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Lupus- undifferentiated connective tissue

Sep 10, 2015 2:51 PM

So for the last month or so I've had the hardest time breathing. Gets way worse with walking and includes chest pain and rib pain. Next step in the costeochondritid injection I got this afternoon doesn't help is a cat scan an maybe a med change. I love my dr but and so lost. Why is this occurring in my body? I was told early on tht I may develop lupus and am currently holding a dx for undifferentiated connective tissue disease and fibro.

Anyone go through similar sysmptons during the never ending diagnosis phase?

Sep 10, 2015 3:13 PM

MyDogMMPain, I went through those exact same symptoms last summer. It took 6 months and multiple heart and lung tests before they determined my asthma and allergy meds needed changing, and that I have pvc's. I still get tired walking, but not giving out of breath. Hopefully you'll find out what's going on very soon, and I'm praying it's not anything major. πŸ™πŸŒΌ

Sep 10, 2015 3:28 PM

Premature Atrial Contractions. PAC's

Sep 10, 2015 3:29 PM

Oops... Premature ventricular Contractions, pvc's

Sep 10, 2015 3:59 PM

I have!! I don't have lupus. But I have and I do have difficulty breathing from time to time when it acts up. To give you even more strength to get through this.

Sep 10, 2015 4:37 PM

Oh, I'm sorry.. I thought I'd said until I read your answer. I have Costovhondritis which is an inflammation of the soft tissue that is attached to your sternum and fills in the spaces between the ribs. When it's acting up, the pain is anywhere from discomfort to downright OMG pain that I think about going to the ER. It makes you feel like you're chest muscles are in spasm and pain runs along the left side of the sternum and also causes the feeling that the ribcage is being compressed. When that happens it can make it feel like you can't breathe well. It causes anxiety to me when it's bad and that's what I think makes it hard for me to breathe personally. I hope this made sense. There are others here that have this disease and perhaps they can describe it better to you. Best wishes and I pray that you have a peaceful and restful night with a light pain load. Hang in there. If you need me, I'm a keystroke away!! πŸ™πŸ»πŸŒ»

Sep 10, 2015 4:39 PM

Thanks. I definitely questioned the ER the other night. Just mostly trying to figure out if a rheumatologist is correct or if something else is going on

Sep 13, 2015 3:33 PM

I have gone through the same exact route. The latest (after a two day hospitalization) was costochondritis on top of the Lupus/UCTD/Fibro Dx, which has taken six years to come to. First Fibro, then UCTD then finally Lupus. I begged the doc to test me for Lyme disease- I did not want to have Lupus. I still haven't accepted it. The fact that I will never wake up the same, ever again. My life is forever altered. Adding Costo to the mix is just another "something else" to deal with, but at least it goes away. You're not alone.

Sep 13, 2015 6:55 PM

HankSam, there are so many more of us out here that so many of these various things. I know I've wanted to cry at times when they'd add another "what next" diagnosis. None of us are alone. Sadly there are so many of us! πŸ™πŸŒΌ

Sep 13, 2015 7:04 PM

HankSam. This couldn't be more relatable to the condition I'm in. So nice to hear from you. Last night chest pains off the
Charts. I was almost screaming at points. I wonder if something would have actually showed up but didn't want to pay to find out I guess. A little better today

Sep 13, 2015 7:05 PM

Flappy, I have cried many times. Having gone undiagnosed and misdiagnosed for many years without relief, only to find out I have something without a cure.... Since my Dx I've come to know, it is a similar path for many. All I can do now is pray, treat my body well and take my πŸ’Š-luckily they are, for the most part, managing most of my symptoms. πŸ™

Sep 13, 2015 7:06 PM

Did anything in particular trigger lupus for you? They think this is all because I broke over 1/4 of my body when I was hit by a truck.

Sep 13, 2015 7:13 PM

(((Hugs))) & prayers for you Hanksam! πŸ™πŸŒΌ

Sep 13, 2015 7:14 PM

myDog, the only saving grace, is that the costochondritis went away on its own. But, it came back a few days later, I wasn't afraid, because every artery had been tested, my heart had been photographed from every angle-inside and out. So, I knew I wasn't having a heart attack and that I just needed to ride it out. I eventually fell asleep and woke up sore, but the major pain was gone. It does go away.

Sep 13, 2015 7:19 PM

FlappyLady, thank you!!!

Sep 13, 2015 7:23 PM

myDogMMP, one thing that helped my costochondritis was to put heat pack on the rib area. The "trigger" for my Lupus seems to have been a very bad Flu.

