Diagnosed with Tietze's Syndrome
Posted , 5 users are following.
I was diagnosed with Tietze's Syndrome yesterday by a Rheumatologist and have been panicking that I will never get rid of this.
He advised that I need to try Theraputic Ultrasound as it is meant to be good for the joints and loosen them up, which in turn should begin to get rid of the syndrome.
Aswell as the above syndrome, I have been experiencing sore hands, elbows and jaw. I've also been getting really bad muscle twitching, which im unsure if it is related or not, the rheumatologist did not say if it was or not!
I have been suffering with these problems for approx three months now, originally ending up in A&E thinking I was having a heart attack.
Im really hoping someone out there has a positive ending to this problem, as all I can think about is being stuck with this for the rest of my life and I'm in absolute agony at the moment!
0 likes, 3 replies
susan74911 James2108
Posted
Hi James,
I feel for you. I have had costochondritis for 18 months, but the good news is that things are starting to improve for me. Mine started after I had pericarditis and pneumonia, so I too ended up in A&E thinking that I was having a heart attack.
I was referred to the refractory angina clinic and that is where I got the diagnosis. It is basically a pain clinic specialising in chest pain, and I have been going there for about 8 months now. The emphasis is on pain relief, and it has been down to trial and error till we found something that worked. I have been prescribed a synthetic opiate called Tapentadol after having bad reactions to lots of other drugs. I can't tell you the relief I feel now! I have been taking this medication for about 6weeks and I can now walk without getting out of breath. I feel much more like my old self, I can sleep and I am starting to enjoy life again. Now that the pain is under control I am improving my fitness, and the depression that I was feeling is now going away.
It didn't help me to know that I wasn't having a heart attack because I was in so much pain, so I was thinking that I would have been better off dead. I know that is a terrible thing to say, but that was how I felt. I had to take a medical retirement because I was unable to work, so I don't underestimate the effect of this illness. In my case, once I had the pain under control everything else has been better. I have a number of other chronic health issues, but it was the costochondritis that made everything so difficult. I worried about taking opiates, and certainly if other medications had worked I would have been happier, but my GP said that he has patients who have been on opiates for 30 years and they manage OK. I had to reduce the dose because I was having blackouts, but I am not having any side effects from the current dose. It is likely that I will have this for the rest of my life, so I will probably have to increase the dose again, but it is a small price to pay for the way I feel.
I hope you get some help soon. It is very difficult to cope with until you find something that works. I was also advised to try meditation, which has helped, and also chair-based yoga, which I didn't find useful, but I might now that I am not in so much pain. Anything that you have to concentrate on can distract your brain from the pain. I knit if I was in pain in the middle of the night, and at the pain clinic they said that anything that blocks the pain receptors would help. Netflix helps some people!
Good luck!
rachel1961 James2108
Posted
Have been looking for a support /discussion group for a couple of months now. Have had tietze since June last year but only diagnosed in January when I went for breast cancer tests. I also had usual chest xrays CT scans etc.
So far I have not found anyone with a positive end to this dreadful condition. All my doctors say is it will go and take ibuprofen. I did get them to try me on Co codamol which was no good. Have finally got a GP to agree to me trying amatriptaline but after 3 weeks there has been no change, though I do sleep a bit better. Has anyone tried a chiropractor or any alternative treatment that has at least helped?
I have turned from someone who was happy content and enjoying life to a miserable old cow who doesn't want to do anything.
I am waiting for appointment at pain clinic for steroid injections but also read these do not really help.
susan74911 rachel1961
Posted
It was the pain clinic that helped me. I didn't have any success with the steroid injections, or TENS but they kept trying different things until we found something that worked. For me, I feel like myself again now that I am taking opiates. The pain has almost gone (after over 18 months) and I can walk again. Most of all my mood has lifted so that I am not the grumpy old woman sitting complaining that I felt I had turned into!
I know it's hard, but keep on with the pain clinic and they will take it seriously. My GP is lovely but he didn't have any suggestions for treating this, so I think the pain clinic is the answer. They can prescribe things that GPs can't. Good luck!