Dercum's Disease Support Group

HI Everyone!

I just wanted to let you know that I haven't forgotten about any of you. I have been on a painful journey the past month. I herniated 2 discs in my back which has left me flat on my back and unable to really do to much typing. I have missed all of you and look forward to trying to catch up.

Some good came of my pain. I finally have a wonderful pain management doctor who took over an hour with me and was very patient. She listened to everything I said and took over a page of notes. She said that she is familiar with DD and studied up on it before I came to her office. How wonderful is that! The best part is that she is less than 10 minutes away from my house. She put me on pain meds to control some of the pain and said that she wished that she could do more. She understands that exercise, therapy, and all the other usually techniques won't help me and is making me "comfortable".

Scott unfortunately lost his new job because he had to take off so much time with me. I had no one to help me up and down to go to the bathroom. We are keeping our fingers crossed as he has a couple of prospects right now.

Hugs to all!

Christine

Christine, it is so good to see you back with us. I know how bad those discs can be. Sorry about Scott losing his job, but hope that the new prospects work out. Can you pm me the name of the new doc you are going to? I want to give it to my mom since she lives near you. She needs a really good doc.

Her name is Carol Burnette. LOL. No seriously she is with the Piedmont Comprehensive Pain Management Group

Ste 1260

100 Healthy Way, Anderson, SC 29621

(864) 225-3551‎

They are easy to find. They are right off of hwy 86 in Anderson next to the Anmed Area Medical Center. Behind the shell gas station all first right and all the way to the entrance on the end of the building. There is a Cardiologist opposite the doc.

lol@Carol Burnette! I will pass along the info to mom! Thanks!

Christine...I am so sorry about your back and Scott's losing his job. I know how stressful that is. I'm glad you are getting better without surgery. Back trouble is the worst. That is great about your new doctor. I don't know why I am so bad this summer. Usually I am better in the summer. I think it may be because it has been so cool here in Ohio this year. The temperature keeps going from high to low so that screws up my body.All of my joints are killing me. I can barely get around. The lipomas in my leg joints are really bad. I have ones as big as a finger right along the joint. One have one in front that goes all along the joint and anothe one the same on the side. Instead of the usual round shape these are elongated. I guess that is because they have to grow that way to follow the joint. They are not round lumps but a continuous shape about 5" long and an inch wide. Do you have these? I think I have them in my rib cage also growing along the line of the muscles. How is the big one that you have? Have you found out anything new? Your explanation of how the lipomas form from the leaky blood from the blood vessels mixing with the lymph which is not excreted from our bodies when it is produced helped my soooooooooo much! It explained why more come all the time and why they are all over my body...covering my body. Before I looked at them as being like tumors...Now I understand how they form I just need to know why they form in us and not normal people....and of course a cure that keeps them from forming. Thank you so much for explaining this to me...it has helped me enormously. I know what is going on now. Hugs and best wishes my friend. I have tried the best way I know how to answer questions from the newbees and I'm glad that you are back! Hope the boys are doing OK. Call me sometime so we can chat. Grandma Sylvia

Hey everyone,

I have just written to the above Australian company who invented this micro 'paineze zaps'.

I'm waiting on a peply.

This may well be just one answer to our terrible pain.

Here's hoping. if u scroll up,

its under the heading' Buy Australian Made TENS.

Thanks a bunch Christine, I think u put it up there?

Love & hugs to all!

I like a tens unit sometimes. I will have to say that on my pain days I cannot use them. The pain that my skin has it way to intense to tolerate the feeling. I am really liking my kwan loong oil that I use multiple times a day. It is the best topical that I have ever used. I love the way that it feels without the burn to the skin. Scott went out to the drug store and picked me up a roller from icy hot. This was a brand new one that contained 14% menthol. When I used it I thought my skin was peeling off it hurt so bad. I went in the bathroom to wash it off and it got hotter with the water...was darned if I did or didn't. Thank goodness it wasn't the spray on or my butt would have been on fire as well. LOL I think that there is an old post that talks about the kwan loong oil and where to get it. If not if anyone is interested I will find it again. It is a Korean oil that my acupuncturist recommended. It has a mixture of oils.

