Weird chest sensation

[jacob87]

It all started few months ago with chest fullness and some form of tightness/mild pain, especially in the evening or at night. Always at rest. Then it got worse that I was waking up in the middle on a night with that weird tightness. It lasted for few hours each time, sometimes with mild dyspnea; preventing my from falling back asleep quickly. Sometimes I had elevated resting heart rate (high 90s), possibly due to anxiety being worried about my chest.

I went to see a cardiologist.  After few visits and follow ups, I had EKG, blood work, heart monitor for a full month, chest x-ray and then echocardiogram. All came fine, only the monitor was showing episodes of increased pulse.  Cardiologist told me that it doesn't look like a cardiac issue to him.

Recently I started having many SJS related symptoms, swollen/dry throat, severe fatigue, etc.  With them, this chest tightness came back and intensified. Now it got more weird. Here is what I observed so far:

1. It feels like a tightness around my pectorals, either only on left side, or on both, around the sternum but not on the sternum itself. 
2. Seems to be coming from the chest muscles. When pressed, some muscle parts seem tender, ribs seem fine. Pressing/massage doesn't help. I don't do any work out that would have caused it BTW.
3. I often have strong, tingling sensation deep inside. It feels like something moving/crawling (?) inside, kind of "bubbling" sensation, like if there was a boiling water inside my chest muscles (without the boiling temperature of course).
4. Gets worse in the evening, sometimes wakes me up at night. But today I had it all day at work for example, so  I am not sure if there is a clear pattern.
5. Tried antacid (no help or hard to tell), ibuprofen (seems to help a little).

I am just finishing burst and taper Prednisone (60mg to 0 in 2 weeks) from my PCP. When I was on high dose (40-60 a day) all my symptoms were gone, including the chest sensation. That plus the fact that I have other SJS symptoms very active recently, makes me think it's an inflammation, but my chest isn't really swollen.
At least it seems to be SJS related. So far PCP has no idea what may be causing it. I have to wait over a month until I see my rheumatologist.

So far my guesses were:
1. General inflammation (possible, but is it typical to feel it like this??)
2. GERD - I think antacids would have helped?
3. Chest wall inflammation (costochondritis) - but I think the pain would be more in my ribs or around them, while it feels more in the muscle itself.
4. Heart issues - especially high pulse would suggest that, but I think I did a full set of heart tests, and so far everything is ok.
5. Heart inflammation - cardiologist told me that most of them would have been diagnosed during echo. However, at the time of echo I didn't have any symptoms, I am not sure if that something that's noticeable only when symptoms are present.

Anybody else who had similar symptoms? Any ideas what else to consider?

[Rachel F]

Well I'm totally guessing but what about pleurisy or asthma? I'm guessing your PCP would have investigated those possibilities. You could google the "ms hug" which is pain in the torso area- I've had that sensation although I don't have MS so maybe it is something more broadly experienced? Another thought- you may want to ask if your taper could be extended- I had trouble tapering from 20 mg... Your #3 sounds a lot like asthma. Did they do a breath test where you breath into a machine and they measure how much air you can expel? YOu could see an allergy dr and they would do that test... Good luck to you! I had a ton of bizarre symptoms when I was first diagnosed which I do not get anymore. It was like my body freaked out but it's more predictable now. In the meantime, I wonder if you slept slightly elevated if that would help.
All the best

[CMNK12]

Please go to a pulmonologist. Perhaps you have pulmonary inflammation? IDK but please get evaluated.

Did you have a stress test done by the cardiologist? EKG  really are not diagnostic unless you are having an event at the time of the EKG.


Be persistent. You are your own best advocate. You know your body. Sometimes it takes multiple doctors to figure it out . Good luck and god bless. Ck

[cccourt1942]

Jacob--I hurt just reading your description.
    I could go thru all of your points, but so many of mine to which I will explain don't align with yours...especially when you point out the sternum itself doesn't hurt and pointing out the tingling.
    Here goes:  About 20 years ago I had a pleurisy attack.  By the time I got to work...I just laid atop a hard table top to continue breathing.  Got to the doctor and he dxed pleurisy.  Don't recall the treatment.  Has never reoccurred.  About 5 or 6 years ago (I'm a female) I could not keep a bra fastened more than 2 to 4 hours.  If I did, by the time I unhooked it my sternum area was so sensitive I had trouble breathing deeply.  Though I was retired at the time, I worked part time...and this irritation HURT.  SjS dx comes along Dec-2013 and then the other dxes followed--which had been there for years to decades just undxed.  Suddenly last summer this chest thing manifested itself so severely I didn't think I could stand up.  I tht back to the pleurisy...and thought this could possibly be the same as decades before.  Dx was costochondritis.  Treatment was prednisone.  I will let you google it for yourself and it is EXACTLY like the online descriptions.  Some attacks are less severe than others.  After the dx I realized there were many times I had to get on a hard surface...sitting AND laying down to get relief.  Still don't understand why.  Last point: you mentioned your "left side."  For some strange reason the costochondritis settles on the left side between (I really can't remember)  (I'll say) the 3rd and 4th ribs!  I nearly collapsed when I read that ...as it was the side pain when I was searching for a flat place to lie down. 

