By h reinstadtler on Wednesday, October 11, 2000 - 08:50 am:

I am 25 year old female who had a left patella realignment after reaccuring patella dislocation. This surgery took place when i was 21 having spent years of visiting physios and taking ibuprofen for what i was told was growing pains. I first had pains in my joints when i was 8 or 9 in the hip and groin area when orphapedic surgeons could find nothing wrong on x-rays i was left to suffer the pain. I am very worried about the pain that i now get in ankle knee hip and back joints I am currently waiting to see a back surgeon and am now taking 50mg voltarol and paracetomol to ease the pain three times a day. It is bad at night and when the weather is damp. My physio says he has never seen such loose joints and It is getting very depressing Should I be feeling this pain at my age and is iy going to get worse. My sister has knee problems but none of our parents do

By Patrina on Thursday, October 12, 2000 - 10:15 pm:

I had my first surgery at age 22. With hypermobility, yes, I'd expect pain. It isn't normal, but our joints aren't normal!

You may find some worsening of the pain as you mature (I'm almost 42, female, and prefer that to the word 'age'). But it's gonna partly depend on what you do to make life as easy as possible on your joints. You want your muscles to be as strong as possible; it makes less work for the joints.

Has anyone diagnosed the pain as osteoarthritis (post-injury)? Probably that's what it is, and that would be secondary to the primary problem which is the hypermobility.

You do want to take this seriously & pursue good care. See about taping or bracing joints to add stability (may vary according to activity). A rheumatologist may be a good doctor to handle this. They're knowledgable about the condition & can advise you about what to do & not to do.

I've had primarily knee problems since I was 6 or 7 years old. My sister also has the same problems, but they didn't appear in her until a later age than with me. My parents didn't have knee problems, either (or at least, not severe). One of my sister's kids has the knee problems, and her nearly-two-year-old daughter has extremely loose joints so they're keeping an eye on her.

One other thing: you should probably be on one of the modern anti-inflammatory medications. It helps some with the pain. You should probably also have a prescription for a pain med other than ibuprofen. That's hard on the system with long-term use, and you certainly have legitimate pain. If your doctor (again I recommend a rheumatologist) won't prescribe something (& you may have to try a few to see what works best for you), then you find another doctor.

What you have is very real, and you're entitled to doctors who understand & take it seriously!

Keep us posted, okay? I'm always glad to be a cheering section, and answer any questions I know the answer to (and usually a few more, in parentheses!). Take care.

By Lin on Thursday, October 19, 2000 - 04:35 am:

hi, i also have very loose joints, but have never been, diagnosed, with hypermobility, but boy am i hypermobile. i was recently diagnosed with chondromalacia patella after having my knee cap dislocate many many times (every 2 weeks or so) just while walking, and this time i was in excruciating pain, i wasnt usualy. i am only 15, female. i was told to take ibuprofin 3 times daily for pain, and i am trying to get into my doctors office to find out if i need physical therapy to strengthen the ligaments so it doesnt happen again.. what i was wondering, since i seem to have the same problems, is all of this what i might expect to live when i get older? with osteoarthritis and everything? because i am an extremely active person.......... thanks for any help!

By Karen on Monday, December 31, 2001 - 03:46 am:

I was diagnosed with Chondromalacia patella at 8 yrs old, and then was told that the pain in my hip and lower back, plus the continuous straining of other muscles, was due to general growing pains. I am now 28yrs old and have to walk with a stick, cannot go to the toilet on my own at night and need help for simple things. My knee gives way whenever it feels like it and I have constant pain. I am on the waiting list for surgery to release the tendons at the side of the patella on both knees and have only recently been diagnosed as having hypermobility syndrome.
I get very depressed with this as having two young children I can't get out to do as much as I would like to do with them.
Any support/advice would be greatly appreciated.

