We have all agreed, the doctor included, that now is the best time to fight for disability while I still have enough strength to deal with their bullshit. I'd been denied already and a lawyer said they wouldn't represent me, but this diagnosis is a game changer and I can sue for disability even while still working full time even though itll take a little longer it's the best option because I cannot afford my meds without my job.

The pain pump is something I'd really rather avoid because I've had family have terrible turnouts and they worry about me getting that bad so soon. For as long as I can I should rely on just what I've got, and when I max out on oxy then revisit the idea. Eventually I'll need to fight for ketamine transfusions which are the last resort treatment when you're in the end stretch.

The CRPS has no causality for the nerve damage it's actually because of the nerve damage.

Doctor clark believes I was set up for developing crps when I was born and my shoulder broke and I developed erbs palsy which STARTED the nerve damage, but it was the second time I broke my shoulder that triggered it and caused the nerve damage to progress.

It was like a perfectly balanced bucket of shit on a balance beam and that second break sent the bucket soaring.

So, first break damaged the nerves partially, but the second destroyed them, then CRPS was activated from there.

And crps can cause tremors. Which he prescribed a medicine he all but swears should help them and regain some dexterity. His goal there is that I be able to eat like an adult human once again.

@LadyAlyxandrea I know at one time they thought that was what I had. CRPS.
Thankfully when they repaired the carpal tunnel in both wrists (two surgeries done separately) the damage in my elbows and shoulders healed.
They were talking about moving the nerves from inside my elbows to my inner arms. I can't imagine what that would have entailed - or what my level of function would have been.
I know I spent a lot of time in those years cleaning my carpet.
I also bought a lot of dinnerware that bounced?

I hope the new medication makes a difference.
I do understand what you mean by the cascade effect.
I wonder as you research what you'll learn - if there are advancements that will work coming along?

I mention the pain pump because it is used in high level pain patients. It's very risky and I don't often mention it.

Ketamine? What is wrong with the Drs there that they would go from what you are on to Ketamine? Do you need to get to another State so that other options are possible?
Because that's insane.
You need to find a pain clinic or a Physician who offers you better treatment options then that!
I know all about the Opioid crisis but when the alternate is insane pain levels? What are they thinking?

If you need help researching? Holler!
There have to be answers out there.

Perhaps support groups for patients with CRPS could help you source better Drs? Was this Dr suggesting Ketamine was going to be your future recourse?

@RavenCT oh actually ketamine infusions have become a very promising treatment for patients with severe CRPS. My friend moved to Omaha and gets them twice a month and she feels like an entirely different person after it. Hers is her legs and after infusion she can walk and be a nurse 12 hours again. She swears by it. The ketamine is only flushed through the system and the psychological and cognitive effects wear off leaving only the anesthetic properties by the night time of the treatment. There are many articles about how quality of life for patients have skyrocketed since beginning the ketamine infusions. The problem is theres only a few places in America that do that, and the narcotics crackdown has made it much more difficult.

Because my allergies and intolerances to most other drugs, ketamine will have to be my next jump, if only because they know I don't have negative reactions to it. Luckily I still have 5 or so years of oxy to cycle through before I get maxed out.

Apparently there are a few other medicines entering stage 3 FDA testing that I could sign up for being a test subject for, but I'm not quite sure with my vast and lengthy list of other disorders that it's a good idea.

In the end I don't know really. I can tell you today I've already taken a little more than normal on my oxy and have noticed absolutely no relief, but it was a 6 hour drive, with a 2 hour appointment, and a lot of being stabbed, electrocuted, hit on my joints, anxiety, and stress. I am glad I managed to get a note excusing me from work for tomorrow because there is no way I could sit through work after this shit.

I'm absolutely exhausted too, because i only got 3.5 hours of sleep last night, and tonight I'm still reeling from the news.

@LadyAlyxandrea Yes learning those tolerances and being allowed to respect them at all? Really hard. Trust me on that.

Society thinks once you're officially disabled you sit on your arse eating bon bons? Not so as you well know.

And you just emptied your drawers of "spoons" altogether with this trip. And the testing and the stress.

I'm glad you get a little time to get back together. Hang in there.

I'll read up on the infusion? Sounds like what they used to do with lidocaine? Only it lasts way longer.

@RavenCT average relief time is varied between 1 to 6 months, and currently there isn't very controlled studies, but the crps people that get them rely heavily on them claiming their pain cut in half or more.

I think I'm actually negative 100 spoons honestly. This has proven almost as horrible as the time I had a neck injection and was paralyzed for 10 minutes. Only this time I'm not terrified I'm going to die. Top it off my allergies are just off the charts today. Just popped a benadryl a few minutes ago might pop another my mouth STILL itches and my nose is still running faster than Usain Bolt being chased by a cheetah.

Here's one study that I'd found on infusion. [consultqd.clevelandclinic.org]

Still I think I'm okay emotionally. I've kinda known that this was only going to get worse, so finally having that confirmed has been more relief than anything. But telling my Mimi (grandma) that I'm going to die a slow slow painful death in agony was really rough. She has enough issues to worry about than the fact that her granddaughter is going to suffer.

