Complex symptoms

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I was diagnosed with costochondritis at an Urgent Care a few years back. The really painful symptoms seem to come and go - right now I am having horrible symptoms that I think are the costo, but I really need to connect with people who get it and can hopefully relate.

My current (well, past) doctor heard "chest pain" and she immediately focused on cardiac issues. Would (will) not see or talk to me until I have a stress test with imaging at $4000. I've told her about the pain and she blows me off. I am sooo frustrated because I've had this same experience with other doctors (and not just about the pain) and feel completely alone.

I have soreness (like bruising) in my ribcage on both sides, my sternum, legs and arms. Chest pain that is aching - on both sides but predominantly on the left, along with neck and collarbone pain. It also hurts mid-back. And in bed - really bad when I sleep on my side.

I'm seeing a massage therapist who does myofascial release and it has helped. Taking ibuprofen. Using ice, which probably helps the most. But I have NO medical support. It's scary and frustrating.

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  • Posted

    I also have been diagnosed with Costo. Have the same pain you are experiencing especially when laying on my side. Comes and goes. My mother died from heart issues in her 50's, so it gets scary. All those tests are so expensive. I had the stress tests without imaging and they couldn't get all the imaging they needed because chest is too small inside. They wanted me to redo with the dye but I said no. Have a 6,350 deductible. I think trying to find the right physician is the key. Good luck and I hope you find answers.

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    • Posted

      Thank you, debra! I appreciate your response and sharing your experience.

      My deductible is $5000 but I'm not sure I'd have the stress test even if I could afford it (except my doctor won't talk to me until I do). It's so hard to get them to hear you!

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  • Posted

    HELLO Diane , I can sympathize with you and the pain I have the same thing and mine is always on both sides. It hurts worse when I am in bed and trying to sleep. I also had the stress test and have seen many doctors with no relief . I have done extensive research and find that this can last for a very long time. I keep wondering how I got this with no answer. I read on another discussion about using liquid ibuprofen that seem to help this person! I will try this and get back to you. I am going to try massages and have also been going to a chiropractor which helps some!

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    • Posted

      Yes, I have trouble getting comfortable when I sleep - I never even imagined it was the costo. Hadn't even thought of it...it really helps knowing others experience the same thing.

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  • Posted

    I can relate. I've had Costo for about a year now & it's an ongoing challenge to say the least! Concerning what you are going through, first of all I would have to say absolutely find a new doctor!! That is absurd... yes, Costochondritis is difficult to diagnose but any decent doctor should be able to do so by process of elimination. I'm very fortunate to have an incredible doctor and this is how he diagnosed mine.

    He told me that it's done by eliminating what is 'not' causing the symptoms... well, there is more involved but basically this is it. A stress test should not be necessary for a knowledgeable doctor. I was sure mine was heart related, as I had never even heard of Costochondritis before. I went in and he did an EKG and did an extensive hands-on examination, and asked many questions, all of which revealed Costo & he was right of course.

    I know it isn't much help to just say to find a new doctor but I do think it's essential, especially given the attitude of your current doctor.

    As for my experience, I've tried many things that have worked for some folks here & on other Costo sites I belong to... what has helped me, although not cured me, is Curcumin and fish oil. But both must be high dose & high quality... there is info online that gives full info on these things.

    But... in the last 2 weeks I may have had a breakthrough! I'm hesitant to say so because in the past I have had periods of about 7 days (at most) with no pain when I thought it was gone, but it returned. But I have indeed solved one of other my major symptoms & since I did I've also had no pain (except a day or two of very minimal pain) in 2 weeks, the longest ever.

    I'm going to post a general account of this later but I'll summarize it here, just in case it may be of some help. When I got the Costo , along with the pain I was having stomach problems. I had indigestion and I couldn't digest food well & had to start eating very little at a time, and in time I realized that I could not digest or utilize protein at all. I began losing weight, especially muscle mass & just felt bad, in addition to the awful pain in ribs & sternum of course. Well to make a long story short... it turned out that I have 'low' stomach acid, not high like I had thought. In my research I've found several accounts of others with Costo who have reported this as well, but didn't know what to make of it.

    Fortunately the remedy for low acid is much easier than for high: you simply take Betaine HCL (hydrochloric acid) with every meal containing protein. I did this & it worked wonders... basically, I can eat again and feel much much better. And unexpectedly, after 2 or 3 days my rib & sternum pain is gone as well!! So I'm wondering if there might be a connection between Costo and diet, protein, low stomach acid, etc. There is such little real knowledge about Costo, even among doctors & specialists, the cause is not totally known but there are so many theories it can drive you crazy.

    Looking back, I realized that my stomach issues, problems eating protein, low acid, etc, actually began before I got the Costo pain. I had assumed it was caused by the Costo somehow but maybe it was the other way around: having my system deprived of protein & having the low acid, etc, might in fact have caused the Costo! Well I don't know which came first but I do know there is a connection, for me at least. As I said, this is just a possibility... it may just be the case for me, but I'm sharing it on the chance that others might benefit.

    So I believe it's at least worth it for those with Costo to check your stomach acid to see if it's low and if so, try fixing it with Betaine. This may not be valid for some and yet may be for others, I don't know. All I know is that since I fixed my low acid my Costo pain is gone... going on 3 weeks now! I'm also taking the Curcumin & fish oil but things have changed more drastically since I fixed my low stomach acid! It certainly can't hurt to check it out.

    Excuse this overlong post... seems I write too much or don't post at all. Anyway, hope this may help someone. I will post a follow up on this after some time has passed.

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    • Posted

      I'm just amazed at all the things I am learning here. Sometimes (most of the time) I think that it's all in my head because none of the doctors I've seen - save for that one at Urgent Care - have ever once mentioned it. And when I say anything, they look at me like I have 3 heads.

      I'm definitely going to find a new doctor!

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  • Posted

    Well, I can certainly sympathize with the reaction from your doctor. I had a doctor who was the same way. When heart problems were ruled out, he actually accused me of lying to try to get out of going to work! Needless to say, I changed doctors. Even still, it's hard to find someone who will take this seriously. I was on short-term disability for 3 months about 6 years ago because I couldn't type on a computer without excruciating pain from lifting my arms. I know everyone involved thought I was faking it. After all, all I do is sit in front of a computer. What they don't realize is that our chest muscles are involved with lifting our arms.

    If I do anything that involves my chest muscles (even something as simple as opening a new package of cereal), I'm feeling the pain a few hours later. With me, it all depends on if I do something that taxes the muscles around my sternum, and yes, at times it does feel like I'm having a heart attack. I've had the pain radiate to my back and arms. I've lived with this for many, many years and it's caused me to have panic attacks and everything else, but after a while when you realize it won't kill you, you just do what you have to do to keep it from flaring up.

    I do feel for you, but personal experience is the best teacher when it comes to what works best. I wish you well. When lying on your side, try holding a pillow and keeping it between your breasts. That's the ONLY way I can sleep on my side.

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    • Posted

      Thank you for this, Iris! I have the exact same symptoms. Also, thanks for the tip about sleeping. I'll definitely try that!

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