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Costochondritis and general joint pains

Posted , 6 users are following.

kez16
kez16

My first bout of costochondirts was 9 years ago (the latest being January this year). It is one of the most painful expereinces of my life. During the first bout the pain radiated from the sternum across the chest (ribs) to the shoudlers, into the scapula and down the arms and hurt like bilio when breathing, moving, dressing, coughin, driving - every move hurt and it changed my life forever and needed a lot of support during this time. I was off work for 9 months, tried every pain relief that was prescribed and eventually ended up on morphine patches and steroids. The steroids eventually resultsed in me being diagnosed with osteoporosis as well. I continued to get better slowly and eventually got back to work (with adaptations) but have been troubled by on-goign shoulder, arm and neck pain ever since. Nevertheless the costo pain did eventually reduce over several months and fully went after about 2 years. Over these years and recently during a furhter bout following a minor fall i have found the best pain relief I have got is from: accepting REST to help recover, ice packs (not heat as this causes more inflammation) acupuncture, polar (biotone) lotion and (take a deep breath) stinging nettles applied directly to the area (obviously use on a small area at first to ensure no allergies to them and). Nettles are a natural anti-inflammatory and have helped me more than any pain relief but the nettle tablets, tea and lotions do absolutely nothing so it has to be the real macoy. I have also been seeing an amazing physio for back and neck pain and this seems to have helped settle my nerve pains down the arms and shoulders out, along with exercises known as 'Neural flossing'.  I am currently trying Organic Gelatin so will let you all know if this helps too. It really does get you down and you feel its never going to let up and life will never be the same again. I had a very active life and it stopped overnight. However, it will in time improve but you always have to be careful that you dont do anything to further aggravate the costo as you are prone to it once its happened once.   Good luck to all you fellow costo sufferers - your not alone in this!

4 likes, 12 replies

12 Replies

  • caitlin39841
    caitlin39841 kez16

    Posted

     Hi Kez. well that post made me sit up & take notice as i thought i was the only one that had CorticoC. so severley. your descriptions fit mine almost exactly, except mine's responded to Nortriptyline 10 mgs. when it was eventually diagnosed. no other anagesic touched it.

    i'm so sorry to hear that yours has been much more difficult to treat, but it seems that you n  have found a way to optimally manage it through trial & experimentation. my pain was so severe that i thought it was a Myocardial Infarction  (heart attack). It followed the typical Myocardial Infarction pain pathway & pattern. 

    look forward to hearing how you get  on with the Neural Flossing & the Organic Gelatin.  have to say they are both new to me. must look them up.  i can understand how the Nettles help through the law of similars. 

    best luck

    C

    • kez16
      kez16 caitlin39841

      Posted

      Hi Caitlin..thank you for your reply! Sometimes just knowing your not on your own out there can make all the difference!

      I, too was admitted to hospital for what the doctors thought was a heart attack! It wasn't, luckily but the pain can be excruciating! I have lived in fear for years of it returning so painfully and when it happened over Christmas I was mortified! I actually have a cartilaginous lump just beneath my right clavicle bone which is apparently the inflammation caused from the Costo! Unfortunately nortryptyline wasn't very effective for me but am so pleased it helps you! It's just a case of managing the best we can! I do find being in hot and humid country when on holiday also helps!

      I did eventfully get diagnosed with relapsing polychondritits several years ago which is probably why it gets so severe when it happens! I am working through it but my shoulders are still very uncomfortable and haven't been able to lie on either side for many years now which is frustrating! I just wish doctors understood more about it and could give more permanent and effective pain relief.

      I would recommend the neural flossing for the nerve pains to the shoulders and the arms and it's great for any sciatica pain too! You can see how it's done on you tube! Acupuncture is also very good and was what got me off all the horrible toxic medication over the years! I have since re-trained as an acupuncturist as as I was so inspired by the effects of it!

      Anyway, I wish you all the best with treatment and let me know how you get on!

      Take good care

    • caitlin39841
      caitlin39841 kez16

      Posted

      Hi again Kez.   a massive big thank you for putting me onto the Flossing.  i've just watched a few U/T videos and done the exercises  to loosen up the spinal accessory nerve with amazing results. yes, it hurts initially,  but the freeing benefits are amazing benefits. i shall tell my Doc  (she's lovely & open minded) & she can have a look too. 

      BIG THANKS.

