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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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Pain management is scary because I never ever want to be an addict.
An addict is someone who abuses a drug for a "good feeling" they get.
I have NEVER had a "good feeling" from any meds since getting sick, because the meds just take DOWN (not away) the level of pain. Even with my best pain relief, I am still like a 2 - 4 - and I mean, thats a Banner Day!!! So there's no addict behavior on my part, and I have never taken my meds in any way not as the doctor told me.
Tolerance is different than addiction. Tolerance means we either need more, or a DIFFERENT med to trick the brain, to again work on taking down the pain so we can have the time for that REST for the body and nerves to heal.
I am positive that the first two years of no med relief brought on the devil RSD. RSD is absolutely frightening - to see my arms and chest and face go bright red and pain like the worst sunburn - from the inside, and by no fault of mine and with NO control almost by meds. It is the real devil.
But you raise a good point of toxicity of meds. Whenever a doc says, "take these" it is up to US to HIT THE NET and find the side effects and decide if we are willing to risk it. I have been given 3 drugs which are now decidedly toxic and luckily I didn't take them...but my stomach still hurts and I have had blood tests of high liver enzymes. That's important also, to keep getting blood tests at least every 6 months or more to check liver enzymes and blood sugar and thyroid, especially.
I don't want to go into my personal meds, but it is not unusual to take basic pain with a Fentanyl patch, Ativan or Xanax for the RSD, a sleeping aid, a muscle relaxer on occasion, and if one can take Ibuprofen (which I can't anymore) but I take something else for the migraines brought on more now by the TOS. Docs say you can take the muscle relaxer and buy a small container of cream - they have them at the dollar store, and you take about 4 muscle relaxers per tub of cream, and you take the pills and grind them in a coffee grinder and mix them into the cream. The cream should not liquify (too much med) and there shouldn't be "chunks." Then, on the arm, hand or leg or feet where there is pain - or that spot on the shoulder blade, you take the cream and rub it into the bad spot. This avoids the stomach. And brain, I think...I mean, it's on the skin. And this
light massage, using the cream lightly and maybe using another cream to finish the rub (so you don't get a rash from too much meds) the light rubbing of smoothing these lumpy muscles or spasms out works as well as ANY drug I've ever had.
The only symptom I can't handle is when I can't breathe. It usually starts with not being able to eat more than a couple of bites, and then feeling REALLY FULL. Uncomfortable. Then my heart beats hard. Then next, the rib muscles start to hurt and harden and next I know I'll have days of fighting to breathe. I still think this is "autonomic neuropathy." But the ERs are real quick to just check for a heart attack - which is an unnecessary CT scan - and also rule out a blood clot in the chest - which again I tell them, I just need morphine to calm and smooth the muscles for a couple of days. Well, only two doctors have understood that. The rest have treated me abominably and rudely knocked me off usually with some pain relief but mostly "you shouldn't be on these drugs and you need to go back to you pain relief doctor, not us." Well, there are times, and my primary doc wrote it in my permanent report, that we WILL need hospitalization and a temporary rise in pain meds to get through that TYPE of flare. (Seems there are other flares, other types than this.)
So I try to share what I've learned these past 6 years, and try to be as open as possible, but it's hard since this is on the "open web." So many of us are in work comp or social security fights, and it is so hard when so many doctors do not understand the rarity and horrific nature of neuro TOS, RSD.
God bless you. You could always call me sometime if you want to talk. Just PM me, and if I check in here (not so often) I will call back.
Tam
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