New to the group

[Yvette]

Hi all,
My name is Yvette, I have just been diagnosed with undifferentiated connective tissue disease. I first got sick at the age of 33 and I am now 49. It has been many difficult years and many odd diagnosises that were not correct. Jan08 I had my thyroid removed due to cancer. I had a radioactive iodine treatment and I had a bad reaction to it. My hands swelled so bad and my right elbow as well. My husband had to cut off my wedding band..(many tears over that). Anyway after that my doc checked my antibodies again because I have never felt well since
my results were positive ANA, positive sm RNP, positive RNP, positive double stranded DNA, below normal white count and below normal Ast SGOT (liver)...I see a specialist on 11/2/09. I am hoping for relief but a little nervous about plaquenil or methotrexate. I just feel very depressed right now because I am in pain every day of my life. i am hoping to learn here how meds help people and how people learn to cope. In a weird way I was strangely happy to get a diagnosis. This however has me more worried than thyroid cancer.

[Angela]

Hi Yvette.

I can understand your worry. We have all been there--and I find myself still worrying some 4 months later. I also have the positive ana, sm, rnp, sm/rnp (don't know the difference, but different test there) but without the positive dna. Docsays is probably because I have the positive sm. I was diagnosed with mixed connective tissue disease. I am currently only on plaq, but will probably get the methotrexate come December since the arthritis pain is getting worse. I was very worried about the plaq at first-- even cried once I read the side effects, but those are rare and mainly in those who took very high doses for malaria. other than just a bit of upset stomach when first taking it, I have had no problems with it. I had hypothyroidism and was hoping that was the cause of all my problems, but nope. I have 5 children - oldest 15 , youngest 8 and plan on doing as much as I can with them for as long as I can. I am still working full time and going to school to get my RN. It is challenging- every day. Sometimes I still get very depressed and terrified of what the future holds, esp. when I google too much, but thankkul for wonderful sites to help me get my head back on straight. I am glad you have joined us as there is great infomation here and we are happy to answer any questions you may have. Hugs to you-- Angela

[Yvette]

Angela, it's funny that you say you "google" too much because I am always getting accused of that here! It is hard not to look at the worse case scenarios and freak out a bit. I am learning to relax more because as they say, "it is what it is" and making it more in our minds is no good for our stress level. I can't believe you have 5 kids!! That's great! I have 4 but they are big now, ages 28, 26, 24 and 20. The last two still live at home. I do have grandbabies though, Mark age 2 1/2, and Layla age 9 months. I try to store up energy to spend an afternoon each weekend with them! It takes me days to get my house back in order but it sure is worth it! I forgot how I used to juggle little ones though. I hope it's like riding a bike! Take care of yourself and thank-you for the warm welcome, Yvette

[Kathy]

Bless your heart Yvette!
I sure can feel for you.
Yes I was HAPPY when I finally had a name to why I had been so sick for so many years.
My Drs concentrated on XRays for my pain (always "witin limits") as if that tells me anything.
Then they would concentrate with my migraines and fatigue that's it's hormone related so off to OB/GYN I would go and be treated for PMS!
year after year...

I mean towards the end Yvette, I would leave ever darn appointment disappointed and crying. Walking with my husband out to the parking lot he'd have an arm around me telling me to heck with those Drs. he'll take me elsewhere for help.
Changing Drs was the biggest and greatest thing I did right after my diagnosis.
Because I had that Dr since I was 16 years old and here I was 44 yrs at the time (Now I'm pushing 51)

If someone new or undiagnosed is reading this, being persist is a good tip to help you. Never let the appointments get you down when they say all tests come back *within normal limits* or XRays showed no inflammation, etc..
It will take the right blood tests at the right time to get your positive ANA tests along with your symptoms and the best Dr you can get that you are comfortable with that has a good communication with you to recieve the best care.

Remember the Drs work for you.. your insurance pays their wages! *FIRE HIM if you are not satisfied with how your care is going.

For your pain Yvette, if you can, fill up a bathtub and soak if its your back, hips or knees hurting.
For arms and elbows & hands I fill up my kitchen sink, pull up a chair and move my hands around in the warm water. It does help, along with Aleve or whatever NSAID I take.
If heat doesn't help, then try cold or vica versa.

