Costochondritis & Tietze's Syndrome anyone?

[afidz]

I am still waiting to be able to see a rheumy, my money situation is pretty awful right now and haven't had the money to go.
Like I have already said, I am pretty sure I have AS. Half the time I can't breath, i feel like my lungs can't expand the way that they should. I know I need to have this checked out, but being an ex-smoker I am TERRIFIED of being told bad news. But when I take an NSAID, like Advil the discomfort goes away and I can breath a little easier. I know my ribs get inflamed, I can feel the heat coming from them.
Doing some reseacher I found this:

"Costochondritis is a common form of inflammation of the cartilage where ribs attach to the breastbone, the sternum. The inflammation can involve multiple cartilage areas on both sides of the sternum but usually is on one side only."

"Costochondritis can be an independent condition by itself or sometimes can be a feature of a more widespread disorder. Examples of illnesses that can feature costochondritis include fibromyalgia, psoriatic arthritis, ankylosing spondylitis, reactive arthritis, rheumatoid arthritis, lupus, and inflammatory bowel disease (such as ulcerative colitis and Crohn's disease)"

"Costochondritis is distinguished from Tietze's syndrome, a condition also involving the same area of the front of the chest, by the presence of swelling. Costochondritis is not associated with swelling, as opposed to Tietze's syndrome, where swelling is characteristic. Tietze's syndrome is an inflammation of the costochondral cartilages of the upper front of the chest that involves swelling of the joint."

Source: http://www.medicinenet.com/costochondritis_and_tietze_syndrome/article.htm

Does anyone else experience this?

 

[Clash]

C had costochondritis before dx. He has CD and SpA-AS. He hasn't had it since diagnosis.

I've had it but I don't have CD or AS. It was so very painful and I had trouble taking a full breath because it hurt so incredibly bad. I was put on NSAIDs and it cleared up quickly.

 

[afidz]

Other than NSAIDs, was there anything you found helpful?
I am taking Humira today if Fed ex ever decides to deliver it (they have had it for 3 days!) and taking that usually starts to help me feel better withing a few hours, but I am really struggling right now.

 

[afidz]

Also, I haven't gone to bed yet, so my brain is foggy. Is it chronic? Or will it get better and go away once I finally start getting my health under control?

EDIT: Obviously, I am not dxing myself, I am just trying to find answers that could lead me to relief. I am mentally and physically drained from the amount of pain I have been in this week

 

[Clash]

For me, I only had to take NSAIDs but I know that is I'll advised for CD'ers. For my son, we didn't know it was costochondritis until the GI pointed out at C's dx that it can occur with CD. This was a couple years ago but I think it was relieved by the pred the diagnosing GI px'ed him while we were waiting to get in with Ped GI and get remicade started. But it has been awhile so my memory is fuzzy, sorry wish I could be of more help.

Since C has since been dx'ed with SpA-AS I've wondered if the costochondritis was due to that instead of CD. His lower back(what we later determined at 1st exam with rheumatologist was actually his SI joints) had been hurting since dx of CD.

 

[afidz]

Where would you feel pain if the SI joints were inflamed? I am TRYING to pinpoint the source of my pain, what I have gone through this week is not like anything else I have ever felt.
That link above says that it can be caused by either AS or CD, so it could of been the combination of the 2 in regards to C
He is doing better now?

 

[Clash]

When we were at the rheumy, she did a physical exam as he sat on the table. When she applied pressure on his lower left side, below back line, he literally came up off the exam table.

We had recently dropped remicade as he was having silent disease progression no matter the tweaks in dosage and scheduling along with the addition of mtx(oral form). She wanted him on a biologic but imaging showed no fusion and he had good range of motion. So while we await the decision on the next step with CD, she px'ed swimming 4x a day and he also did PT in the beginning. She also switched his oral MTX to injection, she said it would not stop the progression of AS but would provide relief until the GI and her could discuss the options for C. Either the swimming or injection of mtx has really helped because C rarely complains about his lower back pain and stiffness. He use to complain daily.

 

[nogutsnoglory]

I have had costochondritis many times and unfortunately not much can be done because I can't have NSAIDS. I find a heating pad and hot tea helpful and just usually wait till it passes. I have fibromyalgia and recently found out many with this condition get this so that might be why. I was told it's harmless but it is scary.

