1. < Chronic Pain

Costochrondritis/ Tietze syndrome

Posted by Fiona @fiona, Jul 12, 2011

Would love to hear from anybody who has any info on this disorder. I get flare ups 5-6 times a year.Costachrondritis has been mentioned but I have yet to get a diagnosis despite MRI and CAT scans and x-rays. Stabbing, sharp pain starts in the left rib cage and within days I have upper stomach and back spasm which is only alleviated by complete bed rest ie. being still. During an attack, just moving my arm in a certain way, or coughing will provoke a spasm. I feel generally unwell , tired and out of sorts. It has been suggested that allergys may set it off.Sometimes when I have an extra strenous exercise session or even cleaning house can start it off. Flare up will last usually 7 -10 days. Cortisone shots into / between ribs on left side have worked pretty well but I dont think that is the answer long term. Anybody know if there is a blood test to look for Tietze? Apparently the difference between that and costachrondritis is actual inflammation in cartiledge...I have also read that the condition is associated with arthritis and auto immune conditions...I am in remission from moderate colitis. Also I noticed during last episode that my hands felt arthritic -sore tender finger joints. I would love to hear from somebody who recognises these symptoms - I am frustrated and bewildered and fed up with this seemingly untreatable and difficult to diagnose condition. Otherwise I am a healthy , engaged and youthful 50 year old! Last question: What kind of doctor does one see to discuss this condition?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Lisa Lucier | @lisalucier | Feb 17, 2019
In reply to @peggy1944 "@I have just joined Connect and already I am greatly impressed. Hope somewhere out there can..." + (show)
@peggy1944

@I have just joined Connect and already I am greatly impressed. Hope somewhere out there can help. I was born with Taybi Syndrome, other craniofacial defects and a moderate to severe "funnel chest," or Pectus Excavatum. All my life--I am 69--I had trouble breathing. First it was diagnosed as Chronic Restrictive Pulmonary Disease, then COPD. Early on I developed some sort of inflammation in my chest cartilage causing severe chest pain, soreness all over and muscle pain so bad I was bedridden. At age about 30 a cardiologist said I had "tstse" Fly syndrome (wrong spelling) which has plagued me to this day. The pain is so bad it is like having a heart attack. (Which I already had. Has anyone else out there suffered symptoms of this bad inflammation and have any answers on relieving the pain? How do other people cope with chest pain unrelated to a heart attack? I would so greatly appreciate your help as I feel so alone. Thank you! Regards, Peggy J.

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Hello, @peggy1944, and welcome to Mayo Clinic Connect. That is very hard to be in such pain, have breathing trouble and also feel alone. I've moved your post into this discussion, "Costochrondritis/ Tietze syndrome" in hopes that you can meet others with this diagnosis and receive support. Please meet @corinna @shshank_gaurv, @grandmar and @virtuous69, who may have some insights for you, especially on relieving the pain. @merpreb may also have some input.

Just to confirm, you also have Rubenstein-Taybi Syndrome, https://ghr.nlm.nih.gov/condition/rubinstein-taybi-syndrome?

What treatment have you undergone thus far with the Tietze syndrome? Has it helped you at all with the pain?

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Merry, Alumni Mentor | @merpreb | Feb 18, 2019
In reply to @peggy1944 "@I have just joined Connect and already I am greatly impressed. Hope somewhere out there can..." + (show)
@peggy1944

@I have just joined Connect and already I am greatly impressed. Hope somewhere out there can help. I was born with Taybi Syndrome, other craniofacial defects and a moderate to severe "funnel chest," or Pectus Excavatum. All my life--I am 69--I had trouble breathing. First it was diagnosed as Chronic Restrictive Pulmonary Disease, then COPD. Early on I developed some sort of inflammation in my chest cartilage causing severe chest pain, soreness all over and muscle pain so bad I was bedridden. At age about 30 a cardiologist said I had "tstse" Fly syndrome (wrong spelling) which has plagued me to this day. The pain is so bad it is like having a heart attack. (Which I already had. Has anyone else out there suffered symptoms of this bad inflammation and have any answers on relieving the pain? How do other people cope with chest pain unrelated to a heart attack? I would so greatly appreciate your help as I feel so alone. Thank you! Regards, Peggy J.