Pain can be controlled with the help of steroids and methotrexate I know the side effects are scary, but with anything we put in our bodies there is always a side effect. Just be careful, say some prayers and let it work in your system.
It does take time for those meds to work on you.
So don't expect immediate relief.
I have not taken them but others have, if I can get you information, just say the word.

Glad you are here,
Keep us posted.
Have a better day in the morning....
We understand what you are going through!
Kathy

[myjoy520]

WELL HELLO YVETTE I AM TESA AN I COUPE WITH IT BY PRAYER AND TALKING TO MY LOOP FREINDS
THATS HOW I COUPE WITH IT I HAVE HAD LUPUS EVERY SINCE I WAS 13 AN I AM NOW 40 IT WAS HARD FOR ME AT FIRST BUT AS I GOT OLDER I LEARN TO TURN THE PAIN INTO SMILES AND THAT GOT ME THROUGH THAT BUT I AM ALL WAYS IN PAIN BUT WHEN THE PAIN GETS TO BAD I HESAD TO THE ER ASP. BUT I HOPE YOU ARE FEELING OK TODAY STAY BLESSED AN NO THAT GOD LOVES YOU AN SO DO I :)

[Bevi]

Yvette,
I have MCTD. I take plaquenil and methotrexate. My dxs was a fluke. I insisted my doctor do something to help me with pain. She did not do pain managment. So she sent me to a rheumy. He dxs me with fibromyalgia and decided to take bloodwork to check for Lupus or RA. It came back positive. So here i am. It was a huge relief to know why I felt the way I did. I have only two pieces of advise. 1) Consider your doctors very carefully. Because you are putting your life in their hands. Literally. 2) Search inside for your inner peace. Do not expect family and friends to understand when you are having a hard time understanding yourself. If you know your life is headed in a train wreck then put yourself in the drivers seat and take control. I changed my doctor from one that i had seen for about 15 years to one that actually did pain management. No one needs a doctor that will not cover all your symptoms. Its not quantity of life anymore for us. Its now just quality. Dont have regrets and dont leave anything unsaid.
I wish you relief and peace. Bevi

[Yvette]

Bevi,
I love your philosophy on life and do agree with quality over quantity. It is difficult not knowing what the heck is going on inside my body. I am not going to start on meds until my local doctor is absolutely sure. I have terrible back pain with scoliosis due to degenerative disks and cervical spondylosis in my neck. I never take pain meds because my system can't handle them. I am doing alot of my own stretching and gentle walking for exercize. I am taking one day at a time. Isn't that what we all do? Nice to meet you and I am glad to hear your positive take. It is uplifting for us all. Yvette :)

[Bevi]

Yvette,
Wow - you have a triple whammy. I do not take my pain meds until i just have too. To not be able to take them at all. My heart goes out to you. I try to stay positive even though i have days when im not. When you have so much wrong you either laugh or cry. I guess i am to the point that i have shed enough tears. I have very high inflammation thats why i take the chemo. I know this disease will probably be what takes my life. Even though i still have some... I have dealt with the anger, grief and frustration of being sick. When you get past all of that, then you just deal with the disease. I seldom have a conversation where I talk about it. But i will if someone questions me. I never bring it up. When family and friends are ready to understand - they will come to you. Or at least mine did.The ones that loved me enough to be there for me. I surround myself with positive people. I walked away from all the negative friends and even some family members. I don't make plans. I do what I feel comfortable doing and I don't do whats not. Even if i live 50 more years, I will still live everyday like its the last one i will have. God does not make mistakes. If this disease is my calling to make people aware. Then at the end of the day I hope i have done a good job. You don't have to go on and on about being sick. You just have to be honest and informative to the people that want to understand. If you need to vent thats ok. Just make sure you vent to someone who understands and has been through it. I don't vent to my family because they do not have this.. so they don't know the extreme I go through. Here they do. Because almost everyone here has or will have the same things going on that i do. I am pretty sure everyone here will say the same about their doctor. Most are friendly but not always informed. Most MD's leave the specialty cases to the specialist. I make sure my PCP is as up to date on my disease as my Rheumy and I are. That way I know we are all on the same team. And since this is my life were trying to deal with, then darn it i am gonna be the coach! Your doctor is no different than the high schooler that bags your groceries at the grocery store. They both get paid to assist you. If its a crappy bagger at the end of the counter then i don't go through his lane. Gentle hugs Yvette, I hope you feel better soon. Holler anytime you need to vent or just to chat. =0)

[Kathy]

"When you have so much wrong you either laugh or cry. I guess i am to the point that i have shed enough tears. "

Bevi,
I hear you on this!
Like you I don't speak about my symptoms, unless it's my neck, back that is killing me. I make the Rice Sock and microwave them for my pain. I'm on day #2 of non stop pain.It gets to be old after awhile.
But what made me hurt, was I was having a great day and decided to go rake leaves!!!

