Around 20 years ago, I had SEVERE chest pain in my early thirties. The pain felt like it was coming out my lungs. My left arm was aching and was numb. There were sharp pains on the left side of my neck and shoulder. I went to the ER. I was told it was just pneumonia and my EKG was abnormal but pneumonia can do that. I was then sent home. I didn't know what it was, but I clearly knew it wasn't pneumonia. The pain was so bad. I thought if I let it get even worst, the doctors would know. It didn't help. I was ready to give up when my husband made me go to the ER again. This Dr. on call put me in the hospital and call in a heart specialist. I was told from the very beginning the records showed percarditis when the Dr. told me it was pneumonia. I thought that was going to be the end of it, but it wasn't. The percarditis just kept reoccurring every six weeks to two months. I was going in and out of the hospital till the doctors just gave me the steriords to take whenever I would feel the symptoms starting. The anti-inflammatory just wouldn't take all the pain away. Since then it has been a fast downward slide. I am in constant pain. I ach and hurt all over like you wouldn't believe everyday. I am so weak that I can't work, eventhough I have a college degree I worked very hard for. I run a fever on and off everyday. At one point in the beginning I was given up to eight 80 mg. of oxycontin a day. I built up such a fast tolerate to that med. It was awful. I have been on all types of pain killers. Years later when I was finally able to get off oxycontin, one type of muscle relaxer had me all confused that I OD on that muscle relaxer, neurontin and a sleep med. Now I am on Lycria 150mg. three times a day and it is not even starting to help. I am in sooo much pain at times I can't get up. At times I will spend weeks to months in the bed. I have been tested for everything. In the beginning, I was told I had a severe form of Lupus. I was sent to another hospital, that Dr. said I had two times going on besides the reoccurring percarditis: the form of Lupus and Fibromyalgia. I was sent to another specialist because the pain was to much. He took about a few minutes to tell me that this has all been Fibromyalgia from the beginning. He has taken me completely off the high mg. of neurontin and put me on Lycria 150 mg. three times a day and I am soooo miserable. Why do I hurt sooo much. I can't get any help.
I hope I am not doubling up on this message, my original one disappeared while I was writing it! I am so sorry to hear of your painful journey. I wonder if you may have a Pulmonary Embolism? It's when a blood clot or plaque (fatty deposit from arteries) becomes lodged in a lung. It is incredibly painful, as you say.
I had a PE in 2007 and another in 2008. I had alot of trouble convincing doctors and emergency staff that a 35yo could have something usually only seen in older people. Turned out I have a gene mutation (as do most of my family we have found out through most of us having one or more PE's and sometimes pneumonia at the same time) which means our blood clots too much without medication.
I really hope your symptoms can be cured in such an easy way, don't give up!! This week I have had awful chest and left shoulder/neck/arm pain, just like yours again. Hurts to breathe/cough/speak/walk, no energy and short of breath. I am fighting again to ask hospital staff in the Emergency Dpt (where my doctors and Nurse on Call keep sending me) to use a VQ Scan or Cardio Vascular Angiogram Test? to find out. I will go back to my local doctors again and ask for those tests on their own, without being admitted to hospital, because the Emergency Dpt. refuse to do those tests even though it is life threatening if my local doctors are correct. In my other PE's, I didn't have all the symptoms, so doctors would not believe me, but in the end they found the PE on the VQ Scan.
All the Emergency Dpt. have tested me for now is pneumonia (Chest X-Ray and Contrast CT Scan). But they said I don't have pneumonia! That's my only diagnosis, that I don't have pneumonia. And I continue to be on massive doses of two different kinds of antibiotics, symbicort puffer (which does nothing) and I've given up on painkillers. But I know you have been through alot more than that. I know it's hard to keep going, but it's worth it to get more answers and possibly a cure for yourself!
If you do have a PE, it is usually diagnosed by a VQ Scan or a Cardio Vascual Angiogram Test? A PE can't usually be found on a Chest X-Ray or other tests, including a Contrast CT Scan, according to my local doctor. You need the test to be specifically looking for a PE. Doctors (usually in Emergency or through Specialist Doctors like a Cardiologist or Haematologist) can start fixing the PE in a few days in hospital. Maybe you can get a referral to a Cardiologist for tests - or because the problem is blood-related, I've been seeing a Haematologist in the past.
It is a relatively fast fix, and may still be what you have, especially if you are not very active because of your pain, as blood doesn't flow as much in legs especially with lots of bed rest. I would take note of any purple/reddish spots/patches, pain, hot, sharp or burning feeling or swelling in your lower to upper legs and even arms. These could be a DVT (Deep Vein Thrombosis) in your leg, which usually causes a PE when the clot breaks off and finds its way into the lungs.
I hope this has not been too scary to 'hear' but I hope it has been some help.
All the best,