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ritzbit
02-15-2011, 06:38 PM
I went to my appointment with a counselor today, but before that went to my rheumy because she told me to check in with her when I went to my other appointment today. And let me say before anything else that I was under the impression that she would be talking to someone relavent about my bad 6 min walk test results. So I go in to talk to her and she tells me she talked to people at a conference she went to about me, without using my name, and that those people who have never met me or seen my medical records and only know whatever she might have said to them decided that I just need to exercise more. WHAT?! I have only been telling her that I do not do anything anymore because I can not do anything because when I do anything I CANT BREATH. So I guess the only logical explaination is to tell me to exercise? That is so stupid. I tried exercise over the summer and during the fall but it just made it worse and I cant get to a gym and its obviously to cold out for me to try to walk outside. Walking makes my legs and feet swell, and I cant breath almost the whole time, and it makes me feel sick. I feel like crap the days after I go on even 10-15 min walks. I thought she was finally listening to me and now she's back to "you just need exercise". Its just really frustrating because I really do believe something isn't right with my lungs. =(

slim
02-15-2011, 07:31 PM
Hey ritzbit

slim here if your rheumy isnt listening to you then see your primary physician and he or she can give you a referral to see a pulmonologist to have your lungs checked out.
Now if that doesn't work wait to you are out of breath and having difficulty breathing and go to the ER. You will be seen quickly because of the breathing problem ( strokee, heart attacks and reapiratory issues are seen first). Now for your rheumy get a new one because you need a doctor that listens to you, pro active in your care and will help you
on manageing you illness not hindering it. Sorry that you are feeling crappy I know how it is, it sucks. Get better soon and dont take no for an answer, your health is number one and no one knows your body more than you .
non painful hug from me to you

slim

jmail
02-15-2011, 09:42 PM
ritzbit, have you ever been checked for candida? That can slip below a person's radar. How often have you had to do anti-biotics lately? You do prednisone, right? That makes your sugar go up, which makes the "environment" more beneficial for yeast. And if you eat bad... While athlete's foot and other exterior locations are well documented, it really likes a dark, warm & moist environment - like your lungs. I'm on fluconazole for a month now, after my doc visit today. It impacts my lung function bad when it flares up, to the point that I can't hardly walk from one end of the house to the other. Sort of like having a really bad cold, but with minimal coughing & sniffles (thankfully)...

btw, you *do* have to exercise. Don't do it for "weight" or "doctor says" or nothin' like that, but do it for yourself. You really do feel better afterwards, especially if you can make it a habit. After just a few days, you do notice differences in your flexibility and mobility. Just don't try to run the marathon or do a triathalon tomorrow. Start small. Accomplish something, and bump it up a notch. It's sort of like school. You don't get a BA in a week... Realize that there will be some days that you won't get much done, but at the least, lay on the floor and do some back "core" exercises. Work your way up from there. I can't do *any* outdoor stuff right now myself. Because of the cold, I go into coughing fits with exertion. Even indoors, walking hurts the hips & back too much usually, so I've got a recumbent bike for my "wind" exercising. It was inexpensive enough to purchase, and it's easy enough to change the level and duration of a work-out on it, and I don't have to worry 'bout gettin' hit by no crazy-driven car... The rheumy, instead of criticizing, should have attempted to determine "where you are" as far as exercise, durability & stamina go, and then been able to come up with a regimen for you...
http://www.arthritis.org/exercise-intro.php

ritzbit
02-16-2011, 08:19 AM
I really did try exercising. Up until all of this started years ago I was really active. Cheerleading for a few hours every day. Then I quit, around when I think I was starting to get sick (I had no clue there was anything wrong for another 2 years). I really cant do much of everything, and she knows that. I try going on hikes like I used to, just walking around the neighborhood, and it takes too much out of me. I cant breath and it does not make me feel better at all. I have a lot of issues with my knees swelling, so even little amounts of exercise make them swell if nothing else. I dont like walking by myself so I'll go out with my family or my boyfriend, and I cant even keep up with them and feel like Im going to pass out. It really makes me feel terrible when I cant keep up with my out of shape parents, no offense to them. Im 18 and a ten minute walk shouldnt do that to me. I know exercise is important but it makes me feel more sick than anything with all my problems right now.

