Does anyone know of any way to retard the growth of these fatty lumps? I am 64 yoa and they show no signs of slowing down their development rate and should I have another 10 years of life, I am going to be one large painful mass of lumps and I don’t know if I can cope with that.
I second Dr. Herbst. I've met her, and she is the ONLY Dercum's Specialist that I'm aware of. She's a really neat lady, and a great doctor. I highly suggest meeting her if you get the chance. She's out of California, but does travel around the country for fundraisers, meetings, etc... I met her in Chicago during a Dercum's Conference. She talks a lot about diet, and the Lymphatic Massage. That's where I got those two ideas.
A few links for Dr. Karen Herbst:
http://www.vacmr.org/herbst.html
https://www.facebook.com/karen.herbst
Again, Good Luck!
I normally have the really sore larger ones, removed by surgery. Over 300 removed to date, but as you may know, surgery is not fun to do every 6 months, and can get expensive. I have great insurance, but still a $250 co-pay each time.
I was successful at slowing and possibly stopping growth for a while. I had access to Lymphatic and eventually Deep Tissue Massage EVERY DAY for about 3 months for FREE. It started light, due to much pain, but after a while, I was able to handle much harder pressures. Eventually, I could handle full pressure WITHOUT pain, even on my love handles which are my most painful areas.
At this same time, I was eating almost NO fats or Sugars. I mean I REALLY cut them out. I went to beans, rice, fruits, veggies, grains, etc, almost a Super Food Diet. I was not eating less food, just better
food. Never felt hungry.
Not only did my basic physique change, which I didn’t need too much since I’m not over weight, but the lumps started to shrink and I believe even stop for a while. I even started walking, and worked up to a 1 mile jog, or 5 mile walk every day! AMAZING for me lately.
Unfortunately, I lost access to my masseuse, and as you may know, it’s pretty expensive to pay someone for every day massage, so now, they are coming back. AND, I’ve messed up my No Fat/Sugar plan. I need to get back to it, because I firmly believe it helped Tremendously!
Of course, these are just my experiences, but I truly believe it worked. Good luck, and I’m sorry you are
dealing with this. It’s taken its toll on my life, and I’m sure yours.
PS: About 1 1/2 years ago, I cut out ALL Medications too (won’t even take an asprin). It was really hard at first, (I’m sure similar to coming off Heroin, fevers, night terrors, suicidal feelings, etc), but my body eventually adjusted. I still have pain, but the side affects were worse in my opinion than the pain, and I really didn’t know how bad they were until I cut them out. I was on Tricor, Vicodin, Lyrica, Hydrochlorothiazide, Zocor, etc… I was on 7 different medications at one time.
PPS: I took MYSELF off my medications, against my Dr’s Advice, but I don’t recommend ANYONE else do that without your Dr’s Supervision. It was really was hard, but I’m a VERY determined person and can push through things like that when needed.
PPPS: (Sorry, I keep thinking of things.) My Dr was a little perplexed when my Cholesterol, Triglicerides, and Blood Pressure all returned to normal levels WITHOUT medications. Now, she listens to me a little more than before. I do understand my own body better than anyone else.
Hi Supersport and thank you for your reply and so quickly.I have had only recently,19 lipoma removed as they were very painful and being on the fronts of both thighs,very easily bumped. I shall try your suggestion of cutting back on fats and sugars and as to medication, for the time being I must take it as I am on thyroid medication and statins. I am seriously considering asking to have my breasts removed due to the concentration of lumps in them and the pain that goes with them as it is almost constant. I was given a leaflet re the pain and it suggests I use Ibuprofen but that harms the stomach, eventualy or Paracetamol which really doesn’t touch the pain. I ,on looking back,know that I have had DD since my teens but only this past 10 years have the lumps multiplied with speed so maybe age has a part to play. I do so wish that I could get in touch with an EXPERT in this field. Many thanks again. I will let you know how I get on with the sugar and fat free trial. I will give it a go for one month? Bye and take care.
there is a forum Dercums_Disease (that’s an underscore) and one of the member’s(Phil P.)is a chemist & actually worked with Dr. Karen Herbst. There is a suggested program(with potentially very good results) involving supplements & some diet changes. The information is on a password protected site. You’d have to join the group(easy to do) entry 33907 has a link, but you need to e-mail Phil for password @ comptrguru@hotmail.com. btw if you go to site it says Phil’s program…it should also say Dr. Herbst as she was part of it