Hi i have quite a long medical history so iw ill try and be brief but consise!
I am one of those 36 year old wrecks! You know the ones where Drs roll there eyes in disbelief!!
I had Endometriosis and Adenomosis(Inside womb end) which i had a hysterectomy for at age 26yrs. I used to be a nurse and soon after giving birth to my son a patient caused me and another nurse to fall which left me with 5 discs disintegrating and osteoarithritis. This left me with Fibromyalgia (chronic pain).
I had Endometriosis and Adenomosis(Inside womb end) which i had a hysterectomy for at age 26yrs. I used to be a nurse and soon after giving birth to my son a patient caused me and another nurse to fall which left me with 5 discs disintegrating and osteoarithritis. This left me with Fibromyalgia (chronic pain).
I developed adult onset asthma when we were living in damp council acommadation but was it was very mild.
I then had developed pericarditis, i had an xray which showed fluid around the heart. I had inverted T waves on my ECG along with other changes which were abnormal but no saddle on ECG. They said heart attack alsorts at the time. I had a couple of echos which which showed some weakening to valve and regurge along with the bright fluid etc. They had problems deciding how to treat me due to my asthma s i am allergis to Nsaids the normal treatment here for pericarditis. They also did bloods and couldnt find a vspecific virus which had caused the pericarditis. They started me on Prednisolone and eventually sent me home telling me i would pick up and be fine!! Wel i wasnt it took 5 months to be able to go out and lead anywhere near the already limited life i had lead with my back injury etc. After 6 months i was hospitalised with the same problem again and it showed up on xray and ecg again. I had steriods again and it settled. That was 2001 whent his all started. Since then i have episodes which are becoming more and more frequent where not neccessarily the pain starts again but i becaome short of breathe, chest is tight, sometimes with pain, blue lips, funny rythms etc. Since that time my asthma has become very chronic and i get episodes where both my heart and lungs become inflammed. The drs blame my asthma although after my latest episode the drs have finally admitted it could well be both my heart and lungs becoming inflammed. Each time they treat me with steriods as although my ECG shows some changes they say they are not dangerous. I have a very slow heart rate and very low blood pressure but at times due to one of the asthma meds this goes very high. But i am now stopping this medication. Because they dont understand the complexities of the cause it makes treatment difficult. I wonder if any of this sounds failiar to anyone.
I am convinced i have an autoimmune illness but i have had blood tests and have no markers to prove it.
I understand they are doing their best and even drs dont know everything. I just get frustrated because if i am having a good day with my chest my back can start. The endometriosis left me with bladder and bowel damage to date i have had 7 operations the last one on my bowel Jan with more expected on my bladder.
Most of the time i can cope in my little bubble of my home as i have all the eqipment i need. Its just sometimes i get fed up with it all!!
Lots of love
Louise
I understand they are doing their best and even drs dont know everything. I just get frustrated because if i am having a good day with my chest my back can start. The endometriosis left me with bladder and bowel damage to date i have had 7 operations the last one on my bowel Jan with more expected on my bladder.
Most of the time i can cope in my little bubble of my home as i have all the eqipment i need. Its just sometimes i get fed up with it all!!
Lots of love
Louise
Hi Louise, I wanted to welcome you to Healing Well forum. It sounds as if you have been through quite a bit. I am sorry for that and understand it is frustrating. Especially if you have understanding of the medical field having worked in it and still have no answers. I also worked in the medical field for a number of years but my experience is in mental health, which always has a cross into the medical practice. I also am not working now due to my own health problems. There are quite a few people on this board who have Pericarditis and we also have a thread that we keep going dedicated to this topic, if you haven’t checked it out already. I am sure that you will have many responses to your post. This is a wonderful site with great people who are always so supportive of each other. I hope you continue to visit us here and post often. Take care
Elisha
Hi Louise...
Have you had the pressures in the right side of your heart checked to see if you have constrictive pericarditis? If you go to the pericarditis thread...many of us have CP and have had surgery to relieve the symptoms you speak of.
Nan
Have you had the pressures in the right side of your heart checked to see if you have constrictive pericarditis? If you go to the pericarditis thread...many of us have CP and have had surgery to relieve the symptoms you speak of.
Nan
No i havent, here in uk they only say it was a virus and will get better. When i am ill they continue to treat me with asthma. They have done a echo recently but that was when i was well which showed nothing unusual. I am just frustrated with being ill so regualarly but am unsure of the cause. It doesnt always feel like asthma and i dont always respond to the asthma meds as i should. I think my heart may have been affected by the pericarditis??
Welcome Louise,
I am sorry to hear you have gone through so much.
