Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's syndrome), for more than 9 months!!! She has had a CT scan done, MRI, and numerous blood tests done...at a respectable children's hospital and we ended up with a Reumatologist, but they can't do any more...
We have tried all the anti-inflammatories at the max dosages and pain meds,but NOTHING is helping!!!! She can't have the steroid injections because they would have to give them to her in too many places!!!
She missed school starting in January of this year and it is now August, with her senior year about to start....she is trying to 'muddle' through and get ready to attend school because she doesn't want to miss it!
If ANYONE could please suggest some more 'avenues' to try, we would be so grateful!!!
We are at a 'standstill' with her treatment because they (the doctors) don't know what else to do...we tried an herbal treatment for her but it made her severly sick: (vomiting,loose BM's, etc.)...
Please ,I don't know what else to try...maybe check on accupuncturist...(She hates the whole idea)....Can someone out there please know of something or some test for her???? Thank you!!!!! -(Desperate for her to continue on with life and furthering her education after high school...)
We are grateful!!!!...Thank you!!!
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17 year old daughter with Tietze's syndrome....HELP!!!
- By sheila_r
- Posted August 20, 2008 at 9:19 am · 26 replies
- In My disease has no treatment
- Shared with the public
Explore topics in this discussion:
Surgery Chronic pain Morphine Rheumatoid arthritis Fibromyalgia Chiropractic Acupuncture Arthritis Aspirin Ibuprofen Tietze syndrome Celebrex Pain Weakness Heart attack Lyrica Neurontin
26 replies
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- Newest first
- By MarieTwinTubes
- Posted August 21, 2008 at 5:36 pm
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God bless your daughter and all of you. I don't have any solutions but just want you to know someone cares. Marie
- By SickOfBeingSick
- Posted August 22, 2008 at 1:55 pm
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i don't know anything about your daughter's condition, but I do have experience with using accupuncture for pain. It was a godsend for me. I would still be doing it today if I had the money.
I can understand your daughter's reluctance, but the "needles" aren't really like needles at all, they are so tiny and slender that I hardly felt them. The whole experience was very relaxating and I walked out of there on a cloud every time.
If your daughter has too many issues with the needle aspect, you might have the accupuncturist use accupressure only the first time around instead of needles.
Also, have you tried Neurontin or Lyrica for pain? They have a different mechanism for pain relief than pain relievers and anti-inflammatories and can be used in conjunction with the other drugs. They act on the part of the brain that actually processes the pain. They should be taken only at night to start out with because they can sometimes cause drowsiness that may or may not go away with continued treatment.
Best of luck to you and your daughter,
Cathy
- By hcb324
- Posted August 23, 2008 at 12:13 pm
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Hi!
I was wondering if the rheumatologist had considered juvenile idiopathic (or rheumatoid) arthritis. I have had JRA since I was 7 (only correctly diagnosed at age 18) and am now 32. I have severe chostrocondriasis as part of my overall inflammation. If the NSAIDs haven't been effective, a rheumatologist may want to try one or more of the DMARDs (disease modifying anti-rheumatic drugs) if they are consideing JRA/JIA. These attack the overall inflammation and disease process, instaed of just the pain.
Please give my best to your daughter!
- By barry100
- Posted September 10, 2008 at 2:58 pm
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I have had this for several years.After spending $30,000 to determine that I had not had a heart attack the only thing that worked was Methylpred 4 mg in the 21 pack. Within 8 hours the pain goes away.
- By happyamcurran
- Posted September 15, 2008 at 6:36 pm
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I would love to talk to you, I am going thru the same things and the doctors are washing there hands of me because they do not know what to do. Please call me 716-228-8642, I need someone to sympathize with me.
- By sheila_r
- Posted September 16, 2008 at 10:08 am
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Hello, So very sorry that you are going through this also....It's very painful and difficult ...it truely is one of the worst things we have ever gone through....haven't ever been through chronic pain like this ...everyday is the same and no relief in sight!!!...
Would love to talk with you , asap!!!
Thank you for your response!!! Hope to talk soon!!! Thanks, Sheila R.
- By sheila_r
- Posted September 16, 2008 at 11:36 am
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to: barry100...Thank you for the reply!!!
If the 'meds' you are talking about is a type of steroid, i think we would rather not try that one because of the side effects... are you having any with that type of medicine???
Thank you, Sheila R.
- By sheila_r
- Posted September 16, 2008 at 11:45 am
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to: hcb324....Thank you also for the response!!!...No, they don't think that it is JRA, but I have asked the doctor about the meds and he has said 'no' so far... now she is on an anti-seizure med... so sick of all this waiting for something to be effective!!!....so far it hasn't helped either!!!...what's new????
