View Full Version : Lungs, Lupus, Scleroderma?

02-09-2011, 09:59 PM
So I kinda copy and pasted some of what I've been saying on a different thread because it got way off my thread topic lol.

Found out while I was there I didnt do well on my 6 min walk test like I thought I did =( I might need some test where they have to go in and look at my lungs or something. I was at 4 standard deviations under whats normal, which doesnt sound very good. So my doctor has to find someone who can look at my lungs who is an adult doctor not a pediactric. The word schleroderma was thrown out there.

Originally for the first 6 months I went to my rheumy she labled it MCTD but she said thats what she was labling it because she wasnt sure what I had. Then she told me I have Lupus so I didnt think anything of it because she told me she thought that was what I had from the get go but she wasnt ready to call it that yet. The only reason she thinks that is because she said people with lupus dont often have lung involvement? and that its more common with people who have scleroderma. If I find out I have something else, that we could have known I had for like 2 years, and we didn't know because she thought that my lungs were fine Im going to be mad. I have always told her its when Im up and doing things and she always had me doing these tests where I was just sitting or lying down; those tests showed nothing. It wasnt until my 6 min walk test that anyone thought that I wasnt just "out of shape". Little bit frustrating.

Oh and I've been telling her for MONTHS that I have noticed my pulse is just weirdly really high all the time and her conclusion was "you never take your pills" when I tell her I do. So she's been thinking thats why my BP and pulse have been higher than they should be especially when Im on medicine that should be keeping it really low, which it used to. Now that she's listening to me she was saying that might be tied into the lung problems I've been having.

Originally Posted by magistramarla
I was never able to do much of anything without getting out of breath, even when I was young and in great shape. Last summer, when we were walking around Santorini, my hubby really got worried a couple of times when I got out of breath and my heart was racing. Does this sound familiar to you? Lucky for me, I've always had a very low BP, so that isn't a factor for me.

Thats me! Im ALWAYS out of breath. And when Im out of breath, I yawn. So Im basically yawning all the time and feel self conscience because I imagine it looks weird when you do it all the time lol My heart POUNDS when I get up and do anything. During my 6 min walk test, which was just walking at a normal pace up and down a hallway for 6 min, my heart rate was up to 160! Doesnt that sound just a bit high for an 18 year old who is on medicine that should keep her pulse down around 80 or 90? I thought so. I had a normal BP before I started taking Norvasc, then it dropped down to where my bottom number was always in the low 70s. Now its jumped back up to like 86 or higher some days even while Im on my medicine and my doctor said that shouldnt be happening. I feel like maybe I worry too much sometimes though. I dont know I guess I'll know more once she's talked to these people about what they think of my test results.

Sorry for the long post lol

02-10-2011, 05:06 AM
Hi Ritz,

Being out of breath all the time, is one of my problems as well. My doctor blames it on smoking, I am sure that smoking doesn't help, but not everything can be blamed on it.
But I am sure, you do not smoke.
By the way I do the yawning thing too, my doc said it is your bodies way to get enough air into your lungs. Makes sence to me.
My pulse is always high as well, my resting pulse is between 100 to 120, with or without meds, but I have Mitral Valve Prolapse.
I hope you can get answers and help soon.


02-10-2011, 08:15 AM
have you seen a pulmonologist yet? did they do a chest xray or ct scan?

02-10-2011, 09:32 AM
I havent seen one but I think thats who my doctor is trying to find. She said its hard for me because I cant just go to another doctor at Childrens because the kind of problems Im having need to be seen by an adult doctor, since Im on that fine line between being a teenager and an adult since I just turned 18. Pediatrics isnt what I need anymore, but with my rheumy she can look at kids an adults so it works with her. So next Tuesday Im supposed to stop by her office before I go to the counselor I think to see if she figured out what I need to do and who I need to see. And I had a chest xray 2 years ago right after I was diagnosed but I've never had one since then. The other tests I've done were a PFT and I had an echo done. Those didnt show anything wrong though. My doctor acted like she wasn't sure what exactly the results meant other than they obviously weren't normal because I was so far under what the results should have been. What she did say was that when there are lung problems they show up much more in scleroderma than in lupus, but as far as I know there could actually still be "nothing" wrong with my lungs as far as they're concerned. She said worse case they would have to go in an look at my lungs, best case they would want me to do the test again in a few months. But she isnt sure until she talks to them. I hate waiting to hear back on stuff like this.

