17 year old daughter with Tietze's syndrome....HELP!!!

• By MarieTwinTubes
• Posted August 21, 2008 at 5:36 pm
• Report post

God bless your daughter and all of you. I don't have any solutions but just want you to know someone cares. Marie

• Reply

• By SickOfBeingSick
• Posted August 22, 2008 at 1:55 pm
• Report post

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

• Reply

• By hcb324
• Posted August 23, 2008 at 12:13 pm
• Report post

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!

• Reply

• By barry100
• Posted September 10, 2008 at 2:58 pm
• Report post

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.

• Reply

• By happyamcurran
• Posted September 15, 2008 at 6:36 pm
• Report post

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.

• Reply

• By sheila_r
• Posted September 16, 2008 at 10:08 am
• Report post

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.

• Reply

• By sheila_r
• Posted September 16, 2008 at 11:36 am
• Report post

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.

• Reply

• By sheila_r
• Posted September 16, 2008 at 11:45 am
• Report post

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.

• Reply

• By barry100
• Posted September 16, 2008 at 6:27 pm
• Report post

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.

• Reply

• By akmom
• Posted October 31, 2008 at 2:54 am
• Report post

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.

• Reply

Add to the discussion