Tietze syndrome or heart problems? Out of my mind with worry.

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Hi, can anyone please help? For the last 3 weeks I've had on and off shooting pains in my chest and arm some times pain other times it feels like electric type pain! And sometimes up my neck Mostly all on my left side. I went to AE twice with Chest, arm pain and breathing difficulties, first time I had blood tests on heart and EKG all came back Normal and second time EKG done also came back normal, two visits also to 2 different doctors who said, muscle pain, nerve pain, panic attacks anxiety! As they said my heart sounded fine, I'm out my mind with worry as I sit here writing this I have the electric type pain In my chest and I'm a single mum of 3. I've searched the Internet for answers and tietze syndrome is standing out but would I have these symptoms as I have no swelling on my breast bone but it is slightly sore to touch. Thank you very much for taking the time to read this.

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  • Posted

    Hi Lynsey,

    I'm so sorry you're going through this. I have costochondritis and my symptoms are the same as yours. I have had lots of tests (I have had heart problems and am much older than you) but, like you, they have all come back normal. The difference between costo and Tietze seems to be that there is no swelling with costo. I have had this for a year and now I don't worry about having a heart attack.

    All I can say is that stress definitely makes it worse, so once you have a definite diagnosis you may find it easier to cope. I no longer to A&E because I know what is happening. The consultant at the pain clinic has tried me on different meds and a TENS machine. I am finding some relief from using a Butrans patch, which is a sort of opioid. I am going to see a physio on Monday, so will let you know if that helps. I am getting some relief from meditation too, though I was very sceptical that it would work.

    Good luck in getting a definite diagnosis. I can't imagine how hard it must be if you're a single parent and having to deal with this.

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    • Posted

      Thank you so much susan for your reply it makes me a little better as I've been having a really bad evening with the electric type chest pain! I was actually considering going to AE, but it has seemed to pass a bit now, Susan do you get the pains in your chest for seconds, sometimes even anything up to 10 minutes long, thanks again for replying it's such a comfort. Take care and I'm sorry you have suffered with your symptoms for so long, lynsey x

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  • Posted

    Yes sometimes it goes on for an hour or more. The consultant did explain what was happening but it took me a while to realise he wasn't saying it was all in my head! I can't remember exactly what he said, but he did say that it is worse if you get stressed about it because you tense up. That's why the meditation helps ( the same theory as breathing techniques during childbirth!)

    Have you found heat helps? Some people use a heated pad or hot water bottle, but others apparently find that cold helps. It might be worth a try, then if it comes on again you can try that while you wait for it to go off. I would go to talk to your doctor next week and say how worried you are, and ask if they can investigate Tietze's syndrome.

    I hope you are feeling a bit better now. It is very scary while it's happening.

    Good luck getting some answers.

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    • Posted

      Susan you have made me feel much better, as I've read alot about the condition but because I had no swelling or lump others mentioned I was thinking it couldn't be that was what I was suffering even though I had all the other symptoms, and the pain was coming then passing, I'll try the heat/ice tip when it next comes on. Your right it's so scary and I'm sore for a couple of days after what seems to be a attack, my children at home are 14 and 3 so I get scared if anything happens in the night they will be alone. My eldest is at his base Monday_Friday, he is in the royal tank regiment with the armed forces, so you have really helped calm me down and put my mind at rest. Thank you susan, take care and good luck with physio on Monday, x

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  • Posted

    No problem. It must be so hard with younger children at home.

    I think it's the not knowing that is so hard. Now that I know I'm not having a heart attack, I know I don't have to go to hospital, but I was admitted 4 times last year.

    You take care, xxx

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    • Posted

      Thanks again, let me know how you get on, and I'll you you know how I get on with a diagnosis. Take care x

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  • Posted

    Hi Lynsey,

    You have my sympathies. Being a single mother of three can't be easy when you're obviously worried about your condition. On a positive note your children will give you a distraction from your pains. Try to remain positive and distracted, which I know is easier said than done on bad days, but it will help you to cope.

    Firstly you need to get an accurate diagnosis to be able to deal with your pains. After gastric and cardiac sources of my pains had been ruled out, I like many others took to the internet for research. I had a notion that I had Costochondritis, after Googling my symptoms, and suggested it as a cause to my GP. He said it's a possibility and referred me to a Rheumatology Consultant who, through examination, diagnosed Costochondritis. Ask your doctor to refer you. If you are in the UK this should be available free on the NHS. If you are diagnosed with 'Costo' it'll be a weight off your mind. While it is painful, it is not life threatening, even though it might feel like it, and you can start dealing with the problem. In my experience extra stress exacerbates this condition, so you need to try to stop worrying. I've been there and believe me stressing, crying or curling into a ball won't help - quite the reverse will result.

