[zygopetalum]

Some of you may recall I've felt my COPD meds were causing/contributing to my neuropathy. I was doing ok with less pain on lower doses but my breathing deteriorated over time so I had to increase things a bit and % of pain returned.

Spiriva has been causing some airway rigidity or something so pulmo let me stop it and try the new low dose Advair. That didnt work out too well, I had facial swelling, chills/fever. etc. but was able to stay off Spiriva for a little over 2 weeks.

It took several days because the 1/2 life of the med is about 4-5 days but during that time my neuropathy magically resolved into arthritis, sore feet and muscle pain. I've always questioned the idiopathic neuropathy DX, I don't know if I even have it at all now.

I looked at the med, it works on the muscaric receptors in the lung, M1, M2, and M3. I found that those same receptors in the CNS MODULATE PAIN. I think thats what has happened to me, I thought it felt like something was causing pain from things that shouldn't even be painful. I cant even describe how it feels, it makes me numb and in pain at the same time. I don't know why the steroid in the Flovent seems to affect it, I have gotten blasts of pain when I used the latter. When I was off the Spiriva I only felt a very slight bit of warmth in my foot on one occasion when I used it...strange.

I'm not sure if any doctor has actually believed my assertion that the meds were at fault, the 'best' comment I've had was that it doesn't matter, Neurontin would be treatment either way. I've really been reluctant to take it, I don't know if it will mask progression of problems from the med and Spiriva already makes me a little flakey and sleepy. It is well known that anticholinergics cause memory problems in seniors and I think I'm getting some of that...it isn't supposed to pass the blood/brain barrier but it must be getting in there somehow. I got a lot 'brighter' off it. I'm really afraid to take Neurontin with that.

I don't know what to do, my pulmo is now telling me I don't need any
COPD drugs anyway to keep me alive (I'm at the severe stage), they are for comfort only. I think he either just is trying to make me stop complaining or he knows exactly what is going on and doesn't want to tell me. My oxygen levels stay higher when Im medicated, I don't believe that doesn't make some contribution to keeping poeple alive. I don't know if he is so disinclined to try other meds because he knows it wont work or if he just doesn't want to mess with it and risk liability because he would not be following prescribling protocol.

I feel like Im having to choose death by drugs or death from COPD. I know no one here will really know the answer but any opinion concerning the neuro aspects would be appreciated. I have no idea at this point if I have the same type of nerve hyperexcitation as neuropathy or if its more of an inflammatory process. I kind of feel like my nerves are sunburned,

Sorry this is long, I'm depressed and spending all my time running up and down the street because exercise does improve my breathing and then I get pain.

judi