Do you have Questions about CES?
Have you or a loved one been diagnosed with CES?
Here's a place to find answers and support!
Yes, I would like to discuss.
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!
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.
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!!!
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.
Yes, I have given birth and the two are like comparing apples and oranges; pain but at the end of the first you have a little bundle of joy - CES just begets more pain!
I just wish this forum was what it used to be in earlier days when we members were like one big family that supported one another through the tough times when pain overwhelmed and the prognosis was not what we wanted.
I think part of what you see as a runaround by doctors and pharmacies is not only dictated by federal laws but each state has its individual laws that complicate the process; in my state new laws were passed that make it even more stringent for doctors or pharmacies to prescribe pain medication that works for nerve pain. For instance, my doctor CAN write a prescription for an opiate but the glitch is that the minute it reaches a pharmacy, it goes into a huge data base which alerts everyone that an opiate has been prescribed. So while he CAN write the prescription, what it means is that he would lose his license to practice medicine if he did so. The result is that his hands are tied and the real patients suffer.
Two questions: have you thought of what I will call a pain pump? They are implanted and are often used to relieve pain in certain disease like cancer. I don't know their status now with the new laws but they are implanted at the site where the pain originates...they block the pain signals rather than use drugs. Technology has improved that sort of device greatly in the past ten years or so. (YOU can research them on-line). The second question doesn't seem to gain much traction, I guess because it sounds too old fashioned and simple, how could something that simple and cheap bring temporary relief for nerve pain? Thera bead pads do work well to bring temporary pain relief, they are not expensive, and mine will undoubtedly still be working when I am gone. There is nothing to wear out, no electricity, no batteries. All you need is a microwave to zap them. If nerve pain strikes, the sooner the heated pad is applied to the pain point the sooner the relief. They emit what can be scalding steam but they cool rather quickly so it is best to have a couple on hand. The real secret is to put them between your lower back and the back of your recliner chair where it fits snuggly, you lean back against the pad so it is in full contact with where the pain originates. That method retains the heat longer and brings the fastest relief. While it is only temporary relief, just breaking the pain cycle is helpful... with a second pad handy you can follow it up with a second go round. It gives you some degree of control over your pain, lets you catch your breath so you can fight again another day. I was having terrible leg and back nerve pain at night, was getting little sleep but I seem to have fallen upon something that is helpful. I dug out an old electric blanket, turned it on 30 minutes or so before bed, and it has chased away the feet cramps and the leg craziness that goes with agitation of those lower back nerves. May not always work for me, may not work for everyone, but anything that works for one is worth passing along to others who are enduring nerve pain. (That's why I'm so sorry the old CEESG forum is not active as we shared everything we found that helped with any of the many problems that go along with CES.) And it was a good place to rant about the unfairness of it all and be understood rather than judged.
You have value - CES does not define who you are or your value to others. It's difficult to see the glass as half full rather than half empty but be assured the way we look at life makes a lot of difference in our ability to cope with CES. I'm no Pollyanna so when my perspective gets bogged down with the continual fight with CES I find that all I need to do is look around me to find someone who would gladly trade places with me if they could. I have only to think of my youngest daughter who died after fighting terminal cancer for over 6 years... she would gladly have changed places with me just to have more time to spend with her children...her plight changes my perspective when I get bogged down with me.
Best wishes for a happy holiday season