BLUESMAN
02-16-2011, 09:20 AM
RIZBIT,

From someone whose had LUPUS for 20 years and have just gone through threee years of heart attaks a 9 heart surgeries and am still looking at 2 more.

If you are haing that much of a problem breathingn I would make an appointment with aq CARDIOLOGIST for a stress test or for a test which is new that they came out with about a year ago is they give ya a shot and then ya sit n read a book for an hour in that time the dye that was in that shot works on any and all plaque or clots in your heart and arteries.

Then they take 5 pics or so and EVERY PIECE OF PLAQUE OR CLOTS SHOWS UP BRITE WHITE.

Also if you go further and get a stress test that will show ANY irregular heart beats , potential off beats, and potenital clots that may cause heart attacks or even worse an anneurism.

I would like to know what it was they were looking for, exercise is important but ta your age unless you;re a gaming freak and do nothing buit sit allday....i'm sure it sounds like youwere getting enough movement and cardiac work outs.

I would be on my way to a cardiologist NOW !!!!!

There are prescriptions women take that can cause these problems in young women ...like the pill etc.....
I know when you feel like crap exercise is hard to deal with, other than LUPUS Ihave a myriad of auto immune problmes but my disability started due to a broken backn neck....
I spent a year in a HALO and body brace and basically had to learn to walk again.....yet I have DR telling me to walk and get on the bicycle and push myself
AT 56 I'm not gonna push ANYTHING, I'm lucky to be alive.....but I will say when ya feel like crap THOUGH YOU MAY GET WINDED AND YOUR LEGS MAY HURT ETC.....

BUT IT;S LIKE WHEN YA PUSH YOURSELF....IT;S KIND OF LIKE AFTER DOING A hard days wqork YOUR BEAT AND TIRED AND HUNGRY BUT IN A GOOD WAY...ALSO WHEN YA SWEAT YA GET ALLTHE CRAP OUTOF YOUR SYSTEM AND IT HELP FOR YOUR MES TO BE CIRCULATED SO THEY WORK AND JUST DONLT BUILD UP IN YOUR SYSTEM.

THIS WHOLE THING CAN BE VERY FRUSTRATING..HANG IN THERE HION YOU;RE NOT ALONE

BUT PLEASE CALL A CARDIOLOGIST.

jAMES

btw BE CAREFULL WITH REFERALLS GIVE TO YOU FROM 1 DOC TO ANOTHER. USUALLY THESE REFERALS ARE NOT BECAUSE THIS GUYS IS toip notch IT;S BECUASE HE AND THE OTHER DOC HAVE AN AGREEMENT THAT THERE DOC WHO DID THE REFERRAL GET 10-15% of the money charged for your visit.
You;re better off doing your own research online about what Doctor to see.
THAT WAS TOLD TO ME BY MY PRIMARY WHO LUCKILY FORME IS A PERSONAL FRIEND.

I'VE NO IDEA WHERE YOU LIVE BUT IF YOU HAVE ANY WAY TO GET TO DEBORAH HOSPITAL DO IT !!!! THEY ARE RATED IN THE TOP 5 IN THE COUNTRY!!!! heart n lung is all they do
WWW.DEBORAH.ORG

tgal
02-16-2011, 06:35 PM
I am so sorry you are having to deal with idiots that don't seem to understand that you are a human and not some statistic that they can toss in the bottom drawer. When all of this began one of my issues was that I couldn't breathe. They said exercise more, lose weight (which was put on by the meds to make me able to BREATH) have tests. I did everything. Heart doc, lung doc, rhuemy, it just goes on and on. I so hope that you find the answer that you are in need of. I agree. Go to another doctor. Just keep going until you find someone that will listen! You deserve that

jmail
02-16-2011, 09:05 PM
I second Bluesman/St. James suggestion for the cardiologist...

