndrome. However, if you are "double-jointed", that is not the same thing, and you most likely not hurt yourself or do damage, but I am not positive about that., so wont say for certain.
Peggy
 
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