Grandma Sylvia,

I have some lumps on my hips that are 18 inches long from front to back and now are growing clusters on top of them that are the size of a grape tomato. My fingers are so swollen that my knuckles are bruised. My pain doc got to see all that and made note of it. yeah!

thanks heaps shall look it up

Hi Christine...sorry I have not had time to call you. I'll try tomorrow. I had an appointment today then we went to Cosco and spent a fortune that we really can't afford. I'm doing so much entertaining since the pool is open. I just finished putting everything away. My groin and hip and lower spine lumps are just on fire. I bent forward to take off my Tubi-grip hose and got a charley-horse in my abdomen. Those really kill me...they won't go away unless I use a moist heating pad and rest quietly. I've had them bad for about 20 years. You know how a charley-horse hurts in your leg? Well this is much worse. It just keeps coming...one after the other.I haven't been able to bend forward for years. I use grabbers. My stomach muscles can't handle the big bag of fat that hangs there. My lipomas go all around my rib cage too. The ones on my sides are really big. So yours are like a snake too? It is amazing how big they can get. I was just moaning in pain from walking a little and bending a little to put the food away...from the groin pain. I think I'll put an ice bag on them. I bought a big bottle of Tylenol Arthritis. I can't afford my insulin when I go in the Medicare "donut hole" soon..I don't know what I am going to do. Our income makes us not qualify for any help. If Obama's plan passes he will make the drug manufactures only charge half when you fo in the donut hole. Even then, I can't afford the insulin which is about $2000.00 for 90 days. That is not counting the needles or all my other pills. I want to try the meloxicam. I will ask my rheumatologist when I go Sept 1st. He is the only doctor who really helps me and he prescribes my DD medications. I may have to get the gastric surgery just because I can't afford insulin. I really don't want to get it done as I love to eat but I may not have a choice. I have never been in this position before where I need medicine and can't afford it..I guess after it runs out..I will just have to do without. I have more places to try to apply for help.I haven't tried the VA yet and John is a vet. You work all of your life as hard as you can and then when you get old...you spend all of your money on medicine and even then you can't afford it. You young girls...a word to the wise..try and get a job that has RX insurance benefits after you retire. Most jobs take it away when you are eligible for MCR and MCR only pays a little over $2000 then you have to pay for your medicine. I don't know how people do it when SS only pays you about $15,000 a year. After you pay for your medicine....you are living in poverty.

I have used TENS units off and on for 40 years. They do help your pain level but the electrodes have to be glued on and it takes my skin off I am so allergic to the pads that adhere to you. I have to use tape over the pads or they won't stay on. At least when you are desperate you can get it out and get some temporary relief.I took a bunch of pills when I had the charley horse so I am starting to fly high! Wheeeeeeee!!! Talk to you later. Take care. Hugs, Grandma Sylvia

iso feel for u my dd friend!

I too am having a bad time of late.

I feel as flat as a pancake!

No energy at all.

I'm sloweer than a snail at present!

Even sitting here makes my back really ache so much I can't stay long.

I just use dolased when the pain gets too bad & I can't sleep.

I try to the best of my ability to now keep away from sugar & am living on a wholesome gegie soup, rye bread, very minimal,fish & a narural greek type of yoghurt.

That's it!

oh, I do have the odd pice of fruit.

I'm better at drinking water again & am taking my diabetes tablets.

I've been going out in the sun, thinkng I may be vit. D deficient.

That seems to help.

I am so sick of being sick right now!

I'm going crazy because there is SO much I want to do.

i don't really feel like doing anything & that's just not me!!!!!!

I am sorry u are also having such a difficult time.

It's good we can air our feelings herre toe ach other it helps a great deal to talk to someone who's going through the same thing.

The doctors , family & friends really have no idea, it is too hrd for them to fathom, the pain we are feeling.

God Bless u & all of us sufferers!!!!!!!