Don't know what to do, my GP gave up on me!

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I've been suffering with chest pain for almost 21 months now and it shows no sign of stopping- actually it seems to be getting worse now. This pain has developed slightly over time but is now predominantly a constant dull pain covering my chest and with sudden, utterly random, attacks of sharp stabbing pain around (what feels like) my heart area (the stabbing pain doesn't seem to be triggered by anything particular but I can barely move when it happens for the pain and struggle to breath). I'm in constant pain and I'm struggling with day-to-day living now. I tried to ignore it when it started and let it pass, but got so fed up I went to the GP after 2 months. Since then, I've had 5 opinions, all of which have been different, and no one can agree what is causing the pain. I've lost count of the number of tests I've had for my heart and everything always came back negative.

There are other symportoms attached- I've passed out a few times, it affects my arms (shooting pains or loss of mobility) and get frequent breathing difficulties when the pain is worse. I struggle to use my arms a lot where the muscles hurt- I've always been an active person so this has prevented me engaging with some of my favourite hobbies.

I saw a Cardiologist who said my heart couldn't be healthier. The first GP said it was Pericarditis which was then ruled out. Another said it was costochronditis and another said it couldn't be either but didn't know what to suggest. Basically I was left several months ago at "You're not dead yet so I don't think it's fatal...there's not much point coming back because I don't know what to suggest". The problem has recently gotten worse and I don't want to go back to the same GPs for follow up because they gave up on me (twice now). Does anyone have any suggestions as to what I should do/ where I should go? Are there any specialist centres I can try? I'm getting desperate to stop this pain and the painkillers don't help.

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  • Posted

    Parkerface, that sounds terrible. Rather than waste words on what I think about your treatment, I will tell you what worked for me.  (I am not a health profession so proceed with care if you do any of this!) I have been diagnosed with costochondritis - it's a 'rule other things out' diagnosis - after being referred to the Rapid Response Cardiac Unit in Edinburgh.  GPs seem to be stumped other than giving me a ton of ibuprofen and Omeprazole to protect my stomach from the ibu.   After it didn't go away in the 6-8 weeks it says it does on Patient UK, I went to see a physio who knew about the condition and gave some excellent advice: VERY GENTLE stretching exercises, and avoiding any load-bearing activity ie lifting, pulling or pushing ANYTHING.  It's extreme and very difficult to manage and frustrating to the point of tears,  but it did work.  When I went back to anything like normal activity the pain got worse, but after 6 months it has gone apart from a little ache now and then. Also she suggested rubbing the area with an ice cube after any movement which causes inflammation (as an ice pack near the heart may not be advisable).  I slept on my back or when I slept on my side I used a thick pillow to support the top arm.  Again not great, but worth it. I have used a chiropracter for my back so I know and trust him.  He didn't do any manipulation on the affected area, but showed me how to massage between the ribs to disperse inflammation.  I would not advise doing this without being shown exactly how, as you have to be careful not to pull on the affected area, but it helped enormously.  Aslo anti-inflammatory foods such as turmeric and ginger.  And I rest late afternoon or early evening when I can, as ANY movement affects the sternum, even sitting or walking. My physio also suggested I don't use a handbag, just put stuff in pockets, and use well-cushioned shoes as repeated impact of foot on concrete refers up the body. Also, and I-Pad (even the minie) I find is terrible, because it makes me lean forward.  Posture really matters, not compressing the sternum either vertically or horizontally.  I discovered something called Feldenkrais method  which is teaching me how to use my body better.  Wish I'd discovered it when I was younger.  Hope some of this helps, if not, keep searching the web till you get what you need. Don't give up!
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  • Posted

    Hi Parkerface - I hope you get this message and can reply!

    My name is Alex - I am a 25 year old male with no history of any health issues. I am a keen sportsman who plays football regularky- I do not smoke and rarely drink alcohol.

    After reading your post - it's scary. I am in exactly the same position as you. It is now coming up to 2 years of being in constant pain - some days are worse than others however at 25 years of age I'm tired of it. Its effected many aspects of my life - mainly holidays abroad.

    I first started getting chest pains after a football match on a Saturday. After first having chest pains I thought it would pass. By Monday evenng it was a horrible stabbing pain and I went straight to AnE. They took an ECG and told me it was textbook 'Pericarditis'. I was given medication to take - however nothing they gave me worked. I went private to see a cardiologist - who gave me an MRI, Echo and blood tests. Pericarditis was still their answer. After consulting with a few more doctors I was told it couldn't have been Pericarditis as the imflammation didn't show up on any of my results - Like you, I was told that 'my heart is healthy and I am a healthy 25 year old'. I have seen a pain specialist too who suggested it was something to do with my nerves and I am waiting for another appointment to see him to see if I can finally shake this off.

    I have recently gone to see my GP with chest pains again - however they refer back to my test results and say 'there is not alot we can do'

    Please let me know how you are and if you've managed to get rid of this!

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    • Posted

      Hi Alex,

      Yes, a similar problem. I'm a 22 year old woman who doesn't smoke, doesn't drink heavily and who lives a very active lifestyle- I swim once a week, go rock climbing regularly and walk everywhere so I wouldn't say I was too unfit. This really did all just come out of nowhere. 