02-10-2011, 11:29 AM
Reading what you wrote about your lungs reminds me of when I was dx with the Sarcoidosis. I know lots of Sarc patients on my sarc forum who have both Lupus and Sarc. When you go next Tuesday ask her about Sarc as a fit for you. Insist on a new chest X-ray. The lungs are the #1 involvement with the Sarc for most people and almost all the symptoms for Sarc are the same as the symptoms for Lupus. They are almost like fraternal twins in my mind. Also - most of the treatments for Sarc are the same as Lupus.

02-10-2011, 11:37 AM
an outline of scleroderma symptoms
guide.com/scleroderma.htm (http://www.women-health-guide.com/scleroderma.htm)

an outline of sarcoidosis smptoms

notice lung issues are listed on sarcoidosis as the 2nd issue.

02-10-2011, 09:50 PM
So I spent a lot of time today looking up information about scleroderma on several different websites, and I really feel like I have a lot of the different symptoms. My mom tells me not to self diagnose over the internet, but I only looked it up because my doctor vaguely mentioned it earlier in the week. So these are all of the things I've found that I would say I complain about like every day lol

stomach involvement: The most common complaint is a feeling of getting filled up too easily.
small bowl involvement: Small bowel involvement may lead to secondary effects of lactose intolerance (diarrhea and or bloating from dairy products).
Raynauds/digital ulcers: Around 40% of patients with scleroderma develop open sores on their fingertips called digital ulcers. In some patients, this is the major ongoing difficulty.Raynaud's phenomenon occurs in 95 percent of people with scleroderma and in 40 percent of persons with lupus.
Lungs: Involvement of the lung causes shortness of breath or fatigue during physical activity.
Skin: These changes may include swollen fingers and hands; thickened patches of skin, particularly on the fingers; and tight skin around the hands. Scleroderma often leads to finger and hand deformities as well, due to the combination of skin thickening, arthritis, tendinitis and tenosynovitis These processes ultimately result in limited movement of the fingers.

I have also looked up polymyositis as it was recommended and now that I know what it is I know that I almost certainly have that though my doctor never called it that. Those muscle enzymes are one of my lupus markers because whenever I go into a flare my arms and legs get incredibly weak and those levels get really high. I would have never thought to look at anything past lupus to explain my symptoms, but maybe its more. Who knows. I just think its weird that I have so many symptoms. but I guess I could be self diagnosing like my mom warned me I shouldnt.

02-11-2011, 09:13 AM
I think it's good to self educate about what you may or may not have. I don't like the term self diagnose b/c you aren't really doing that - after all you aren't the one who came up with either label and you aren't trying to treat it on your own, you are just trying to better understand the label that was presented to you as an option. It's important for all of us to understand the different labels thrown at us so we can work with our doctors. After all, you may not have thought to connect certain symptoms to another disease until he mentioned it b/c it already fit one of the diseases you know you have. That said, your mom is right in that we still need to keep an open mind once we think we might have found a fit b/c the doctor might know of something else that fits better which we never heard of. The whole key is communication and education. You can't treat what you don't know you have. When I was reading the two links I sent you I was surprised at how much scleroderma and sarc shared as common symptoms. I am learning to be less surprised at this since it seems to be a common occurance among AI diseases to share so many traits. Yet another reason that all this diagnosis process is so messy and confusing and tangled. I saw that scleroderma has some sort of difinitive diagnostic skin test or maybe it was blood test that can be done for diagnosis. Perhaps your dr will want to run one of those.