ritzbit
02-17-2011, 08:56 AM
Cardiologists deal with your heart, right? Does that mean you think something with my heart could be causing my breathing problems? I have a high pulse for me compared to what I used to and its high even with being on the medicine Im one to lower all of that. Could that be related? She likes to just say that Im just not taking my pills which is causing the higher-than-should-be BP and pulse, but I am taking my medicine and yet it is still between 112-130 "normally". Up until about a year ago my pulse was not that high and when my heart is racing I can feel it through my whole body. I dont know if thats related but I just thought I'd say something about it with the mention of a cardiologist. I've told my doctor all this several times but she doesnt listen. I want to see another doctor, but my mother (who has to take me to my appointments so she makes them for when she can) will not make them with the doctor at Children's I actually like. Im sn adult and cant get an appointment to see the doctor of my choice, its so ridiculous.

magistramarla
02-17-2011, 11:09 AM
Ritz,
I am so sick of hearing docs say "exercise and lose 20 pounds and you will be fine"! That is the biggest cop-out there is!
Six weeks after my knee surgery, the orthopedist said that I should be "pain-free" and told me to go to the gym. I wasn't pain-free and it took a lot longer than six weeks for my joints to feel better. In fact, I think that the knee joint didn't start feeling better until my rheumy started me on MTX.
The rheumy that I have now thinks that my muscles ache because I need to exercise. I tried water aerobics, which I used to love doing years ago, and it put me out flat for two days after each time that I tried it.
These docs need to realize that we have other factors that need to be attended to first, and then we could happily restart the activities that we love after we start to feel better. I love to travel, and to walk with my hubby. We live near several beautiful beaches, and I would be walking on them every day if my muscles didn't ache and spasm so much that I fall just walking down the hall!
I agree that you should ask to see a cardiologist. Perhaps that doc might listen to you.
Hugs,
Marla

ritzbit
02-17-2011, 01:47 PM
I used to be out more often. I'll admit after I quit cheerleading I wasnt as active, but I think thats when my lupus started acting up without me even knowing anything was really wrong. During middle school everyone thought I was just depressed because all the sudden I didnt want to do anything and was always sleeping. Looking back thats probably when it started. I started having trouble breathing then, when I was running almost every day and that was when I was 12! If I hadnt just been a dumb kid maybe I would have thought something more of it but I just thought "maybe I just need to exercise more" (really funny I know). Well I learned then that didnt help lol
I love hiking! My dad took me hiking a lot growing up and now its more of a chore than enjoyable. Walking in the woods to take pictures which I love is out of the question most of the time. And the most annoying thing is my friends and family agreeing with my doctor, just because "shes a doctor she knows more than you". They dont know anymore than my doctor what exercise really does to my body, and its not fair of them to act like Im just really out of shape or something because while Im not in the best shape I cant help that I cant do more. Im not against walking, I used to every single day with my friend who lived by me. I wish I still could.

jmail
02-17-2011, 05:48 PM
Cardiologists deal with your heart, right? Does that mean you think something with my heart could be causing my breathing problems? I have a high pulse for me compared to what I used to and its high even with being on the medicine Im one to lower all of that. Could that be related?...
It could be heart related. If your heart has issues, and your not pumping blood "efficiently", the lungs might not be able to "translate" the oxygen to the blood stream, or get the carbon dioxide out of you, or both. It doesn't have to be the heart directly involved yet, and at your age, I'd assume that it's not that. However, there's a condition known as pericardial effusion (http://www.mayoclinic.com/health/pericardial-effusion/DS01124), which is where fluid builds up around your heart muscle. That can happen directly from lupus, or from meds. Don't let the terminology that site uses scare you, but take the issue seriously. There's also pleurisy (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002347), which is where your lungs separate from their lining. That's usually quite painful, although the last few times I've had it, I didn't really notice it too much. Guess one gets used to things. A regular x-ray finds pleurisy. I'm not sure about the fluid around the heart, though I'm sure that site tells you...

BLUESMAN
02-18-2011, 07:02 AM
RITZBITZ,
YES A CARDIOLOGIST is the DR who deals with your heart.....if your on meds for BP you may be making that problme worse and it's is letting you know by lack of air !!!!

PLEASE DO NOT MESS WITH YOU HEART !!!!!!
Some of the symptoms you mention ar also potentially a THYROID problem one of the biggest contributors to make LUPUS a bigger PITA that usual.
The racing, etc....
A good cardiologist if it has nothig to do with any blockages etc, may refer you to a ELECTRO PHYSIOLOGIST...they do things like PACEMAKERS etc.

