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CESSG Questions & Answers

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Have you or a loved one been diagnosed with CES?

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CESSG Questions & Answers
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Re: Pain Clinics

Yes, I would like to discuss.

Re: Pain Clinics

I think we are all in the same position in the U.S. - the laws have now banned opioids and doctors as well as pain clinics are forced to reduce medication, even when there is well-documented need.

I found no help from the pain clinic; an MRI was required just to get an appointment with a pain clinic and the first thing I was told was that they don't write prescriptions. (I had not said a word about pain medication!) I'm not out to bad mouth pain clinics, this is just my personal experience. I was offered nothing but spinal injections, which I have refused after my own research into their effectiveness versus risk. They have to be given every 90 days so, in my view, you exchange one "addiction" for another. And an expensive one, at that!

I too am on a reduced dosage of pain medication. Since I was taking so little, I had no idea what a difference it made in being able to get on with life until I no longer had that relief. I have a pretty high pain tolerance, can get by with very little pain medication as long as I know its there in case I really need it. The past two months have been an eye opener; the nerve pain has been far worse than I expected. I will temper that by saying either I'm getting used to the higher pain level or it isn't quite as bad as the first weeks on half strength dosage. But I am no longer able to get on with the things that I love to do.. the pain has made me its captive so it calls the shots. I am not a doctor, just another long term patient with the ravages of CES; so don't take my critique of pain clinics to be anyone's experience but my own. Meantime, take comfort that this is one place where your complaint will be understood - from experience. I would welcome anyone's presenting a positive side to pain clinics!


Re: Pain Clinics

I have lived with CES since 1996 and have been on morphine 15mg and morphine 60mg tablets along with robaxin, tegretol, neurontin, cymbalta, and lyrica for 21 years. The dosage of 15mg morphine was 2 to 4 tablets every 4 to 6 hours and the 60mg was 2 tablets every 8 hours. There were days I would have to go to the ER and I would get shots of fentanyl or dalauded in addition to curb my pain just so that i could get through my day.

Now my doctor wants to get me to 90mg total per day in medication which is horse poo! I cant survive that way, and I've told my doctor i will end up committing suicide because of the pain and he told me then o would just be another statistic. That we as a group need to get the AMA or American civil liberties group or American disability group to lobby the government to make change. Otherwise there will be alot of suicides such as myself.