The prednisone fixed me up last summer...had two semi-severe attacks since then...and now my rheumy has put me on low dose prednisone daily for several conditions--one being the costochondritis.  Her reasoning is the entire chest is inflamed for this to hurt so badly.  I asked how "bones" can be inflamed.  She reminded me there is a joint where each rib is attached.  I don't "feel" the collar bone hurting, but upon the doctor's examination, just touching it hurts..a lot!  But it was the sternum pain which got me to ask a doctor about it in the first place.  That pain is what is absent from your description.

I offer this condition as it accompanies SjS, it is prevalent, and ...most of all....you have been seen and dismissed over several other possible explanations.  I was at this rheumy's a couple of days ago for a follow up since being on the 5mg prednisone per day for a month.  I reported crepitus in my chest from collar bone to sternum for 4 to 6 hours each day after I awaken.  I asked if that was possible.  I mean...it just does not seem possible.  She reminded me of the nature of SjS -systemic inflammation.  I stated again : these are BONES.  She reminded me again there were joints there too! 

I am not trying to dx you.  I am just passing along my experience.  Oh...and I have a question:  did the discomfort reappear after prednisone treatment ceased?

Good luck...and hope you are having a comfortable day.
c3

[BKreader]

I've experienced coschondritis. I had chest pain and sternum tenderness. No rib pain. One test they did at the hospital was for me to sit up and press the palms of my hands together elbows out (prayer like) and push hands to together the the opposite where I linked my fingers and pulled apart. Both of these caused pain. The pains were worse at night and I thought I was having heart issues. I was dizzy, short of breath and chest hurt while bending over.  My heart was checked along with chest X-ray. My DX was severe asthma with coschondritis. I have never had asthma in my life. A course of prednisone helped but the sternum/ chest pains look a long time maybe about 9 months to go away. This area seems to act up occasionally and I get swollen lymph nodes in my chest too. I have had one small bout of asthma since and no longer take asthma meds. This event seemed to be the beggining of my downward spiral into autoimmune land and the world of wierd and funky health issues.

You chest bubbling description is bizarre. I'm not sure what to make of it. Good luck.

[jacob87]

Thank you to all of you for your feedback; I have some further thoughts/observations:

1. Asthma -  I forgot to mention i had spiro-something test (apparently for lung capacity), the result was perfectly normal. I don't have any cough or any other typical asthma symptoms, but I will ask my PCP, who knows...

2. Costochondritis - so far that's my best guess. I tried pressing different areas all over my chest. The tender muscles are actually quite close to the ribs. I am not really sure what kind of tenderness is a diagnostic criteria for C-tis but maybe that's related. I will ask my doctor to check it.  I read that moving around, breathing etc. should increase the pain. Did not change anything at all in my case. Today I didn't have this tingling sensation, it was just heaviness and pressure, mostly in left side, for few hours afternoon and then few more in the evening.  The only thing I noticed was, when I was sitting leaning forward and breathing deeply at some point of the inhaling I was getting sharp (stabbing type) pain. When I was sitting in different position or taking more shallow breaths I had no sharp pain at all. Maybe that's related? It's a completely different pain than this long-term tension/heaviness, but maybe it has something to do with my ribs.

I am OK with either diagnosis, I just still hope it's not heart related. Despite all the cardiac tests, I still have unresolved issue with unexplained elevated heart rate, and that worries me.It doesn't happen anymore only because I am on extended-release betablocker 24/7. After all, without the tingling sensation some of the symptoms match angina or myocardial ischemia...

I see dr on Friday, hopefully physical exam brings me some answers!

[Head2Toe]

I would be interested in what your doctor says.  I've had rib pain (one or both sides, depending on the day) that has caused me significant pain/misery off and on over the past couple of years.  Very painful to touch/pressure and often feels 'tight' - but does not hurt while breathing.  Wearing a bra is pure torture because of the constant pressure - and I'm always tugging at my bra for moments of relief or attempting to shift it away from the pain points.  X-rays have confirmed no tumours or fractures - although there is clearly a lump that can be felt in one place just under my left breast (on the rib itself).  Diagnosis:  Just more shrugs by my doctor...

