Does anyone else suffer from Breathlessness and Chestpain with CFS?

Hello Everyone

I am still in the process of working my way through the NHS, one department at a time, to get a firm diagnosis.

I have suffered from fatigue,muscle pains and weakness on and off over the past 10 years. My GP is very supportive and is doing every possible test he can think of. So far everything has been ruled out.

Things seem to get better at times then just when I am feeling better something knocks me back and I am flat out again.

Three years ago I was diagnosed with Atrial Flutter and Arythmia. This was treated with a ChryoAblation and even though the treatment was not completed it has reversed the Arythmia and controlled my heart rate. So at this point we thought it was not CFS afterall and things improved for over a year.

Following a short illness my CFS symptoms started to re-occurer. Though this time I was also suffering from breathlessness on exhurstion and chest pain. The cardiologist has ruled out this being caused by my heart. I have been through several pulmonary function tests on a couple of occasions with the respiritory consultant. Again the test are showing I am getting pain, and breathless but there is no particular cause. I have even had CT scans of both my heart and lungs that have been clear. Next stop waiting for the Neurology Appt.

As the GP keeps saying this is good news, however it doesn't stop the fact that I am still exhausted all the time, I have to sit down after getting dressed. Everything has to be planned around wether I think I can cope. I feel people at work think I am putting it on. I am able to work part time but I am getting pressure to be there full time. As there is no firm diagnosis its like the condition does not exist. I can feel myself "fading" as time goes through the morning. By time I reach lunch I cannot even talk. I had to as a colleague the other day for a word, I could see it and I knew what I wanted to say but it wouldn't come. She looked like me like I was stupid.

Any way back to my original question. Along with the bouts of fatigue, brain fog, and muscle weakness. I also find the I get a lot of chest pain and become breathless when I do things. This is worse when I am tired as all the symptoms seem to be.

Has any one else experienced this?

Thanks for listening

Julia

11 Replies

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  • All sounds very familiar had the breathing thing called air hunger when nothing showed on test and because the chest pain was around the breast bone costochondritis was put down as causing the problem that comes and goes over time. If there was only one bit of advice on working full time it would be trust your own judgement on where the limits are because you pay the piper for what happens.

    Wishing the best for whatever the future holds.

  • My daughter and I both have ME/CFS , gets the "unable to breath" issue, I don't. We both get heart palpitations. There is a good article about the heart and ME/CFS here healthrising.org/blog/2013/...

    We are currently exploring the role of adrenaline in the breathing issue. It seems to me as time goes on with this condition our bodies compensate for the lack of normal ways to make energy by releasing adrenaline really easily which causes many of the strange symptoms we get.

    I would emphasis the heart problem with your employers as it is something they can understand.. Tell them it would be reckless of you to return full-time until this has been sorted out.

    Good luck

  • Hello Julia,

    I'm with MESiG - ME Support in Glamorgan and we had a talk by two men who have produced SoeMac. It's a little machine that helps breathing. It is amazingly good for some people and does nothing for others! You can look it up but their number is 0115 7722456 - SOE Health Ltd in Nottingham. wwwsoemac.com Oxygen Energy Therapy.

    I have used it and the first night I woke up breathing so deeply that I couldn't believe it! It seems to help with snoring too! It really made me feel great and it did nothing for my husband who was sleeping further away from it. He was never aware of it being on as it runs very quietly and is a very tiny box with a tiny red light showing when it is working. My other friend said that her husband won't have it in the bedroom as it makes him feel ill (but he does have some kind of medical condition affecting his heart, so maybe it classes with that).

    The disadvantage is headaches. One woman tried it for 5 minutes and got a blinding headache - but she suffers from headaches a lot of the time anyway. We were told to try it in the daytime for 5 or 10 minutes at a time to begin with and then increase it gradually. Also it can give a dry mouth. But the best thing is to put a small bowl of water near it or a damp cloth in front of it. That reduces the headaches. The other problem is the cost but I think they will still let you have it on the basis of its working or not for you, on a return basis.

    I have two here at the moment...one that my friend needs to return, so I must remind her - but she's in the middle of a PIP assessment for her daughter who is bed bound with ME.

    All the best,

    Miriam

  • Miriam, this sounds very interesting. Thanks for telling us about this, I am seriously thinking of giving it a try.

    Best wishes x

  • Tell them that it was Miriam from MESiG in Cardiff who told you and are they still assessing its use for people with ME for trial periods. Let me know how you get on.

  • Hi Julia,

    My daughter, who also has ME/CFS gets chest pain and breathlessness, especially when she has overdone things or becomes very stressed. The fact that you are pushing yourself to work and are all-in by lunchtime shows that you are maybe already doing more than you really can do and the pain and breathlessness is the result. I hope you can get a more satisfactory diagnosis very soon.

    Best wishes x

  • Yes to all. Comes and goes depending on how hard I push myself.

  • My chest gets very tight as if somebody is pressing down on it & when trying to take deep breaths I feel like the air is not getting through , this doesn't happen all the time it's just when I've over done it x

  • Ursh32

    That is just what it is like. I can tell when I am getting tired as the pains get worse and it gets harder to breathe. Things are improving at the moment though.

    Julia

  • Thanks Ursh32. I agree it seems worse when i have done too much.

  • Hi Julie, I have had similar problems ,had ablation for arythmieas 12yrs ago then had cancerwhich didn't help but started to get chest pain and very breathless after ablation,tired and exhausted most of the time,tried different meds, made no difference,had loads of tests.then a locom Dr saw me and prescribed a blood pressure tablet,

    Amlodipine, well my blood presure had always been good but got to the stage would try anything to be even a bit normal,three days later got up and showered and dress breathing normal and no chest pain,I was over the moon pleased,sadly last year my breathing ,and feeling tired,exhausted came back ,No chest pain, so I'm just living with it, I'm now retired but could not cope if working . I'm thinking of asking Dr for increase of dose but my cancer is back (secondaries from before)so will get this sorted first but anetheist is asking for scans of heart before he will operate so it's taking time to get done.

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