What are you looking for?
Featured Topics
Select a topic to start reading.
Had my yearlies this last week, MRIs and other tests and doctor visits. I’ve grown to hate the “What’s your pain Level?” Question. I’ve lived with it so long my brain has suppressed most of it. So in some ways when I say 7-8 / 10 that’s most people’s 9-10 levels. I haven’t seen anything less than a 6 in 10 years. Unless I am fully medicated up but when that happens I am worthless. Lying in bed stoned out of my mind usually.
He wanted me to describe my pain. (New Neurologist)
Let’s start with my spine shall we? Starting at the base of my brain it feels like someone is pinching it with a pair of pliers. Constant never easing. From upper back to mid lower back I can pretty much feel every level, constant burning, pinching, hot pain, and like someone had my spine inside their fist and constantly twisting it.
Lower back and hips. Absolutely miserable pain. Stabbing pain, burning. I can feel both sciatic nerves leaving the spine heading down my legs. Stabbing like I have Rambo’s Knife shoved into my L5 vertebrae.
Hips and to the knees inside of the legs burn like the worst sun burn ever but deep within my legs.
Knees constantly swollen, arthritis and pain
Knees down are numb half the time but can suddenly erupt into 9/10 pain with little warning usually dropping me to my knees.
I walk with a limp, favor my left leg. My right leg from a seated position I cannot lift it up. To stand I have to shift to my left and after a bit I can use my right.
I haven’t felt the bottoms of my feet in 5 years.
Upper body left arm is pretty good. Right shoulder down to my arm and hand constant pain, tingling. Numb finger tips.
Head. Thanks to 12wk Botox injections of 50-75 pokes my migraines have diminished 95%, only time I get a bad one is toward the end of the 12 weeks.
Sitting long periods of time everything mud gut to my knees changes sensation, I am unable to feel my gut or my bowels or bladder so I suffer from bowel leakage but I cannot feel my bladder and one of two things happen. As soon as I stand up I can totally void my bladder in a huge surge. Or two I stand at the toilet for 15-20 mins trying to drain it with it only trickling out and it only gets worse as I get feeling back to severe pain in the bladder since it’s so full. Now I have to force myself to stop every 45-50 mins and try and go, or have to wear diapers. Pull-ups cannot contain what I can unleash without a massive blowout.
Also if I push too hard I go into a seizure type event. I get really tired, everything around me gets muffled, I go lie down and usually wake up 3-4 hours later totally disorganized and disoriented. Soaked to the bone and wet, bedding thrown all over the room and bed torn apart like I flopped like a fish for hours.
I take so many pills to help 22 pills a day. as well as I have a neuro stimulator in my back. Without it I’d be totally bed ridden. And was for a while till I got it implanted. Before the implant I was taking closer to 35 pills a day. Mostly anti inflammatorys, nerve tranquilizers, pain meds, breaks thru meds, muscle relaxers etc.
Chest constantly hurts, tumors in the muscles of my chest and under the skin pushing on soft tissue.
Shortness of breath when pains at its worst.
Days by the time dinner is finished all I want to do is lie down and rest while projects are stacking up around me.
Not able to sleep without a major $7k BiPaP ASV unit, to breathe for me when I stop in my sleep.
Sad part is there is no escape, no cure, and nothing really out there to help.
MRI tech no longer counts nerve root tumors just says innumerable. Have 10s of thousands of pea sized tumors all down my spine and sciatic. Multiple more from grape sized to my biggest ones walnut sized. To a tangerine sized tumor all on my spine alone. Sciatic has thousands of them and so does that nerves in my arms.
The worst part, when you hear a Doctors and I should say multiple doctors say “Nothing we can do to help, at this point.” Surgery has been changed to only removing ones that are in bad locations and our life/death scenario. A few drugs out there, but with as many as there are in my spine , shrinking them may lead to even more issues including leaving holes in the nerves which can lead to other issues including spinal collapse.
Neurofibromatosis is not fun.
23 years ago my then Neuro Team figured I’d be in a wheelchair most likely by the time I was 40. I’m a few years past that and am now sadly seeing that day coming in the future. I’m losing the use of my right leg. And due to a tumor they call a plexiform I might be losing my leg just below the hip in just a few short years. I don’t even want to think about phantom limb syndrome. I told them a few years ago to just cut it off to help relieve pain. They could not due to the Do no Harm creed.
Tired of having to smoke myself silly every night. Struggling to just make it thru a day without resting every 30 mins.
With everything else going on in my life, I just don’t know how much fight i have left in me. It’s taken everything I’ve had the last 13 years to just keep going. Keep pushing. But I must.
And for the most part. I’m doing it alone. Tired of all the flakes that say let me know if you need me to get sorry busy when I do need them.
I haven’t had a decent night sleep in years. Nor had what I remember as a nice dream. I usually have nightmares, of me being chased constantly.
Just so very tired.
If you see a comment that is unsupportive or unfriendly, please report it using the flag button.
More Posts
-
Another year of tests
Spent my Wednesday laying on an MRI machine most of the morning followed by seeing all my different doctors. Getting old every year donating a day to the machin...
-
I gave you a flower
I'm scared of giving away flowers. There have been people who took one and stepped on it and there were those who took it without asking. It's scary, what peopl...
You would be tired with all of this going on. To think I went to the doctor today over a pain in my side which is most likely just a pulled muscle, and a callus on my foot. Do you have a hobby or any interests?
ReplyI do, Ham Radio and electronics repair. Heck I can wire a car bumper to bumper but lately been so wiped out I have no energy for hobbies. On top of everything I’ve been left with taking care of my folks as well. I had planned on being in Cabo next week but had to cancel reservations because my mom decided to throw a fit. I’ll get a break someday. Hopefully before I’m tossed in the ground.
Reply