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View Full Version : cronic pain and endless questions. need some one to talk to



caryak
02-04-2011, 03:05 AM
so I am new here. I was diagnose in June and have gotten worse since then. I am told my condition is cronic and my doctors are trying to get things under control.
Can anyone tell me if what I am experiencing is a normal progression. Can the doctors get this under control, or by cronic am I fighting a loosing battle.
I am so scarred and I have no one to talk to. My only family is my 16yr. old son. and I need to find him some one to talk with to. He is showing signs of depression.

kim,l
02-04-2011, 03:58 AM
hello caryak we have chatted but this my official welcome to you from whl i am sorry you are so scared i wish i could hug you now and tell you thing will be alright please do not give up you now have us to talk to and i will talk to you anytime you need me as i said message me anytime we know what you are going through and maybe we can answer your questions or just be your safe place. to vent your frustration hugs kim l

debbie-b
02-04-2011, 04:50 AM
Hi caryak,

Welcome to WHL. From now on, come and talk to us, instead of your son. He can only listen, we listen and understand, we can also give you advise.
You can come here to vent or talk, somebody is always here to listen.
We all know, how frustrating all this is, especially in the beginning. But I promise things will get better.
So my dear, if you have questions or concerns, ask away. We might be able to answer your questions.

Debbie

Peridot_Gem
02-04-2011, 06:11 AM
so I am new here. I was diagnose in June and have gotten worse since then. I am told my condition is cronic and my doctors are trying to get things under control.
Can anyone tell me if what I am experiencing is a normal progression. Can the doctors get this under control, or by cronic am I fighting a loosing battle.
I am so scarred and I have no one to talk to. My only family is my 16yr. old son. and I need to find him some one to talk with to. He is showing signs of depression.Hello caryak,
Welcome to our lovely family of the WHL and there's so many threads to help you to learn the condition and what we're suffering but in due course so many member's will answer you.

I do know here in the UK they give councilling to people and family who need help to cope and find out more but it's according to where you live.

Like yourself i'm finding it hard but it was'nt till last year i was diagnosed after years of ailments connected to the disease and then was told i was born with it but i'm not on medication so far but hopefully come next week if my eye test i've had to have before starting plaquenil is'nt to bad i'll be starting it.

I've read and heard the medication puts a control on it but to what limits i don't know but you have foggy brain with it/depression/joint pain/muscle spams/DVT can occur/epilepsey can occur/ arthristis/ there's just so much to it. At the moment mines progressing quickly and i've been taking paracetamol to help the pain but you need to be under a good Rheumatologist for help.

Hugs to you Terri xxxx

tgal
02-04-2011, 09:29 AM
I want to welcome you to WHL. I am so sorry that you have been diagnosed with this disease but you have found a great place with wonderful people that will be here for you whenever you need us. I too have a 16 year old and I know that they want to help but this is a bit much for them so, as was said above, come here when you need to talk. It is what we are here for.

Now on to your question. Lupus is a strange disease and it is different for all of us. It is not a death sentence anymore and there are many people in here that have gone through months and years in a period of complete or partial remission. It doesn't have to always be as bad as it is now but it does take them awhile to find the right meds and the right doses of those meds. I know it is hard but always remember that stress makes the flares worse. You are now a part of our WHL family and we will always be here to help

Angel Oliver
02-04-2011, 12:08 PM
Welcome to this forum,the best place for any questions with very caring understable n knowledgeabe members.Look at the ''stickys''which are also full of answers you may have..Im sorry you are so scared,but once you start chatting and reading and learning more,it wil not seem as frightening.We will support you.Hang in there.
lots of gentle hugs
Amanda.xxxx

magistramarla
02-05-2011, 09:46 PM
Hi Caryak,
Welcome to WHL. Read through the threads here, learn all you can, and ask lots of questions. We've all been through it, and we don't mind if you need to vent.
Hugs,
Marla

~LUVMYFLOWERS~
02-07-2011, 04:45 AM
Hi Caryak, And welcome to WHL. There are lot's of wonderful ,careing and supportive people
here, and lot's of great information! I too finaly got my official dx several months ago
after 7 yr's of neurologist, rumatologist, test & other dr's. And my rummy told me mine
was also cronic by the time i finaly got my dx and had gone to my brain and progressing verry fast.
So my dr's are also giveing me some pretty strong med's to try and slow it down a bit and get it under control. And i was like you also scared, But please dont give up yet!
Sometimes it takes the med's a while to start working, or for your doctors to get you on what's right for your situation to help you feel better.
Lot's of Hug's to you!!!!!!!!!!!!!!!!!!!!! Diane,

Peridot_Gem
02-07-2011, 10:27 AM
Hello Caryak,
Just asking how you've been since you joined and i really hope your not suffering to much.

Hugs Terri xxx