costochondritis or ?

[trc1962]

I have developed pain in the rib area that grows in the day and then gets better at night. It hurts to sit up or lean to one side or the other. I asked the rheumy and he said it could be costochondritis but he isn't sure. Mine doesn't hurt on the front but on the back and on my sides. I am going to try some ibuprofen but wondering if others deal with this (as I am sure you do).

[Liz D.]

I've had costochondritis three times and it never has hurt in the back, always the front.

Liz D.

[cccourt1942]

Yes---the side.  Mine settles on left side at waist and below --gravitating to back at same region.  I must get flat to breathe.   Been told the sternum inflammation ( at joints) is culprit. If you breathe deeply the chest expands and I can barely breathe.   Painful.  Will send moe info tomorrow. 
C3

[cccourt1942]

I estimate my first costo attack to be about 25 years ago. I was dxed with pleurisy.  Several years later, my doctor commented that it was strange I never suffered another attack.  BUT....by that time (about 20 years ago) I was referred to a pulmonologist for difficulty breathing.  Final dx from that was mild reactive airway disease.  I was treated the same as an asthmatic.

I click along another 8  years and the same strange "breathing" problem would happen but with another or a different symptom...pain.  THIS time I would be given EKGs in the physician's office...and nothing would be determined.  Just a  lot of headscratching.  THEN....about 5 to 6 years ago--the sternum, side pain began.  I probably ignored it at least 3 years.  I did that as I have a Pilates Reformer machine and I equated that pain from "good pain/stretching" from exercise.  I actually added stretching exercises to "strengthen" that area on the sides. 

Then SjS dx, then I FINALLY asked a dr about side pain.  Simple dx:  costochondritis.  I didn't know what it was (could barely pronounce it).  I was in the process of moving, and my GP gave me extra prednisone to reduce the swelling for a future attack in case it reared its head before I found a physician after I moved.  Well the prednisone burst worked...I tucked that med back...and it did NOT occur again for about 6 months.  I took the extra med..and again voila.  At that point I had not looked up the condition.  Out of sight (or body) out of mind.
   
A year passes.  & WHAM.  I had mild discomfort...used heating pad, warm compresses, took some extra prednisone for it (like 5 mg twice a day for a few days) and a little reduction.  This lasted about 6 weeks.  Not bad enough for dr.  I could breathe (if I were flat) I could manage thru a day without writhing in pain, and with a little extra Xanax I could sleep.  In fact that helped the condition by getting a good night's sleep.  Then..THE evening came when it ramped to the max and off to ER I went.  Will skip this event...but for saying they do not dispense prednisone bursts from ER settings.  Pain shots.  within 24 hours I was back as I hadn't rcvd a prednisone burst Rx from my dr.  Again..won't go into that solution...but had the RX called in about same time I was back in the ER.

Long story, eh?  The reason?  One of my drs asked me about the condition while stating he had heard it was quite painful.  I told him that progression of "conditions" I stated at the outset of this.  Right there, he agreed with what I had thought:  I was suffering costochondritis the whole time...all those decades.  The thing is, it's progressive....just as SjS is progressive.  So in early days, one attack which leveled me---then aggravating and pain inducing conditions misdiagnosed as they would zero in on the breathing problems.  When it became what I consider chronic as it rears its head regularly now (at different degrees of pain) it started with that first ER visit at pain level of 10+.   And...the location of that pain?  It changed or moved around over the decades.

Remember:  beginning:  breathing, next came strange back pains not associated with muscle inflammations, next came pain in chest and emanating to side  with inability to breathe deeply (was seriously interfering with my exercise program), then it started  in my sternum...and quickly move to left side between 4-5 and 5-6 ribs...and emanates toward the back maybe not as far around as the spine.  When the pain is so great, it's hard to think clearly.

I carry an emergency Rx for prednisone burst (10mg @ 3 per day for 3 days, 10 mg @ 2 per day for 3 days, 10 mg for 3 days...etc down to 2.5 mg.  In addition, I have to get to an ER for a pain injection.  Pain meds do nothing.  I should say, pain meds offered to me do nothing.  I can take Tylenol after I begin the meds for dull pain..and it helps.

The emergency Rx I carry is like gold to me.  The ER I go to in Dallas hasn't a clue as to what costochondritis is.  I carry a wikipedia explanation of costo.  I was in NYC last month and had to visit the ER.  The good news is they knew what costo was, they explained the necessity of doing the heart checks, etc (I'm 74) but assured me they understood what costo was.  I had been thru the "crash cart" scenario twice before and told them I understood.  In Dallas I had to beg them to just google costo.  Afterwards...and prelim heart tests/EKG, etc, they realized I had no heart probs..then listened to them.  I guess people don't die of costo.    (I would have died in NYC had I not rcvd the pain injection as we were seeing Hamilton the next day.)

Last remark about costochondritis:  It is a condition of inflammation where rib meets joints...and thus fits in "some" of us with SjS.  Not ALL SjS patients suffer this condition.  In fact, it is as common among the regular population as those of us with SjS or so I have been told.

Sjoldier c3

[trc1962]

I have had it in varying degrees over the years although usually it is just an irritant that a hot pad helps. cccourt you have suffered a lot from it for sure and glad you have your emergency medicine on you as needed. The other thing I just hate with whatever is going on now is that my stomach just gets so tight throughout the day, like 9 months pregnant - even if I don't eat much at all. I guess my stomach isn't emptying? I don't know, the doctors just look at me like I am eating ice cream all day from the pred and I am not. It gets a little better at night, but it also helps when I can actually poop (gross I know, but just hardly go). Got my levothyroxine today and hope to start it and maybe it will help....