A little Shrek

Fibro comes with hyperacuasis?  Oh, try it!!!!  It is like being tortured by sound.  I beg my cat to stop meowing, I cry for no reason because it all is suddenly so overwhelmingly loud and painful-even with hearing protection and earplugs, sometimes at the same time!!!  I know of folks through the Hyperacuasis Network who have gotten RSD/CRPS from the hyperacuasis and not the way I did, which is vice versa-now perhaps this is letting those idiots take up space in my head, but when they have a friend of mine who suffers horribly from pain from her cervical spine to her coccyx basically, I have a fucking problem!  She says "I see how much pain you're in, hear fibromyalgia patients whining when then have a whole ounce, plus the narcotics, and you are just dealing, sometimes pasting a smile, how do you get through it?  I don't even know what to say-I can't feel like I can even begin to say I hurt just watching you suffer."  What does she do?

Not this:

Oh, sorry about your troubles darling, but let me count my blessings or curses.  My body this morning as I PRAY that my father gives me enough money to buy a decent sum of weed to put out the flames that feel like they LEAP off my body to go with the plethora of medication:

She helps me out-not just by helping get my hospital bed out of my living room and getting my house in order, and laundry-all the things I can't do anymore, and I am legal as is she so as long as we are both in agreement-she brings "shake" and I "bake" and then-we both do.  But unfortunately, I am messy when I cook, but she wants to come in and DO it for me.

Zonegran 400mg at bedtime
Tegretol 400mg BID
Duragesic 75 (was far higher before weed and was also on other meds-MTD)
Keppra 500mg (need liquid and need it higher, maybe 750mg?) at bedtime
Clonazepam (dose with held) and I take it for seizures since childhood,

I have CRPS, aka "CRAPS"

I can't do a lot of things.  Mostly right when I want to do them.  I have to have help cleaning my house.  I also have to sleep in a hospital bed.  I have to take all that antiseizure medication, in additional to female hormones, migraine medications as needed, and medically (as more of that than anything else!!!!) and since I became I patient, and discovered a friend with "access" to shake, I can make my own stuff like cooking oils that can go for up to $75 a bottle, and as I make the hash going in-I get what I ahhhhh, put in?  And what I put into it, I get out, and that is PAIN RELIEF.

Each day I open my eyes I don't want to move, I want to lay in the hospital bed, under my plethora of hand-sewn blankets of fleece since I can't tolerate other materials than fleece in the blankets and a bottom sheet that is very soft flannel.  I wear cotton, fleece, or soft flannel only.  Some days I can't wear clothing- and others, I have to.  I function usually between 9pm and 10am, and hide in a shaded, well darkened apartment because light is so intolerably painful, I want to scream at the level of pain it costs me-marijuana, narcotic medication or not.  Oh, then there is this: we have also got the fun part!  Gee bout maybe going to looking like a fat pig from laying around and letting RSD pain be my slave and master: or allowing  my pain be my GUIDE, and lady: I am NOT comparing our disorders.

I have nerve pain-but I do also have diagnosable fibro.  But people like this piss me off because my friends look at me and say that they hear fibro patients whining about pain, and see what I suffer through, and they feel like they have nothing to complain about.  NOOOO~ you fuck with my friends, you fuck with me.  Ok, cuz they are my fucking lifeline.  I see shit about my fucking family, and almost got killed by  my sister when I was seven, and the 2 years after my daughter was born, I frigging was put in foster care and came out on my own: pregnant.

And yeah-but hey, I made the best of it.

You can make lemons or lemonaide-it is up to you.  You can be angry and pissed off, but you can whine about what you can not do, or what you can do is set small steps to get to the point where you can pick your baby up.

Or maybe he is a big kid, and you can't do it.  And try sitting down and put a blanket on your lap and let him crawl onto your lap, and curl up for a cuddle: kids can be much more a comfort than a pet even-if you have a good, healthy relationship and you give them an accurate understanding of the pain you really are in, since kids are perceptive, they can tell, just like a pet.

What qualifies me to say all this?  I also have diagnosable fibromyalgia.

This is me now!



They don't because I would be required by my insurance to take antidepressants, and having been recovered from: Bipolar I, Severe, with psychotic features for 3 years only to basically get PTSD from the shitty healthcare, but when I hear of these folks wasting the time of the rheumy's at Mayo to get fibro diagnosed on some "support page" I am sickened.

But these, and as much as I hate to say it, as Elizabeth Weiss is a fellow sufferer of RSD, she too, allows her pain to be her slave and master.  She lays in bed day after day and is clearly taking the narcotics-the oxy and the duragesic, and though many people do need to change every 48, particularly those who are of tolerance, she has many very full bottles of neurontin that she doesn't touch.

That is most likely to help her.  But with Independently mediated pain, the first thing she needs is to get where people are going to if need be, and this is my opinion-as an RSD sufferer and as an RN- make damned sure she gets daily therapies as she desperately needs it.  For example, with Dr. Schwartzmann, he generally doesn't prescribe ANY narcotics, and with kids, a 2 hour a day EXERCISE program.

My body has been ruined by pain specialists and docs who couldn't tell their asses from a hole in the wall.