02-11-2011, 12:59 PM
I think that your doc was right when she said MCTD. My rheumy in Texas said that it is a legitimate AI disease, and can be an overlap of quite a few AI issues. The more I learn, the more I think she was right.
This is a good link: http://www.merckmanuals.com/home/sec05/ch068/ch068f.html
Keep on educating yourself!

02-11-2011, 01:56 PM
I think I came across that website the other day =) It was one of the best I looked at. The description of fingers looking like sausages king of made me giggle...lol thats my fingers. They dont really hurt like they used to when they would swell though which I thought was a little weird, but Im not complaining. Do you know what blood test they do to test for that? I have a list of the blood tests she was running this week.

02-11-2011, 07:29 PM
I don't think you're self-diagnosing, ritzbitz, I think you're educating yourself, which is a good thing. But, as Sandy pointed out, keep an open mind so you don't ignore all of your symptoms. I'm glad that you're getting the labs and care that you need to get the proper diagnosis. Sandy and Marla have given you some good links. Keep us posted on the developments!

02-12-2011, 05:21 AM
I think I came across that website the other day =) It was one of the best I looked at. The description of fingers looking like sausages king of made me giggle...lol thats my fingers. They dont really hurt like they used to when they would swell though which I thought was a little weird, but Im not complaining. Do you know what blood test they do to test for that? I have a list of the blood tests she was running this week.

Hi Ritz,

I have a question.
When your fingers swell like sausages, does the swelling go down somewhat during the day?
Mine swell like that as well, when I first get up in the morning, I can't make any attemt to make a fist, but throughout the day, I am able to make a " half" a fist. My cuticles are " ripped" to shreds, because when I do close my hands as much as I can, it pulls the skin on my fingers, because it is so tight.


02-12-2011, 10:11 AM
I'd have to say it does go down a little bit through the day, though not much. But its definitely worse in the morning. Right now they are so swollen that the rings I wear are digging into my skin. But last night while I was laying in bed getting ready to go to sleep they were so lose on my fingers (for the first time in weeks) they were almost falling off. If I had been awake enough to think of it I would have taken them off, but all I was thinking was "thats annoying I hope they dont fall off while Im sleeping" lol it'll probably be awhile before I can get them off again. When yours are swollen do you start getting little red bumps on your fingers after a few days of swelling? I asked my doctor about it a few months ago but she didnt seem concerned lol but once I get the little red bumps they start getting itchy (not necessarily my bumps but my fingers in general).

02-12-2011, 08:30 PM
lol yeah you should have taken them off.
No I don't get red bumps, but mine do itch sometimes, but it feels like the skin is stretching. I remember this kind of itching on my stomach, when I was pregnant and the skin had to stretch until it could not stretch anymore.
It's pretty bad, when you look at your fingers and think SAUSAGES.
Oh well.


02-13-2011, 08:24 PM
I know what you mean. Mine have been so swollen for a few weeks and last night me and a friend threw our friend a surprise birthday party where we spent the night at her house and played Wii for awhile. By midnight I was SOO sore and swollen EVERYWHERE and went to get my Naproxen out of my purse and it wasnt there =( as you can imagine sleeping on the floor didnt help. I hate feeling like I cant do the simplest of things like play goofy dancing games with my friends without paying for it.

02-13-2011, 08:46 PM
I'm so sorry that this disease makes it so hard for you to just be a kid. However, I'm glad that you still stay engaged with life and get out there to do those goofy things when you can.
Hang in there, girl.

02-15-2011, 08:51 AM
I go to my shrink appointment today. Not sure how that will go, its my first day (I dont know if I have to go more than once?). My doctor told me to stop by her office before we go to that appointment to see about my lungs and if she knew what I have to do now. I figure she would have called like a good doctor would if something was wrong that needed more testing but who knows. Im really nervous I dont want bad news but I also really think something is wrong and needs to be looked at more.