feeling like a guinea pig

[mopinko]

i just get so tired of trial and error sometimes. i have been feeling crappy, and the new rheumie wants to see what he can learn by trying me on meds that have already failed, as far as i am concerned. been on prednisone again for several weeks, and now a new nsaid. arthrotec? blech.

[REP]

1. I Would Kill for An NSAID

Unfortunately, it would kill me, but my crippled arm hurts so goddamned much I almost don't care!

[mopinko]

2. have you tried marijuana?

you don't have to post an answer, but it does help a lot of people who have not found any other relief from pain.

[REP]

3. NSAIDs Work For Me, But They're Too Nephrotoxic for Nephrotic Patients

It's not exactly like one Alleve would would make me flatline (there is the remote chance it would, but there's also the remote chance I'll win the lottery if I buy a ticket!) but the damage to my arm is so bad that to get relief, I'd have to take NSAIDs daily, and that *would* kill me. Since the problem with my arm/hand (nerve damage, tissue scarring, tendonitis, tenosynovitis, et dreary cetera) is "just" pain and loss of range of motion/strength, not life-threatening issues, it's too risky to treat it with steroids. Unconventional therapies would be a delightful distraction from just how much it hurts ... but I'd probably just make the injuries worse fixing snacks! I'm doing what I've been doing since I was injured: rest, ice, splinting, bracing and bitching, and looking longingly at the Alleve and ibuprofen and the drugstore!

[mopinko]

4. "just" pain

i hear you there. nsaids wont kill me, but after a short time, they make things worse. i took a few days off from the new pain drug to see if it was contributing to some anxiety that was getting to me. it is more likely the prednisone, but i can't just quit that to see. i think i am at the max that i can stand on that, and going back and forth between 10 mg every day, and 10 one day, 5 the next. every day seems to ramp up that nerves. it's not really helping, tho.
i will go back on the arthrotec today and see. but i think that the rebound pain was starting to sneak in. gotta keep looking, i guess. after my last phone report to the rheumie, i was called back and asked to make an appointment in a special 8:30 am time block. i have no idea why, but i am waiting with bated breath about it.

so, would something like a tens or alpha stim help your pain?

[REP]

5. Have You Tried Amitriptyline?

It's often prescribed for fibromyalgia, migraine and other conditions; I take it (along with Topamax) for migraine. It's a fairly inexpensive drug, and doesn't have any of the rebound problems of other drugs like indomethecin. I've seen several studies on PubMed suggestive of good results for fibromyalgia patients taking Amitriptyline and Flexeril.

I have a microstim unit; unfortunately, I have so much nerve damage and neuropathy that it simply causes more pain. You'd think with as much scarring as I have along my nerve sheaths I wouldn't even be able to feel it, but it's literally nerve-racking.

[mopinko]

6. i have not tried topomax

although my daughter takes it for headaches as well. i take neurontin, which is kinda similar, i think. i take skelaxin, very similar to flexeril. between the 2, i am about 80% better most days. functioning, and able to do the things that help, like yoga and bike riding, and sleeping well.

[REP]

7. Topamax is For Seizures, Not Fibromyalgia

Migraines are seizures on the optic nerve, so it works to control chronic migraine like the kinds I have (I have "classic" and ophthalmic migraines; the former are the common painful ones with partial blindness and auras and the latter cause 100% blindness in one eye for several hours - very scary the first couple times that happens!).

I don't have fibromyalgia. My arm is crippled from repetitive stress injuries that caused the scarring, nerve damage, permanent tendonitis, etc. I also have peripheral neuropathy from diabetes, even though I have excellent control (which just lowers the risk of complications, but doesn't eliminate them).

[mopinko]

8. anti-seizure drugs

are used to treat a lot of things. neurontin, which i take for fibro, and a lot of people take for neuropathic pain, is an anti-seizure. depokote (sp?), which my bipolar kid takes, is one as well. when she takes it, it controls her headaches, and well as gastric pain that seems to be related to the headaches.
the human brain is a crazy thing.

[Susang]

9. Topamax is used for a lot of conditions

Not just seizures and migraines. It's commonly used off label for depression, CFS, fibro, weight loss and smoking cessation. I've been on it for about 2 years now. My doctor put me on it for several reasons, including migraines and CFS/Fibro.

[mopinko]

10. how ya doin' susang?

did you have that second surgery? how are you feeling?