Is this Tietze's Syndrome"

Posted , 4 users are following.

Over 2 years ago i started having side pain.  At first it was just in one spot at the very end of my rib cage and it literally felt like i was being stabbed in the ribs.  It wasn't consistent and at first was painful but maybe just a 6 on the 6-10 scale.  The day before i had been fishing and caught a large fish and by accident stuck the pole in my stomach and used that for leverage for a short period. 

I went to my doctor and based on the location they sent me down the rabbit hole of GI specialists.  I have had tubes up and down me and they found all sorts of stuff but nothing related to side pain or remotely close to my stomach.  

Next came the lab work and the checking of my spleen and all other organs that reside in your torso.  Everything came back normal.

Then came the chiropractors who all made me feel much worse that i actually was.  They sent me to acupuncturists next and i even went to see eastern medicine practitioners who rubbed hot stones all over my body with essential oils and who knows what else.

Finally i moved to Tampa where i found an excellent primary doctor and for the first time in this journey i heard the words "i don't know what it is but i believe you and we will work together to figure this out".

He has sent me to several specialists and finally, i broke down and allowed him to send me to a pain management doctor because the gabapitin and steroid shots into my back and cartridge wasn't enough anymore.  

At this point i had had x-rays, cscans, Ultrasounds, and finally an MRI of my thoracic spine and ribs all coming back as normal.

I requested a neck MRI and everyone i spoke to said they could not be related because the neck nerves only control the arms and shoulders.

My results for my neck revealed i have a herniated disc with the rupture of the lining causing it to sit on a the external nerves of the transverse processes of the vertebra, I have scoliosis of the neck, and bone spurs all from c4-c6.  I was told to go see a neurosurgeon who literally walked in, picked up my hands, asked me where the worst pain was (which i said was my lower rib cage), glanced at my MRI images and said everything is age related (I'm 43) and sent me on my way.

I only meet about half of the symptoms of Tietzies.  My pain level has increased now to the point that the stabbing will knock me to my knees from the pain.  Pain pills dont help.  I now have pain that extends from my entire left rib cage up though my shoulder and part of my left arm that even with pain meds i sit at a constant 5 in pain and sitting is impossible for me.

ANY ideas welcome because my next move is to check myself into the Mayo clinic if they will have me.

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4 Replies

  • Posted

    I empathise with you. Mine has only been a mere 18 months! Like you I have been through all the tests (ultra sounds, tubes up and down, X rays, thoracic MRI etc ) and also like you mine started as a relatively minor niggle under my left rib area. It's not life threatening so once identified, you're left more or less on your own to cope because no one really knows what to do. My GP has been very good, but has exhausted everything he can think of. I've been prescribed many different painkillers but after suffering with the side effects, I'm reluctant to take them until absolutely necessary. All lotions and potions have made little difference. I've tried eveything - deep tissue massage, acupuncture, chiro, physio pod massage machine, all the anti-inflammatory diet advice, and the Backpod (which gives me relief, but hasn't cured me ... yet!). Next week I'm giving Osteopathy a go!

    Anyone who has Costochondritis will know that it is a life changing condition and I feel that only those that have it fully understand. Luckily I have a very understanding husband who has been superb during this whole nightmare, but even he is at a loss to understand, though is very supportive. It doesn't help that prior to this I was a fit and active person, always 'on the go' which is why it seems to have hit me so hard. It has completely floored me. I wake up tired and most things are an effort. Pain makes you so tired. Anyway, that's my rant over!

    So what can be done? What's helped me lately is for about the last month, everyday I have set myself a routine which I've put together from advice given on various You Tube videos, and for me it seems to be giving me a glimmer of hope that I will get better eventually. I can now moveall my body and breath without whincing, I would say I have fully mobility again now, however, pain eventually comes after movement, either a few hours later or the next day. Here's my routine which I have done daily for at least a month without fail:

    (These 4 stretches are for 30 seconds each side, done gently and slowly, first to the R then to L)

    - turn head to look along shoulder

    - ear to shoulder

    - 45 degree down head turn.

    - hold clasped arms in front at chest height and rotate torso

    - stand in doorway, arms holding the sides at 90 degrees, and lean forward for 30 secs. Repeat again after moving the arms a few inches up, and repeat until you get to the top of the door frame.

    Exercise bike - 30 minutes not holding handlebars

    Slow and gentle Yoga-like floor exercises for about an hour stretching all my body parts, not just the chest area, and taking small breaks between.

    Yoga deep breathing while lying on the floor for 10 breaths followed by tensing and relaxing each part of my body working up from my toes to my head. Then put on soft music and relax for 15-20mins.

    Once or twice a week I use my Backpod just to keep things supple.

    Afterwards, I feel so good and I'm gaining more and more mobility. I can even sit in a car better now and have much less pain than I used to; I hardly even notice I have the seat belt on nowadays. I feel that this is due to gently working my core. In the early days I was told to rest and do virtually nothing (not carry a bag, peg washing, raise arms etc). Being desparate to get better I carried out the instructions to the letter, but I feel that this did me no good at all, both mentally and physically. I feel that my muscles really need rebuilding, but can only be done very gently or I'll be back to square one.

    So that's what seems to be working for me, and it's keeping my weight constant. The fact that I feel I am working at getting better keeps me going. Of course I still have bad days and low moments, but I am noticing some progress. Trying to keep positive is essential, and avoiding stressful situations.

    Please share anything that you find works. I hope my input helps you, even if it's just to know that there are others that feel your pain.

    Good luck. Chris.

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    • Posted

      thanks Chris.  I am so reluctant to give in to it yet.  I have so many other issues with my body such as my neck, hip injuries, shoulder injuries...and yet instead of looking for anything else they just want to lump me with a non-curable syndrome for life.  My situation is getting worse and worse to the point that i am scared i could be wheelchair bound if i dont get an answer.  I do find exercise helpful but now with my neck i am freaking out to move to much.  I just dont known.
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  • Posted

    I feel the same way and after taking all over the counter pain meds my doctor prescribed Nortriptyline. It focuses on nerve pain and it made life better for me. It is actually indicated to treat depression if given at a higher dose. For pain management it works well and am able to do more things now. I have good days and bad days depending on my activities, the pain level definitely went down but still persists some days ok, some days I feel pressure on my lower ribs, bad days are when I have pain front, back, shoulder, arm.  
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    • Posted

      i have been on Nortriptyline as well as Anitripyline and both cause HORRIBLE weight gain.  Not the kind i associate with vanity...50 pounds in 6 months!  I am on gabapitin now which is great but causes such bad memory side affects i can only take 600 mgs and be able to work (i am a computer person thank god so i can work from bed)
      Report Reply

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