I just joined too! I was diagnosed on Monday and started my medications this morning. I too feel as though I'm letting everyone in my life down. I'm am so tired and sleepy. I am normally a high functional individual and go all the time. Now, I find it hard to get out of the bed. Hoping the medication (Plaquenil) kicks in soon! I developed Raynauds in my mid 20's but all my labs where negative then. The last 3 months I found myself weak, tired and short of breath a lot and lower back pain. I made two appointments to see my doc but cancelled both thinking It was in my head. I finally couldn't take it anymore and went to an appointment. Thank God my MD is caring. He did all the lab work that day and sure enough........I'm not crazy!!! I was seen by a Rheumy on Monday and he confirmed the diagnoses. I have had an echo, carotid doppler and will have a pulmonary function test on the 22nd. He is pulling out all the bells and whistles to make sure everything is ok. I am scared but relieved that I finally know what is wrong with me. I hope we both can learn much information about this disease through this support group. You are not alone!

Thank you for the super fast post! It is so comforting to hear from others that can relate. What is a carotid Doppler? I haven't heard of that and my doc didn't do any of the other tests that you mentioned either just a bunch of lab work and blood draws.

Welcome to our little group! Sorry you have to have a diagnosis to get in!
As for the pain, the Plaquenil will take awhile to kick in. Plan on 3 months. Meanwhile, I take Celebrex. Before I was on that, I took Aleve every day. It helps. Make sure to allow enough time for sleep. If you are not sleeping, talk to the Dr about a sleep aid. I think that a lot of time, our sleep quality is not good due to the pain. Dont work yourself to death on good days. But try to get out and do some gentle exercise every day. Walk a little, ride a bike, swim, go to yoga, stretch. Dont start with Body Slam! Eat right. And stay posted. Good luck.
Mary Ann

Welcome Billie and Keepon...
As usual, I can just say ditto to everything Mary Ann wrote. :-)
I've had much less pain once the plaquenil started working. I think that took about four months for me and I've been on it for almost a year now, I think. Some days now I don't take any painkillers at all now, but I have a range from panadol through ibuprofen up to Difene. But the exhaustion is the hardest part. I feel my partner and friends will get tired of me always being tired. Hasn't happened so far, but when we have plans and I have to go off and take a nap instead... well, how long can you expect someone to be understanding about that? But naps are good. If you have something extra to do in the evening, try to schedule a nap first. And then don't be too hard on yourself. There's a lot to adjust to and no one can tell you really what to expect because it's different from person to person, and from week to week.

A carotid doppler is an ultrasound. It is to see if you have any blockage. It is quick and painless and there is no prep for it.

bb

welcome to both of you......I hope we will be able to help you out with any and all questions.

it takes a while to adapt to the adjustments you may have to make at first. Once your symptoms are under control, you can probably get back to most of what you did before.....the thing you have to learn is to rest when you need it.....dont push through, you'll pay for it in spades. Give your meds a chance to get up to speed. I find that heat helps my joints when they hurt.

take care
Beth

Welcome, you two. I've only had the MCTD diagnosis for about 10 months and it was devastating to me at first. But you learn to deal with chronic fatigue, and once you are on the right meds, the pain becomes manageable.

I started with Prednisone but couldn't handle it after a couple of weeks b/c it was giving me very high blood pressure and severe insomnia. So it's Plaquinel for me, with Tramadol for the pain.

I'd been trying to tell my rheumy that I still have a lot of fatigue and pain and he played it down, until my visit to his office two days ago. When I told him about my fingers swelling so bad I couldn't get a ring off that I had worn for months, and symptoms of carpal tunnel, he finally agreed to re-test my blood and see if I need stronger meds.

In my case, I've been married 30 years and am raising my 5 yr old granddaughter so my fatigue mostly affects the cleanliness of my house. I can't begin to keep it up as nicely as I used to. Naps are way more important than removing dust from tables.

I'm sure you will enjoy this forum. We can all relate to the strange symptoms of this rare disease.

I had terrible fatigue and slept about 20 hours a day. I started on Cymbalta a few months ago. It is an antidepressant but has also been found to help chronic pain and fatigue. It gave me the jitters for the first few days, but that seemed like a good problem to have after being tired for so long. It has completely given me my life back. If I forget to take it for a few days I am reminded by the fatigue. I could handle everything else about this disease but the fatigue. It totally wiped me out. I hope you find something that helps. I know its hard to imagine, but you won't always feel this bad.

Hello, I am new here too. I was diagnosed a year and 1/2 ago but am just now dealing with all of it. I am on hydroxichloroquine. I have more rash issues and stomach issues than aches and pains. I wake up stiff and get stiff if sitting too long, but that's kind of it. I can't stand long in one spot at work either. But I don't really have any one to talk to about this because I look well people don't understand on "my bad days." Even my bf says you're always tired. Anyway, it's nice to be around people that can relate.

Anyway, plaquenil does help "control things." I wish you the best.