Dercum's Disease Support Group

I have been going to her for years. Today i told her about DD, and I guess she won't be helping me. She said it sounded kind of far fetched to her....good thing my PCP is understanding and interested in it. What she did tell me, that I guess i did hear but didn't want to believe....they are taking Vicodin off the market. That is about the only thing that works for me for the pain. I can't take NSAIDS.....hmmmm what to do? She said Darvocette, but I think that made me sick. It really bothers me that these people legislate things without looking at who it helps.......grrrrrr.....that would be my soap box lately!!!!!

Maryla...that is not an unusual reaction from a doctor. They used to be that way about fibromyalgia. Then when an expensive drug Lyrica was developed all of a sudden they believe there is such a thing as fibro and it is all over the TV. It took many years so with DD we are just in the forefront of educating the doctors. If they would just read the material they would diagnose DD a lot more. You might try Gabapentin for your pain. I am sorry that you can not get the medicine you need. Keep up the good fight. Hugs, Grandma Sylvia

I think I have tried about everything there is to try. I was diagnosed officially in 1986 with fibrocytis. (as you know, the precursor to FMS). Then around 1996 I got really sick, and my friend was a nurse practitioner. She saw that I could not recover, so I ended up getting a diagnosis fairly fast for CFIDS. When I moved back to Vermont, I was experiencing more pain than fatigue so was back to the dx of FMS which was around 1998. It was about that time, that the lump showed up. So, I feel like I have been on the fore front of these unexplainable, undiagnosable, unbelieved illnesses for awhile. I also have another rare illness called PVNS. Again, causes pain.

I have tried elavil (and all the different versions of the tricyclics), anti depressants (many diffferent ones over the years), Lyrica, Nuerontin (gabapentin), and most recently Topamax (that was a trip), Cymbalta, and even more obscure trials of things. I am going to try next, Savella. It is having mixed results on another forum I am on....but I am always willing to try. I also have low dose naltrexone that I had made, but then we decided not to try it, as I am having trouble getting away from needing the narcotics. So, it has been a struggle. But, struggle on I (we all) will!!!!

Your grands are very cute....have a very good 4th!!!

The things that help my Fibro and Dercum's the most are...Lyrica (for fibro), Flexeril (muscle relaxer which helps with neuralgia), Tramadol/Ultram (pain killer that isn't a narcotic), and Bupap (my pain pills that I carry around in my purse) for the pain....Buspar for anxiety, Prozac for depression...and Ambien CR to help me sleep. I also take flax seed oil, magnesium, iron, calcium, B12, and a multivitamin daily. I haven't heard about them taking Vicodin off the market, but if they do, Vicodin (brand name) is the same thing as Lortab(generic name) and Hydrocodone (generic name). All of those make me itch, so I can't take them, and I can't take NSAIDS because of gastric bypass, so I have to take Bupap also called Cephadyn which is an acetominophen plus butalbitol. It REALLY helps my pain...better than Darvocet, Tylenol 3, or Percocet.

As far as them taking vicodin of the market they are also thinking about doing that for oxycodone. I take this. My doctor has me on 15mgs 3 times a day. There is a national organization for pain that I belong to. They are lobbiest for people with chronic pain.

http://www.painfoundation.org/

I urge all of you to join it. They have up to date information about legislation that helps people with chronic pain and about medications.

I just did a little research and the reason it was voted on to take Vicodin and Percocet off the market is because they are worried about the acetaminophen part included in the drug causing liver problems. They would still offer the narcotic or barbituate without the acetominophen...so then you could see if just the drug works for you without taking the Tylenol or if you would need OTC Tylenol to go with it. Kind of like mashed potatoes and gravy. They don't want to combine the two anymore...they want to let you get one or the other or choose to combine the two. Therefore, you could still take the meds...but might be in 2 pills instead of 1. I take Bupap which is acetaminophen with Butalbital..so instead of offering Bupap, they might just give me Butalbital and then I would have the choice of adding OTC Tylenol along to it.