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Introducing myself to ever and new to site

Nov 23, 2015 4:51 AM

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 dzorbis74@gmail.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!

Nov 23, 2015 6:56 AM

Dee, first I would like to welcome you to our family community. You have definitely come to a safe place where there are many people are always at the ready to help when you need it. I have found this forum and my pain family to be a Godsend. There are no judgements here and you never have to worry about venting, crying, ranting or just getting whatever you need to off your chest. We "get it" because we live with it every day as you do. I have been in pain for 22 years. At this point it's level 8 and I can't get it below 7-7.5 any more even on meds. I have had 29 surgeries in the last 22 years and have been formally diagnosed with fibromyalgia, CRPS/RSD, DJD/DDD, cervical spondalytic myelopathy, scoliosis, thoracic degeneration and spondylosis, scoliosis, lordosis, SI Joint distinction with fractures, grave's disease, hypothyroidism (due to removal of thyroid), TMJ, anxiety, depression, and a laundry list of other stuff I can't remember right this moment. I am really happy for you that you have such a good and strong support system around you. Just getting through the day with this kind of pain and having to raise kids, work and maintain a relationship is truly a feat in itself. I am glad that you are here with us, as even if we have a good support system, we can always use more. Sometimes you just need to speak to someone who "gets it" (as we do) and know that you're not alone. You will never be alone with us. No matter the day or the hour, someone is always here to help when you need it. It seems you've really been through the mill with your back and I can sure understand the infection because I had the same thing happen to me after one of my surgeries and ran 104.3 fever and had to be taken to the surgeon who opened the incision, cleaned out the wound and I had a hole that was 5 inches in diameter and the infection ate it's way all the way to my pelvic bone. I had that hole for 9 months and had to have 2 subsequent surgeries to finally take care of the problem. So, I welcome you aboard, hope that you find any information and/or support helpful and that you settle in and hang out for the long haul. We're all in this together and together we get through the bad and the good. Sending you well wishes, {{{Hugs}}} and prayers that you have a peaceful and less painful Monday.🌻🙏🏻

Nov 23, 2015 9:06 AM

Good morning Dee and welcome. I totally understand where you are coming from with the MRSA issue. I've had 2 big surgeries this year for it, and as many office lancing as you can shake a stick at. I've also ended up on IV antibiotics 3 times for it this year. My WBC count has always been normal, but they suspect an underlying immunodeficiency with me as well.

Nov 24, 2015 12:28 AM

Thanks for the welcome! I've tried to find a local support group so I can meet people in person but there aren't any unless I want to drive an hour. It's really great to see so many people on here as my family is odd. My father is an eye surgeon he just retired about 5years ago and still had his medical license, still goes to meetings at the hospital, yet he is the one who least understands. He has days where he tells me I am wasting the good years of my life and that I am "giving in" to the pain. He says it can't be "that" bad since you would hear more about it. Then when he hears I'm having a flare he's all about giving me advice about treatments and drugs and telling me the best way to take my meds for the highest effect. I swear he's like two different people. It's a dang good thing I already know about his drinking problem or else I would be really worried. He is a functional alcoholic. He never drank before or during work and he will be 73 this month so he was plenty ok to retire, it's just hard being his daughter. When I was in the hospital with the infection for 17 days he only came to see me once and that was to accuse me of drug seeking. Which made no sense! A nurse heard him and came to talk to me afterwards and told me she didn't know me or him, but after almost two weeks of being my nurse she didn't believe I was just seeking meds. My father had seen me slurring my words from the high dose of dilauded they were giving me through the IV I was getting 4mg every 4 hours and 10mg loratab by mouth every 6 hours and some kind of muscle relaxer I think it was that really addictive one Soma, so if any of you know about meds I was messed up. Prior to this and my back surgery about a month prior the only thing I ever really took for pain was Tramadol and that made me loopy. The stuff by IV made me really whacked out and I was still screaming every time they changed the dressing in my spine.

Anyway for me the hardest thing is that I still just can't accept that I can't do things anymore and I get so tired. I'm tired of taking pills, I'm tired of being tired and I'm tired of being scared. I hate that wheelchair and I don't want to end up in it. I know I've been told that nothing can stop the nerve damage anymore, but how do you move on and accept the limits of your new life. I used to be do strong, physically, and now I have to ask for help on everything and I hate it!

Nov 24, 2015 2:52 AM

Hi Deez, my names Greg. And yes the people here are extremely helpful. and I do thank them. I have very similar pain in the same area's with surgery and nerve endings that can drive me suicidal at times wait a minute not all of youre pains I'm a male. .from Australia . A psychiatrist prescribed me Cymbalta Seroquel amatryptline/endep and only 5ml endone these helped dramatically from only being on opiates, you could suss these medications out and maybe a higher dose of endone or oxycontin or any good medication of the same type. some one in the community could advise a good one, but this is only my suggestion there's a lot of hope in this community, just ask

Nov 28, 2015 12:16 PM

Welcome to our community family DeeZ! It is a blessing you have a close family support system at home, as many in our community do not. I also have it and feel very blessed. Your story you shared is nothing less than horrific! I'm amazed you have such a good outlook, because as positive as I try to stay, I'm not sure I'd have survived your experience.

