[karen.w.]

hello everyone

I am a little worried about my breathing lately,just wondered if anyone has experienced the same thing?

my breathing feels very shallow all the time almost as if I could stop breathing at anytime...& on a few occasions recently I have actually caught my breath,sort of gasped & then had to take a couple of deep breaths to feel as if I am breathing again..sorry,does that make any sense?
these experiences have been a little frightening & I have found myself focusing on my breathing in case it happens again,especially when I am in bed :worried:


the only other symptom I have had is my body feeling numb & weak...but no recent cold,cough,infection etc
also I have been anaemic in the past & felt breathless & weak but this feels different..

I am wondering if it could it be a side effect from my medication?(immuran & plaquenil)
or some sort of panic attacks?..although I don't feel anxious at all & I've never had any problems in the past except for being claustrophobic (sp?)

or is it nothing at all,just me being dramatic :lol:

anyway,sorry to ramble on...I would really appreciate any advice at all.
Thank you for reading
:love2: karen x

 

[pedro]

Hi Karen

Sorry about your breathing trouble!!!
I had some breathing difficulties in the summer when I was in a flare and the doctor told me it was part of lupus and that anti-inflammitories would help. They actually did help when with the breathing. Seems strange, I know, that it would help shortness of breath but it did. Once my flare calmed down so did the breathing....my joints were also worse at this time...all the things that go along with flaring. For me, it is for sure, part of a flare. .... I hope you are not flaring and get some relief soon.
Not sure if this is what is going on with you but if it continues I would see the doctor. I think shortness of breath is always a concern. I never had the tingling and numbness though, that concerns me when you mention that.
Take good care, Karen w.
blessings....:hug:
pedro (nancy)

 

[Lupusgal68]

Karen!

I have this same EXACT thing happen to me!!! It's just as you described, exactly.

See I have sleep apnea, and when this first started happening to me all I could think of was am I having apnea while awake??? I seemt o go through periods of it. I will go through a bad couple of months of it and then it eases and doesn't happen for a while. It is very scary when it occurs, and it occurs at any time including when I am rather calm and relaxed such as reading a book, or driving.

I have discussed this with my pulmonary doctor, my sleep apnea a doctor, and my hemotologist. The opinions seems to be anxiety/stress related. However, I disagree strongly to be honest with you. Mostly because when these episodes occur I am soooo calm, stress free, and relaxed. I believe it has something to do with my nervous system...just another part that the Lupus decides to fool around with! If I was stressed, or in a panic, or nervous when this happend I would have to agree with the docs, but it's quite the opposite. When I am most at ease It's almost as if my brain forgets it needs to tell my lungs to take a breath.

Once when I waiting on my hemotologist to come into the room I was sitting there very relaxed waiting. I suddenly gasped knowing I hadn't taken a breath and too much time went by. I then felt lightheaded and went all pins and needles. The doc came in and found my breathing to be VERY shallow. He said you need to take bigger breaths! I felt like ok..I breath the way I breath what am I to do???

I wish I had a real answer as to what this is, but all I can offer is that ou are not alone with this. This has been happening to me for many years when I am in a flare. As I said, I believe it's related to the nervous system. There have been plenty of times when I have gone through my worst peroids of stress and anxiety and this breathing stuff hasn't happened.

If you want to share more message me.

Pam xo

 

[karen.w.]

hi nancy

Thanks so much for replying so promptly

Thank you for your good advice..I know exactly what you mean,I have experienced the same breathing difficulties when I have been flared up,especially when it feels like you also have flu,not very nice at all..
unfortunately this feels different this time (I keep saying this :lol: )

It has been happening for about a month & at present I am pretty stable except for my joint's playing up the last few days..I am definitely not in a flare though.
It's hard to explain but almost feels like my body forgets to breathe?

nancy you are right though I should see my doctor,definitely worth getting checked out..I just don't want to sound like a hypochondriac

I hope you are keeping well yourself & thank you for your help nancy
take good care..karen x :hug:

 

[karen.w.]

hi pam

many thanks to you for replying so quickly too!

pam you have descibed it so perfectly!that is exactly what has been happening to me!!!I am sorry you have experienced this too but glad I am not going mad :hehe:

I also have to disagree with your doctors opinion because when it has happened to me I have been completely relaxed,once I was even in bed.I am not an anxious person in general quite the opposite in fact I'm a bit too laid back

pam you have put my mind at rest..my symptoms are exactly the same & hopefully it's nothing to worry about.however I will mention it to my rheumy next visit.

