Thanks for posting this, I've been watching daily for site traffic as well.

Still in an incomplete diagnostic journey, rheumy at the local U ordered a bunch of blood tests that I'd not had done before or were old. That was over two weeks ago and no word yet.

Hubby is home with our sons for the summer as he is a teacher. Boys are 4 and 7. Right now we're just back from camping, home to downed trees all over town from some bad storms.

The sun wrecks me and my muscles hurt, but at least my brain fog prevents me from taking anything too seriously! Ha

Tricia

I was glad to see a roll call also. I just got home from my dual lung biopsy and am waiting to feel better and get some results that may help with treatment.
@ Marry Ann :Glad your on top of the pain for now, Don't let it blow your mood when you start hurting again. I had WPW wolf parkison and white syndrom. They did the ablation when I was 18 open heart. Now there done simply by a scope now.

@Tricia : I just had problems with indirect sunlight in the hospital. Once we closed some blinds I started feeling better. I love to hear it when there testing new things, good luck on finding new answers, even though they don't always offer any help. there still looking!!
Robert

Tricia- Glad you got to have some fun before coming back to all the work!
Robert- I hope the results of the biopsy turn out to be helpful and not just another test.
My daughter had a stomach bug over the weekend and now, I have it. So thrilled. So far, it is not too bad. Praying this is the worst of it!
Mary Ann

Thanks for the roll call! I am doing OK. I have developed chronic hip pain (2 months, every day so far), so I see my internist on Monday. Not sure if it is MCTD or something else. Also, my eyes were so swollen yesterday that I could not come to work. Not painful, but uncomfortable. Not sure if that is MCTD or something else. I certainly looked funny.

Good news: My husband received a promotion. I, however, am looking for a new, less stressful job. It is a tough market!

Best to everyone. May we all feel well!

Gabrielle

Hi , friends. I've been struggling recently due to the deaths of grandparents. My grandfather died two months ago and my grandmother died just two months after he. I'm in shock and get these waves of heartache pain, nausea, and anxiety. I was unable to continue my strict routine of supplements throughout this crazy time which has made it undoubtedly more difficult. They were like parents to me and I can't believe they are not here on this earth anymore. I am trying take care of my body and be good to it so I don't do any damage.
Naturopath doctor is working for me, but he is very expensive. I believe the cost will go down once we get some of these major "fires" in my body put out. I sure feel good compared to how I felt when I first started going to him.
Take care everyone

Thanks for posting, MT.

Leg has been bothering me more than usual, had a sonogram, no new clot, which is good. I was able to get out body boarding twice, but it was very, very rough and scary. The waves aren't big, but they are shaped wrong, probably due to irregularities in the bottom, and their kinetic energy is often directed straight down, instead of towards the shore. They also break way too close together, and there's a serious rip current. Both days, conditions were within my ability, but just barely. And I get exhausted from diving under the waves constantly, find myself gasping for air. I get a couple of rides, but they aren't fast and powerful... the power is all directed toward the sand, and I had one bad wipeout.

Been experiencing a lot of depression recently, mostly due to elder care and lack of paying work. I don't know if I can face another five years of this with my father; it really brings my spirits down. Also been sleeping really poorly, I try to nap when I get home, but I can't get comfortable, and then I'm just exhausted at work. And I'm hating the paperwork, I just feel like I can't do it anymore. Sorry to be so downbeat, but it is a support group, I suppose! Appointment with the shrink tomorrow, maybe that will help.

I feel like I haven't been here in ages......my son was married this past weekend......I was wonderful and beautiful and here in my backyard. We spent a lot of time making the yard look good and it paid off! I am exhausted and will spend the next week or so recovering. This humidity is really rough, the last few days have been very difficult breathing, very winded very easy......sat's dropped down into the 80's a couple of times....not good. A small flare after the wedding, some swelling and pain in my feet......I am looking forward to some hammock time!

Beth

Hi!. I don't want to whine, so I'll just say I am HATING the heat down here in South Florida!!! Otherwise, it's just the normal aches and pains for me - some days are better than others. Hope everyone is doing well and coping the best way they know how!! Positive energy and peace to all.

