Hi George, I'm the same, my pain is nerve pain too I'm told...
I had a double spinal fusion L4/5 L5/S1 in 2010 thr the tummy! since then it's been all downhill. My pain is getting worse n worse unfortunately and I'm not coping very well. Lack of sleep and mobility. My legs suffer the most...I've takene matters into my own hands and I now lay them on ice packs as needed which is most of the time but unfortunately they then make them stiffer! Geez, I can't win...lol...
I take 40mg OxyContin plus 20mg oxnorm as soon as my eyes open because I have to the pain is thumping in my legs and I have to get out of bed no matter what time I go to bed.
11am fast release oxynorm 20mg.
5pm (repeated the same as the morning) extra 20mg if I have to go out and sit.
Lyrica seems to knock me enough to get a couple of hrs sleep. But oh my this lot doesn't seem to touch the sides. I was supposed to have a Ketamine infusion but that hasn't been approved by my insurance co then if that didn't help the spinal stim was the next step.
All I know is that I suffer too much George and it doesn't seem fair that I suffer so much.
I've been in pain for quite a lot of years and sometimes I just want to chop off my legs because they give me the most grief. Hot water at hydro-therapy seems to make my legs sting more so I've been going to a public cold pool to ezercise to keep my mobility. I still have a pool pass so I am using that atm and I went today however, I'm hoping that I don't end up like last Friday unable to move because of pain later on tonight....lol...
Ketamine would've been nice to try but it seems that won't happen and I need to make an appt with my pain specialist to see what the next move is. I can put up with pain but this is too much pain
Aye Carumba! Eliza, I can say with all honesty...I truly do understand. I'm signing off for tonight but I'll be back online Thursday. Let's keep in touch as I would like to hear more about your situation.
Quickly before I sign off. I was shocked in the early days of chronic pain by how exhausting it is.I was a fit 40 years of age when I ruptured my L4/5 and suddenly it was like someone removed my batteries!
Catch U soon. G
Yes, I'm exhausted too...always so tired but I try not to let pain or exhaustion show because I've had friends say "but you don't work" hmmmm what can I say to that. They know I worked all my life for 40 years but now I can't, no-way!
Oh and i don't have many friends now, they don't seem to believe me and one rang me recently because I've been isolating for the last year and she asked Why? and I said "I'm in too much pain and she said " so are a lot of other people" hmmmm I said nothing because I'm not going to justify my pain but it has changed and my legs have this thumping pain as well as pins n needles stabbing all the nerve pain symptoms...I kinda got used to that but this thumping, alienish pain that attacks me early morning " well I can't get used to that and it's enough to want to jump off a cliff! I don't know the answer...all I can say is I don't know how to live like this because I have no quality of life.
Hi George...sorry to hear that you also have had a rotten time with ketamine. I've tried a few times (at very low doses ...I get to a max of 10mg/5ml an hour as I'm so sensitive to the side effects) - my pain guy's words after my last experience were that if he suggested it again I was to tell him to "take a long walk off a short pier"...am now three years (I think) on from my last one and still have an entire week of which I remember nothing past a nurse flushing blood from my IV line (and in the process giving me about 15ml of the K solution as a bolus ) I started hallucinating, whole body went into exorcist style spasm ... and apparently stayed that way for nearly two days - probably no bad thing I don't remember as I was also apparently both conscious and completely lucid the whole time.
Eliza - I think that's part & parcel of chronic pain stuff I've had pain issues on and off since I was a little kid - but been the most incapacitating/isolating the last 8 years or so...and reckon I could count on one hand the friends from "before" who've stuck around. I've found some good friends since - online and through support groups - and my "in the computer" friends far outnumber my real world ones. If nothing else, this sure shows up who really cares about you x
The "Fair-Weather-Friends". Don't you love them? Barf Cough Barf.
Remember when they would ring and ask for a favour, and you obliged? Remember when you lent them tools and helped them prepare a 4WD Toyota as they where going on an outback adventure? I do but it seems their memories are short.The calls have stopped. The catchup cuppa just never happens anymore.
I have one friend nearby who I have met in the last few years who is a nurse. He can't work anymore because of 3 crushed discs in his neck! OUCH! We met at hydrotherapy. We are long term pool goers these days and I have to admit he gets my pain and I get his. I have sciatica and lower back pain that just never quits, he has neck pain and strong nerve currents in both arms. Alot of his friends have given up on him as he cannot be as social and sometimes he loses the plot and yells at people because he's exhausted and in CHRONIC pain. The cocktail of drugs he takes is enormous.
However, we have found each other (sounds like a bro-mance doesn't it). But I can talk to him when I'm feeling like crap and he can do the same with me and we get it. The Fair-Weather-Friends don't get it and I have to say it seems that women get a raw deal from other women!
The other thing I find frustrating is the looks I get when I park in a disabled Parking spot. With diet and exercise I have improved dramatically compared to 12 months ago however I still have limitations regarding how far I can walk. Shopping centres are deceptive in that you walk and walk and suddenly your head is spinning, your tummy is funny and you feel like you are going to drop right then and there. You look at your watch and realiseyou haven't sat down to rest in about 30 minutes.That is too much for a chronic pain dude (or dudette).
So as I have lost alot of weight and I look young for a 46 year old man people feel obliged to point out that I have parked in a disabled spot and I should be ashamed of myself. Seriously!
Recently a kind soul decided to point out the obvious regarding where I had parked. Well, I just ripped into him with rapid fire quips. (Bear in mind I was tired and sore after physio) it went something like this,
"Not that its any of your business but if you took the time to look you'll see I have a valid permit and after 3 spinal operations I have Failed Back Syndrome which means I am in constant pain. Would you like to see the 15cm scar on my lower back to prove it to you or are you now satisfied to allow me to continue on in peace?!?!!"
Well this blokes face went white and he didn't respond, I suspect out of fear and surprise. I would never have behaved in that way before pain but the drugs lower one's social graces filter (you like that analogy?) and I just don't care anymore about what people think.
I hope you get a chuckle out of this story. It's 100% true, tell your friends and family, I don't mind. It's part of the spice of life.