Pain Meds That Work/Don't Work?

Dercum's Disease
#1

I have to share that my Dr. appt. today was just SUPER!  The nuerologist I saw was thrilled to know about Dercums!  He had seen a few patients in the past with it but didn't know there was a name for it.  He couldn't really help me other than referring me to a pain management doc though. He said they will try to treat it with meds and eventually have lipo and/or surgical removal of the most painful ones.  (like I could even count them, I get new ones all the time!) 

So I think I am officially diagnosed now.  He told me to make sure to bring the documentation with me to the pain management doctor. 

SO -- I was wondering if anyone would want to share what meds help you and which meds you took that didn't help at all.  I'd like to have that info when I see the pain doc.  The treatment info I find online is just intravenous lidocaine, liposuction and surgical removal.  Are there any pain pills you take that have helped?? 

You will not believe this!!  When I did a search for treatment I found this on WikiAnswers:

Q: What is the treatment for Dercum's Disease?

A: Cremation.

Hmmmm....  I guess someone was being funny with that answer???? 

SORRY this is so long!  I hope I am not a bother.  ((((thanks for any help you can give me about pain management)))) 

#2

Anyway to answer your question. The only pain med I have taken is Gabapentin which is generic Neurotin. It mostly makes me sleepy so you don’t mind the pain so much. I don’t know if it really helps the pain that much but when I stopped it for an experiment my pain was sure a lot worse. Glad you liked your doctor. Hugs, Grandma Sylvia

#3

Oh! What an awful think to put on Wikipedia! I’m glad your visit went so well, Suri! I don’t really take any pain meds, so can’t help there.

Hugs,
Pamela

#4

Hi ?Suri, I don’t take any pain meds except Alieve and that only takes the edge off…I had two surgeries that only helped for a little over a year and now the lipomas and the pain are back…I would still have the most painful ones removed tho, each of us is different and choose our own ways. I have heard that pain meds. mostly don’t help much. I hope you find a way that is good for you. Take good care, Bev

#5

Im taking Gabapentin 3 times a day and it isnt helping…I also have Tramadol but I only take it at night …other than that nothing can stop the stings and hurting…The Gabapentin does relieve the stings for a short time…That’s why I spread it out but it doesn’t help with deep pains…I also am having some itching in areas and am experiencing some really really dry skin on my ankle that has the big lump on it…Anyone have this?? What do you put on it??

#6

Oh goodness… I just hate to think this pain is my life from now until forever. AND that it will just get worse. I am starting to understand the depression the person who wrote “cremation” as an answer! I bet they weren’t making a joke but may have been really depressed.

I have taken Naproxen, which is prescription strenth Aleve, with no results.

I have been searching and thought I would pass on what I found (besides a lot of nothing, haha). I found one girl with Dercums who got some relief from a combo of lyrica and oxycodone.

I’ll share anything else I find…

#7

Hi Suri…Check out the oxycodone on the net…it is a narcotic that is habit forming. A lot of people have gotten into trouble taking it. I would not take myself unless it was a matter of life and death. Hugs, Grandma Sylvia

#8

Yes, Elaine, my ankles are encircled with really big lumps and the itching is terrible. Try hydrocortisone cream or something that gets hot or cold like ben gay or vicks vaporub. It helps. I also wrap my ankles in ace bandages at night to control the swelling.

Hugs,
Pamela

#9

Hi Suri,
I take gabapentin 800 mgs 3/day, mexitil 200mgs 3/day, tagament 300mgs 3x/day (to stop the lumpy bumpies from growing) trazadone 50mgs at night, celexa 40mgs for depression and anxiety…(put me back on it today after that hideous doctor took me off, that’s a whole another post), klonopin .5mg for anxiety. I have tried to take pain meds…they don’t work. I just took percadan for pain and it didn’t even phase it. I didn’t understand how that could be then I read about it online. It said that because our pain is mainly in our fat and that pain meds are made for muscle/skeletal that they don’t really work for our “fat” pain. They said to date that there really isn’t any pain med for fat. This is why my doc has me on the mexitil. I have to say that my pain has diminished a bit. Doc said that it still hasn’t reached it’s potential yet. We will see. I hope it works. I am so glad to hear that your appointment was FAB!!! I am so happy for you. I know how it felt when I finally got diagnosed. I cried in the office for 5 minutes like a baby.
Luv and Hugs
Christine

#10

Thanks you all, I am taking notes about this to have when I see the pain management doctor next week. The doc I saw yesterday suggested I do this, he told me to get as much info as I could from you all -- yep, I told him about this great support group :)

Thanks about the oxycontin info, the last thing I need is another darn problem.

