You have tried so many pain killers and you are still in pain from Dercums disease?

Answer 1

Dercum's disease is a long-term chronic pain illness, and as such should only be treated with a chronic pain drug, of which there aren't that many. If you have tried "many" pain drugs, it's likely some fool of a doctor has been giving you Acute pain drugs instead of a Chronic pain drug. Acute drugs are those like Percocet or Vicodin that only last from 4-6 hours. They are effective for spot pain in most people or for short term use, but not for control of constant chronic pain. Chronic pain drugs are designed for those who need long term pain control - over 12 hours.

There are several, but really the 2 primary chronic pain drugs on the market that are the most effective forms of opiate therapy are Duragesic Transdermal patches, and OxyContin. OxyContin is a timed-release version of Oxycodone, and it's listed effectiveness is 12 hours, though over time as your tolerance increases that time will decrease to about half that.

Duragesic (Fentanyl Transdermal Patch) is the preferred chronic pain drug of choice for most long-term chronic pain patients, myself included. I've been using them for over 9 years now, and I used OxyContin prior to that. Duragesic lasts from 48-72 hours depending on the patient and opiate tolerance level.

Duragesic is also commonly used by cancer patients, terminal or otherwise. It is transdermal in nature - the patch is placed on the skin, and body heat regulates the drug transfer through the membrane next to the skin, where it is absorbed into the body. If you tolerate opiates well, then you should have no problem using it. Frankly I'm surprised you're not on it if you're in that much chronic pain.

If you are not seeing a Pain Specialist specifically, that's the first thing you need to do - regular doctors do not have the training for chronic pain patients, nor the will or training with how to effectively treat them with chronic pain drugs. I've seen example of idiot doctors who use Duragesic for Acute pain use, when it's clearly marked only for chronic pain and opiate tolerant patients.

A generic form of the patches came out about 4 years ago, but those of us who have been using the brand-name patches had problems with their effectiveness.

If you have used Duragesic and didn't get enough relief from it, then it's likely your opiate tolerance has become higher and your dosage needs to be adjusted. The same goes for any acute drug you've been taking. Eventually, all opiate users will reach a ceiling at which point you no longer get any pain control from opiates, only increased side effects, but that's a pretty high level for most people, myself included.

Some opiates are also different - Dilaudid, for example, doesn't work on my very well at all. Sometimes it takes the right combination to work. All chronic pain patients who are on a formal Pain Management program (which is where YOU should be) usually have a primary and breakthrough pain drug - for me, Duragesic is the primary and Percocet is my breakthrough drug.

If you're worried about addiction, don't be - addiction is a mental problem. That you will become dependent is a given - most opiate patients are, but over time it's like taking aspirin - you don't even notice it, and after a few months most of the side effects go away anyway. I WISH I could get a buzz these days. Well over 95% of chronic pain patients handle their drugs well without any problems of addiction - any Doctor Who tries to frighten or BS you with that nonsense is just looking out for his/her own ass and not yours. But make no mistake - long term chronic pain drugs/opiate therapy will affect your mental attitude at times, but not as much as the constant debilitating pain does. Pain Management programs usually have some form of counseling involved, so be prepared for that. Depression and Pain go hand in hand - anyone who says different has either never been in pain or doesn't know what they're talking about.

I will also tell you that mental focus is another good way to deal with your pain - believe it or not, for myself Video Games are a sanctioned form of therapy for me. The mental focus required by some of the games I play keeps my mind off of the pain. Serving as a Wiki Answers Supervisor is another example of how mental focus can help you deal with it. Before my pain got to the level it did, I was a 1st Dan in Tang Soo Do Karate, and already had a pretty high pain tolerance level, and had worked for several years on building my mental ability to deal with pain. With time and practice, anyone can learn how to do this - there are several good Martial Arts books on Ki and meditation techniques. I don't use them as often now as I probably should, but they are effective nonetheless.

It's important that your family understand how your pain affects you mentally as well. Many times when you just want to shut the world out they don't understand, and may believe it's they who are at fault. Educating them in Pain Management is a part of your treatment as well. My own family has supported me for years, but even today it's still hard on them when I lose my focus and take it out on them, though I don't mean to. They have long learned to deal with it, though in reality after 28 years I don't know why my wife still puts up with me. I do know I made the right marriage choice though.

Go to the American Pain Foundation website at the link below, and learn more about formal Pain Management programs. If you're not in one then you should get rid of whoever your primary doctor is because he/she isn't doing you any favors. I've been in formal PM for over eleven years now, and much has changed over the years. It's much easier to find a good pain doctor, but only seek out one that is specifically trained as a pain specialist.

You are not alone - there are many people just like you who are in as much or worse pain. Just remember that as bad as things get when you're in pain, that someone, somewhere, is in a lot worse pain. Remember too that it's important to rid yourself of the notion that you doctor knows everything and has your best interests at heart. There are only 3 doctors I trust, and they have earned that over many years. Doctors are not perfect, and some are petty enough that they won't admit to you they don't know how to treat you. I learned many years ago that a doctor is just like any other service - if you got a bad haircut, would you go back to the same person? Of course not. If you're not getting the treatment that helps you, then get another doctor. It's important that you NEVER go in and ask for painkillers - they'll automatically assume your a drug seeker, and having that tag is hard to get rid of. Some Quack who was subbing for my regular doctor did that to me after 5 minutes, when in reality I had 3 severely herniated disks in my neck that needed removal. I endured 3 weeks of agony because of that stupid bitch (excuse my french), and nearly lost the use of my left arm because she was too ignorant to see that I had a real problem. She was literally calling ahead to each doctor she sent me to and telling them I had no problem. Naturally, my doctor was furious when she came back.

I have endured more bad doctors than good, have been permanently damaged by one, and nearly killed by a nurse who didn't know how to add properly and miscalculated the amount of morphine in my system after my second spinal operation (I've had 3 so far). The only reason I'm still here is that my family was there and saw I had stopped breathing.

The reason I tell you this is that we are brought up to put full trust in our doctors, but you just cannot do that anymore. Always remember that the person who finishes last in his/her class in Medical School is called "Doctor".
It is not easy to find a good doctor, especially a good pain doctor, but eventually you'll find one. The APF site has a resource locator to help you find a pain specialist in your area.

Something else you should do is to start using a Pain Diary to track your pain. All Pain Management patients are usually required to use them when they first start - if you get going now, it will show whoever you see for your pain that you are sincere and have a real problem. True pain cannot be faked, and neither can the data. The data in the diary is physical evidence and a record of your pain, and they view it as such - without it, it's just your word, and without any signs of physical damage to show where the pain might be coming from it's hard to convince someone how bad your pain really is. I suppose I'm lucky in that my particular problems are pretty well documented and obvious.

You can get a copy of a pretty good Pain Diary package at the Partners Against Pain website (link added below) - click on the "Pain Documentation" link. I was given a copy of their material for evaluation by my pain doctor years ago, and it has some pretty good stuff in it. Learn how to use the Pain Diary and Pain Assessment forms - the may seem useless to you, and you've probably had to do at least one or more before, but eventually a good record will come in handy when you need to state your case that your pain is real and chronic, and that you need proper therapy. While I agree that no one should have to do that, for now that's the world we live in. Of course if some idiot succeeds in socializing medicine neither one of us will have to worry about it as we won't be considered worth treating anyway.

Again, you're not alone and your pain can be controlled - you just need to find the right person to help you, as whoever has been treating you hasn't been doing a very good job at all. If you ever need any specific advice or questions on PM answered, feel free to put it on my Message Board and I'll get back to you as soon as I can.