Note from Dr Herbst

Dercum's Disease
#1

Dr Herbst asked that this be shared with all of the groups, so here it is!
Pamela

Phil and I were talking last night about how people with Dercum’s
disease and FML with lipoma dolorosa can feel better on MMP inhibitors
(noni/GSE, doxycycline, etc.) but still feel short of breath after
walking even short distances. I spoke with an MMP inhibitor expert and
he told me that the damage to the diaphragm by MMPs would take a long
time to remedy. So Phil and I were trying to figure out how to
exercise the diaphram when I found this:
http://www.powerbre athe.com/ homep.html. You can get the Powerbreathe
for $56.00 on Amazon but I bet a prescription from your doctor would do
the trick (maybe Prosthetics at your hospital carries it or your
pharmacy). The beauty of this decvice is that you can do the breathing
exercises while watching tv!!

Please share with the other sites if you would.

karen

#2

Hi, I just returned to the post and wanted to ask you about your shortness of breath, I didn’t know it was a part of DD but have asked people in the past…only a short distance and I feel short of breath and sometimes faint, does your heart beat faster too??? I can’t tolerate the heat at all and I’m really short of breath outside and sweat at the drop of a hat. thanks, I’d like to get back on board now as I have been dealing with a lot of depression and hope feeling better now will stay that way, the depression seems to come and go like waking up. LadyMary

#3

Most of us have some breathing diffuculties…I have had shortness of breath and my heart beats rapidly and I sweat like I have been working out for hours and usually its just because I sweat…I cant walk very far or long due toextreme lower back pain…This AM I woke with my left arm in pain and cold to the touch…Its always going to be something with us DD sufferers I am afraid…My Dr is frustrated I am sure because he doesnt know what to treat next or how to help me…I wish he could…Its all in my body …

#4

Oh yes, shortness of breath and rapid heart rate and the sweating all at once! Apparently DD damages our diaphragms too.

Pamela

#5

Elaine, my arms do that too. I wonder sometimes if a tumor is pressing so hard it cuts off the circulation when we are sleeping. Just wondering out loud.

Pamela

#6

Hi, I wake up at night with the arm stiffness and sleepiness, cold etc. I’m sure it is the pressure of the tumors, the affect everything else don’t they. I woke up a few days ago having laid on my arm and the collarbone hurt like hell, I noticed little tumors on it as well…thanks all, Ladymary

#7

I have SOB and tachycardia and I sweat so bad people come up to me and ask if I am all right. I carry a “sweat towel” with me (a wash cloth). My cardiologist said he could give me a pacemaker if the tachycardia bothered me a lot. I just try not to pay attention to it.

#8

I have been having trouble lately with the shortness of breath. Its been so hot and humid I am suffocating (sp?). My chest feels heavy and my sinuses are making it hard for me to breath. Didn’t know DD caused those problems too. Yuck!

#9

I’m not sure it does cause these problems, in itself, Brennie.

I think we can get those symptoms from the weight gain that comes with it though. Make sure you haven’t developed asthma too.

Hugs,
Pamela