    From the posts I've read sufferers have found a variety of different ways of dealing with controlling the pain. We're all different and what works for one person won't necessarily work for another. When I was first diagnosed, at night I used prescribed painkiller medication (co-codamol) but tried my best not to rely on it. Sometimes on bad days I just had to give in and take it. It allowed me to sleep and, as I saw it, give my body a chance to repair. Lack of sleep doesn't allow this.

    In my early days of Costo, when rest is required, the following helped me (you'll need to experiment and find what works for you):

    Having warm (not hot) baths for about 20 minutes, sometimes two or three times a day.

    Trying to lie down on my back and rest while listening to soothing music with headphones on. I found some 8 hour Healing Deep Relaxation tracks on YouTube and often drifted off to sleep listening to them.

    Supporting myself with a pillow in front if me, gently hugging it, if I wanted to lie on my side.

    Lying down tensing my body, working gradually from my feet upwards, i.e. slow breath in, tense feet (scrunch toes), breath out relax X 3 reps. Slow breath in, tighten calves, breath out, relax them X 3 reps. Finish by tightening the whole body then relax.

    Short walks outdoors. Walking (for me 30 mins) really brought relief as long as I listened to my body and stopped when I started to feel tired and achy.

    Wearing my trainers seemed to help, don't know why, maybe by lifting my rib cage a bit. Very flat shoes or bare feet made my pains worse.

    Having slack, elasticated trousers on virtually all the time. Strangely the soft compression offered by the elastic waistband, if I pulled them up beneath my rib cage, helped. Not a good look, reserved strictly for indoors!

    Eating well. Lots of fruit and veg and no processed stuff. I started to regard my body as a broken machine which because it wasn't functioning properly needed 'top grade fuel'.

    Watching the YouTube video 'How to Fix (most) Costochondritis and Tietze's Syndrome Chest Pain. An excellent presentation is given by Steve August which helped me understand what could be going on inside my body. I purchased his recommended device, and haven't regretted my decision. I feel it offers relief and I feel like it's mending my problem, not just masking it.

    If you can afford it, having a weekly Sports Massage, working mainly on the back to help 'free the hinges'

    I hope some of my suggestions help you. Good luck!

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    • Posted

      Hi, thank you so much for your reply, I'm going back to my doctors tomorrow and will explain my symptoms again as up to now I think they think it's all in my mind!, the symptoms are so scary, when I've researched a costochondritis and also spoken to another lovely helpful lady on this forum I do seem to have all the symptoms of the condition the only things making me worry it may not be is I have no pain breathing in/out, moving / bending around. Coughing /sneezing etc, the only thing I've noticed is I walked up my stairs with a bin bag of clothes earlier and my heart was pounding and I felt abit out of breath, so I'll also explain this to my doctor, amd and I'll definitely be trying some of your techniques thankyou so much, lynsey x

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    • Posted

      Hi again Lynsey,

      I would tell your doctor that you suspect that you have Costochondritis, not wait for him to consider it some time in the future, so that you can get a referral to a Rheumatologist as soon as possible.

      I understand what you mean about feeling that your doc thinks that you're making things up. I'm sure it's not the case. It's because the pains are so random, and shifting from one place to another, that it's so hard to explain, and make you feel a bit foolish because you can't pinpoint them.

      Good luck with your appointment.

      Chris.

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    • Posted

      Hi chris, I'm going to the doctors in the morning, I'm going to explain my symptoms again and about my investigation into costochondritis and about t speaking to people with the condition. no one I've seen medically so far have mentioned the condition as a possibility, so like yourself I think it would be best I mention it to them!, thanks chris for for your time and care I'll get back to you tomorrow and let you know how I get on, hope your well. Lynsey x

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    • Posted

      Hi, sorry to bother you again but if you got the time could you please help with a little information please, I went back my doctors and explained all my symptoms and my investigation. In to costochondritis and she's said it's unlikely as I get the pain in my arm, as explained to her I get it and it feels like someone squeezing my upper arm and tingling in my fingers, she said bcos of the arm situation it's not likely to be costochondritis and has given me beta blockers and spray and refer to a cardiology, I'm out of my mind more now, did you experience the arm pain? plus I do have a tender to touch breast bone!, x

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    • Posted

      Hi Lynsey,

      I am glad you have seen your doctor. I do have pain in my arm but it doesn't seem to be the same. I get a pain that goes down my arm and into my jaw.