Once I had my pacemaker installed breathing became easier, everything leveled out but I also had a failing heart with a BPM down as low as mid 40's where it should be more in the 90 range.
I feel better since getting it installed.....but the problem is still there.

Half of it is to TRY NOT TO DWELL on any one thing....
YOUR BRAIN is the BEST MEDECINE and is stronger than ANY PILL.

YES you can make your own appts but if your on your parents insurance there may be a clause that they must make the appts.
Even though you may prefer the pediatrician but there specialty is children....you need a GOOD DR for adults and a RHEUMOTOLOGIST who is very familiar with LUPUS...
Donlt just accept any doc give them an interview as if you were hiring someone to do a job.............. because you are.
Don;t be afirad to ask them IS LUPUS YOUR SPECIALTY?,
WHERE DID YOU GO TO SCHOOL?
WHERE DID YOU GRADUATE IN YOUR CLASS?
DO YOU STILL TAKE CLASSES ON THE NEWEST FINDINGS RELATED TO LUPUS????
ARE THE AFFILIATED WITH A HOSPITAL ...if so that usually means thay are in a higher class of RHEUMOTOLOGIST

You can test POSITIVE and NOT have it and visa vera it is a hard disease to diagnose....and sadly even once ya get it ther is no medicine that really STOPS IT OR PUTS IT IN REMISSION.
I've noticed over the 20 yerars I've dealt with this mess of a diseae that when yo get a fair up it;s gonna run it's course you can take prednisone, plaquenill or other meds they try but still it seems it;s gonna run it's course and when it;s ready to calm down it will.

What sucks is once othe DOCS know you have it and you go to them with a complaint if they have no answer you;re gonna start hearing it's PROBABLY the LUPUS
PROBABLY...I"M PAYING YOU FOR A PROBABLY????

That's the worst part, very frustrating.

I would suggest make an appt with a well known LUPUS RHEUMOTOLOGIST but make it like 60 days from now and keep and VERY detailed DIARY as to how you feel, when, what time, the weather everything.....since they seem to know next to nothing about this disease it becomes YOUR JOB to HELP THE DR HELP YOU.

Your MOM may also be scared that you;re sick and she can;t make it better so try to see it from her side and understand that as bad as you feel she is 10 times more worried about her little girl.....even though you;re a young woman now !!!

Your heart racing and uncomfortable problems can also be PANIC ATTACKS due to STRESS OVERLOAD.

I hope this helps

James

SandyR
02-18-2011, 09:33 AM
Just to add - because my AI disease is affecting my lungs I must also go to a cardiologist b/c of the heart/lung connection.

OHMEOHMY
02-20-2011, 03:58 PM
Oh, Oh, Oh!
i was logging on today for advice, then saw your post. after years on medicaid, i finally got a rheumy again. i had my second visit with him on friday, my boyfriend drove me and accompanied me for the whole visit.
when i went in, the first thing that happened was a bunch of paperwork (i.e. on a scale of one to ten, how severe has your pain been, on a scale of one to ten, how bad has your fatigue been, and a myriad of questions to which you can answer one of four ways, from cannot do, to no problem). my answers clearly reflected that i no longer drive, have big problems with self-care, and am a home bound shut-in. all of which has been developing and worsening over the last four months. i was in his office seeking help, and was prepared, in my desperation, to take drugs that have previously been on my 'no-no' list.
then i am taken to an exam room, and a nurse practitioner enters. she does a thorough exam, asks a lot of questions, and i tell her that this is the worst condition i have ever been in, and need HELP ( i was diagnosed with lupus in '92, followed by later diagnoses of sjogrens, fibromyalgia, osteoarthritis, chronic fatigue syndrome, bursitis, some other over lapping things)
the dr. comes in and writes me a prescription for the Y.M.C.A.!
i was STUNNED, my boyfriend was rendered speechless!
i at least had the presences of mind to insist on an anti-infamatory, which he grudgingly wrote.
once i was home, fuming by then, feeling insulted, etc, i called and got ANOTHER appt. w/him for march first.
my plan is to go in and tell him that he did not listen to me at all, and should i look for a new doc, or is he willing to listen to me.
you and i both need the advice of anyone out there with suggestions!