Abnormal pericardial fluid buildup can lead to cardiac tamponade or constrictive pericarditis, so ask your MD.
Last summer I had minimal pericardial fluid barely detectable only by CT scan. I was experiencing numbness in some extremeties, pain and weakness. But the physicians did not relate these symptoms to the pericarditis, though I could tell my body was not right. Now the lastest CT scan shows no fluid and all my symptoms are gone except the chest and back pain. I believe my pericardium has been damaged by the abnormal fluid being there so long,therefore it is being stretched and the pericarial rubbing is causing the chronic pain now. When you had the fluid, what symptoms did you experience?
John
I am sorry to hear you have gone through so much.
Abnormal pericardial fluid buildup can lead to cardiac tamponade or constrictive pericarditis, so ask your MD.
Last summer I had minimal pericardial fluid barely detectable only by CT scan. I was experiencing numbness in some extremeties, pain and weakness. But the physicians did not relate these symptoms to the pericarditis, though I could tell my body was not right. Now the lastest CT scan shows no fluid and all my symptoms are gone except the chest and back pain. I believe my pericardium has been damaged by the abnormal fluid being there so long,therefore it is being stretched and the pericarial rubbing is causing the chronic pain now. When you had the fluid, what symptoms did you experience?
John
When i was diagnosed with pericarditis i went to hospital as i was breathless and had discomfort in my chest. When they did an x-ray which i have a copy it shows fluid around the heart. I also had abnormal rhythms on my ECG. about a week later i was still breathless, had a lot of chest pain with the rub, blue lips and nails etc.
This happened again 6 months later and was diagnosed with ECG and Xray.
I now get breathless very easily, but have episodes of weeks at atime where i am constantly breathless, tight chest, abnormal rhythms, heavy chest and some pain but not like the first time. I also get the blue lips and nails etc.
Louise,
Did the doctors try to drain the fluid such as perform a pericardial window? I know what you mean by the pain is different. The pain I have now have appears to be chronic somewhat dull and more noticable upon deep inspiration while the back pain can appear unexpectedly. Wheras during the acute abnormal pericardial fluid stage, I was light headed, weak and the pain seemed more sharp. My workup was all normal except the EKG but the doctors still feel it is acceptable for younger patients. My blood pressure was also about 10 points lower than usual with the fluid present but at the time I was being told my blood pressure is good. Maybe a heart cath to check the pressures or a CT scan to check pericardial thickness can help with a firmer diagnosis. But it may also be too early to get a good confirmation.
John
Did the doctors try to drain the fluid such as perform a pericardial window? I know what you mean by the pain is different. The pain I have now have appears to be chronic somewhat dull and more noticable upon deep inspiration while the back pain can appear unexpectedly. Wheras during the acute abnormal pericardial fluid stage, I was light headed, weak and the pain seemed more sharp. My workup was all normal except the EKG but the doctors still feel it is acceptable for younger patients. My blood pressure was also about 10 points lower than usual with the fluid present but at the time I was being told my blood pressure is good. Maybe a heart cath to check the pressures or a CT scan to check pericardial thickness can help with a firmer diagnosis. But it may also be too early to get a good confirmation.
John
i was interested in your comment about your BP mine is very low in fact a couple of times i have worried the drs when i hospital this last asthma exaccerbation my bp went down 62/41 its regualarly down to 70/90.
my pulse can go down 45 or up 150. They dont do pericardial drains here unless the steriods or anti inflammatories dont work. They put me on 80mg Prednisolone and i was on that about and a reducing dose over 6 months. The fluid gradually drained on its own. I was told i had some scarring on the outer layer of the heart and they werent sure how deep the fluid went as i had Peri/myocarditis on my notes. They were also concerned about valve regurg which i think is why they left me so long.
Tghe frustrating thing for me and my Drs i suppose is they dont know how much is heart and how much is lungs.
There is a chance i may be able to get referred to the Royal Brompton hospital which is a heart & lung centre. BUt here in Uk the way things work are very different from over there we dont get much chioce over what our drs do or dont do.
my pulse can go down 45 or up 150. They dont do pericardial drains here unless the steriods or anti inflammatories dont work. They put me on 80mg Prednisolone and i was on that about and a reducing dose over 6 months. The fluid gradually drained on its own. I was told i had some scarring on the outer layer of the heart and they werent sure how deep the fluid went as i had Peri/myocarditis on my notes. They were also concerned about valve regurg which i think is why they left me so long.
Tghe frustrating thing for me and my Drs i suppose is they dont know how much is heart and how much is lungs.
There is a chance i may be able to get referred to the Royal Brompton hospital which is a heart & lung centre. BUt here in Uk the way things work are very different from over there we dont get much chioce over what our drs do or dont do.