Uncommon costo symptoms

Posted , 57 users are following.

Costochondritis is unfortunately, not widely known or discussed and I've got more information from here than my gp.

Although I'm lucky to say I'm 80-90% healed, I've reached a plateau.

I wanted to share some of the less common symptoms I've experienced in my healing process for those who may be scared/confused:

Dizziness

Head pressure on the side of inflammation

(possibly led to a slowing down of the movement in left eye, I now wear glasses to refocus, never had eye issues before)

Headaches

Swollen neck

Tightness in neck

Swollen shoulder muscles

Back pain in the middle of back

Inability to eat

Feeling physically full after half a meal but still hungry

Stomach pain

Burning sensation in muscles

Tingling sensation in muscles

Strange sinking feeling when breathing, comparable to the stomach drop you get in fear/on a rollercoaster or similar but it's more muscular/physical

Sensation of muscles suddenly "deflating" when falling asleep - possibly anxiety related as well

Constant palpitations

Fatigue

Tiredness

Generally weak

Arm pain on side of inflammation

Feeling like I can't breathe

Difficulty walking at speed - who knew swaying arms could be so painful?!

Feeling fine all day but swelling up when you lie down to sleep

Sinus pressure

BONUS: For those who have overcome the majority of the pain

general discomfort/awareness/heaviness/tightness of the affected areas

Feel free to share your uncommon/less discussed symptoms

10 likes, 172 replies

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  • Edited

    Also add to list burning pain in sternum and pain in collarbone too
    • Posted

      I'm sorry to hear that . How are you today . I'm suffering today . Sternum very tender along with ribs and collarbone . Middle of back very sore and tender too

      Even affecting my neck lately . Don't know if it's related to it for sure but seems a bit of a coinsidenc. I seem to get some sort of symptoms everyday

      .

    • Edited

      The back pain to me is by far the worst. Mine is dead centered of my back seems like along the spine... today feels like the left side of my shoulder and arm are extremely heavy.. my sternum also hurts to touch. And I had really bad heartburn with it lastnight that made my anxiety go through the roof because of course I thought that maybe I was having a heart attack, even though I've been told on numerous occasions that my heart is mine, but with the left arm, shoulder and back pain you can't help but wonder. I just wish it will all go away 😣

    • Edited

      Hi I know how you feel . I feel the same too . Wish it would go but it doesn't . Every day I'm suffering in some way . Middle of back and ribs were painful yesterday and so far today it's shoulder and collarbone . So fed up with it

    • Edited

      Hi Ray. I actually just spoke to a dr wen I was admitted in hospital and he said hes had Costro for 8 years on and off now. said he takes motrin and wen its really bad steroids. Neither of these I can take. But it was wild to hear someone from the medical field feel our frustration as well. He said there needs to be lots of research on this condition so they can find a cure for it!!!  We all just have to hang in there and support each other like we do!! Hope your having a good day!!!!  smile
    • Posted

      My Dr also has Costro and his seems to be in a long term remission. I can't take Motrin but he now prescribes Prednisone when I have a flare up and it is like a miracle ... I agree that there has to be research done on this condition. When you talk about it very few people know what it is! I have looked for a study somewhere here in the States, but doesn't seem to be any! I wish I knew of anyone in the medical profession that would give this some serious thought! In the meantime, I will take the Prednisone (even though I don't like some of the side effects)!

    • Posted

      Yup, definitely add those to the list. The first time I had the burning I honestly thought I was having a heart attack despite only being 26 and relatively healthy otherwise....
  • Edited

    Hello again . With

    The palpitations did it ever feel like a brief pause in the heart beat? I have this at times and so many others form my

    Intense research Havd had this as well . will say the symptoms are so darn weird . They go and come ! Also anxiety and panic makes this so much worse which also can cause the heart palp as well so it's a vicious cycle .

    • Posted

      I have had them too . It's dreadful . And anxiety makes things far worse . So fed up as there never seems a light at the end of the tunnel

    • Posted

      Could this be auto immune ? Have you had any test from rheumatologist? I have an apparently my test for sjroans was positive . Not sure if the two are related ? Most ppl have ruled out the heart ok great but has everyone tested for other immune disorders ? Lastly , ppl say it's mechanical meaning the rib hinges are frozen due to injury or some sort of mishap . I can believe that theory as I use to sleep in s dreadful position when my daughter use to sleep in my bed as a toddler . We have to get to the cause .

    • Posted

      Hi Simone. I have that brief pause thing too with my heart beat.. SOOO strange!!!!!  Frustrating too. Just got out of hospital(5 day stay). PM me. How are you feeling??? Hows that back pod working??? Hope you are well.
    • Posted

      Hello Grace ! Not so great past few days . Stressed . ( situation with dad ) stress makes this Costo worse as we know . Ow are you ? Sorry to hear about your hospital visit . I have back spasms so I really

      Think ta muscular . My ribs are inflamed, when I turn certain ways they move

      Out of place. My next step in addition the the backpod is an osteopathic doctor.

    • Posted

      So sorry to hear that Simone. Whats going on with your Dad????  Ive been stressed as well  and burni ng in chest is pretty bad!!!  My anxiety meds help Thank God but nothing really takes this pain away
    • Edited

      Yes! Which triggers my anxiety like no other. I genuinely believe my heart has stopped/skipped a beat whenit happens. It's awful but I found managing my anxiety makes the costo seem less bad because I'm not fretting over the symptoms as much.

    • Posted

      Yes, I agree. It seems the majority of costo sufferers have no cardio issues - they are very unrelated if anything. But I'd like to know if there was a reason some get it while others don't. That may help with a better cure.

    • Posted

      Only a few ECGs on account of anxiety but no general tests. I haven't been back to the docs since diagnosis despite urges from family. 

      She seemed to know what it was right away (good) but merely prescribed ibuprofen (bad). I'm a little anti-pharmaceuticals and it didn't decrease the pain, just stopped me from feeling it.

      I'm considering asking for physio as it helped with a sprained ankle so it may work for this.

      Or maybe get referred to a chronic pain clinic as this has been going on for a year now. 

    • Posted

      Were doctors able to

      Discern anxiety from

      Any cardiac issues on

      ECG? Like it's hard to be

      Calm taking that exam with these Costo feelings ?

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