Chronic Health Conditions Discussion and Support

Long story short, (yea, right??), I haven't been to DU in awhile, had to make a new identity, etc,

Anyways, I've been on pain Melds for 11 years now-and have tried most of them.
I have a genetic disorder, which, among other things, has caused: Osteoporosis-serious, diagnosed at 38 when I had a spinal injury, I'm 53 and gratefully am unable to take Fosamax, etc. I was diagnosed with OA at age 15 and had my share of NSAID's-ending in bleeding ulcers.
Because I was a medical professional, and had every intention of returning to my career after my spinal fractures-I refused ANY opiates, even ultram, (I know, it's a synthetic wannabe . My injury seemed to trigger all that was not good, and until that time, unknown, about my genetic disorder.

I am a "spontaneous mutation" of a mutation of Nail-Patella Syndrome. Lol, got that? Basically, I'm one of the 3 recorded non-inherited cases; and the locus of my NPS, instead of just affecting Chrom. 9, affects others as well. I have ALL skeletal anomalies that have ever been recorded with NPS-plus a few. My Son, although I was promised I couldn't pass it on back then, is my exact twin.
Besides, sometimes as a result of the Osteoporosis. I have very frequent dislocations of my knees, hips, shoulders, and elbows. (the fingers & toes don't hurt anymore when they "pop&quot . Usually, although I rarely count, I have probably 10-12/day. I also average 2-3 fractures/month-BOTH of those are still decreasing though. See, I went from the VERY heavy for my frame, menopausal weight of 186lbs in March, to 105 in Sept, and I'm still TRYING to stabilize my joints. Oh, I was diagnosed with Graves Disease. . Also with Systemic Lupus. I also have a worsening Scoliosis I thought we had corrected years ago. Bathe joys of aging!!

Anyways, I started on ultram & darvocet in 2000-01. It did little to relieve the worsening pain. My pain mgt Doc & Ortho's, decided since this would be a life-long fight to control the pain, for some reason put me on the fentanyl patch-just after those two first Melds. Oh was I SICK. They actually put me on Zofran, an anti-nausea used with chemo patients-and VERY expensive, to help as my body adjusted. Since then, until this past June, I was on varying dosages of Fentanyl, and "breakthrough" opiates, (Hydrocodone, oxycodone); until I spent that last year, in bed, on heating pads or ice packs, not leaving the house except for the frequent fractures.
I had moved here to Pa in 2002, lived in a yoga ashram for 2 years, came down on my dosage for that time & took supplements. Yoga has done more for my stability than ANY PT. the problem was my weight-I had never weighed more than 105lbs except pregnant when I went to 120lbs each time. (3 ). Gaining that weight over a year, just after menopause, was literally, killing me. I had no pain mgt specialist here-I'm now on Medicaid, and doctors won't touch me because of my multiple system problems. (glaucoma, renal failure-born with just 1 kidney, heart problems, a short series of TIA's last year from dialysis... Minor strokes, and now the graves & lupus.). Hell, *I* wouldn't take MYSELF on as a patient!! Anyways, somehow, my primary,..and myself, talked a local physiatrist into seeing me long enough to get me stabilized on a pain med regimen that, hopefully, will last awhile. This Doc decided to talk to my Son's Doc in the UK, (he's there doing an internship), who also happens to be the best, most knowledgeable specialist in NPS. She was also in the process of testing NPS patients enzymes which break down opiate medications-as well as some other Melds.
Dr S received my blood, tested it with my Son's, and I guess we now know why I need such an elephant dose to touch my pain. I also need, always have, 3 times the dosage of Novocaine at the dentists. The local Doc & Dr S, decided to take me off the fentanyl-I'd built up a huge tolerance.
I'm now, FINALLY, on 2 different types of morphine, one long-acting, one short.
I STILL had to go on Zofran for the first week or so. Part of it is that despite my docs screaming at me, I "sneak" an Aleve now & then. While the opiates help-they do NOTHING for the inflammation. My knees right now are the size of a large cantaloupe?? (2 weeks of cold, rainy, windy, Sandy, and buckets in my kitchen-the sun porch is blocked off till we get a roof put on both tomorrow--that'll do it!!).

Medical cannabis is supposed to help, it does for others with NPS. For EXAMPLE: our Govt, has been growing, packaging, and sending, (through USPS no less!!), 200 "joints" to George McMahon, an older gentleman, with a much milder form of NPS, who was in a program, I think it's:
Independent compassionate...I'll have to look for it. If anyone is interested-you can also just search George's name-he has videos on YouTube. MY view on this?? It should be CRIMINAL FOR THE GOVERNMENT, to refuse us a natural herb with now PROVEN benefits and proven un-harmful effects-certainly MUCH less dangerous than the opiates or drinking!! With the hundreds of long-term studies now available, it is despicable that our govt is putting people in jail for using an herb that's showing more promise than ANYTHING in the treatment of cancer!! Oh sorry, forgot about those poor struggling pharmaceutical companies-why they might have to take a cut in billion dollar salaries if they give up their biggest moneymaker!! (chemo-that KILLS healthy cells-MMJ doesn't!!)
Sorry-pet peeve..

My Doc's have had me on a low-dosage anti-depressive since we started the opiates. They said that would help the dreams-but I don't have a problem with dreams, "nightmares". I've been told that it's another "benefit" of meditation that I'm able to control my dreams. Although meditation helps with any extra pain-I'm unable to "clear" when I'm anywhere over a 6. I still HIGHLY recommend both yoga AND meditation.
In my past, (life, as a medical professional), I don't recall ANY patient who didn't get sick at the beginning of opiate management; there are other Melds you can take though to limit those side-effects. I'm talking about someone with no, or very limited experience with opiates. Also, it makes a HUGE difference if you are a short-or long term potential user. The laws will be changing soon and opiates for non-cancer chronic pain, WILL be restricted!! For those of us with stomach or bleeding problems, we're limited in our choices. There ARE some effective supplements, massage, acupuncture, yoga & meditation-but they're not usually coveted by insurance, and can get expensive. I got lucky in that I traded a skill I had-for lessons in the practices of Ayurveda & Yoga, (as well as it paid for the supplements-while I was there).
I wish other chronic pain patients all the best. Please research the latest studies in medicinal cannabis-use that information to work towards helping us break the Big Pharma monopoly-GET INVOLVED!! Also, try & research the pain management doctor you are seeing. In my hometown, we had a doc that had been practicing there for 5 years-as well as his partners. Beach one of them had either pending charges from another state, restricted or suspended license. I hear Florida has gotten better at that. Good people can get dragged into bad things because of ignorance.
Good Luck, Light, Love, and a Pain Free Life!!

Solo