By Lin on Thursday, February 21, 2002 - 10:28 am:

hi karen, wow. A lot has happened to me since my previous post up there, i have been diagnosed with HMS and EDS. along with left internal hip rotation, and many other problems such as scoliosis. most of all, what has shocked me is the progression of this disease so fast. 2 years ago, i was in slight constant pain, and every now and then some pain and dislocations and subluxations. i now get them daily, and i am in pretty bad constant pain. worse of all is the stiffness and overall soreness. I am not supposed to have trouble standing up from the couch at the age of 16!! my joints often give away from me. just yesterday i fell over in class, yes i fell completely over. i was waiting in line to talk to my chemistry teacher about my chem test and i was shifting weight from foot to foot when my right ankle gave way and i fell down. quite embarrasing. I dont realy have any advice since i dont know how to deal with this myself, but i am here to offer support!

By Karen on Friday, May 10, 2002 - 11:14 am:

Hi, Lin. I know how you feel, I now have constant pain in fingers on my left hand due to the condition, and yes you've guessed it I'm left handed! I also have to go in a wheel-chair if going any distance. The doctor has given me some new anti-inflammatories which seem to help a little bit (Celebrax) they don't upset the stomach either. Keep in touch.

By Lin on Wednesday, May 22, 2002 - 07:56 pm:

oh i tried Celebrex, it helped but then my insurance refused to cover it, so I switched to Vioxx, both of which are Cox2 enzyme inhibitors. I am having a particularly bad day today... all over pain and just want to sleep.
Lin

By suzanne on Thursday, December 12, 2002 - 06:08 am:

Hi I am a 15 year old girl from Aberdeen,i am currently waiting for my apointment to come in to see Pro Grahmae in london. I am on 13 tablets per day - including paracentamal, celebrex, tramadol and amtripyline. I feel sore every minute of every day does anybody feel the same.

By Rosie on Thursday, December 12, 2002 - 09:07 am:

hi I feel like that most days suzanne but sometimes I have good days too where I don't hurt much and I'm all nmobile and stuff. I hope you have good days to. HOw did you get an apponitment to see Prof Grahame. I am meant to take 12-16 ibuprofen and 8 paracetamol a day. but I dont bother cos itdoesnt help at all. Do your tablets help. How are you finding school?doo you ahve physio

write back and or email me on crana@ntlworld.com

Rosie

By Shazinoz on Thursday, December 12, 2002 - 01:58 pm:

Hey one and all my Doc,
Gave me a way of making my own anti-inflammatory, pain cream which is supposed to be like 5-10 times stronger than anything you can buy over the counter, and you make it yourself so it is cheaper. If anyone wants to know what it is etc then just let me know. I am hoping to get the active ingredients today so I can make my 1st batch (I feel like a little chemist/ pharmacist ).
I don't know if there are any rules against posting this sort of thing here, but unless I am told differently I will post it, if anyone is interested, as anything that works better and cheaper has to be good. (you do need a prescription for the active ingredient and the rest you can get even in a supermarket (there are only 2 real ingredients) and even better it can't hurt you tummy as it is absorbed through the skin. I have read they even use this dug on horses etc, so I guess it works as the placebo effect doesn't work on animals.
So just post and I will post the name of the medication in it and how to make it.
Good Luck all, Merry Christmas and Pain Free Days and Nights to all :D

By Rosie on Friday, December 13, 2002 - 06:50 am:

Hi

I'd be interested to know. Not sure if I would be able to get a prescripton for that ingredient. But hey its good to know.

Rosie

By Rosie on Friday, December 13, 2002 - 06:52 am:

Hi

I'd be interested to know. Not sure if I would be able to get a prescripton for that ingredient. But hey its good to know.

Rosie

By shazinoz on Friday, December 13, 2002 - 06:58 am:

Ok HEre goes,
The medication you need is
Orudis SR (Slow release) 200mg
(they come in a box of 28 capsules)
and what you do is take 5 capsules and grind them to a powder in a coffee gringer, motar and pestle or blender etc and add the powder to a 200g tub (average size tub) of Sorboline moisturising cream. Let stand for 24 hours and start using. (should last ages by the sounds of it and you would get like 5 x 200g tubs of cream (which is like 1kg (2.2 pounds I think)) out of 1 prescription of capsules with 3 capules left over.
I am not sure yet what the prescription costs yet here in Oz but I should find out ASAP (probably Monday) But my GP says this is the best and strongest pain killing and anti inflammatory cream you can get. Here is hoping.
And Good luck geting the 'script' for the capsules.