Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
Good Morning to all.
I've been a reader/lurker here for a couple of years. I will sometimes reply to a post if I feel that I have something to truly contribute. I almost never create a topic. I have benefited a great deal from reading posts here.
I joined DS after being diagnosed with Meralgia Parasthetica which is a form of neuropathy. It can be a very painful issue. There are days where just the feel of the fabric of a pair of pants can create excruciating nerve pain.
Through this I have been able to keep working. I have a job that doesn't demand a lot of physicality however mental focus is a constant requirement. I am responsible for the safety of individuals in facilities located in Connecticut and Florida. We manufacture and test explosives and explosive devices. I am required to read and/or develop and implement procedures relating to manufacture and testing. Between the pain and side effects of the medications, focus is sometimes challenging and mistakes can have serious consequences.
In the middle of April of last year, I developed what I was certain was a pulled muscle on the left side of my chest. It got worse and it was becoming hard to take a full breath. My wife, thankfully went behind by back and dialed 911. The "pulled muscle" turned out to be my left lung filling with fluid and collapsing. I had pneumonia that except for the pain, had no symptoms.
At the hospital, I was intubated and placed into an induced coma. My left lung had totally collapsed and my heart was beating at an alarming rate trying to compensate for the lack of oxygen. I was in the coma for a total of 17 days. For the first 13 or so days, they were unable to stop the fevers from spiking and it was kind of touch and go. In one of the CAT scans/MRI's they did while I was out, they found a large pocket of infection that the antibiotics (as many as 9 of them, at the same time) were unable to reach. They got to the pocket of infection and 4 days later I had improved to the point that they took me off of life support and brought me out of the coma.
I was told that at one point my odds of survival had been as low as about 20%. I was also told that I'd remain in the hospital "for a while" and then be transferred to a rehab hospital for another 2 weeks or so, and that it would be months before we'd even talk about returning to work.
I was awoken on May 3rd and was home on May 7th.
At least 4 different doctors told me that they had seldom/never seen a recovery move at that trajectory. I refused the rehab hospital because all I wanted was to be home and recover a bit of normalcy.
I had put my beautiful, wonderful, loving wife through hell. For more than 2 weeks, each day that poor woman visited me at 6:00 am, went to work all day, visited me each night (while I was out cold and didn't even know she was there) and then went home knowing the phone could ring with terrible news. Where she got the strength and ability to do that, I'll never know. I don't think I could have done it. I will never be able to make up for the hell I put her through. Sometimes I think her love willed me through it all.
I went back to work on June 11th, part time of course at first. I returned to full time after July 4th week, months ahead of anyones most optimistic calculations.
My question is about recovery from coma. It is amazing just how much atrophy can occur in 17 days. The cognitive impairment is was a bit daunting as well. I don't think I can actually assess the emotional effects, so I don't even try. Obviously my neuropathy has "stunted" my ability to regain physical strength and though at this point I feel mostly recovered, I still tire pretty easily.
I know we have people here who have medical backgrounds, people who have been in a coma and in at least one case, a person who is both a nurse and coma survivor. Will I ever totally recover? What can I do to get that last bit back? As the first "anniversary" approaches, I seem to be dwelling on these questions a bit. The day I was induced happened to be my 54th birthday so it's a bit hard to forget about the date.
I'd really appreciate any information that anyone can offer. I also apologize for the length of this post!!
Thanks for reading my "Tale of Woe"
Mark
I've been a reader/lurker here for a couple of years. I will sometimes reply to a post if I feel that I have something to truly contribute. I almost never create a topic. I have benefited a great deal from reading posts here.
I joined DS after being diagnosed with Meralgia Parasthetica which is a form of neuropathy. It can be a very painful issue. There are days where just the feel of the fabric of a pair of pants can create excruciating nerve pain.
Through this I have been able to keep working. I have a job that doesn't demand a lot of physicality however mental focus is a constant requirement. I am responsible for the safety of individuals in facilities located in Connecticut and Florida. We manufacture and test explosives and explosive devices. I am required to read and/or develop and implement procedures relating to manufacture and testing. Between the pain and side effects of the medications, focus is sometimes challenging and mistakes can have serious consequences.
In the middle of April of last year, I developed what I was certain was a pulled muscle on the left side of my chest. It got worse and it was becoming hard to take a full breath. My wife, thankfully went behind by back and dialed 911. The "pulled muscle" turned out to be my left lung filling with fluid and collapsing. I had pneumonia that except for the pain, had no symptoms.
At the hospital, I was intubated and placed into an induced coma. My left lung had totally collapsed and my heart was beating at an alarming rate trying to compensate for the lack of oxygen. I was in the coma for a total of 17 days. For the first 13 or so days, they were unable to stop the fevers from spiking and it was kind of touch and go. In one of the CAT scans/MRI's they did while I was out, they found a large pocket of infection that the antibiotics (as many as 9 of them, at the same time) were unable to reach. They got to the pocket of infection and 4 days later I had improved to the point that they took me off of life support and brought me out of the coma.
