The Lupus Forum banner
1 - 10 of 10 Posts

·
Registered
Joined
·
32 Posts
Discussion Starter · #1 ·
Hi to all on the forum. I wonder if anyone has had a similar experience. I've just spent a couple of days in hospital due to breathing difficulties and edema of feet and ankles. My GP admitted me as she was afraid I had congestive heart failure. I had been treated for an asthma like problem for the previous 2 weeks. What started as a wheeze escalated to terrible breathlessness with chest pain and increasing swelling of lower limbs (pitting edema). I was unable to lie down and had slept sitting up in my bed surrounded by pillows. Had severe stabbing pain between shoulder blades which was worse if I tried to lie flat. Also had tight band around upper chest. Needed ventolin inhaler with some sort of chamber attachment as I couldnt take a deep breath in. Doc had also prescribed water tablets and swelling was reducing. All of these symptoms were completely new for me as I'd never had asthma or any chest problem in my life.(I'm 56)
Was admitted to acute medical ward where I was asked all the usual questions but got the impression that my GP had overreacted. Because I'd had the water tablets for a few days the swelling had reduced a fair bit and the consultant said I didnt have serious edema. He did hear "crackles" in my left lung and said I maybe had a "bit" of pneumonia. He had all my hospital notes but asked me for my medical history anyway and I told him I had mild lupus and fibromyalgia. He said he didnt think I had anything serious but would do some tests. After a chest x-ray, a heart scan and blood tests I was kept in the triage ward for a couple of nights then told I had probably had a virus.
Although I am very relieved that I dont have heart failure I feel like I was sort of dismissed as a bit of a time waster. This whole thing has been very frightening for me(and my poor hubby). My breathing has improved a great deal but the swelling continues though the water tablets do help.
This has been such a long post and I apologise to anyone who has read it for the rant. Is it possible that it could be due to lupus? I've had so many hospital stays over the last few years and most times symptoms unexplained.:(My bloodwork is negative for lupus or at least "inconclusive"Finally after many years the rheumatologist dxd mild lupus and put me on Plaquenil a couple of months ago. None of the episodes of inflammation in gallbladder,bile ducts and esophagus are attributed to lupus. Sorry...what a lot of poor me,s. Luv, Mary
 

·
Registered
Joined
·
4,968 Posts
Hi Mary and so sorry for all that you have been through.

If in fact this is Lupus and it is just not showing up in your blood work you will start to notice a difference in how you feel being on the Plaquenil. It can take up to 6 months to work so be patient and give it time.

I am glad that your doctor seems to be taking a proactive approach in how he is treating you. I do hope you get feeling better very soon.:wink2:
 

·
Premium Member
Joined
·
7,567 Posts
Hi Mary, what a horrible experience. I am so sorry that you were made to feel like a timewaster. It does not sound as though your gp overreacted. Breathing difficulties are scary. It sounds as though you were in a lot of pain. I hope you start to improve soon. Have you told your rheumy about this latest episode? I am glad your gp is supportive, maybe he could get you a rheumy appt again so you could be assessed to see if it is a lupus problem? Please don't be sorry for your post as its what we are here for, to support each other.

Take care

Deb
 

·
Registered
Joined
·
1,101 Posts
Howdy Mary,
Let me say it: Poor you! Sounds an appalling time.
One MD told me (in regard to my anaphylactic reaction to all fruit, which they now say is related to the SLE):
"If you live, it is cardio-pulmonary oedema. If you die, it is congestive heart failure."
So far I have only had congestive heart failure once :) but cardio-pulmonary oedema many, many times.
All the best,
Douglas+
 

·
Registered
Joined
·
32 Posts
Discussion Starter · #6 ·
Thank you for your kind replies. I'm feeling much better today and the breathing is a lot easier. I'll have a chat with my GP at my appointment today to see if the problem could be lupus related. I think my problem with the medical profession is simply that I am overawed by their status. I always think doctors look at me sort of over the rims of their specs!! Crazy isn't it. Anyway a friend of mine told me that the way to overcome this is to imagine them with no clothes on!! I think that might make me more tongue-tied than normal.
Take care, love, Mary x
 

·
Moderator
Joined
·
11,410 Posts
Hi Mary,

I have heart failure, found out in Jan,2004. They never could figure out why my heart was functioning at 35%. They thought I must of had a virus but I was never sick with anything of the sort.

Then Nov, 2004 I was diagnosed with SLE. I think the two are related but no one will agree with that.

Have you seen a cardiologist about your heart failure? I see one every six months and have echos once or twice a year.

Having heart failure is doable. I take a betta blocker so my heart doesnt have to work so hard. My ejection fraction is in normal range once again.

Take care of yourself,
Lyn
 

·
Registered
Joined
·
12 Posts
Hello Marydoll,
I had the exact same thing about ten years ago. I could not breathe. I had a tight band around my mid-section, my legs were swollen, I was spitting up phlegm 100% of the time and the rest of the lupus symptoms go on and on. I just wanted to address the lung issue. I had to check into a hospital to get something done. I was at UNC- hospital in North Carolina for two weeks. They ran test after test and by the process of elimination, because there is no test for this diagnosis, they told me I had “Lupus Shrinking Lung Syndrome.” I was so weak my diaphragm was not working and I was breathing with my neck muscles. The fact I lived with a smoker wasn’t too cool either. I got rid of the smoker and was on major steroid therapy with plaquenil. Now, thank God I am in remission. That was one of the most frightening experiences I have ever had with my Lupus. I understand what you are going through. Joint pain and fatigue I have had for 30 years but when my lungs got involved that was really scary. Hang in there, shrinking lung is treatable.
Sincerely,
Mary Ann
 

·
Moderator
Joined
·
4,446 Posts
Hiya.. I think if you imagine those Doctors naked it could bring on a massive heart problem..YUK:rotfl:.... thats one way of going into a flare!!!
 

·
Registered
Joined
·
32 Posts
Discussion Starter · #10 ·
Hi All

I'm so glad I posted. I's great to gey feedback when you're having scary symptoms. Thankfully my heart tests did not show any problems but my doctor has told me that my lung tests are not too good. Well I didnt think they would be very good since I could hardly breathe. However the dx seems to be possible asthma. I'm told that this is perfectly feasible that I should suddenly have asthma at aged 56. You can tell that I'm not convinced! I will have to accept it for now and attend the asthma clinic for assessment next week. None of the medical professionals I've seen think it's anything to do with lupus.
The reason I'm not convinced is that I've had so many instances of internal organ inflammation in the last few years yet no-one is joining the dots!! Still being "monitored" re bile duct inflammation as no reason found for cause and I dont think they know what to do with me. I think I'll just have to wait and see what happens next. Anyway I hope everyone is ok.
And as for naked doctors...perish the thought eh. lol x
 
1 - 10 of 10 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top