I am looking up drugs and wanted to pass this on to Christine... I found this about Tagament

Side effects such as: depression, agitation, anxiety, disorientation, confusion, and hallucinations may occur, while using Tagament for 1 or more months. These reactions disappear within 3-4 days after the discontinued use of this drug.

I have been taking gababentin but it doesn't help, but maybe that pain doctor will increase the dose...  Oh I don't know, I am just trying to be prepared for this doctor who will probably have no knowledge about Dercums. 

((((((thanks)))))))

#11

How much gab are you taking Suri? I was taking it too for fibromyagia and they seriously increased my dose. I wanted to warn you however if you increase too fast that you may get that eye problem more severe if you adjust too quickly. When my doctor did it he took me up 300 mgs at a time. and I think I misquoted myself (I don’t remember it’s that dd crs) I take gab 800mgs 3 x a day. Either way, I think you said before about that eye movement that drove you crazy and I wouldn’t want it to happen again.

#12

I am taking 600mg 2x a day, but I tried to increase it to 3x a day. I sort of guessed I should increase slowly since they first put me on 300mg a day, then 600mg a day after 1 week, then 600mg 2x after I was on it for 3 weeks. Oh but when I took one extra 600mg pill a day it threw me for a loop. I felt drugged. (LOL, I am drugged, but you know what I mean, I felt really loopy). So I went back to the 600mg twice a day until I get a doc to help. I guess this pain management doc I see next week will get me on the road to some sort of pain relief. I am really having a hard time accepting that daily pain will be my life forever. I had a lot of pain today, it stinks! I guess I could deal with it if something took the edge off the pain.

My husband takes trazadone at night too… he really depends on it now and if he goes one night without it he turns into a grump! He got on that a few years ago when he started stressing out over his work, it has been so helpful to him (and me too, LOL, I like him not to be grumpy!)

Sorry so long, I tend to ramble!!!

#13

I am on a much higher dose of Gabapentin but it makes my ankles swell (I think)! I also take generic Ultracet sometimes. I have several other RX pills which I take sometimes…but I really don’t think they help much except for the sleeping pills which don’t work that well either. I think the amitriptilyne sp? at bedtime helps the most but you need a pretty high dose. I get the most help from doing PT all the time…ice packs…massagers…gentle stretching exercises…hot pool…when I can get it…lots of pillows…foam mattress toppers…my whirlpool tub…which I love…my industrial strength back massager…my industrial strength foot vibrator (both made by the same company) my TENS unit…Suri you must get one of those…my pain roll on which I use during the night…Excedrin PM…gentle massage from my husband…when I can get it…I am getting used to my CPAP and oxygen which I think I will like…I like my rocking chair as it keeps me moving…my wheelchair scooter which I love…and having a husband who waits on me hand and foot and does the housework and doesn’t make me feel like I am a failure as a spouse and most of all thinking about my grandchildren and how to make them happy. I have a shelf with pictures of their beautiful faces opposite my chair and I focus on them and how I want to be able to “do” for them as long as I am able…kind of like meditation? It also helps to eat some food that you like sometimes and by all means get outside and take more of those beautiful pictures. We all feel better just to get out and look at nature. It is almost time for peak leaf viewing here in Ohio and I am looking forward to that! Hugs and Good Luck, Grandma Sylvia

#14

Thanks Grandma Sylvia for the sweet comments on my photos. I do plan on getting out there and taking more. We live about an hour from Bernheim Forest (14,000 acres with hiking trails). I want to go and try to get some good fall color scenic shots. (There are high areas where you can see a large area of trees, I have a pic of that already, but it was in the summer and all green and not too pretty, LOL)

Thanks for mentioning the TENS thing. I searched and read about it and it sounds like it would be really helpful and drug free! (no side effects). Here is a link if anyone else is interested in reading about it.

