PDA

View Full Version : Newbie



GingerOsborn
04-30-2012, 08:42 PM
Hi I'm 21 I was diagnosed with Lupus almost two months ago I am waiting on my referral right now. Recently I have been having a serious leg pain like my entire femur...from hip to knee in the bone really worried. Also constant itching!

Lupus Sjogrens Psoriasis Celiac.
My mom has Fibro Auto immune hepatitis Sjogrens RA....
Thanks for reading any input will help
Ginger

tgal
04-30-2012, 09:23 PM
First let me welcome you to WHL. We are so glad that you are here and we are even more glad that you are on your way to a specialist. The aches and pains of the disease should start to get better once you get started on the
meds. We are here for you as you travel down this path and will be glad to help as much as we can

magistramarla
04-30-2012, 09:23 PM
Hi Ginger,
Welcome to WHL. You have some of the same overlap diseases that I have. Mine are Lupus, Sjogren's, RA and Psoriasis.
I used to have lots of itching, but I've been on Plaquenil for three years, and was on MTX for a while. That seems to have solved many of my skin issues.
I also deal with lots of leg pain. I've had surgery for Avascular Necrosis. The Plaquenil seems to have helped my joint pain quite a bit.
My biggest complaint is muscle pain and spasms. No one seems to know if it is a part of having Sjogren's or if it could be Spastic Paraplegia.

I hope that you are able to get some answers. Keep in touch and let us know what you find out.
Hugs,
Marla

kim,l
04-30-2012, 10:24 PM
hi ginger and welcome to whl family.

GingerOsborn
05-02-2012, 10:01 PM
Thank you all so much! I got the call today saying I can make an appointment with the specialist I also have two apps tomorrow so ill let you know what happens supposed to be discussing my chronic anemia chronic vertigo and the bone pain...she mentioned a sleep study last time. I'm so blessed to have found such an open doc who listens

diane 50
05-02-2012, 11:02 PM
Hi Ginger. Welcome to WHL I also been having the leg pain and skin cond. And alot of what you and others are going thru, I hope they get you started on the meds so you can feel better. I am also newly diagnosed about a week ago or so. I just started the meds and everyone here seems so nice and very helpful. We will learn a lot about Lupus. I hope you feel better soon.

rob
05-03-2012, 04:59 AM
Thank you all so much! I got the call today saying I can make an appointment with the specialist I also have two apps tomorrow so ill let you know what happens supposed to be discussing my chronic anemia chronic vertigo and the bone pain...she mentioned a sleep study last time. I'm so blessed to have found such an open doc who listens

Welcome to WHL,

That's great news. Finding a good Doc or Rhemo can be a difficult task.

About the bone pain and itching, I was diagnosed with SLE in 2004, and although I manage my symptoms and flares fairly well, I still get those two things. The bone pain is like a burning almost, as is the itch. It's like the itch starts underneath my skin, and usually happens on my legs. I find a cold washcloth layed on the itchy area helps with the burn and keeps me from scratching more, making it worse.

Hang in there. You'll get your symptoms under control with the proper meds, lifestyle changes, and with time.

Rob

Tammy1962
05-03-2012, 05:52 AM
Ginger, Welcome to the forum. I am a newbie to the forum, but not to SLE Lupus/autoimmune issues. I have never been able to articulate the leg (and feet) pain/itch into words well. I seem to experience this issue more at night. Generic aspercreme--I like the cream version over the lotion--settles the pain/itch down enough that I can fall asleep. If that fails, I take two extra strength generic tylenol.

Best of luck!

Saysusie
05-03-2012, 11:40 PM
I just wanted to also take a moment to welcome you. You have been given some good advice and you are very lucky to have doctors who listen to you and who are primarily concerned with helping you feel better.
As you can see, many of us have also suffered with the symptoms that you've described and different treatments worked for us. Hopefully, you and your doctors will find a treatment that works for you.
Again....welcome and we are here to help you as much as we can.

Peace and Blessings
Namaste
Saysusie

BonusMom
05-04-2012, 05:48 AM
Welcome Ginger-

I can't relate to the bone pain, but I have had itchy hands that make me want to dig the palms out. I don't know if it's SLE related, but it gets painful.

Sorry you've had the need to find us, but you're in great company!

GingerOsborn
05-04-2012, 10:35 PM
Thank you all! I scheduled my rheumy appt for the 17th! I had to reschedule my pcp appt for Tuesday. Here is a good laugh tho....my grandmother my mother and I have the same rheumy. Not by choice by referral haha we all have different pcp's tho :) I thought it was hilarious I def needed that laugh!

magistramarla
05-05-2012, 02:53 PM
Ginger,
Good! Hopefully, that rheumy is a good one and can make the family connections.
Hugs,
Marla

Saysusie
05-06-2012, 06:38 PM
This might be a good thing that you all have the same rheumatologist....Hopefully he will be one who takes familial connections into consideration!
Oh snap..I just noticed that Marla said the same thing LOL

Peace and Blessings
Namaste
Saysusie

magistramarla
05-06-2012, 08:19 PM
LOL - Great minds think alike!

tripLexie
05-09-2012, 06:53 AM
Welcome welcome welcome to WHL!!! I am 20, turning the big ole' 21 in August. I am in the middle of diagnosis right now, but they are leaning towards Mixed Connective Tissue Disease- basically it when all the AI diseases overlap. Mine (probably) includes Lupus, Scleroderma and dermamyositis. I feel your pain, being so young and dealing with the diagnosis process of the disease. Feel free to private message me anytime!!!

Lexie

GingerOsborn
05-19-2012, 05:34 PM
Thanks everyone for the welcomes and comments! I saw my rhuemy for the first time on the 17th. He was pretty great! I have for sure chronic fatiuge and chronic pain syndrome...he is redo-ing all my labs (18 viles worth!) Since he didn't diagnose me he wants to be sure! Which is frustrating but also reassuring because he is not going to just throw me on life changing drugs. He also mentioned to keep my options open treatment wise I'm going to try and add the pics!

GingerOsborn
05-19-2012, 05:43 PM
4754 4754 Ok I think I did it I'm on my phone its kind of tricky!

tgal
05-19-2012, 06:52 PM
LOL - Great minds think alike!




LOL That is what I was going to say!