      Since my post I've been back to the GP a couple of times. I went again last week a saw a new doctor who gave me yet another dianosis- this time he completely ignored the previous suggestions (didn't even utter the word costochronditis or pericarditis) and said it 'might be' nervs/anxiety. This I find hard to believe. I know the mind plays tricks but I have never been an anxious person and nothing major has changed in my life in the last couple of years. I have always been a bit of a workaholic, taking on far too much, but I'm so used to it that I start to go crazy if I'm not working on something. I've always been able to cope with stresses so I just can't seem to accept this idea. 

      The GP has put me on some beta blockers- which don't seem to do anything- and wants to see me again in a few weeks. Now I've had 7 opinions and all have been different and been given about a dozen different rounds of tablets to help but nothing has worked. So no, sorry. I haven't managed to get rid of this yet and wouldn't have suggestions. 

      I'm angry because this does impact my every day life and I struggle at work sometimes. I've barely slept in months because of the pain and I've had to massively reduce the amount of climbing/walking etc that I do. I'm so tired these days!

      Sorry to hear you are suffering too. Have you had any progress yet? Any new ideas or investigations? What did the pain specialist say when you went back?

      Vicki

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    • Posted

      Hi Vicki..

      I'm so happy to receive a reply from you and to know I'm not the only one. Have you had any MRI or CT scans?

      Still no change with me Vicki. Still getting pain in my chest - it's like a full ache now rather than a pain. I think I'm starting to get to terms with the fact that I may just have to live with it. Which is horrible because no one at 25 or 22 should be experiencing this. Especially as we have both gone to see people and all have given us different opinions. 

      Last time I went to see a doctor.. They told me my heart was very healthy. But during a CT scan they found a lymph node (a little bump) on my lung. Said it was normal but that's all they could find. All tests have literally said I'm healthy. Which leads me on to what you said about anxiety and worry. They said that it could be my mind playing tricks on me. But - pain is pain. It's something that is either there or it isn't. The other thing I had when I've been to hospital it when they've taken a ECG my ECG comes up as abnormal.. Which they say shows I have 'textbook pericarditis'. It's so frustrating. It's affected my life as I haven't been able to go on holiday as flying just irritates it.

      At the moment I have no plans to go back and see a doctor about it - as all the tests they have done show absolutely nothing.  

      Where is the pain you are experiencing? What is it you do for a job if you don't mind me asking? 

      Alex.

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    • Posted

      Hi Alex,

      I've had countless blood tests, ECGs, Echos, a Doppler and a few other bits and bobs but no MRI or CT scans. A couple of the doctors have hinted at X-Rays but then decided against it because of the area of the body.

      Sorry to hear that, at least you can prepare yourself if it does linger more. I guess acceptance helps to avoid nervs. Knowing it's nothing to do with the heart is always a relief though.

      I went back...now they think it isn't nervs/anxiety as the last treatment would have worked. I'm on new tablets now for Tietze's Syndrome... it's just another option. I keep getting passed around the GP practice as my doctor isn't always available so keep getting new opinions- the chap who I've seen the last couple of times seems to have a very different attitude to the others which is great. Instead of it being 'I think it's this, it must be this, we'll ignore the tablets aren't working and carry on' it's now: 'Right, that didn't work, let's try something new' which is great. I feel like he's actually trying to help.

      My pain is centre/left in my chest- quite often it feels like my heart but I know my heart is healthy. It is getting worse. This will be my 3rd winter with it and I know the cold makes it worse so I'm expecting a rubbish few months. I already struggle walking to and from work so I don't know how I'll cope till Spring. I work at a university which isn't exactly physically strenuous.

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    • Posted

      Hi Alex,

      I've had countless blood tests, ECGs, Echos, a Doppler and a few other bits and bobs but no MRI or CT scans. A couple of the doctors have hinted at X-Rays but then decided against it because of the area of the body.

      Sorry to hear that, at least you can prepare yourself if it does linger more. I guess acceptance helps to avoid nervs. Knowing it's nothing to do with the heart is always a relief though.

      I went back...now they think it isn't nervs/anxiety as the last treatment would have worked. I'm on new tablets now for Tietze's Syndrome... it's just another option. I keep getting passed around the GP practice as my doctor isn't always available so keep getting new opinions- the chap who I've seen the last couple of times seems to have a very different attitude to the others which is great. Instead of it being 'I think it's this, it must be this, we'll ignore the tablets aren't working and carry on' it's now: 'Right, that didn't work, let's try something new' which is great. I feel like he's actually trying to help.

      My pain is centre/left in my chest- quite often it feels like my heart but I know my heart is healthy. It is getting worse. This will be my 3rd winter with it and I know the cold makes it worse so I'm expecting a rubbish few months. I already struggle walking to and from work so I don't know how I'll cope till Spring. I work at a university which isn't exactly physically strenuous.

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  • Posted

    i get these with acid reflux, now so worried dont exerxise am scared to death of being out alone or fear of having a panic attack, or heart attack this then spirals, do u know if ECG and GP hearing your chest is enough to be sure no serious problem. o any help thanks?
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