I was told that at one point my odds of survival had been as low as about 20%. I was also told that I'd remain in the hospital "for a while" and then be transferred to a rehab hospital for another 2 weeks or so, and that it would be months before we'd even talk about returning to work.
I was awoken on May 3rd and was home on May 7th.
At least 4 different doctors told me that they had seldom/never seen a recovery move at that trajectory. I refused the rehab hospital because all I wanted was to be home and recover a bit of normalcy.
I had put my beautiful, wonderful, loving wife through hell. For more than 2 weeks, each day that poor woman visited me at 6:00 am, went to work all day, visited me each night (while I was out cold and didn't even know she was there) and then went home knowing the phone could ring with terrible news. Where she got the strength and ability to do that, I'll never know. I don't think I could have done it. I will never be able to make up for the hell I put her through. Sometimes I think her love willed me through it all.
I went back to work on June 11th, part time of course at first. I returned to full time after July 4th week, months ahead of anyones most optimistic calculations.
My question is about recovery from coma. It is amazing just how much atrophy can occur in 17 days. The cognitive impairment is was a bit daunting as well. I don't think I can actually assess the emotional effects, so I don't even try. Obviously my neuropathy has "stunted" my ability to regain physical strength and though at this point I feel mostly recovered, I still tire pretty easily.
I know we have people here who have medical backgrounds, people who have been in a coma and in at least one case, a person who is both a nurse and coma survivor. Will I ever totally recover? What can I do to get that last bit back? As the first "anniversary" approaches, I seem to be dwelling on these questions a bit. The day I was induced happened to be my 54th birthday so it's a bit hard to forget about the date.
I'd really appreciate any information that anyone can offer. I also apologize for the length of this post!!
Thanks for reading my "Tale of Woe"
Mark
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So mad at Xfinity! They're trying to charge me $115 per month for the same service I had been paying $50 the last four years. I took the equipment to UPS for shipping and cancelled my subscription today! Next door was a cookie shop called Crumbl. I had heard of it before but never went in until today. I don't need one more sugar fix, but maybe it will help with my sad) grieving heart....$15...
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I know this is stupid, but after not being able to find a job after graduation for almost two years, I ended up just taking an online teaching job because I couldn't find anything in my field. I was trying to get out of teaching and I feel so devastated. I felt this crushing feeling when I signed the paperwork and when I was in the meetings. I know that sounds so dramatic but it is how I felt. It...
I hope you will find the support and helpful information from this group that will be helpful.
So sorry you and your wife had to go through this. I wife was there everyday because she knew your subconscious was listening, and she wanted you to come home. So glad you made it home and with such success. Kudos plus to you.
Wishing you well. and Welcome again-RJ
Welcome to our group and thank you so much for sharing your amazing story. Wow,.what you and your wife have been through. You are both obviously strong people.
May God continue to bless you both. I hope you get the information you're looking for. I know with pneumonia, it takes a while to feel back to normal. I know when I've had it, even though the symptoms were gone, I had no energy for months. It took me quite awhile to get my strength back.
I wish you and your family continued good health and am so glad that you are here and able to share your story.
Hugs,
Mary Ellen
heatherhurts
I think I was the one you mentioned as a nurse who was in a coma.
First, I think you've made remarkable progress after your coma. The fact that you were able to rehab at home is amazing. I chose the same route after my coma.
I've actually been in 2 comas, both related to lupus and pneumonia. The 2nd time I had bilateral fulminant pneumonia along with lupus pneumonitis. Being intubated and awake is a horrifying thing, especially for an ICU nurse who took care of countless intubated patients.
On my 2nd CT, the drs found an area of cerebral anoxia that was probably from my first coma. I have memory loss from that and it's so frustrating. For example, I saw an ad for Quizno's on TV and said to my husband, "Boy, that looks good. We should go there". He informed me that we had gone there and that I didn't like their food. I have absolutely no memory of that. And there are many other things I simply have lost all memory of. They're little things, really inconsequential but the fact that I don't remember them still bothers me.
You'll never retrieve the memories you've lost. The brain just can't regenerate memories. But thankfully, it seems as though you didn't lose the technical knowledge you need for your job.
I guess I've accepted the cognitive loss. But in a way, I really haven't because I find myself trying so hard to remember things I've obviously lost. There are periods of time that I have no memory of. I kind of see what happens in Alzheimers and frankly, sometimes it scares the hell out of me.
I wish I could give you a better answer, or at least one more hopeful. I've tried things like luminosity.com that is supposed to help with brain function but it really doesn't. I just try to keep my mind as active as possible to avoid any further loss.
