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Author Topic: Angry Sad Scared PLZ help  (Read 1977 times)

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Offline Femin3m

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Angry Sad Scared PLZ help
« on: August 29, 2003, 02:15:51 PM »
Hi to who everyone reads this,
most of you ppl all ready know what im about but none of me mofuggen doctors will help and i am doing my own research and every thing and i do every thing that the research and doctors tell me too but nothing helps im really fed up and really want the doctors to chop me legs off at the neck!!!!!!!!

the doctors say that there is nothing they can do where i live im going to Adel in Oct but right now there is nothing and NOW is when i need the help!!!!


Scared angry Sad and in PAIN
South austraila
I dislocate every thing and have had two operations one on each knee

Offline Shazinoz

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Re: Angry Sad Scared PLZ help
« Reply #1 on: August 31, 2003, 07:52:14 AM »
I see that you are and Aussie like me, I have a few suggestions that may help OK.
1. See you GP with someone you trust to back you up and DEMAND help and REFERRALS to a geneticist and genetic councellor and also to a rheumatologist and to a pain clinic OK all of these can be found at the public hospitals (especially bigger ones) and are covered or mostly covered by medicare.
2. See the Geneticist and Genetic councellors and DEMAND help from them, you will need to make up a genetic family tree and if you wish you can email me at [email protected] or IM me and I explain how this is done.
3. See the rheumatologist and DEMAND help, rheumy's are the specialists that we come under.
4. You REALLY need to see a pain management clinic to get adequate pain control and also other help (these are usually mulit-disiplinary grooups consisting of an anesthetist (he is the pain doctor etc), nurses, Psychologists, PT's and MORE.
You should also see a councellor or psycologist who deals with people with chronic pain and with dealing with having a LIFETIME genetic condition, it is a LOT to deal with and depression is VERY common in us as we have SO much to deal with and the pain gets us down (so PLEASE do NOT be afraid to tell someone if you are feeling down, blue, low, depressed or worst case suicidal (PLEASE PROMISE ME THIS OK). These doctors are used to dealing with people like us HMS'ers and can offer help and medications to help combat these feelings as our pain can alter our body and brain chemistry and cause these things, and remember you are NOT in pain because you are blue or depressed you are blue or depressed beacuse of the pain.
Is there a KIDS hospital in Adelaide??? can you contact them by letter/ phone or email and see who they can recommend in your are to help with diagnosis, management and pain control as well as with dealing with the feelings that HMS throws at us. You could either see someone in Adelaide if you are not to far form there or see someone locally at the hospital.

PLEASE feel free to contact me anytime and remember YOU ARE NOT ALONE, YOU ARE NOT CRAZY, and YOU ARE IN PAIN......
Your friend
Sharon :-*
2 ACL 'reco's', 3 'scopes', Pain, JRA, EDS, RSD, CMP, osetochondral defect & #, synovitis, adhesions, nerve damage, foot drop, MCL damage, tendonitis, fibrosis, ligament damage AGAIN, dislocations +++


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Re: Angry Sad Scared PLZ help
« Reply #2 on: August 31, 2003, 10:29:13 PM »
Hi Kristy,

Welcome to the Odd Bods Darl, I'm sorry you have to be here but I promise you that you'll get a lot of help, advice and support from us, and be assured that you are most definitely not alone here. We care Sweetie and we're going to help you find other people who care too, because we've all been exactly where you are right now too.

Sharon has already highlighted most of the important staring points in getting help with this - seeing your GP and getting referrals to both a geneticist and a Rheumy will help you to get a proper diagnosis for your pain and hypermobility, which is always a good step. Getting into a good pain management clinic is an excellent idea too. It's vitally important to get the care of specialists who understand your condition especially seeing as you are so young. Your age is definitely on your side as if you see the right people now, they may be able to get you into a pain management routine and PT regime that will help your future outlook incredibly. They may be able to help you control the hypermobility, retrain your muscles to compensate for the laxity of your ligaments and therefore reduce the damage you do to your joints. It might not be easy getting the help you need, most of here have had to battle very hard to get where we are now and some of us are still battling, but keep fighting whatever happens - it's your body after all not theirs!

As Sharon has already mentioned, don't be afraid to be scared, down or fed-up, again your not alone in these feelings as chronic pain and coping with the consequences of it can be very depressing. But there is help, you always have us to talk to and seeing a counsellor is an excellent idea and not a sign that your a failure, need help or are cracking up as so many people automatically think - it's merely a sign that you are strong enough to accept and ask for help in managing mentally as well as physically. Staying well emotionally is as important as staying well physically and it can directly effect the way your pain is too.

Hang in there Kristy and remember you're not alone. Do some research locally and talk to your local health authorities and advice bureaus about seeing specialists that might help you, such as a Rheumy and Geneticist. I have a few links for organisations in Australia that might be helpful to you that I will dig out and send to you, and I dare say Sharon will be able to offer you more advice on what's available to you over there too. Take care Darl and know I'm thinking of you and always around if you want to talk about anything.  :)

Love and hugs....Jo