Triple digits here until Tuesday, blech! Will get a lot done in the house I guess.
I have been waging battle with ants, we get them every spring/summer. I tried natural methods, seems to have driven them to other parts of the house. Gave Husband go ahead with the chemicals
Went to new counselor last week, another appt. Friday. Insomnia every since, ugh.
Lots and lots of pain this last week. Did do a lot of gardening previous. Also the sleep depravation doesn't help :\

I haven't been on this board in a long time. Its good to see some familiar faces and some new ones.

I'm currently 19 weeks pregnant and not getting any treatment for my MCTD. Was on Benlysta for one year and had lots of success with that before I had to get off because we were trying to conceive.

Other than some occasional muscle pain, I would say I'm symptom free due to the natural imunnosuppresent of being knocked up. Now my biggest concern is how long I will be able to breastfeed after delivery before my body freaks out and I have to go back on Benlysta.

Kitten- congrats!
Mary Ann

I'm still dealing with a flare or something since December. Really painful muscle spasms, headaches, stomach issues, etc. Was just diagnosed with osteoporosis, which sucks. I'll find out in a few days what they're planning to do about my hypercalcemia, the cause of the osteoporosis (not MCTD-related--I'm just lucky, I guess). Hopefully fixing that will help some of my medical issues and depression.

Hang in there, everybody!

I am exhausted all the time and my feet and hands hurt all the time. I went back to my Doc and she put me back on Savella 12/5 mg. I pray it doesn't make me sick like the last time. She said the low dose doesn't do that and so far she's right :)

Kitten, that is great news! And it's so interesting, this kind of supports one of our pet theories that MCTD symptoms get worse when hormone levels change-- adolescence, childbirth, menopause, andropause, etc.-- though of course environmental factors probably are huge for some of us, like Livin' Right. Anyway, I'm happy you're feeling better!

MT, did you have the cardiac ablation yet? Those beta blockers are nasty. I think they are harder on the kidneys and liver than a lot of other substances, just anecdotally from what people tell me, and the energy drop is huge. Hope you are able to be up and around a bit.

Sleepy, I hear you on sleep deprivation. My shrink and I had a serious talk about that last week... basically, if I get less than seven hours sleep, I'm going to have some pretty severe psych symptoms, particularly in the morning and late at night. Routine sadness or dysthymia starts looking like major depression, even with some vague delusions that I know are not true-- light paranoia about my job, etc. So I've gotten more serious about making sure I get sleep, and it's helped mentally.

I am feeling a bit better, but I think I am down because I can really see the connection between exercise and muscle pain. If I stop exercising for two or three days, my joints and muscles are definitely better... but I just can't live like that. I've gotten out on the body board a few times, but it's tricky-- I can't stay out long, and I have to be SO careful. I get a few good rides... sometimes people even come up to me and ask me for tips on how to catch waves... but then I collapse on the beach, just panting from exertion, and my legs and hips are shot for the next few days.

Alwe, I'm having more muscle cramps, too. I can control them, but it is scary sometimes in the water. As long as both legs don't cramp at the same time, I can still dive under a wave! But when a set of big four or five footers comes in, I have to dive three or four times in a row. Hand are cramping too, sometimes.

Sorry I was so downbeat in my last post.

I got the results back from the monitor. Just SVT like before. I am not hot to do the ablation and am going to put it off some more. I hate the beta blockers but am on a very small dose and it does help my BP which is going up.
I know what you mean by the exercise hurting. I try but really have to stay at a low level. I dont seem to get stronger, but instead seem to hurt more. I used to exercise a lot and would feel sore the next day and feel better in a couple more, even if I over did it. Now, I am very tired the next day and then the pain comes on the next day or day after that! It gets worse for about 5 days and then takes 2 or 3 weeks to stop hurting.
What to do about that? I dont know. I just try to do light exercise and keep it to short intervals.
My rheumy decided to quit. Her practice got bought out by a hospital and she was not happy. So, now I have no rheumy! I have an appointment next week but no one to see. Guess I will start over. She wasnt the greatest but she never doubted that I had MCTD and treated me for it. The next one may have different ideas. I hate the hassle. The only good thing is that maybe I can find someone closer than 50 miles away.
Be good!
Mary Ann