 

[afidz]

Hmm, thats pretty much where my pain is. I did some stretches last night and that seemed to help a lot

I hope that your son is able to get things back under control soon. It sounds like he has a great team of doctors though, detecting a silent flare and jumping on it! There aren't enough doctors like that in the world

 

[afidz]

NGNG I am trying so hard to hide it from everyone, its embarrassing gasping for breath after walking through a room. The last time I brought it up I was in the ER in June and said "I am having trouble breathing, hold on" and the ER doctor said "no you aren't, your O2 stats are normal" as he pointed at the heart rate machine. Thanks asshole. Your right. I am faking it.
Its just something to add to the list. To worry about. Its never going to end.

 

[Clash]

Since C's active disease doesn't show up in blood work the GI relies on FC test and since lately C shows no outward symptoms of CD the GI has requested frequent imaging and scopes. This is how we found the progression.

If you are concerned it is some form of SpA like AS then range of motion exercises as well as swimming can really help. Maybe you could do those until you are able to get in with the rheumatologist. Also humira is definitely one of the biologics that manage AS. Still though, C had the lower back pain the entire time he was on remicade(2.5 years). During this time his schedule was shortened, his dose upped and oral mtx added(to treat his CD we didn't know about the back pain being AS yet) and finally he was placed on high dose remicade- 15mg/kg, none of this helped C with the lower back pain even though remicade is one of the AS biologics. So, I guess, just like with CD, it is about finding that right med or combo of right meds for you.

Good luck afidz, I sincerely hope that all of your pain and suffering will be in your past real soon and you can look forward to a long, deep, stable remission and pain free life!

 

[afidz]

Thanks :hug:
When I did the loading doses of Humira, I felt like a completely different person. I did things that I don't remember the last time I did them. I slept through the night, I just sat up in bed with out any help, crying or pulling on anything. It was AMAzING! Now that I am on the regular doses, I get some relief, but it doesn't last the whole 2 weeks and I don't feel as great as I did during the loading dose. Its actually making me very depressed. I had a taste of something so absolutely amazing and wonderful and then I was forced to go right back to my normal way of living. I almost wish I didn't experience that week of bliss.

 

[Clash]

Is your CD under complete control? Maybe you could get the GI to move the dose to weekly and that might help or adding MTX since it does help some with AS stifness but also is good for CD. All those would be legitimate for the GI to px since they help with CD and AS, but I guess, only if your CD isn't cooperating as well. I know our GI shortened C's remicade schedule over the phone through the GI nurse the first time and then went over the results of that action at the next appt.

 

[afidz]

I am still trying to get CD under control, but for the most part it is silent so I don't really know how badly I am flaring right now. I am assuming it has gotten worse because m other joints have started hurting more, I am exhausted, and I get random bouts of blurred vision through out the day.

 

[afidz]

I took Humira about an hour ago and I already feel better. It seems crazy that it works that quickly. But I'm definitely breathing easier and standing a little straighter

 

[Clash]

That was how remicade was for C in the very beginning. Glad the dose has brought some relief.

 

[Maya142]

My daughters have costochondritis from AS. It's absolutely miserable!

In their case, they are both allowed to take NSAIDs, even the younger one who has IBD (her GI and rheumatologist decided the arthritis is worse than the Crohn's and warrants NSAIDs).
Both are on TNF-inhibitors which have been SO incredibly helpful.

My older daughter is in medicated remission with Humira and MTX. She does have to take the Humira weekly (and so did my younger daughter when she was on Humira).

If you can't take NSAID's you could ask about Voltaren gel or Lidoderm patches. They might help a bit but getting the disease under control with be most helpful.

 

[TammyKathleen]

I've had costocondritis and my GI has me go to the hospital/infusion unit and get hydrated. That usually helps take care of it. Also, if you're not feeling like the humira is lasting for the full two weeks, talk to your GI. The humira lost effectiveness and so my GI went to once a week shots for humira and added methotrexate. That eventually stopped working as well and now I'm on the brand new therapy that isn't considered a biologic- vedolizumab. I wasn't responding to any of the biologics either. So talk to your doctor and see if you can increase the humira or add a second one to it. Good luck!!