Pain with FM

Fibrosing Mediastinitis
#1

Hi everyone!

I have a question, I am a little confused. I have read e-mails and blogs etc where people say they have FM of the airways. I ask my doctor and he is very vague with me. Due to the fact I suffer from anxiety, I think they don’t tell me everything.

The told me I have scar tissue in my chest that is strangling my pulmonary artery and a bronch tube. Just recently they told me the prednisone must be working because the mass had shrunk. They also told me I had a blood clot in my right lung, was put on blood thinners, and they told me it looks like my lung has healed it self.

Lately, I am suffering from a lot of pain in my neck and the middle of my chest, I find it hard to breath at times, and sometimes the morphine doesn’t touch the pain.

Was just wondering if any one has the pain in there neck at the front right below your chin, and about the middle of my windpipe, it feels like someone punched me.

My specialist is on holidays,and my family doctor told me I probably twisted my neck in my sleep.

If anyone has had similar symptoms, and could explain FM of the airways it would be greatly appreciated to hear from you!

Til then take care and God bless!

#2

HELLO EVERYONE , I THINK THE DR’S DOES NOT ALWAYS KNOW WHEN THE PAIN IS ASSOCIATED WITH FM OR NOT THEY HAVE TOLD ME MY CHEST PAINS AND BACK PAIN HAS NOTHING TO DO WITH FM BUT THEY CAN NOT TELL ME WHY I HURT SO BAD. IT USALLY STARTS IN MY BACK AND GOES AROUND TO MY CHEST. I HAVE HAD SOME PAIN IN MY NECK PUT WHEN THEY PUT THE STENT IN IT SOLVED THE PAIN IN MY NECK BUT I STILL HAVE ALOT OF CHEST PAIN AND BACK, DO YOU HAVE ANY STENTS MAYBE YOU MIGHT WANT TO TALK WITH DR. LYOD IN TN. ABOUT IT . HAVE A GOOD DAY

#3

Thanks tut,

I have just came home from my family doctor, and he did a chest x-ray at the beginning of the week, the result is in, he tells me I have pnemonia in my right lung, and the report said it looks like a start of something. My specialist is on holidays, so hopefully he can shed some light on my situation. My specialist is in contact with Dr.Loyd quite often, since I live in Canada and nobody here seems to know too much about it. I talked to Dr.Loyd before and now my specialist and him have hooked up to discuss my FM. I don’t have any stents.

I have been in so much pain lately, I must take morphine every 4 hours…and no they do not have me on O2.

thank you, till next time, take care and god bless

#4

Pain is certainly one of the manifestations of FM. I do not know much about airway involvement with FM as my disease affects my pulmonary artery only. I would hazard a guess and say that the FM could be causing pain in your neck simply because the neck is thick with nerves and if it’s compressing an airway it would certainly be interfering with some nerve or soft tissue that causes pain. I have pain when i’m tired or when I change altitudes. I had an angioplasty of my stents last September which usually alleviates my pain due to increased blood flow. I think a lot of us have ischemic type pain due to interference of blood flow. I also think that there are so many manifestations of this disease that everyone experiences different levels, types and locations of their pain. Just my opinion. I don’t know if that helps.

#5

Hey there,

I have FM of the airways and the right lung. You symptoms to do not sound like mine. My entire chest felt and still at times feels as though someone is actually has their hands around my pipes and are twisting them. The constriction is so great that I wheeze similar to that of asthma but it is because the airway is blocked with the concrete “stuff” and the flow of air is restricted. I have had three dilations (or balloon procedures like with heart patients) and stents (metal or silicone) are out of the question for me. They now are tallking about reconstructing my airways and removing up to 1/2 of my right lung.

Hope this helps.

mewilkat fibrosing-cpt5059@lists.careplace.com wrote:

#6

Pain is certainly different for everyone and the way this fibrosing attacks our parts is also different. Please be careful when seeking pain therapy as there are addictive medications that have bad side effects. I guess I am lucky in that my pain feels manageable. I have airway obstruction as well as vein and artery obstruction (svc and r.pulm artery). My pain is best described as angina and is always there - some days worse. I take naproxen sodium and ibuprofen daily. When I am feeling “good” I try to back away from the ibuprofen until I can’t stand it any longer.

I was once in the hospital twice one year for pneumonia - not fun. I took the pnuemonia vaccine and now pay particular attention to not placing my body at risk. We can’t afford the drain on the body - it needs to be used to fight for each breath and the next day.

With my airway and lung restrictions I manage my breath by concentrating on deep breathing using the diaphram to cycle as much air as possible. I need to do this to not get short of breath when I walk. I often shun away from conversations while walking with someone and have found that I find excuses to not keep pace if necessary. I have confided to some why this is happening like my family and “need to’s” at work. There understanding is always appreciated.