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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

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.

Re: Pain Clinics

Here it is November and I just now read your last post. I cannot believe such a hard hearted response from a doctor! I understand that in the U.S. opioids are now banned and doctor's are hard put to give adequate pain relief to patients such as those with CES. However, a kind approach helps - at least we don't go away angry, right!!!

My life changed this past summer when pain medication was removed....not for the better. It is now a challenge just to get around for the necessities but I am far from thinking of suicide as a way out. More of a grin and bear it attitude. One thing that upset me was being given high dosage of Tylenol with the doctor saying after two weeks it would give about the same relief as an opioid. Perhaps others have found that true but for me it was no better than a sugar pill. The only thing I am finding helpful now is the use of heat - I sleep on an electric pad made to go under the sheets and I use thera bead pads for quick relief during the day. Yes, it's only temporary but just a break in the pain cycle is helpful.

Best of luck to you. Please don't let CES win by making suicide a way out. As long as we breathe, there is hope so grab on to hope that things will get better and don't let go, okay? No one wants to be a statistic and that doctor was cruel in his response to you. Don't let him win!!!


Re: Pain Clinics

Dear Ejenn:

It has been very difficult not thinking that way, but I do try not to. My wife and children try hard to keep me positive, but I've been dealing with CES since 1996, and it's making me tired, especially now with the current pain med issues.

I have an appointment with a new pain management clinic in hope of maybe making a difference. I have talked with my state representative and they found out there is nothing they can do here in the state, that it's a federal issue. So they put me with my state senator Todd Young who told me that he was sorry but there is nothing he can do. I then spoke with the state health and forensic board that said the new rules set by the CDC are not rules but guidelines and that the doctors are asked to follow them, however they can deviate from it if they feel it is justified. I went back to my original pain management doctor and he said I was correct but even if he wrote the scripts the pharmacy wouldn't fill it because of their policies and my insurance wouldnt pay for it. I contacted my insurance and they said if the doctor documented and submitted it they would approve it based on my background. I contacted the pharmacy and asked them and talked to them and they said if it is approved by the insurance, documented by the doctor and it isn't a norm for the doctor to do with all patients then yes they would. I went to my doctor and he said if I do it for you I will have to do it for everyone or he will be scrutinized and it will cause him problems, so no, and on top of it, the pharmacist isn't being honest...which I found out that some pharmacists companies have a new rule of not prescribing more than federally put forth by the CDC.

Basically everyone is putting the blame on everyone else and noone is taking this problem seriously.

So, I have done my homework considerably. But my biggest issue is nerve pain. The nerve pain I get shooting into the groin and down my leg and into my foot can last for days now. I am on tegretol and neurontin along with robaxin but it doesnt put a dent in the pain. It is then that I need the morphine to help put this pain at bay, but when I was on the higher doses, I could do more without the nerve pain flaring up. Now, just walking downstairs to my car can cause the nerve pain from the the back pain and set me off on a 3 or 4 day crying in pain dilemma. It is during this time that I try suicide because I cant stand the pain, especially consistently for 24hrs a day for 3 or 4 days every week or two. I dont know if you've given birth, but I did and this nerve pain is 100 times worse. :joy: :disappointed: So I sit or lay in bed, avoid minimal movement and maybe go out once a week or once every two weeks just to make sure I dont aggravate myself to get the nerve pain. That is not a quality of life in my opinion, but I try, it's just wearing me down.

I hope this helps you understand my position, and I thank you for the support, if it wasnt for kind words, the love of my daughters, and the love of my wife I dont know if i would be here writing you back. Thank you, and if there is anyone else out there with similar or same issues, write and let me know.