Anyway, thanks for the info and the time to reply....hope you are feeling better too!!! Sincerely, Sheila R.
- By barry100
- Posted September 16, 2008 at 6:27 pm
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It is a steroid but I have had no side effects at all. You take them for 6 days 6,5,4,3,2,1. I get relief from the most excrutiating pain within 8 hours. I have had to take them 3 times last year and we are trying to figure out what the cause is. It seems to reoccur whenever I lift something heavy. The meds are not something you want to take your whole life but I cant function without them.
- By akmom
- Posted October 31, 2008 at 2:54 am
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My daughter has been diagnosed with Tietze's syndrome. She is 16. NSAIDS aren't helping. Did you come up with any alternatives? I'd sure appreciate hearing from you.
- By sewingsquirrel
- Posted January 29, 2009 at 11:28 am
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Hi, I've just been diagnosed with Tietze's syndrome after more then a week of numerous tests and examinations. Doctors originally didn't know what was wrong with me, as it's hard to diagnose because its so uncommon.
At 17, its the most painful experience I have ever had. The doctor even said that people compared the pain of Tietze's syndrome with that of heart attack! At present, I have been given strong anti-inflammatories and morphine which sort of work. However, I'm desperately looking for alternatives, as morphine is an unhealthy substance to use, especially if I'm going to have this chronic pain for several months to come.
- By JB123
- Posted March 12, 2009 at 1:38 am
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Story:
I am a 31-year-old female. For several years I have had severe chest pains. I always thought that it was gas. Recently my left breast started hurting and I could feel a lump. Since November I have had a mammogram, sonogram, MRI, 3 CT scans, 4 chest x-rays, PET scan, and thoracic surgery. All of this was inconclusive; the tissue in my lung was some old infection from years ago, and now my chest pain is worse. I expressed this to my surgeon and she said that it was most likely Tietze syndrome.
Remedy:
I don’t like taking drugs and honestly I am way too young to be popping the Ibuprofen. I found that Tai Chi has been the best thing. Since I have been taking Qigong I barely have any pain.
- By JB123
- Posted March 12, 2009 at 2:46 am
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PS: As far as wearing bras... that has been hard for me as well. My Dr. suggested these spandex under shirts from a store called Zara. THEY ARE WONDERFUL!
- By Traveler
- Posted March 12, 2009 at 1:37 pm
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I've had some success with cold laser (LLLT) therapy. Almost no downside (other than the cost which is not usually unreasonable) and often results are relatively quick if its going to work at all. I hope this helps.
- By sheila_r
- Posted March 12, 2009 at 2:41 pm
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Hello, Everyone!!
Thank you so very much for the responses. As soon as we can get my daughter's health insurance straightened-out, we can begin different aproaches to her condition, again!!
We appreciate all the interests and info from everyone! Also, we try to read and respond to them as we can. Unfortunately, her health condition has not changed yet, now going onto 2 yrs....Waiting on her insurance coverage to start again, we can just take 1 day at a time....
She has been able to at least think about other possibilities, mostly due to all of your responses to her condition. Thank you so much...
Sincerely, Sheila R.
- By Shurukian
- Posted April 8, 2009 at 6:17 pm
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I was actually diagnosed with Tietze's when I was 17. It's almost been a year. A good thing, is Maiofacial therapy. (I don't know how to spell it.) It really helps. You just have to find someone who can do the therapy.
- By Barnone
- Posted April 12, 2009 at 4:14 pm
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My daughter has had this since she was around 15. I lived in Kansas at the time and found a wonderful chiropractor that helped her. His name is Michael Cuba in Abilene, Kansas. If you can find a good chiropractor in your area, have them contact Dr. Cuba for treatment information. My daughter is 26 now and suffering from a flair up right now. We now live in Alabama and Dr. Cuba is trying to find her a Chiropractor here that is familure with this disease. He said that if they didn't know how to treat it they could make it worse. Even with treatment it still takes several weeks to help it. Hope you can find the help you need.
- By shortstuff
- Posted May 12, 2009 at 12:02 pm
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how in the world do you do tai chi with chronic pain? I have ra and its a challenge to walk about the house some days ..I couldnt even think of trying something like that...wow
- By shortstuff
- Posted May 12, 2009 at 12:03 pm
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hey traveler,whats cold laser? I have never heard of that and am curious.
- By Traveler
- Posted May 12, 2009 at 12:14 pm
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Cold laser is a therapeutic laser often used in sports medicine. Current versions are Class IIIB and Class IV. My experience is with the newer Class IV laser. There is no discomfort involved (hence the term "cold" laser) and treatment times are very short, say 4-6 minutes per session.
Hope this helps. Good Luck!
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