      C

      p.s. i had phoned an Acupuncturist in pain desperation for some treatment, but before i could get to an appoinment, my new GP had diagnosed what was happening & prescribed me the Nortriptyline 10 mgs. with good effects. i may well go for the AcuP. treatment  anyhow as it'll most likely target the cause and rectify whatever imbalance that's causing it. 

    • kez16
      kez16 caitlin39841

      Posted

      No problem - happy to help and totally appreciate the pain you are in.

      As for acupuncture - its worth a try. Its not for everyone, however, it has helped me significantly. There are various types of acupuncture out there and some have had a lot more training than others. To be sure that you see a qualified acupuncturist, who has been professionally certifed etc go on to the British Acupuncture Council website (BAcC) as they give a list of fully accredited professionals in your local area.

      Best of luck! 

    • heathermarie412
      heathermarie412 kez16

      Posted

      Hi

      So grateful to you for posting your story. I've been diagnosed with Costo for 6 months and it seems to come and go with varying degrees of pain! Using naproxen and heat/ice at the moment with some success but I've been really worried about the pain in my left shoulder and the fact that I have a bump just where the rib and cartilage meet on my third rib! Your story has really put my mind at ease because I've never seen anyone else with such similar symptoms. So sorry you've had such a bad bout of it but thanks for sharing all that you've tried! I'm going to research the gelatin and flossing now and see what else might help! Any other tips gratefully received. 😊

  • Auntyanne
    Auntyanne kez16

    Posted

    I understand all what you have shared. When a flare-up happens you feel confused at times or maybe frustrated. Sometimes you can't identify the reason why. Rest helps and making sure rest happens even if you feel fine.

    Thank you for sharing your experience

    • kez16
      kez16 Auntyanne

      Posted

      Absolutely! Its difficult to rest when you are used to being active, however, when the costo flares up acutely you cannot do anything but rest and can be extremely frustrating cant it?.

      Take care.

    • Auntyanne
      Auntyanne kez16

      Posted

      Tetzie syndrome I have, the pain lasts for weeks at a time. The tightness in front of chest is there most of time. I get tired very quickly. I do light yoga to help keep chest open I find it helps me. We all have ways to cope, I still work but need rest days I get wiped out 2 days in work.
    • kez16
      kez16 Auntyanne

      Posted

      Tiredness is a huge problem isnt it? I have had to reduce my days to 3 days per week as the pain gets too much if I dont. I too have the pain for weeks, even months at a time. This last bout lasted 5 weeks and a chest infection on top of it delayed improvement. Although, i did have several days during that time whereby the pain was much more tolerable than it used to be when i had flare ups. I am relieved to say the pains in the chest have almost gone now and just have the bilateral shoulder, neck and back pains and the area between the shoulder and the sternum remains tender and feels torn some days if i do too much.

      I must try Yoga as i am so scared to try any form of exercise as everythign flares it up. I have considered pilates too but worried that will be too intense?

      Thank you for sharing!  

    • Auntyanne
      Auntyanne kez16

      Posted

      I used to do Pilate's but changed 2 years ago, I find the yoga better the breathing helps with pain, I go to a class with older ladies not a mad yogi class. Finding what right
    • kez16
      kez16 Auntyanne

      Posted

      Thats great,  I may just have to take this up.

      thank you!

  • uclabelle
    uclabelle kez16

    Posted

    It is really good to see this Costo community online. My name is Danielle Whitney, and I also have costo; while some have it and are unable to know why they have it, I am able to attribute mine to moderate-severe pectus excavatum (after a heart operation as a child, and subsequent sternal wire removal and repair surgeries). Sadly it has been in and out of my life, but recently has become debilitating to the point I am on long-term leave at the young age of 30. I am well educated, and very determined and Costochondritis has really ruined my spirits. Sure, I have good days, some days I can drive, and browse stores...but I really cannot shop even. I struggle to breathe most days (my pulmonary function tests decline, in lieu of even staying stagnant). I sleep with lidoderm patches, and replace in the morning, use 24- pain meds (which drastically impact my cognitive abilities and mood), anti-inflammatories...I have tried massages, eastern medical suggestions down to tea types and foods...surgical options are available to some, but all surgeons have declined the operation on me thus far (and it isn't for a lack of trying to get opinions). My husband is a physician, and we feel like this a road block I cannot seem to overcome. A fall last year, down a huge marble staircase made it even worse.

    ​Again, not many recommendations other than the ones previously mentioned, but, again, grateful there is a forum for those with this serious illness/disability that is sadly overlooked in the medical community sometimes (or misdiagnosed).

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