by the way what is sleep apnea?

thanks so much for your help pam
take good care..karen x :hug:

p.s sorry I've just thought pam should I be concerned if it is related to my nervous system?thanks x

 

[Lupusgal68]

Sleep apnea....is a condition in which you stop breathing for short periods of time while sleeping. Most of the time it is do to obstruction in the throat or airway. You or your partner might notice you wake up gasping, or snore, or stop breathing while sleeping. Your doctor will send you for a sleep study, they will attach wires to monitor your brain, heart, and breathing while you sleep there for the night. If they find you have episodes of apnea they will then send you for a 2nd study called a c-pap study. This study is done the same why except you will be wearing a mask supplying O2 at a certain force to see if this lessons the episodes. In my case is did so I am now suppose to sleep with this lovely mask on my face all night. It takes some getting used to for both yourself and your partner. haha

As far as whether or not to be concerned if it is our Nervous System.....I know when I am going through a bout of this I am concerned because you know it's not normal, however, as I said I have had this happen to me for so many years now I would have to say over 10 that I would think if something bad were going to come of it it would have by now. I can't say for sure it's the Nervous System but after reading through my Lupus books on the different parts of the Nervous System and what they control that is my theory and I am sticking to it. One thing I have learned living with this disease for over 22 years is that weird, strange, unexplainable things happen in our bodies, things that others might think we are crazy for feeling, things that leave as quickly as they come on. People with Lupus are so in tune with every part of their bodies, more so than others. I can literally feel the blood move through my veins. Sounds crazy right? However, my doctor has confirmed that others with Lupus have said the exact same thing to him.

Try not to worry Karen. Iwould still mention it to your doc and I would be curious to hear what you are told.

Best of Luck and take good care.
Pam

 

[lin]

Karen i would go tell your dr hun, if you havnt got an apointment with your rheumy soon.

Could be anything, good luck Karen, and let us know how it goes Lin xxx

 

[raggedyann1]

Karen,

Please call your doctor if you do not have an appointment soon. I recently had some breathing problems but they didn't occur all the time. For awhile it happened everyday but not all day and not after the same activity each time. My Rheumy had me see a Pulmonologist to get checked out. Sometimes it can be heart related also and your doctor may start with a Cardiologist. Because I also have Scleroderma the Pulmonologist was the first place for me to start.

The long and the short of it is that I don't have lung or heart problems but have Dysautonomia. My body's operating system has errors in it and will tell me things like I am short of breath when in reality I am not.

The symptoms I was having were feeling like I couldn't get enough air into my lungs even if I took deep breaths. I would feel winded other times like I had just run a marathon instead of sweeping the front hall which I do almost everyday. The sob has disappeared for now but if it comes back I will know what it is.

Take care,
Karen

 

[karen.w.]

Thank you all for your kind advice! :grhug:

I have an appointment with my rheumy on thursday so I will definitely mention it to him...I am so glad I posted about this because I probably wouldn't have told him otherwise

karen...thanks for explaining that to me & making me aware of how serious it could be..I am sorry you have that to cope with on top of everything else..it's a horrible feeling not breathing properly,I am also wondering if my headaches & dizziness could be caused through not breathing enough rather than assuming the culprit is the lupus or medications.


pam.....thanks for explaining about the sleep apnea,sorry you have this problem & how awful for you having to wear a mask!I don't think I could myself it would cause me to gasp for breath even more!

lin...thank you for your advice & concern & yes I will let you know how I get on...

Thanks again to everyone...I will keep you updated.
take care...karen x :love2: :grouphug2:

 

[halfpintfl]

Karen, This happened to me, and thru all the tests, they found that it was the Prednisone, the extra weight was putting pressure on my lungs, and I had only gained about seven pnds.!! That's why I was only on Pred. for about 2 wks. and won't go on it again.. Just another thought that I didn't want you to have your dr. overlook, mention everything all at one appt. Let us know.

 

[karen.w.]

hi halfpint

Thank you for your kind advice..I will remember to mention that..I think the steroids should be out of my system by now but you never know,it's a possibility,thanks for sharing your experience

I have put on about 9 pounds personally,so if it is that then what an incentive to lose it!!:hehe:
will let you know how it goes.
thanks again halfpint
take care...karen x :love2:

 

[acard]

Karen,:there:
I am sorry you are experiencing this horrible symptom. As you already can see you are not alone. I get the very same thing, but mine has been blamed on 2 different reasons. the 1st was acid reflux and most recently costochondritis(sp?) I personally feel it is the latter of the two. I sure hope you get a straight answer from your dr. and please keep us posted.

