New, A Bit Scared, Would Appreciate Advice.

[Sparklingsunshine]

For background I've got Ehlers Danlos, a genetic connective tissue disorder which causes stretchy joints, skin, dislocations and a whole host of other fun things. Also underactive thyroid and B12 deficiency/ pernicious anemia and asthma.

In spite of my issues I've always loved exercise, keeping fit and trying to be as healthy as I can be. I eat a plant based diet, dont smoke or drink and was going to the gym several times a week, as well as walking a lot.

Last summer I developed awful chest pain, phoned my surgery who told me to go to A&E after waiting for hours having bloods, ECG etc, was told it was most likely indigestion 😒. So came home. The pain appeared to subside but then a few days later it came back. Paramedics came out as I was also short of breath, they advised to go back to A&E. This time I got directed to SDEC, or same day emergency care.

To cut a long story short they advised me to come back early the next day for an Echo with Cardiology who diagnosed pericarditis. I was put on prednisone for two weeks. It worked very quickly. However the Echo revealed mild leaky Mitral valve, Tricuspid valve and trace Aortic valve, probably related to my EDS. The Cardiologist said it would be a good idea to rescan every so often and keep an eye on them but when report went to GP nothing was said about that.

Fast forward to February, started having shortness of breath, but no wheezing or coughing, got sent to SDEC again due to medical history, they diagnosed exacerbation of asthma, more steroids and nebuliser treatment. However it felt like not being able to get enough air into my lungs.

Over the last few weeks I've been struggling with shortness of breath on exertion, climbing stairs, even walking and talking on the phone. Fatigue has been much more noticeable. I've had to suspend my gym membership as I've felt ill during workouts. The breathlessness is noticeable when I'm resting now as well.

I saw my GP yesterday who listened to my heart, diagnosed grade one and two heart murmur, is going to refer me to Cardiology. He suggested trying a GTN spray. Blood pressure was a little elevated and I do have a fast pulse and get palpitations but not sure if this is significant as many with EDS have those, it goes with the territory.

This is all new to me, never had any heart issues and I'm apprehensive. I've got no idea what to expect ,how long I'll wait to see Cardiology and whether I should be worried. We recently lost a close relative unexpectedly to a heart attack so I guess its understandable to be a bit scared.

[10gingercats]

I can understand your concern and esp. with several other health issues.People here will give you the benefit of their own experience but we are not medics.Waiting for a cardiology appoint can take days, weeks or months and it mostly depends upon where you live.Waiting times vary a lot throughout the uk.When you get an apointment. put yourself on the cancellation list immediately as then when someone cannot get to their appoint. for any reason the cardiology dept will call you if you are on their cancellation list and offer you the appoint, I have just had an appoint booked originally for end of June brought forward by many weeks. The consultants secretary rang me at 9am last Tuesday and offered me an appoint the same day at 2pm.which I accepted. This works about 50% of the time and is well worth trying.Also your GP may ask for your appoint to be fast tracked so ask for his/her cooperation.Keep up with your gym if at a reduced level but anything will help to keep you in better shape.

[Sparklingsunshine in reply to 10gingercats]

Thank you, I've suspended it for now. I dont drive so walk everywhere, it'll have to do for now.

[Cliff_G]

Hi, are you aware of the UK charity: ehlers-danlos.org/ You should be able to get good advice from them.

With a condition like EDS it's important to "manage your own case", i.e. to become well-informed and ask doctors for appropriate assistance as necessary. It's pretty rare that GPs know very much about rare diseases, so armed with good information you can get the right referrals etc.

Your chest pain seems to have been treated as a possible heart attack, similarly your GP has prescribed GTN which is mainly for angina; I don't know the effect of EDS on the coronary arteries, so that may be relevant. I would share your desire to get seen again by a cardiologist and I hope the appt comes through, maybe the cancellation idea will speed things up.

I think it's best to try and see someone, too, who is familiar with EDS. Hopefully the EDSoc can help.

Best wishes

[Sparklingsunshine in reply to Cliff_G]

Thank you, some good suggestions there, I know EDS can affect heart valves as they can be floppy or prolapse. I havent had any chest pain just noticeable shortness of breath which seems to be worsening. EDS is a multi organ syndrome, I'm even wondering about POTS.

I think having ruled out lungs, as my chest x ray was clear and there are no signs of lung disease or wheezing I think my GP turned his attention to my heart.

I'm a little bemused by the a gtn spray tbh, as pain is something I'm not having. I'm not actually sure what the GP thinks it is. Or how the GTN will work. I've looked up google and apart from shortness of breath I've no symptoms.

[Cliff_G]

p.s., your thyroid figures may well be contributing to your fast rate and palpitations, and they often make for breathlessness. Suggest discussing that with your docs.

[Sparklingsunshine in reply to Cliff_G]

Yes my thyroid was checked in February, ok apparently. I have tried cutting down on thyroid meds this last week just in case I was taking too much but it doesnt seem to be helping. I think if I had some idea of what the GP thinks the issue is I would feel less anxious.

[Sparklingsunshine in reply to Cliff_G]

As part of the EDS I have autonomic dysfunction, ie my autonomic nevous system doesnt work properly, autonomic nervous system controls digestion, body temperature, breathing rate, blood pressure, heart rate and others.

Its the body's autopilot system. Fast heart rate, palpitations, sweating, temperature veering between hot and cold, digestive problems like slow stomach emptying. It could be mine has got worse. I dont know, just wish whatever it is would take a hike 😒.