Breaking the news to my two best friends was a little easier. One took it as well as can be expected, one didnt say anything at all, I know she's gonna be there for me through it, but i feel bad knowing they will have to watch this.

My mother is in the same boat as me, though I think she struggled with believing that this was going to happen until he confirmed it. My brother was just upset that it meant he will have to keep carrying stuff for me lol.

Ah well it could be worse. I think. Like...well I can't really think of how much worse but I'm sure theres something haha

@LadyAlyxandrea Knowing there 'Can Be' something worse? Hmm... not always that helpful.
Like "Gee it could be This Catastrophe instead?"... Would that even be wishful thinking? I'm not sure. There are a few conditions I'm glad I don't have. I'll admit that.

Thanks for the link - I'll definitely read that tomorrow. I like having the latest information because I'm constantly running into new folks who may need it. And it's always good to know more.

I'm glad my parents weren't around for my diagnosis - but my Mom knew what was coming. (I think). Other than that - I don't have too many people to freak out other than a few close friends. I freak for them - they freak for me - we try to keep it even.
The one that's my age with two replacement hips and numerous back surgeries has some owed to her from my side I think? She's had the most surgeries of any person I know and she has an awesome pain tolerance. Or she has less nerve conduction. I ponder that now and then? (Frankly I think she disassociates from the pain - I wish I could train myself to do that and still function like she does?).

I can well imagine your brother's reaction. lol "Damn! I still gotta haul her crap?". That had to make you chuckle at least a tiny bit?
And no - no fun at all telling your Mimi.

I hope you get some decent sleep tonight. You've definitely earned it but it's hard when you hurt. I know.

@RavenCT yeah at some point I said "well at least it isnt ALS" but I stopped and thought "quicker death...less pain....hm" then I thought "well at least it isnt cancer" oh but there again, STILL less painful AND that has SOME treatments" (that's how bad crps is. It makes cancer pain feel like a sprain. That's terrifying.) It all really comes down to 'they all are horrific in their own ways' and your individual perception of suffering vs life expectancy. Plus I really shouldn't say there are worse things because I would end up having those worse things. That's what happened here. When my arms went from total numbness to extremely exaggerated pain from mild water I did start crying 'oh please don't be CRPS please no please' and look what happened. Typical!

Honestly I had to laugh at the irony. I spent almost my entire life suicidal. 12 years ago I magically stopped wanting to die and began truly enjoying life after a bit. I say magically because most people don't get 100% better, they have relapses, and I know I could, but the last 12 years I've wanted nothing more than to not die.

And how do I celebrate my 12 years of suicidal sobriety? Do I get a cool chip like the AA dudes? Commemorative pen? No I get the SUICIDE DISEASE.

Talk about irony. I am still laughing at that cosmic joke.

Your friend and I have that in common. I dissociate from pain as well, but only for like, sudden extreme pain like joint injections and incisions. I scared the doctor once when he stuck the lidocaine needle in my toe knuckle to remove my toenail and I just stared and then said "you need more here" without wincing. My mom was creeped out by me. I apparently get monotone and look hollow when it happens.

I just think my body has figured out jerking or crying or tensing makes it worse so I just....go away for a bit. Lol.

It's crazy lol.

@LadyAlyxandrea Oh I do it during Botox injections. The nurse just stared the second time. Apparently they are used to patients flinching?
But for extreme pain? Not always. I've gone out cold just a few times usually after something awful? Which is useless? I want a rebate on this model sometimes but I'm still getting mileage on it. ?
So I guess we stick with the ride we have?
And yes it rots when you decide you want to stay at the party and something tries to take you out early.
Cancer has nothing to recommend it. But this absolutely does not!

@RavenCT oh! I didnt even tell you the funny parts!

Okay so maybe they were just funny to me and mom but still

Okay first I explained to him the doctor that did my last emg and nerve conduction test said I was "almost completely normal" and his eyebrows shot up and he said "um okay alright but you have erbs palsy" "I KNOW" "erbs palsy is a nerve...damage...." "RIGHT?" "SO......either hes blind or he wasnt checking in the right areas because even I can see just sitting here that you do, in fact, have erbs palsy" "and i can tell you i do in fact have legitimate nerve pain."

Then we proceeded to the zip and poke. He does my hand. "Aw nothin." Middle of my forearm "nope". Inner elbow "OH OH THATS SOMETHING!"

shoulder "OHOHOHOOOO". Shoulder blade, I scream, he jumps up like his team scored a goal "MONEY SHOT THAT IS NOT NORMAL THAT IS REALLY REALLY NOT NORMAL!"

ME: "WHOSE SIDE ARE YOU ON!?!?!?!"

lol he was thrilled to find all the nerve damage and I was too because it justified me, and corroborated my MRI because it's the same nerve as the vertebrae with the stenosis, but still, cheering for extensive nerve damage lol how bizarre we must have seemed.

Then as he is filling out my script for primidone (the tremor medicine) he is telling me about potential side effects to watch for. "So the big one you have to worry about is excessive sleepiness"

"I should have mentioned this before during your initial questions but I have narcolepsy...."

"Ohhhhh okay....so....then it shouldnt be much of a difference" lol.

Yeah. It is. I have to make plans now for long term care and get everything settled