 |
 |
Dear Joyce: I too do not believe chemicals caused my PD. I grew up in sulphur fumes from a pulp and paper mill in eastern Canada floating over our town. No one I know in similar atmosphere "caught" PD. In fact I am the only one I know from my whole life scene who has PD. Regarding your foot spasms and being in living hell until your muscle and psyche relaxant started to work. TELL ME ABOUT IT!!!! My pain is different yet the same. I get an awful feeling in a particular muscle in my left hip - the gluteus minimus - within minutes starts up as well in my right hip. It is cramping and more (makes me feel physically sick or nauseas) and I know I am in for an hour of misery and fireworks..... pains and burning like a hot poker shoved up the leg into that hip muscle....cramps and spasms of the leg from toes to hip. All I can do or want to do is be massaged and do stretching exercises - and WALK??? Besides PD I have Restless Leg Syndrome which I am sure the above is the severe part of in this progressive disease which incidentally has no known cause or good treatment and most doctors (PD neurologists included) don't like to see coming in their door. The medical world is just now getting serious about RLS. I haven't had much luck with treatment doctors have prescribed. I am having some good results from articles written for SLEEP journal. And I am indebted to John Cottingham and a couple of sufferers of RLS as well as PD (which combination is rare). The consensus is Oxycodone 15 mg at bedtime - or Sinemet 25/100 plus Sinemet CR 50/200 at bedtime. I've tried both ways. Each way takes fairly good care of nocturnal symptoms. HOWEVER - oxycodone 15 mgm makes me groggy all day. 5 or 10 mgm takes care of the pain immediately but only lasts about three hours and then you are up "walking the walk." Sinemet works fairly well if all the planets are in a row and your digestion is up to par and if you can stand the wait for relief - usually an hour even with that booster dose of 25/100. My best home grown cocoction is: Take half a Sinemet 25/100 and one Sinemet CR 25/100 plus 5 mg of Oxycodone. Try it - it might work for you. Oxycodone is addictive so don't overdo. On the other hand what is one to do with intractable pain? I've tried the whole gambit from quinine to transdermal electric nerve stimulator. Slowly but surely doctors are opening pain management clinics and arn't afraid to use narcotics. If oxycodone works and I can function why should I be expected to tough it out and be a pain wracked full time patient. That's the way we treated pain in hospitals I worked in years ago. We were fanatics about keeping our patients addiction-free....at the cost of unendurable pain. I shudder thinking about the cruelty. BTW- to all - according to a recent pharmacology newsletter there is growing evidence that restless leg syndrome is sometimes linked to iron deficiency....even MILD iron deficiency. I have a mild deficiency. I'm not surprised. I have tried so hard to cut back on animal proteins so Sinemet would work better. I stopped eating red meat and liver. My daily vitamin is without added iron because of the iron oxidation scare. Yesterday I started taking desiccated liver tablets. Anbody got ideas on this? Iron is iron isn't it? Wouldn't your average prenatal type of iron tablets be OK? Wouldn't the iron in desiccated liver tabs oxidize the same as iron ingested from cooking in iron pots or supplements or food high in iron? So what's the story about iron oxidizing in our poor sick brains and anemia. Are we damned if we don't eat iron and damned if we do? Barbara Yacos RN <[log in to unmask]>