I'm 54, married 34 yr with 2 grown daughter's and 1 granddaughter. I have had spinal issues since the early 90's with 2 cervical fusions, C4-7. I have issues all down my spine with bulges, tears, facet stenosis, OA, etc. I need surgery on my neck, below & above but no one will do it because the risks of paralyzation is too high. So I'm hoping & praying they don't pinch off nerves as my spine continues to deteriorate. I also have migraines, sjogrens, fibro, hypothyroidism, pelvic floor dysfunction and pelvic congestion syndrome, dizziness and imbalance, neuropathies, DDD, TMJD, and many other issues. I worked until 2010 when I had surgery for a 10cm mass, followed by complications & piggy back conditions. I now walk with a cane for balance & safety, but occasionally need my rollator walker or an electric cart in big stores. I've also developed tremors.

It took from 2010 until 2014 for me to accept that I am now disabled and will never be able to return to work again. During this time I went through the same emotions as if I'd suddenly lost a loved one; grief over losing my old life. I had anger, frustration, moodiness, depression, anxiety, etc. Then when I finally accepted I would not suddenly improve overnight, that this is my life, that this is the normal me, that's when I began to feel better mentally and could actually focus on doing what I am capable of doing. Educate yourself on your conditions, and if in doubt ask the community for advice. That's what we're here for, support for each other. (((Hugs))), admiration for your strength, and I will add you to my prayers. 🙏🌼

Dec 09, 2015 12:15 AM

Thank you both for your responses.

Greg, I've tried Cymbalta and amatryptiline and had bad side effects, also tried Savella. It seems that anything in the antidepressant category messes me up in a bad way. I wish things like that would work because taking 30mg oxycodone every 6 hours just to get through the day is okay but doesn't leave much room for any bad flares.

Flappyslady, some of it was horrific, but the fact that I can still walk is a bonus. The worst is the toll it has taken on my kids.

Both my kids have been diagnosed with PTSD from when I was hospitalized. They have nightmares about losing me and tend to have even more issues when I get sick or the pain flares and I can't do anything. I made my son start counseling again this school year since we moved back to our home area. He's 10 right now and also has ODD and had to be put on medication as his aggression was getting really bad. But he is starting to do better. My daughter at 17 refused counseling as she didn't think talking to anyone would do any good. She was also bullied in sixth grade which is the year I had all the medical complications. So she also had self esteem issues and anxiety attacks and a lack of trust in people. So she has few friends and no best friend except me. She had anger issues too but didn't act out as much. Last week she had a breakdown at school, it turned out she had a sinus infection too which probably didn't help, but she walked out of class. That was Tuesday December 1. Since then she had made it to school for a grand total of 2 hours last Friday and a 2 hour band rehearsal last night.

When I lay on my stomach and watch her and talk to her it's like the spark that was my daughter has burned out somehow. It hurts so much to see her this way. But I had to wait for her to be ready to start therapy and possibly medication or at her age it would her her parents.

Dec 09, 2015 12:34 AM

Sorry for the typo I meant without her being will that at her age it would be pointless. Stupid spell check.

I have to go for another MRI and this one has me scared. Something in my upper back, believed to be between the shoulder blades is causing my left hand to go numb and then to start feeling like it's been dipped in battery acid. I was told it's normally the c-spine that caused problems in the hand. But when it gets really bad my gf rubs between my shoulder blades and tried to stretch the spine and it's almost instant response. So even though it's not usual, it's possible. So my doctor ordered a c-spine and t-spine MRI and I am expected to do it before my next appt on 2/3/16. I'm terrified. Because he already asked if I am willing to have surgery again. He said he had a few ideas but wants to wait till we can see the results before he opens his mouth and makes me worry.

If anyone has had anything like this happen, please let me know as the thought of surgery scares me. Yet, I'm being woken up with this burning pain in my hand because the pain is like a 9 now so it's already scaring my family.

Any advice would be great. Or advice with my daughter too. As I can't admit her for an evaluation as part of both my kids PTSD is that being away from me makes things worse. I was barely able to go to my doctors appointment and stop by her school without her calling and starting to panic. She told me it would be great if our family of 4 could leave town and basically run away for a week or two. Yet she won't even stay the night with anyone right now.

Well I wish those of the Jewish faith a very happy Hanukkah!!

Dec 16, 2015 7:00 PM

DeeZ, I wish I had some suggestions to help your children adjust easier to being away from you. Unfortunately it takes time and maturity in years to learn to deal with separation anxiety. My youngest was only 10 mos when I was hospitalized 2 months. She suffered from it for years, and to this day won't stay by herself at night unless she has a dog. She's now 27 and though she's better at it she still struggles. Though it's easier said than done, try not to let yourself get too stressed about the test. I will keep you and your family in my prayers. (((Hugs))) 🙂🙏🌼

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