That is great news! When I had the cardiomyopathy, mine was 35-40%. Last time it was 50% and I felt it. So much better endurance and breathing!
I have been fighting the battle of the back. First, I started having horrible belly pain with dark stools. I figured I was bleeding due to the Celebrex as I have had problems before, so, I stopped it. My stomach got a lot better, the rest of me not so much.
First, I pulled a muscle in my upper back. It was 3 weeks in healing. Could not do anything. Then, I lifted a box and pulled my lower back a week ago. Still cannot move. Meanwhile, my plantar fascitis flared up and my shoulder got sore. I am back on the Celebrex. If not the inflammation just builds and builds and I am not going there again!
This is how I felt when diagnosed along with losing my hair!
The weather in East Tennessee is beautiful right now. I am enjoying little walks in the yard. I wanted to do a wildflower hike last weekend but could hardly walk. Maybe this weekend!
Have a great April.
Mary Ann

that is great Robert! I just had my first echo and lung xray yesterday. Wish me luck. Thus far, I haven't had any organ involvement but there seem to be slight concerns so Rhuem ordered a work up.

I am in a flare. Having difficulty maintaining my endurance and overloaded schedule. Missing work (i don't want to go down that path again). Lots of pain, swelling, knock down drag out fatigue, and doctor appointments. I am trying to stay in good spirits although my exercise and "health-kick" as well as my personal weekly goals have suffered. Changing treatment plan (again).

I'm here, I'm more than here, I am LIVING as much as possible and I'm not depressed. Every day I can say that is worth a thousand smiles.

Hi! Glad thing are looking up for you Robert! ;) I'm praying that all of you will continue to have Hope & peace daily, but most of all the strength to keep moving forward!

I think I'm at the end of my first flare. I was off neurontin for about a month, but the numbness came back. This was the first time I've experienced joint pain to where it became noticeable in my everyday routine. I also ended the flare with a sinus infection which took me 5 days to get through. This is the first I can remember a sinus infection taking me down this long. I guess with all the other stuff going on in my body, it had a hard time fighting the infection. I'm just so glad that I'm starting to feel like myself again. I play softball several times a week and this is the first time my activities have been interrupted.. Definitely an eye opener of what I'm really dealing with..

Praying for you all daily! Take care!

Hi everyone,

I'm doing pretty well. I'm starting to get that dizziness issue under control, from the gluten and sugar free diet. Yay! I am running my first 5k tomorrow. I encouraged my class to sign up, so about half my students will be running. I can't wait. Tonight, I am giong to bed early. It's been a long stressful week, what else should I expect in April, and I don't want to feel like poo in the morning :)

JR

Glad your heart is doing so good Livin. So sorry for your pain, Mary Ann. I'm still dealing with GI stuff-- severe nausea and pain. Just began taking Zofran for the nausea and Linzess ( a brand new drug for IBS and chronic constipation), it seems besides the gastroparesis, the motility of my colon is slowing down too.

Hi! Not sure what a roll call is, but I'll just take it as an opportunity to make my first post to the group. I was diagnosed in December 2012 and have been reading here ever since. I'm so appreciative of the information everyone shares! Especially since when my rheumy gave me the dx, he included a script, the name of an opthamologist he wanted me to see and told me to get on the internet and read everything I could. Pretty much everything I know has come from here. So thank you all!!

Welcome to our little group! Glad we have been able to help some. Stick around!
My back is a little better today so I am going to try a 1 mile hike to see the trout lilies in bloom. What a wonderful time of year!
Mary Ann

I'm doing well, health wise.....my daughter not so much. She had a second seizure and fell and broke her two front teeth and scraped and bruised herself pretty badly. It will be a few weeks before she can have the teeth completely repaired and she is having a lot of knee pain.....she most likely bruised the kneecap deeply. I am very worried about her, but I guess that's a moms lot in life right?

Mary Ann, you've had a rough run of things lately, I hope you feel better soon. Robert that's great news about your heart function!

I hope everyone else is doing well.

Beth

I am truly glad u r doing well. I have had what appears to b an abscess twice before once on my hand another in my shoulder. The whole area turns bright red and swells the pain is like previous bone infections I have had which is a lot. But when they get in they find a very tissue damaged area but nothing comes out in the cultures yes they started antibiotics but they must work awfully quick. Anyway elbow is now that way so doctor and probably hospital tomorrow since I am retaining water probably due to heart. I may be going back to Transplant center in June I have appt.s but it depends on what happens with this stuff and if I can start getting surgery to remove teeth other than that it is a waste.

Still Alive ;-)

Hi all -haven't been on here in a little bit. Things have been pretty busy and I've been so tired! I'm glad to see how positive all of you are with everything this disease has you going through. I've been getting sick by the end of the week latey and the rheumatologist told me that I'm overdoing things. It's so hard to cut back, and days in bed I don't find my husband to be very understanding. I had horrible ankle swelling this weekend, which is new and really freaked me out. Then a day in bed on top of that. I don't think he understands that this is the disease progressing. I haven't had to change my living habits much since my diagnosis, but now I have no choice. And new symptoms are scaring the crap out of me! But today I woke up feeling well, the sun is shining, so it's a good day. I'm not going to be depressed about all of this! We can do it, right? Hang in there everyone - I'm thinkig of all of you!
Shannon

Hi Everyone....I'm new to this site as well and so glad that I found it. It's such a blessing. I'm on day three of no sugar (not that long but it's a beginning) and see a natropathic doctor on the 24th. Also been very careful and watchful about eating Gluten.........trying to get it out of my diet. Started the hydroxchloriquin (finally), was too scared to try it before. Feeling hopeful and glad to be alive. Don't want to leave my 9 year old daughter for many, many years (God hear my prayers). Every minute feeling grateful for, even every second. Also grateful for all of you and hope you all have many moments of peace, joy, love and comfort throughout this day and days to come. We're not alone in this.
Livin Right...so glad that your heart function test came back "normal"! That is awesome news and I'm sure you feel like a ton of bricks has been taken off you. God Bless.

@Mary Ann, you are a trooper, I hope everything gets sorted soon and know you wont give them a break till they do.

@miahwd, hope you results are good, and sorry about the flare!

@babyredd Dealing with a flare stinks and getting through one is great. If you have another don't let it get you down. You got through this one.

@ Beth hope the best for you and your daughter

and ty all for well wishes
And everyone who didn't post this time, post. Your storie may be the one that changes a life or an outlook. Every case is different and there may someone out there scared to type what they feel until the see there problems are shared
Robert

PS Cat where are you

Ok, Robert, I'm adding my post. :) Glad your heart is doing so well.

I had my first flare over Christmas and haven't been the same since. Muscle aches, pains, toes of my left food moving on their own, which feels really weird and kind of scary. My latest blood work came back showing some possible kidney issues, so I'm having a ultrasound this week. Next week am having an EMG to see what's going on with my nerves.

But I'm still working full-time, have a wonderful husband who does his best to understand, and feel blessed and glad to be here most of the time. God bless all of you, and may you have peace and serenity and feel as well as you possibly can!

AnnMarie

Hello Everyone- love this little site!!!
Doing really well right now- had a bad flare after staining our deck it could be the sun or that I worked so hard I had nothing left. That is the one thing that is hard for me- I consider myself a bulldog / worker bee and having to take it easy is a very hard task...but don't worry this lovely disease is very considerate and reminds me every time I try to hard. Take care everyone...take care of your body, mind and spirit you need it!!!