As for your neuropathic pain, it sounds to me as well like RSD pain. I have a Spinal Cord Stimulator implanted that helps a lot- usually 90% drop in pain. I wonder if that might help your condition as well. I'm not familiar with Meralgia Parastetica so I'm going to have to read up on it. I find the combo of the SCS, narcotic pain meds and Lyrica help. I've heard Ketamine cream is really helpful but I'm allergic to Ketamine so that's not an option for me.
I'm glad you found us. Everyone here is so supportive and caring.
If you have any questions or just need to chat, please pm me.
And I think your wife is wonderful for being so supportive. My husband was there too, every day and he worked nights as a respiratory therapist, so it was especially hard for him to see me intubated.
I wish you well and I admire your tenacity and courage.
Sandy
Welcome to our family hun.. I am so glad you shared your story of surviving and I am glad that your wife is so supportive and loving to you!! I am glad you made it through this horrible time and I have never been in a coma but it sounds like you made an amazing recovery!!
I have had pneumonia and that alone sucks the life out of you. It took months for me to get any energy back after I had each of my episodes.
As far as cognitive recovery; even though I have never been in a coma I have suffered cognitive impairment with my brain surgery and some of that I will never get back. I have had to adjust living with my memory the way it is now. Sometimes, we go through some things neurologically and certain things are never the same. The neurosurgeon that worked with me told me the fluid on my brain altered the ventricles and affected nearby structures and this is why I had trouble with recent memory, speech, etc....I think it is all individual to be honest.
The docs cannot tell you for 100% certainty which things are gone forever. It takes time to see. In the meantime we are all here for you and in your cheering section. Take care and I cannot wait to know more about you!!! Hugs hun.....
Your "Tale of Woe" is amazing and I thank you for sharing it. You are an excellent writer by the way. I felt like you were sitting by me and telling it to me.
I remember you replying on several posts, so you haven't been forgotten. I also have memory problems, but hey I remembered you!
I have never been in a coma, but sympathize with your situation. Your wife is to be applauded for her support. I also think you should be applauded for you must have a strength in you that many wish they had.
Something I do know is when our bodies go through trauma recovery takes a long time. During that time our defenses go to the body parts that need the most healing, so other parts lose some of their defenses. I saw this when my grandson was born 6 weeks premature. His heart and lungs couldn't catch up with the rest of his body, so his defenses escalated to those areas. He was left with a lisp and memory problems when he was 2 yrs old. He still struggles and we are finding more problems as he grows.
I also have RSD and your symptoms do sound very familiar. I also am going to research yours. There is Biofreeze, Bengay Ice, any menthol that is cold helps.
The SCS wouldn't work for me, I can't stand any vibration. I'm glad its helps Sandy and it has helped many around here for a various of reasons. It might be an option to look into.
Your input is very informative and I hope to hear more from you!
Best wishes,
Toni
Wow mate, sorry to hear of the challenges you have been facing, especially over the last year.. Would have been a pretty scary situation to be in for both You and the family..
Can appreciate the lung collapsing, have had a bit of experience there as well, but thankfully not as severe as the infection you had..
I haven't been in a coma and not sure of what to expect with the recovery side of things, hope someone has a bit of experience to be able to give you some insight..
Glad you have posted champ, great meeting you and WELCOME.... and hope with time, you start to feel alot better n regain your health..
Cheers S
your 54 sometimes connotative ablitys go down a little with out age some i had a doctor put me on a drug called resperdone it made like a couch person it took me a few mouths finally i got upset take me off
he did for a while i could not r ember how to do anything i lost more slowly it came back but its took two years i might as well
have been in coma it was nightmarish .
but my point is that hes ok even what he went threw hugs minnie
I hope I didn't overdramatize the events. The fact is for me it was all pretty easy. I was out cold and didn't really know what was going on. I know I was awake when intubated but fortunately have no memory of it. By the time I woke up, I was out of the woods.
On the other hand, my wife (Joanne) had to live every minute of it. Another thing she did was to make certain that everything for me was exactly the same in my life. Right down to making sure I was paid up in the "office pool" at work!!!
My company was also great. I never missed a pay check and the only pressure to get back to work was the pressure I put on myself.
I know I was incredibly lucky. I am a huge believer in karma. What I don't know is if it was karma for good deeds done, or if I owe karma going forward. I'm figuring I owe a bunch of karma!!!!!
Thanks again to all who have replied and I look forward to reading more. As far as the CP of my neuropathy, I have seen the good, the bad and the ugly of how CP patients are treated. As a matter of fact, as a result of this experience, my "treatment" for CP has switched back to my PCP from my PMD. This has worked out great but it's the topic for a different post.
I look forward to being more active on this forum, there a a lot of great people here and I'm anxious to be more involved with all of you.
Mark