      I was given GTN spray too. It may help. If you see a cardiologist it will put your mind at rest because you will know definitely one way or the other whether it's your heart. I had all the tests before they could say that it was costochondritis. If that's what it turns out to be, it's painful but not serious. If they didn't test you might always worry it was more serious. If it does turn out to be caused by your heart, they can do something about it, so it's a good thing. I know you must be really worried, but you have to think how good it will be to finally get some answers.

      I had my appointment with the pain clinic physio on Tuesday. She has recommended doing chair yoga from a You tube video! I am going to do a graded exercise program to try to get back on my feet a bit now that the morphine patches are helping. I will share the details with you if you get a positive diagnosis, but for now I think you should take it easy until you have your tests done.

      Good luck, and try to see this as a good thing.

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    • Posted

      Hi susan, nice to hear from you again, I'm Really glad your morphine patches are making the pain more bearable for you and hope your new exercise plan works in getting u completely back on your feet, I'll try the spray nxt time I get the pain I'm abit scared to take it incase I don't have heart problems and taking this causes them!, and I'm starting to think it's not costochondritis I have myself now as I don't have pain moving or deep breath/coughing etc, I only have rapid heart beats when I go up stairs and I wake with them sometimes in the night time, but I definitely have the electric shooting pains and arm pain and sore breast bone / ribs, but your right susan I'm one step closer to a diagnosis which is a good thing, I have my appointment 2wks today, let me know how you get on with your yoga exercises, wish you luck and sending lots of love xxx

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    • Posted

      Me again susan🙄, but I forgot to mention my pain has been mostly left side but I'm feeling it alot more on my right aswell now, is this normal with costochondritis?, thanks again!, xxx

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    • Posted

      Hi Susan's, just a little message to see how are doing ? Hope you are well, Did you get any comfort from your yoga? Xxx

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    • Posted

      Hi Lynsey,

      That's kind of you to think of me. To be honest, I haven't got on very well with the yoga. The video on YouTube is a bit weird, but I can put up with that. I just found the exercises made my pain worse so I haven't continued with it. I have been doing the graded exercise program though. (I could do one or the other, but couldn't manage both!) You walk on 3 days the first week, one good day, one bad day and one in between, and you record how long you can walk before you have to stop. Then you add the times up and divide by 3 to get your baseline. The second week you have to try to walk for that time every day. When you can do that, then you increase the time by about 15% and keep doing this. If you have a bad week, you go back and start to build up again. I hope that I will be able to improve my stamina. The physio has made me talk to my GP about the fact that I have very little feeling in my hands and feet. I had told him before, but it was overshadowed by other symptoms, but now he has sent me for more blood tests, a nerve conduction test and an MRI, so I am hoping that I will get some answers.

      How are you doing now? Do you have any more results? I hope your doctor has taken you seriously. It must be such a worry with children at home. I wondered if you have a contingency plan for if you are ill? Could you ask the Mums of your children's friends? My eldest daughter was rushed into hospital last year, and now she has an agreement with my grandchildren's friends Mum that she would have them in an emergency. It's easier to do something when you aren't in a panicky situation.

      Hope everything is going well, x

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    • Posted

      Hi susan things not to bad thanks for asking, I did wake up with sore ribs under the left arm area only lasted a few days and eased off but now my left breast is so sore to the touch more than actual pain have you ever experienced this? but I've got a appointment with a cardiologist on Thursday morning so hopefully that will be clear of any heart conditions and put my mind at rest!, I'm so sorry to hear your exercises do not help, but I'm glad to hear you have appointments to look further in to things, I'm in the UK how about yourself? Also I forgot to mention I have family members who would look after my children if I did end up unwell so I could visit the hospital but that's a great idea your daughter has arranged for her children, I hope she is back In Good health, x

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    • Posted

      Hi Lynsey,

      I'm in the UK too.

      Glad you're seeing the cardiologist this week. It should set your mind at rest one way or the other.

      My daughter lives in London and I live near Liverpool, so I can't get there quickly. I'm glad you have family nearby. My daughter has a heart rhythm disorder and has had to go to hospital by ambulance in the early hours of the morning. Her husband had to stay with the children last time, but the first time it happened he was away and she was having to call friends at 2 am. She is generally very healthy fortunately, but the heart problem is very scary.

      Let me know how you get on with the appointment on Thursday. I am in hospital that day for treatment on my head, so I will think of you!x

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