Hi AlaskanLady,

Welcome to NeuroTalk.

Thank you so very much for sharing.

I agree there are so many fillers/excipients in meds, it can be tough to tolerate the excipients, even if tolerating the pure med itself. I often have to obtain the brand version of meds because many generics have fillers or formulations I cannot tolerate. (I know they are supposed to be the same; however, they are most often not the same. I am very sensitive to substances and it has taken me a long time to teach this to most of my doctors. They now see more and more people reacting to meds in ways they did not used to react.)


For instance, many meds are not gluten-free and many doctors and patients do not realize this. I need my meds and food as pure as possible. Shouldn't meds be as pure as possible? It seems simply logical to me.

I have read some pain meds have been re-formulated on purpose so people cannot change the form of delivery. I have also read this can make the pain med less helpful to the person with pain and only slows someone trying to alter the med by 90 minutes. People wanting to change the form of delivery into a different form will likely figure out how to do so. People in pain should not suffer because of this. Just my own opinion, of course.

I am sorry you cannot obtain the pain meds you need to help get the pain under more control.

In my state, there is a newly instituted method of watching over doctors, pharmacies, patients, when any controlled substance is prescribed. Doctors have to report any prescription they write to this database. Pharmacies have to report if they fill a prescription of a controlled substance. For instance, there is a file on me. Data is compiled. It shows the prescription dosage and frequency and the prescribing doctor's name. The pharmacy then reports the same information when they fill the script. There is information on how many days I take to fill the prescription, etc. If there is a dosage adjustment, that also must be reported. We must submit to random pill counts and to random drug testing when called in by our doctors' office. We must show up with pill bottles and submit to a urine test within 2-4 hours of being called in by phone. If we do not show up, we are tapered off pain meds, starting immediately. (I know there are days I simply could not make it. If I am heavily sedated on meds, I won't be driving. I don't always have back-up transportation, etc.) This is all a hardship upon doctors and upon patients.
It is driven by people illegally selling/dealing these meds. I say put the hardship upon the people illegally dealing/distributing drugs, rather than upon the medical practices and the people in need trying to get help through legal channels. (Just my own opinion, of course.) My point: Many doctors do not want all of this additional headache. This is an external database and it takes extra time to sign in, to do the data entry, etc. This is an even heavier burden for smaller or private practices.

My doctors are strongly encouraging me to try cannabinoids. I have the written recommendation from my physicians. This is sent to a state regulatory panel, where it is reviewed and approved or denied. I expect approval. All of my doctors want to explore this avenue and I have more than one qualifying condition for approval.

When approved, I have a choice to make: I can either sign up with a dispensary or I can grow plants and make my own product. I can also start out with a dispensary and then ask to switch over to growing my own.
I will be studying up.

I am sorry you have been dealing with full body CRPS.
Wow, I don't know how one copes with full body involvement for 15 years.
You must be a very strong person.

I have had intermittent episodes of this. I have had episodes in a specific limb after and injury or a surgery. It has taken time to get things calmed down. Sometimes up to three years. This time is a bit different. This time involves 2 limbs at a time, with a 3rd limb starting to chime in. Severe pain is also spreading to other areas of my body, with allodynia over my whole body. I am in worse pain if I have used the limbs involved and the pain gets much worse in the night.

I am sure you know what this is like...and more.

I appreciate your heartful post and your generous spirit.

So glad you have joined us here.

Gentle Hugs in return to you.


DejaVu