Husband would rub my muscles, but he has Fibro & Arthritis real bad and says he can't massage me.
So I use this gel called BIOFREEZE. (contains 3.5% Natural Menthol)Out of all creams, lotions, etc for pain this has been the best. And it isn't as stinky too!

I also walk around wearing WalGreens brand of extra strength "Cool N' Heat Patches. They contain 5% menthol. I get them when they go half price (approx $4 reg. $8)

I pray you get to feeling better.
Love Kathy

[spunkie]

Kathy,
I used to go to a chiropractor but don't anymore because of the arthritis in my back, (scared to). Anyway, he used to give me samples of biofreeze, where in the world did you find that and can I buy it over the counter? Thanks!!!

[Kathy]

Spunkie, either the Physical THerapist gave it to me when I went for neck therapy or it was the Ortho Dr who gave it to me.
I showed me Internet recently to get a prescription, he said this has Mentyol in it, no prescription is needed. But he couldn't tell me where to get it. I guess call WalGreens, CVS, etc and ask if they keep it behind the counter. Some items they do hide and you have to ask for.

[Denise Barandas]

Hi My name is Denise. I am a 40 year old mother of 4. I was diagnosed after my 16 year old daughter began losing her hair. We were sent to a rheumatologist and after many test she was diagnosed with UCTD. Her main symptom was hair loss and fatigue. She is now 19 and has flares but for the most part is well. I saw my pcp after I decided that maybe the pain I was always in and the fatigue were related in some way to my daughters. It turns out my case is more severe than hers. I have MCTD. WHEW...now that I have introduced myself I have some questions.

I played a fun game of touch football with a few family friends the day after thanksgiving. I was sore the next day, of course. But since then the pains in my thighs have increased. Each day they have gotten worse. A few days ago I felt a pop in my upper left thigh. It was excrutiating! I must also add that I am in college and am taking a PE class. I went to class on Friday(yesterday) and took it pretty easy. When I got out of the shower my left leg was swollen all the way down to my knee and my knee was completely black and blue, even though I never hit it. My knee did not hurt until today. My right hand has a swollen spot on the knuckle of my middle finger closest to my hand (on the back of my hand). I have arthritis in my hands and usually my middle fingers are the worst. Today it is bad, swollen painful hot. Does this sound like anything to you all. Is this just a flare or what? I am in the process of getting my health insurance reinstated as it was cancelled on the 1st by mistake! SO frustrating, as I tried to see my pcp yesterday and thats when I found out it was terminated! Did a scramble to get it reinstated but it was 5 oclock by then. Guess I have to wait til Monday.
Okay enough rambling from me. Any info is greatly appreciated. I am so glad to have found this site.

Denise

[Kathy]

Hello & Welcome Denise!
Nice to meet you asnd know you are not alone, we understand what you are going through.
Thank Goodness for you getting diagnosed too! I'm always scared my daughter one day will have it or her daughter.

Pains in thighs, I soak in a very hot tub. I must expose my toes due to Periphial Nueropathy. It feels cold in hot water but in reality I'm not aware how hot it is on my feet, other than it stings. Very odd sensations... toes and feet turn purple when cold.

Now your knee beingblack & blue, sounds like either you bruised her real good even tho you never really hit anyone or anything, you could be very anemic.. Have an iron count draw on you if possible. (Do you feel weak? tired? cold?)

Yes arthritis in the knuckles are bad. I hate how large my knuckles have become, so swollen, I just started noticing them in photographs. When they hurt so bad and I have not taken my Celbrex I fill the sink up with warm water in the kitchen sink and move the knuckles around.. my own water therapathy :)

Be careful accidentally cancelling your health care. YIKES! We pay over $900 + a month for Cobra just to have healthcare.
It sucks us dry but we need it. esp. you now you & your daughter being ill.

Please take care, post often.
Keep us updated what your Dr say.
welcome to the board!
Kathy