Sep 13, 2015 7:32 PM

myDogMMP, I also get shortness of breath with the costochondritis. My doctor, here in Colorado, told me he could Rx steroids, but I refused, and he said it would probably come and go, and that I was already taking any other meds he would Rx- Tramadol, Plaquenil. The only way he was able to come to that Dx was by eliminating everything else. I had every test done. Echo, stress test (nuclear), EKG, CT Scan..., all of that plus my Lupus Hx led them to Costochondritis. I don't do well with steroids, so I won't take them, but they are very effective for many people.

Sep 13, 2015 7:34 PM

I already take prednisone and plaquinel now Meloxicam too

Sep 13, 2015 7:44 PM

I had costochondritis for many years. Excruciating rib pain. It was so bad that I couldn't wear a bra for years. To this day I can only wear one for a few hours before it starts to hurt now. I really don't know why it ended up easing off after about 10 yrs.. but I am sure glad it did.

Sep 13, 2015 7:45 PM

myDog, wow, seems like you're taking everything(+) already too; probably can't hurt to try an old-fashioned heating pad, or just a warm rag inside a plastic bag, if you don't have a heating pad. I know I was very sore in the area of the pain after the first episode, which lasted three days, expect soreness on your ribs. But it will just disappear suddenly.

Sep 13, 2015 7:48 PM

That's what my doc said, costochondritis just tends to come and go, and they don't know why. Well, off to walk Hank and Sam before bedtime. πŸ™

Sep 13, 2015 7:49 PM

My dogs name is Hank too!! The others is Opal

Sep 13, 2015 7:50 PM

🐢🐢 that's funny!!! They are the best!

Sep 13, 2015 7:52 PM

lol.. bras are def the devil. Yes.. I always found heat to help all my pain. (Now tho.. I am getting hot flashes with peri menopause, now that my ovaries are starting to shut down after a hysterectomy. They refused to take my ovaries so now i get pmdd and hot flashes.. yayee. Just what I didn't need. )

Sep 13, 2015 10:51 PM

I've had it constantly lately. I try massage my ribs--very gently-- but feels like they could break right off. I didn't realize it was so common. I take Plaqyinuil but can't tolerate prednisone (what a surprise). Pets are the best.

Sep 13, 2015 10:54 PM

Prednisone has been a life saver. However I already have token most f my bones and am worried about the long term side effects

Sep 13, 2015 11:01 PM

HankSam not everyone suffers forever with Lupus--I hate for you to think of it as a curse. I know a couple of people who manage well-- it just might take some time and med trials. I have many complications so I'm not the best gauge but I also didn't want to accept my diagnosis. But I think it's better to know so you can start taking good care now. I know someone who wasn't aware she had Lupus and because it was left untreated she had a stroke and wound up with transverse myelitis. Better if you can take some Plaqyinyl, get good support and hopefully keep it from progressing (*not that anything that bad would happen, I just thought it was interesting). Good luck to you.

Sep 14, 2015 7:49 AM

I think knowing you have something going on, but not knowing what's causing it, that's the worst for me. Like the tremors, dizziness and imbalance I have that hasn't been given a cause. I had a spell out the dizziness & imbalance this weekend. I'd go to turn a corner and veer right into the wall or door jamb. With my anemia I'm covered in bruises, and soon I'll be polka dotted! Lol there's 3-4 docs saying they think ih have MS. The Mayo doc said he won't make any guesstimation until we have all the test results back. I'm glad he's being cautious but it is frustrating.

I have taken prednisone so many times for my asthma that I now have osteopenia. But having gone through a status asthmaticus attack, I'll take the risk. I am taking Plaquenil now for my sjogrens. It's made such a difference in my pain, there's no way is come off unless I have a severe reaction to it. I'm praying I don't! With so many allergies I'm very lucky I can take this. πŸ™πŸŒΌ

Sep 14, 2015 10:36 AM

Wok up feeling quite a bit better! Good thing too since I've got a hell of a week to get through! Two tests, one is anatomy the other is chem 2. Working onwards my dietetics license is tough with chronic pain and disease. But I want it too bad to dare give up. I did decide to wit my job so I could focus on school and my health. This is my last week and I have to get through it in it's entirety to get my paid time off paid out... So stupid but whatever. I can do it. I have to!

Sep 15, 2015 9:44 AM

Determination is key. Good luck! πŸ™πŸŒΌ

Sep 15, 2015 9:48 AM

Thanks! Three tests plus work plus class plus ct scan = have to have determination to get through it with As

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