Hi, just introducing myself. Year 11 after what seemed to be a simple car accident. Main issues chronic pain, neuropathy, fatigue and consciousness issues. I'm glad I found this program, seems like it will help me communicate better with my new doctors and hopefully facilitate my care. The community seems great.
Welcome Tripletdad! So does your name mean you have triplets? I have a friend who had triplets her first and only pregnancy. I hope for your sake and their, they're not babies! Bless you in more ways than one!! 😉
This is a great app & support community. I've got chronic back issues from multiple accidents since the 90s, and other chronic pain issues since 2008-2009. Fibromyalgia is one of the worst. I've only been on here about 6-9 months, but I've gotten some great advice/suggestions on diagnoses/ideas. Good luck & God bless!
Nice to meet you. Triplets - yes - babies - no! Thankfully past that stage. Waiting for them to get off bus now. I have consciousness issues 1-3 a week, so among other issues they found (my old primary said fibro was one 'but no one likes that word...' grrr) I've gotten to be an at home dad. Thank you for the blessing - I keep every triplet blessing I get - they are great to hold on to during tough times (which lately is 8:00 - 5 year old bedtimes lol) also our first and only pregnancy - GBB.
Chronic pain issues and complications seem to add up don't they? Darn motor cars.
Thanks for the welcomes...@ sandibeach I have multiple brownouts and blackouts a week. Dr think it is structural (cervical) - I 'broke' a vertebral artery on my left side and it is non repairable. The theory is that as the right artery has grown to compensate it is in a constant battle for space from my cervical stenosis (as it weaves in and out of the vertebrae) When I move the wrong way I can drop...usually relatively controlled, sometimes quickly. One doc told me just to not look up, down, and left - piece of cake! First time it happened was at work, and that was close to an hour down and 3 days in cardiac care (thankfully not my heart) I ended up returning my driver's license - started happening more freq and I was all over the road - checking my blind spot was a bad trigger. Sorry to go on, just feels good to talk about it - #toomuchtimehomealone
Hello everyone I have only been on here a few days. I really hope this app helps me communicate with my Dr. Better. I have had fibro for 14 yrs along with sarcoid of the lung and liver, migraines and Addison's disease. I am disabled and I struggle everyday just to exist.
Skatemom. I'm sorry you are going through all of that. Yikes. I have had some dark times where I just wanted to curl up in a ball and sleep my life away. No fun. Thankfully I got out of my deep 'hole in the ground' as I called it when I was going through that a couple of years ago. Since I relented to taking pain meds daily I have to say that my qualit of life has improved. I try to make the best of each day. Some days I just gotta stay put on sofa ( like today) and listen to my body and rest. I hope you have sunnier days. This is a good place to vent and not feel so alone.
TripletDad, re: brown/blackouts. I asked because I have been doing some research about Chiari Malformation...I had an MRI of the brain a couple of months ago to rule out MS. It was ruled out but something new was noted, some herniations from my cerebellum down into the spinal column (or something like that). Anyway, one of the symptoms that I don't have was blacking out and I was just done reading about it when I read your post. Some of the stuff I read about it was that it is often misdiagnosed as fibromyalgia which is interesting because I have fm. Food for thought. But that sounds like a dangerous symptom to have and not be able to do anything about it!
TripletDad, you make my symptoms seem mild. I'm so sorry for your problems. However, the last time I saw the Ortho he was helping me understand why, though I have neck disc issues, I am not in need of surgery yet (& hopefully never). I have mild neuropathy without spinal cord or nerve impingements.
Anyway he mentioned having to stabilize a patients neck & skull because the mans head would just fall forward; he couldn't hold his head up & sometimes pass out. He said they used titanium and screws at the back of the skull, and permanently attached it to his spine so 1) his head wouldnt fall forward & 2) he wouldn't pass out. I know it sounds drastic, but it might be an option to check out, for safety reasons... You don't need to fall down stairs when you suddenly black out. I'll say an extra prayer for you.
Thanks FlappysLady81. That's actually good information for me. One of my doc's at Mass General in Boston discussed removing the front of my cervical vertebrae to relieve the pressure for both the passing out and the nerve pain. The issue with that is the weight limit for lifting afterwards - 8 lbs. We both decided that at my age and with the kids it wasn't the thing for me. Made some type of fusion like you wrote about would work for me. My new doc has nailed my asthma, but told me not to pick my kids up anymore...so we will have to work on that before I bring up fusion lol.
As far as mild - I doubt your issues are mild. we all have different tolerances - but being in pain all the time stinks. Stay strong.
Yeah, we do have different tolerances. Right now my asthma is flared up, from the cold weather and all the bugs being passed around...right into my lap! Lol. I can't shake this head congestion & cough. But I have no fevr, chills or weakness so I'm just riding it out. Good luck with the suggestion to the doc. You know they don't always like our opinion...😱
Yes - I hate having to repeat steps 1-100 with a new dr so that we can actually start treating the problem. I gave the dr a 9 page outline of symptoms, treatments and results. Hopefully he won't be aggravated by it as I am trying to save both of us time.
You guys are so wonderful. I am very sorry to hear the problems out here but its nice to know we are not alone. I understand about having to explain over and over to new drs because I am so sick of insensitive drs so I have changed docs many times and in the process of getting a new endocrinologist. I am determined that I am going to get the help I need. I guess I am getting older and grumpier. I hope all of you are having an OK day.
That's adorable, I'm sure they're quite the handful at times. I know my boyfriend's mom practically went insane when they were little. But she always says it's worth it. Because they're still adorable. And still a handful.