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10/17/2009 10:05 PM

All tests negative but still having chest pain

Bunnyhugger75
Bunnyhugger75  
Posts: 2019
Senior Member

Hello All and thanks for reading.

I went to the doc and got tests for the shortness of breath/chest pain/rapid heartbeat. Everything came back negative so not sure if it is side effects from the prednisone/plaquenil or the other option is I'm just nuts. I think a lot of my symptoms are not real quite often. I do have a theory as to why I do that.

When I was in my late teens, early twenties I was very ill with a stomach problem. I would throw up at night a lot and had terrible bowel problems. I was very thin and getting thinner. I went to several different docs for 5 years with them all pretty much concluding I was anorexic or just crazy. They put me on all kinds of anit depressents, anti anxiety meds. Yet, I would still end up in the hospital with this terrible pain in the middle of my chest like a hot knife slicing me open. Finally, I found a doctor that believed I didn't want to weight 90lbs and sure enough he did an endoscopy and found that the sphincter going into my stomach was not closing. I was not crazy or anorexic. I had a bunk sphincter. I had surgery and it was fixed. No more throwing up every night, no more pain.

Well, moral is....I still feel like that girl that doctor's think is crazy, and that friends/family think is just sickly or wimpy. That 5 years has made me doubt every ache and pain since. A few years back I was diagnosed with endometriosis, I didn't believe it until they showed me the video of the surgery.

With Lupus it is hard to have a clear diagnosis, so of course it is hard at times to believe that it is Lupus. What if it is all in my head? I've never had a butterfly rash, never had an elevated ESR (sedimentation rate), my kidneys work fine. Ya, I have the positive ANA and ssa/ssb and all those lab tests. But, it is times like these that I really question when all my tests for my heart and chest come back negative and yet I'm still having the pain. I'm still getting fevers between 99 - 100 every day (sometimes I wonder if my thermometer is actually right and maybe I don't have a temp).

I'm working half time now because of how crappy I feel. But, I wonder if I have done it all to myself, if the pain is all in my head.

And I know my boyfriend is starting to resent me for the illness. Not intentionally, it just happens. He has to work more and play less now because of me. He does a lot less with his friends because he is stuck taking care of me. I'm trying though, to push him out to do more without me, but I seem to be screwing that up too.

Thanks for letting me talk.

Amy

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10/17/2009 10:33 PM
Looopie
Posts: 2169
Senior Member

Hi Amy. Do not worry what doctors (or family or friends) think, it's what you feel and detect is important. You are the first one to detect what has gone wrong in your body.

I do not like how cardiologists would find men with cardiac symptoms more credible than women, and attribute our cardiac symptoms to hormones and anxiety. Perhaps another experienced & reknown cardiologist could repeat the echocardiogram to find what inexperience has failed to detect.

You do not need an elevated ESR to feel joint pain or myalgia. A good rheumatologist would treat from symptoms and clinical tests than leaving you in pain.

I have the same symptoms as you, and need to find many experienced specialists to provide treatment. Please do not be discouraged or depressed. It's what we lupies have to go through.

Best wishes

Marie Wink

Post edited by: Looopie, at: 10/18/2009 01:03 AM


10/18/2009 10:11 AM
redhairali
redhairali  
Posts: 3745
Group Leader

I know how you feel. I went and had a echocardiogram done a few weeks ago because of my APS. I was telling the doctor about my past history with congestive heart failure. When he repeated that back to me, he used air quotes, like I didn't know what I was talking about. I just wanted to slap him. I know my memory isn't the greatest, but I do remember being hook up to machines for several days and nurses coming in and out of my room regularly to check on me. (Very different from a regular hospital visit.) Plus all the leads hooked up to me.

I can understand where you are coming from. Lupus can make you question whether things are happening or not. Especially if you have gone from doctor to doctor trying to figure out what is wrong. Just pay attention to your body and if the doctors aren't listening to you. Find a new ones.

Alison

Post edited by: redhairali, at: 10/18/2009 10:25 AM


10/18/2009 05:52 PM
heidiclouser
 
Posts: 1036
Member

I have been having shortness of breath too. I had an echo a few weeks ago and have a nuclear stress test tomorrow. I have trouble distinguishing normal from my reality. Is it in my head? Could be I guess but I'm the best judge of my own reality. I have a wonderful team of doctors who I think believe my judgement. I'll go for the stress test if only to add more data that might be useful in the future.

10/18/2009 05:55 PM
Gen

I have suffered lung and chest pain for the past three years. I have a great lung and heart doctors. I have had all the test and so on. I do have inflamation around my heart. It comes and goes. I have Interstic Lung disese.

Both the doctors think that my chest pain is the chest wall itself. I get inflamation in the wall. As you all know we all have inflamation from our lupus. I also get very bad lung pain. I suffer with this almost every day.

When I'm on higher dose of prednisone 50mg and above that is when the pain is less.

Gen


10/20/2009 01:14 PM
Looopie
Posts: 2169
Senior Member

Hi Alison. I'll come and help you. You work on the Dr's left cheek and I'll fix his right.

Marie Tongue


10/20/2009 01:40 PM
redhairali
redhairali  
Posts: 3745
Group Leader

That sounds like a good plan. Don't doctors remember that they are here to Help?

Alison

Post edited by: redhairali, at: 10/20/2009 02:48 PM


10/20/2009 02:35 PM
Looopie
Posts: 2169
Senior Member

Some doctors think they are God's gift to mankind, and medicine is a status symbol rather than providing relief to the sick and dying. Patients are no longer humans but defective beings who deserve to be ridiculed and denied of treatment.

I like doctors from the old school, compassionate, kind, sympathetic and caring, but they are dying out and there are no replacements.

Marie Smile


10/20/2009 04:25 PM
mumeva
mumeva  
Posts: 6151
Group Leader
I'm an Advocate

Hey Marie, I have a nut doctor here in my town as well, can we add her to the list....PLEASE!!

Eva


10/20/2009 04:31 PM
Looopie
Posts: 2169
Senior Member

Yes please Eva. I have a list of nutty doctors as long as my arm.

Marie W00t

Post edited by: Looopie, at: 10/20/2009 04:35 PM

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