I've always had palpitations and a fast heart rate, no matter how fit I've been. Its seems to be my normal.

[Sarah090174]

Hiya, I started to suffer with chest pains and heart racing during the night in May 2023 and saw my GP who said I had an extra heart sound so needed an echo scan plus a 48 hour heart monitor. I was referred to cardiology and saw the cardiologist in September 2023. I also have an underactive thyroid which is medicated plus other multiple health conditions such as inflammatory bowel disease and lung fibrosis. I had an echo scan which showed chronic pericarditis, LVSD which meant the left side of my heart wasn’t functioning as it should and an ejection fraction of 43%. I was also diagnosed with Angjna and Coronary artery disease. I was started on two medications immediately and had to await an MRI Scan and CT Scan. All the scans confirmed the diagnosis shown on the initial echo scan. My 48 hour heart monitor showed some tachycardia and extra ectopic beats. I have since been referred to the heart failure clinic who have increased my medications. I still have my heart racing in the night at least twice a week despite the medication but cardiologist is not unduly concerned about this and thinks it may be gastro related. I was only 49 when I was diagnosed so it has all been quite a shock. Anyway all in all I waited 4 months to see my cardiologist and had all my scans in November. As advised you can go on a cancellation list to see the doctors at short notice. I do hope this information helps and you get sorted soon with some answers. Take care of yourself and utilise your GP and hospital as much as possible

[Sparklingsunshine]

Thank you that's very helpful.

[Cliff_G]

There's a pretty active Facebook support group too, facebook.com/groups/1451508...

[Astronomyrules]

Hi Sparklingsunshine, I read your post with extra interest as my 29 year old daughter has EDS. She also has POTS. She finds the forums helpful. She has been trying a gluten free diet which seems to be helpful in reducing the frequency/severity of attacks in her case. As others have answered cardiologist waiting times are very variable, but what I want to advise is don't hesitate to go to A&E as many times as you feel the need. Don't think that you can't keep bothering them. Your gtn spray widens the arteries and may relieve your symptoms if heart related, but make sure it goes under the tongue and not directly to your lungs. I use mine when I'm sitting down before any activity that I know will set of my symptoms. Another chat with your GP about it's use in your case will be helpful. Finally, have you thought of gentle swimming as an alternative exercise? You may need to find warm pool, normal pool temperatures exacerbate my symptoms, but I find it a great help. You don't even have to swim if that's too much or you're not a swimmer, you can just walk in the water and do some exercises. Check with your GP that swimming will be okay. I hope this post and other replies are of some help and that you get to see the cardiologist soon. Good luck

[Sparklingsunshine in reply to Astronomyrules]

Thank you, I've got to be honest I hate swimming and getting wet lol. My physio suggested swimming a while back but I've never taken the plunge, so to speak. I am actually a good swimmer, I just dont like it. Its not something I would do. I'l, just stick to the walking and my garden for now.

I'm not having any joy with the GTN spray either. I think it was a long shot although I was a bit bemused when my GP suggested it, as I haven't any chest pain, just intermittent shortness of breath. I thought angina normally presents with chest pain or pain in the neck, jaw, shoulders etc. I have none of the above lol. It is giving me tremendous head pain, which isnt ideal as I get migraine.

Apparently headache after using it could mean it isnt cardiac artery disease. Its dilates blood vessels in my head but that seems to be the limit of its effect. I guess my GP felt he had to give me something in the meantime.

[Astronomyrules]

Thanks for your reply . The GTN headaches are a very common side effect, but in my experience they diminish with time. I too suffer migraine but it has never triggered an attack and usually the headache fades after 10 minutes or so. Maybe that's not the case for you. At least if you have the spray with you and you do suddenly develop chest pain you can use it to see if the spray relieves it or if not call 999. Maybe that's why you were given it, at least in part. Do ask your GP when you can next speak to him/ her to find out why it was prescribed. I didn't like pool swimming either, but if you find a nice warm one, I use one belonging to a local hotel, it's so relaxing. However, walking is great. I recognise that this is a very worrying time whilst you wait for an appointment. Meanwhile any form of exercise and a good diet is the best anyone can do to aid both mental and physical health. I hope that doesn't sound preachy, I have been in your position and I am also constantly anxious about my daughter's health and frustrated by how long it takes to get a definitive diagnosis. I sincerely hope you don't have to wait long. Do post updates.🍀

[Astronomyrules]

Thanks for your reply . The GTN headaches are a very common side effect, but in my experience they diminish with time. I too suffer migraine but it has never triggered an attack and usually the headache fades after 10 minutes or so. Maybe that's not the case for you. At least if you have the spray with you and you do suddenly develop chest pain you can use it to see if the spray relieves it or if not call 999. Maybe that's why you were given it, at least in part. Do ask your GP when you can next speak to him/ her to find out why it was prescribed. I didn't like pool swimming either, but if you find a nice warm one, I use one belonging to a local hotel, it's so relaxing. However, walking is great. I recognise that this is a very worrying time whilst you wait for an appointment. Meanwhile any form of exercise and a good diet is the best anyone can do to aid both mental and physical health. I hope that doesn't sound preachy, I have been in your position and I am also constantly anxious about my daughter's health and frustrated by how long it takes to get a definitive diagnosis. I sincerely hope you don't have to wait long. Do post updates.🍀