[Navigator]

There is a virus going around where people get chest infections that last for months.  I had it for two months and had the bubbling sensations you mention.  I did also have a dry cough I thought would be with me for life. The bubbles feeling are indicative of air being trapped in the bronchi, like asthma.  I had one foot out the door to go to the ER at one point.   I too also had SJS flare symptoms.   It went away on its on but I had a CT scan with contrast, Chest X-ray and spirometer test (by the time that happened I was over most of the symptoms) and they all came back normal.  Not to say you should ignore it. I would go to your PCP for a workup.

[cccourt1942]

H2Toe:  The bra irritation was my ongoing problem.  I had breast reduction nearly 20 years ago.  Until I got the Costo- dx, I had blamed it on old scar tissue---even though that didn't make good sense.

Just noticed you have not been diagnosed.  Is the "dr" to whom you refer a GP or your rheumy?  It really makes no diff for a costochondritis dx. My GP is the one who dxed and treated me the first time I even ASKED a doctor about the pain.  Once the rheumy heard then examined me, the meds were administered post haste.

It happens among the general population...not just SjS ers.
ccc

[Head2Toe]

c3 - the doctor I was talking about in the above post was my GP.  I have reported this problem to him at least twice - maybe three times.  When I found the lump (just a few months ago) I didn't trust my ability to judge whether it was real or just my perception skewed by the intense pain.  I had both my husband and a registered massage therapist confirm they felt a lump before I chose to go to a walk in clinic to get it checked.  That GP said he didn't think it was anything to worry about but he sent me for x-rays.  The x-rays were sent to my own GP, and he was the one who read the x-ray report to me.

I had also reported the rib pain to the Internal Medicine Specialist (Nov 2013) and the local Rheumy (Aug 2014), but I don't remember either one of them actually checking it; if they did, they certainly didn't provide a diagnosis.

And of course - now that I'm scheduled to see a new Rheumy in less than a week - the pain is magically 'in remission'.  But based on the pattern over the past few years, I suspect it's a matter of time before it returns

What kind of meds were you prescribed?  Did the meds end the problem - or does the condition still come and go?

[cccourt1942]

H2T:
    What a circuitous course to get to costo-.   I understand it's a common occurrence.  That is, I think most physicians should know it.  You do have to tell someone it hurts though.  That is what was missing between me and my docs!  ha, ha. 

Because you asked (and not in the order they were asked):
1) Does condition come and go:  Yes and no.  If compounded and part of SjS it pretty well stays inflamed all the time as that is the nature of SjS.  (this the rheumy told me)  There are degrees of inflammation.  When inflammation is low, you do not feel it.  BUT..the doctor can "conjure" it.  Seriously.  The first time I asked my GP, she reached up and started at my collar bone (which was NOT the area I was pointing out).  I yelled, "ouch".  And she stopped.  She wrote an Rx for 5mg prednisone @ 2 daily for 10 days.  She told me to save the remainder for bad attacks.  Glad she did.  She knew I was moving and I used those pills for two subsequent times.  New rheumy Rxed me 5mg prednisone daily (I think forever...oh..I am almost 73) to a) get me off Celebrex and b) coshochondritiis.  SHE had felt the same collar bone and I yelled ouch again.  My collar bone has NEVER hurt.  AND..if costochondritis is NOT a condition with SjS, I don't really know. 
2)  Do meds end it:  Again...inflammation IS SjS.  The prednisone will aid me with overall inflammation.  Does the inflammation go away?  No.  The inflammation comes from how the disease attacks our bodies: White cells are attacking our mucous.  It's systemic.  Does the inflammation decrease?  Yes.  Will it always be effective?  I doubt it. 

I am scared to death to be on the prednisone.  The rheumy knows I am.  I have osteoporosis showing in my left hip scan (bone density test).  Pretty serious.  You know what steroids do to you. 

Hope this answers your queries.  Good luck.  I found the dx comforting as it had aggravated me for two decades.  Other than a long ago pleurisy attack (if that is what it was), I held them at bay until just before my dx.

c3

[Deb 27]

Glad you are seeing a Dr. It doesn't sound like the costochondritis I had and also asthma would leave you short of breath. It's best any time you have chest pain to get to a Dr. When I had the costochondritis, I thought I was having a heart attack but you could actually feel the swollen cartilage in my breast bone. I had to spend 8 hours in the hospital while the Dr. monitored my heart enzymes but better safe than sorry. Good luck to you! I hope you get some relief soon.