Hello there, I'm new to the site/app and I wanted to introduce myself. My name is Dee and I'm 41. I have two wonderful kids, my daughter who is 17 and a senior in high school and my son who is 10 (11 in January) and he is in fifth grade. I live with them full time and my girlfriend who is my godsend! I swear she helps me more then she can even imagine. I also have 2 cute dogs, my chihuahua Snoopy who is 10 and loves me more then anyone else and our beagle/jack Russell terrier who is 3 and she was born deaf so she is cute but a real pain sometimes so I guess that's why she is my daughters dog.
Now comes the fun part, the reason I'm here. I would love to say it's because I've heard you all are the most awesome people and the coolest forums to hangout on (I think that's probably true anyways) but that's not my reasons. I was officially diagnosed with fibromyalgia in 2008 by my primary but my gyn who has known me since I was 16 believes I have had it since I was a teenager. From my discussions with her she estimates around 13 for me. In 2009 I herniated a disc in my back at L5/S1 it was severe enough that surgery was really the best option if I wanted to continue walking.
On October 23, 2009 I had a discectomy/laminectomy where they removed most of the disc. No fusion, it was outpatient surgery. We had high hopes. 3 weeks later my girlfriend was taking me to the ER as I had green stuff coming out of my incision and my right arm hurt and my chest was tight. I had MRSA. 10 cm deep and 8 cm wide in my spine and my blood pressure was at stroke levels. I had to have another surgery to clean out the infection and then it had to heal from the inside out leaving a ton of scar tissue. I spent 17 days in the hospital I was on home care for 3 months after and out of work for 7 months after I was released from the hospital and the pain never total faded. I was told the surgery was considered a success but the fibro was now giving me more issues. They found 2 more disc centrally herniated and so then I was diagnosed with degenerative disc disease and told to be careful how much I lifted and twisted due to where these discs were as no one wanted me to have to go through surgery again. I am also overweight. I weighed 298 when I had the first surgery and I had been at that weight for about 8-10 years.
Over the next 1 1/2 years I was on more medicine then I ever took in my life! 3 meds for blood pressure as the MRSA messed with my heart a bit, my diabetes medication, nerve medication Lyrica, and now pain medication and muscle relaxers. I had swollen feet and an almost constant sour stomach. The summer of 2012 my thyroid started having issues so I'm now also on medication for that. I couldn't move much and I was always tired. My balance was off and by September of 2011 I weighed 398 pounds. I had gained 100 since my surgery. I hated my life. I still got up for work as like everyone else I had bills to pay. I had been out of work for a while so I tried to file for disability and was denied December of 2011. So a friend of mine who lived in Gainesville, FL helped me and my girlfriend get a job at a great company up there so I moved from Melbourne, FL to Gainesville. We also figured with Shands I would have access to some of the best medical care. So we moved our family 3 hours from all our friends and family to try and start over.
We moved March of 2012. In July of 2012 I hurt my back again, the same place L5/S1. My primary sent me to an ortho and not a neuro this time and they didn't want to do surgery due to the extensive scar tissue. By December I was dragging my left leg and making it to work 2-3 days a week. I had to stop Lyrica due to the cost with my new insurance and gabapantion gives me migraines so it was back to pain pills and muscle relaxers along with Tylenol and ibuprofen and aleve. In January 2013 I stopped working and took medical leave went to a neurosurgeon and had surgery on 2/14/13. Again a discectomy but this time no infection, but found out on top of no tolerance to morphine, I also get very paranoid from ketamine. It was bad!
They insisted I do therapy this time in the water which was actually nice. But the pain came back so I had an MRI and an EMG again and it hurt bad. I had had one before and it didn't hurt like this, they said it's a sign of the damage. A neurologist went over the results and told me I have permanent damage to the nerve sheath in the base of the spine. The scar tissue is causing the sheath to rub against the nerves causing pain and then burning and numbness when the nerve ending is completely destroyed. I have numb spots on legs and feet right next to spots that hurt like someone is trying to rip out the muscles. He said that if I didn't take care I was going to end up in a wheelchair as my legs will stop responding due to the damage but I will still be in pain.
I continued trying to work for another year. I filed for disability on 6/3/14 I was approved in January of 2015 and they backed it up to the last day I worked which was 5/09/14. The funny thing is with the money for me and my kids I make more staying home then I did working. In the past 11 months I have gone from 10mg oxycodone 3 times a day to 30mg oxycodone 4 times a day and 50mg tramadol as needed every 6hours. I rotate with 3 muscle relaxers so I can't get too used to one, this is what my doctor and I feel works for me, I have 800mg Skelaxin, 10mg flexiril and 5mg diazepam which also helps with stress, I take 50mg of Topamax for nerve pain and migraines, it also assists with weight loss, I take a weekly shot that is not insulin for my diabetes that also helps with weight loss and I now weigh 275 lbs with a regular loss of 5-6 lbs a month (GO ME). I use a cane and a back brace with pulleys to help with counter pressure on my low back for when I am out and about and I have a rental wheelchair for when the kids want to go to the mall or museum or zoo.
For me the hardest part is my back issues have me at 80% bed bound, but the fibro needs me to get up and get some exercise of some kind daily or it can get worse. I can't even tell you what hurts worse as they seem to trigger each other. Some days I'm doubled over crying and hobbling just to get to the bathroom as the meds I'm on are just enough to keep me able to drive and such. If it's really bad I have to double or triple up on the meds to keep from screaming.
My family can get really bad sometimes with holding me back as they get really scared I will hurt myself again. I try to tell them to let me do what I am able but to be there if I need help, but they would rather have me lay in bed and do everything as everyone remembers the hell of the hospital and the months in Gainesville before the second back surgery. We moved back to Melbourne as I wanted to be closer to my family when my daughter goes off to college. The community college is also really good here so she is going to stick around and do her first 2 years there and then probably just commute to Orlando to get her bachelors degree afterwards. I'm pretty sure she wants to stay close because of my health issues as we are really close.
So I realize that was probably a really long into, but I figured I might as well lay it all out there. If anyone ever wants to talk I'm here. My email is email@example.com and I'm open to new friends.
I also have polycystic ovarian syndrome so I get painful cysts on my ovaries, and I was diagnosed with starting menopause last year at age 40. It sucks as sometimes I miss a month or even two then when I do get it, it's like I get all the months I missed all at once and I now get cramps around my back too. I've been told when I don't get my monthly for 12 months I will be considered in full menopause not peri menopause like I am now. I also have cystic breast disease which doesn't bother me much just sometimes with my cycle sone of the cysts can be very tender. I had 2 lumps removed in my right breast in 2004 because they were hard and they had to check but they were benign. I also have an issue with my white blood cells mine now run anywhere between 15-17k so I get sick a little too easy. Shands ran every test they could and sent me to a hematologist and they determined it's due to the pain. I can tolerate a lot mentally, but my body can't. So my body thinks there is something for it to fight when there is nothing so it's over producing white cells which is actually lowering my ability to fight off minor colds and infections. So I end up on antibiotics about 4-6 times a year now, it really does not help my pour stomach. So lately I have sort of a sweet tooth as sugary things are some of the few things that don't give me stomach cramps or nausea. My doctor isn't happy but since my blood sugars and my A1C test are normal he is leaving me alone for now. He said if I'm losing weight and my tests are good he's not going to give me a hard time, I have enough issues without him adding to it. He is the best doctor I ever had. He is my primary and my pain management and my chiropractor all in one!