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Good morning @peggy1944 and Welcome to Mayo Connect. I am so sorry that you are in such pain. Have you ever heard of costochondritis? I had it once and the pain that you are describing certainly sounds like it. It really is excruciating. Many things can cause it. I just took anti-inflammatory meds. I also rested, a lot. Have your doctors prescribed any medicines for your pain? Have you told your doctor that you still hurt? It can take some time for it to heal. I hope that this helps. Please let me know how you are doing.
https://www.nhs.uk/conditions/costochondritis/

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1 reply
peggy1944 | @peggy1944 | Feb 20, 2019
In reply to @corinna "I have had Tietze since I was 19. I am 48 now. For years I was..." + (show)
@corinna

I have had Tietze since I was 19. I am 48 now. For years I was always told to take Motrin. About 15 years ago a specialist told me to try Evening Primrose oil. Found in the Pharmacy. Omgosh it worked on the very first day of trying. It flared up today so I lay down and it went away. Evening Primrose oil worked like a miracle. What a relief.

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So glad you found such relief! I heard of Evening Primrose oil but don't know anything about it. Good luck! Sincerely, Peggy

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peggy1944 | @peggy1944 | Feb 23, 2019
In reply to @merpreb "Good morning @peggy1944 and Welcome to Mayo Connect. I am so sorry that you are in..." + (show)
@merpreb

Good morning @peggy1944 and Welcome to Mayo Connect. I am so sorry that you are in such pain. Have you ever heard of costochondritis? I had it once and the pain that you are describing certainly sounds like it. It really is excruciating. Many things can cause it. I just took anti-inflammatory meds. I also rested, a lot. Have your doctors prescribed any medicines for your pain? Have you told your doctor that you still hurt? It can take some time for it to heal. I hope that this helps. Please let me know how you are doing.
https://www.nhs.uk/conditions/costochondritis/

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Hello Merry! Sorry I took so long to reply. Am so glad somebody else has this condition and can talk about it. That didn't come out right--rather, I am so glad there is help and support available in such a caring way. I was ignored for so many years; even called a hypochondriac by my family members. Having a severe "funnel chest" and restricted breathing is my main trigger. Finding a good doctor is vital. Also have peripheral neuropathy, herniated disc in my back and cervical spine and arthritis. I had a neuro stimulator put in a few years, get epidurals and was prescribed a Fentanyl patch, and take Neurontin and Tylenol. A great pain reliever is sitting in the tub and pouring hot water over my chest, and rubbing lidocaine lotion--Aspercreme--on my chest and other body parts. Works great! Thank you, Lisa and everyone else for your help! Regards, Peggy

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Merry, Alumni Mentor | @merpreb | Feb 24, 2019

Good morning Peggy- I can't imagine what you have been through. How are you moving forward with all of your problems? Do you have a secret? Let me ask you- do you have a good doctor? I imagine that you have run the gamut of treatments. Does a hot water bottle or electric heating pad help at all? Has PT helped? Has your doctor mentioned corrective surgery?
For all of us who are not familiar with : https://www.mayoclinic.org/diseases-conditions/pectus-excavatum/symptoms-causes/syc-20355483

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1 reply
peggy1944 | @peggy1944 | Feb 26, 2019
In reply to @lasirvent "Look into MALS" + (show)
@lasirvent

Look into MALS

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Hello lasirvent! I can't believe what you said about MALS--I do believe I have this too, with all my birth defects on top of Tietzen and costrochronditis. I can barely eat, and can't gain a bit of weight, among other things. Endless pain in my upper stomach and center of my lower rib cage. I am soon going to have cataract surgery, another epidural in my spine, plus more medical co--pay. I will check out a new gastroenterologist ASAP. Thank you so much for the post! Regards, Peggy

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peggy1944 | @peggy1944 | Feb 27, 2019

Thanks for the suggestion! What is the proper spelling of MALS? Can't spell to save my life. I am sure I also have MALS, the symptoms and pain are all there. Thanks again. Peggy

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