http://www.healthcentral.com/chronic-pain/treatment-36204-5.html 

#15

SuRi…You used to have to have a RX for the TENS unit. I have used one off and on for 35 years. Now you can just order one on the web. Just be careful…I shock myself every now and then but I strongly recommend them. That is another thing that added to my good day yesterday…John and I looked at all of your pictures when we got home. He is an avid bird watcher, we all are…and he could ID all the birds. I hope you have framed lots of prints to decorate your home. I have one of rippening berries on a branch and one of a deer that was in the woods across the street from our home…that our son-in-law took hanging up. Also one of a boulder strewn stream near our home that John took…and two gourd pictures in the kitchen that he also took. In our hallway we have pictures of every vacation spot we have visited over the years. We have Yellowstone Park, Niagara Falls, The Smokies, and The Garden of the Gods. In our dinning area we have our kids wedding pictures. I always tell them that is to remind them of how important their marriages are to us. And of course, the shelf of pictures of our wonderful grandchildren above the TV. I have the photos show thing on my laptop so my screen saver keeps showing all these great pictures of the kids. I wish we had had digital photos when our kids were young. We did not even have a decent camera until they were grown. I would dearly love to have film of them when they were little…all we have are some crumby snapshots! Your flowers are beautiful. I liked the beads of water on the petals so much. John has stacks of nature photos he has taken. His hands shake now so he won’t take pictures. I keep trying to make him use his tripod. He quit before digital came in and it is so much cheaper now. Have you watched the “Planet Earth” videos? They make the development of video equipment a true miracle. We got to see many of the most beautiful things on this planet that most people would never see. Really, the best thing we have ever seen. We got the videos for our son and our daughter also brought them. Thanks again for sharing your beautiful photos you have a good eye! Hugs, Grandma Sylvia

#16

I didn’t read all of the posts, but the ONLY thing that helped me at all was Lyrica. I don’t have any (been out for over a year).

I tried all sorts of pills… not a single ‘pain killer’ touches the pain.

If there are other medications that could be used for Fibromyalgia, they just might help us.

#17

Thanks again for the sweet comments on my photos. I love to share them… it is sort of like anything that brings you joy – you want and need to share it, that is part of the joy! I do have a few photos that I framed. I framed the one with the two canada geese and hung it in my husbands office. (Those geese mate for life so I told him the photo was me and him, haha)

Oh yes – about the digital revolution! I used to have a nice 35mm Nikon but I couldn’t play and experiment because it was SO VERY expensive. Now that I have a digital I can take 40 photos to get one good one and it is free! (Yippeeee! haha) I would never have attempted getting a butterfly in flight photo before digital (I had to take many blurry photos to get the few in focus flying butterflies I have)

We watched the Planet Earth series!!! IT was AWESOME! We have HD and it was beautiful!

Thanks BRossington about the Lyrica comment… I have searched other boards where people are talking about Dercum’s, and Lyrica comes up more than any other drug. I will have to mention that to my pain doc.

#18

Hi SuRi,

I take a ton of meds now.

tramadol,
cymbalta
blood pressure meds
lasix

voltaren
estradiol
zyrtec
zanaflex
ambien

It sounds like a lot of meds and I guess it is, but without them I cannot work. The tramadol I take 2 two or three times a day. cymbalta when I first get up, 60 mg is all I can handle the doc tried increasing and it made me cry all the time.

Volterin is an anti inflammitory I mostly take it at night but since having shingles I need to take it twice a day.

Zanaflex is a good muscle relaxer, but I routinely take it at bedtime or if I am have a severe flare and have to stay in bed. I can’t drive when I take it. The worst side effect of this one is extremely dry mouth, Yuck!

Ambien, yes I sleep walk but its the only med that gets me into the RAM sleep my body needs to heal itself. I would be so much worse if I couldn’t get the sleep I need. My nurse practioner understands this, she has MS and has to have sleep to survive we all do.

I occasionally have to resort the vicatrophon which is codein and ibueprofen but it hurts my stomach.

Oh yes, I do take the Tagamet daily but usually only one as that makes me stomach hurt if I take more than 200 mg a day. I end up having severe dirreaha sp? I am too punchy still can’t think right now.

I thinks that all I take its what i have to do to keep working, that and get regular ionic foot spas to pull toxins out of my body, since I started those on a weekly basis I haven’t had a flare. The shingles snuck up on me after I hadn’t been able to do it for four weeks when my therapis went on vacation and I got so stressed I was totally toxic.

I get long winded myself and please don’t worry about it, that is what this site is for as place we can come to vent and not be judged or ridicueled for it, OK I know I spelled that wrong but you get the drift…

Hugs and Love to all,
Brennie

#19

Thanks Brennie and thanks everyone! I am writing all these down for that pain doc. I know he will have never heard of dercums and will have 10 minutes to figure out what to do with me. I will get better treatment thanks to you all. I am also rehearsing being assertive. I am not going to let this doctor rush me out the door with no help. My father is going with me for support. I am actually terrified!!! I hope this doc will be good to me and help me.

#20

SuRi,
I know how scared you are, it is so stressful seeing a new doctor and convincing them that you know what is wrong with your own body. After all what do you know? You have only lived in it your whole life!!! Ah I go a little crazy about docs.

I pray that your appointment goes well and that he/she listens to you and is opened minded enought to consider the possibilities.

Hugs and Love, Brennie