Take Care,
Becca

 

[Jirel]

My doctor has me on some exercises to enlarge my lung capacity. She says that because lupus patients are always very tired, we tend to walk around with our shoulders down or hunched over and this compresses the lungs and decreases the lung compacity. I know the last time I was in the hospital for minor surgery my oxygen level was only around 94%.

For the exercise, you (if your shoulders are good - mine still are) raise your hands STRAIGHT UP over your shoulders. Its important that they not go forwards any and stretch for the sky. My advice is to try it 5 times and if you don't get sore start increasing it. I was supposed to start with 10 but my muscles hurt pretty bad so I'm at 6 right now. You should be able to feel the stretch in the ribcage. Not saying that's definitely the problem but its an exercise that I don't think could hurt anyone.

 

[karen.w.]

update on rheumy appointment

hello again everyone

sorry I wasn't sure if I should have started a new thread?

anyway,I saw my rheumys registrar yesterday (same dr I normally see) & explained to him the problems I have been having with my breathing.he didn't seem concerned at all,after examining my chest & asking some questions he said that as I had no chest pain & haven't been coughing up phlegm (sp?) then there was nothing to worry about!


he dismissed my fears,said could possibly be panic attacks even though I am relaxed when it happens & my breathing feels shallow all the time.:worried: & that could be causing the numbness/pins & needles too.
however after he had spoken to my rheumy at the end of my appt he told me that my rheumy wants me to go for an ECG just to rule out any problems with my heart.


also.....when I told him about my sensitivities to fluorescent lighting he said he has never heard of it!! they have never come accross anyone with the same problem


I don't know whether I should feel relieved that it's nothing to worry about or question his competence???

Thank you all for your kind replies :grhug:
take care everyone...karen x :love2:


ACARD & JIREL.....Thank you both so much for your replies...I will definitely be trying those exercises,anything that will help is well worth a try!! :hug: :hug: x x

 

[Alia]

I also have bad breathing

Hi there, was going to start my own thread on this, but then saw this one.

My breathing has been very laboured and difficult from the very start of my lupus, nearly 3 years ago. What you describe is similar to me, very shallow and difficult breathing, even without any stress or excursion. No cough and not much chest pain. It really threw doctors off from a diagnosis of lupus, cos my bloods are nothing special apart from +ve ANA 1:640 and i didnt have any obvious inflammation, or a malar rash, but i did have chronic hives. But a tentative diagnosis of lupus was finally made. Some docs tried the "must be anxiety" thing on me at first, but the rheumys didnt think so.

For me, the bad breathing is always associated with bouts of bad fatigue, is it the same with other people?

It has been thoroughly investigated: I had CT scan, X-ray, ECG for the heart, nerve conduction tests to see if it was nerve-related....all showed nothing. The only conclusion was in the end: must somehow be lupus related. Although i'm still not sure.

Plaquinel did not help, then i started on prednisolone, which only helped at a high dose. As soon as the dose was lowered below 15mg, i got crap again. Tried azathioprine, and Cellcept (mycophenolate), neither helped as those drugs just made me tired at higher dosages which just makes my breathing worse. Also tried Heparin to thin the blood and see if that would help, but didnt.

It is still so bad that i cannot really do anything, just stuck indoors, often in bed, most days. My husband looks after me.

Anyone have any ideas what to try next? I really havent a clue, and i dont think the docs have either.

All the best,
Alia

 

[karen.w.]

hello alia

:welcome: to the forum,it's lovely to meet you

I am sorry you're experiencing such severe problems with your breathing.
It must be so disheartening not getting any answers & no form of treatment that will help your condition :sad:

It seems you have tried everything but to no avail..I sincerely hope someone can offer you some good advice & you can get some answers.
my breathing problem isn't as bad but I do empathise with what you are going through.

I am glad you have joined the forum...it's a wonderful, supportive & caring site with a lot of very knowledgeable members!

one other thing alia... you might want to introduce yourself in the 'introduce yourself' section of the forum so that members can welcome you here.
or one of our moderators may kindly move your post to give you your own thread

I look forward to getting to know you
take care..karen x