MDJunction - People Helping People
 
Ask a Question
05/24/2012 07:34 AM

News and Questions - esp. about your nails/bands

Varna
Varna  
Posts: 374
Member

Hi friends,

Long time, no see.Wink I do think of all of you so many times. Much has changed since I last posted. I'll list them for ease of reading:

1. Stress was literally out of control; subsequently, I have learned, absolutely, that more lipomas, pain, etc. resulted from that. I think there may be a cortisol component to DD. I was unable to take anti-anxiety meds last couple of yrs. Lipomas increased...maybe there is a connection to SSRI's inhibiting cortisol and lipoma development.

2. Blood labs done. Doctor is considering Dercums, MCTD (mixed connective tissue disorder), and wondering about my localized scleroderma morphea, (which I've had for years.) She said presentation and labs indicate "something is definitely going on."

3. I just learned that my big toe nail (the entire nail) is falling off!!! No pain at all. This is a significant finding in Scleroderma. Now wondering if that's what I have, as BP has risen, and there are undefined bands of hardened tissue, along with very definitely defined and not so defined lipomas. Wondering what constitutes lipoma bands from supposed Scleroderma bands ie. is hardenend tissue somehow differentiated into subsequent disease categories?

4. She referred me to a plastic surgeon for some obvious lipoma removal as they are interfering with blood and lymph flow and causing obstruction/swelling.

5. I got a big, electric massager thing and use it daily on my thighs because they are so sore. I press very hard for deep tissue massage, and it helps. I find lipomas I didn't know existed and cannot actually see or feel until the massager hits them and shocks me with pain. I press down very hard on the hardened bands in my thighs because it feels better later.

6. Definitely HAVE to walk and exercise. It's progressed that I CANNOT sit for long or the pain is too much in my thighs. Then, I also HAVE to sit sometimes, because of the overwhelming fatigue. I will sit wherever I can, because I feel I can't stand for another minute sometimes. My legs feel very heavy and oh so achey - esp. the thighs. I have two large lipomas now on my calf muscle, too and it's all squishy fluid around my knees.

7. My BP is much higher, my cholesterol is 244.

8. My whole body is swollen - if you press anywhere - you can move the skin and it dimples everywhere. I don't have pitting edema, just overall sluggish fluid weight. My body is morphing into a different shaped person - legs are bigger, arms, and ropes of lipomas down forearms.

Is anything new or hopeful in DD land? Has anyone else had a fingernail or toenail fall off? Does anyone have large, very hard bands of tissue, not lipomas, that feel better after massage? This - I think so. Please let me know.

Wishing everyone a happy day,

Varna

Reply

05/25/2012 03:58 AM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Glad to have you back Varna. You have sure been busy. It sounds like you are getting organized in your fight. In my opinion you have several disease processes going on at the same time. I'm sure the rest of us do also. I've not heard of losing nails from DD. But you never know. Mine break off short and are very weak. I have the "lines" they sometimes refer to as being connected to some diseases. I know you will educate the plastic surgeon before they operate on you about DD and what to look for..and some of the complications some DD people may have. Are you using wraps and lymphatic massage yet? The dry brushing and deep breathing help. Smashing the fluid out of the lipomas can help briefly I find also. I'm glad that you are figuring out what helps you. No major new finds that I know of yet but more is being written and a new brochure will be available soon. We can't wait! It sounds wonderful. Thanks for the update Varna. Hugs, Grandma Sylvia

05/28/2012 06:07 PM
lumpysoftee
 
Posts: 100
Member

Hi Varma!

Wow, it sounds like you must be in pain constantly; I am so sorry. However, it sounds like you are doing your best to help yourself.

I wanted to say to you, that I haven't had a nail just fall off for no reason. When I was a child, I dropped a drawer on my big toe and a pool of blood developed under the nail. Once the doctor released the blood, the nail did end up falling off. It grew back, not so pretty, though.

I have problems with my feet, period. Skin on the bottom is always extrememly dry, to the point of cracking and bleeding. It's also thicker than it should be, and not so pretty. I still wear sandals, though.

I don't know if any of this helps you, but I thought I'd at least tell you about me.

I hope you are feeling better soon, and want you to know you're in my thoughts. Blessings to you!

Softee


05/30/2012 08:34 AM
ChrisLeoS
ChrisLeoS  
Posts: 39
Member

Softee,

I also have just recently had very hard soles of my feet form. I have never before had problems with my feet.

I was wondering if anyone has list of all these symptoms? I keep running into similarities, I do not directly link these with my durcums.

These range from sensitive skin all the way through mental problems.


06/17/2012 09:12 PM
Varna
Varna  
Posts: 374
Member

Thanks for your replies. Sorry it's taken me so long to get back. The doctor doesn't know what I have, but it's something. Today, I walked the dog and my legs felt like cinderblocks and painful. They have hardened bands of tissue in them besides the lipomas I can feel. I have gained significant weight and I'm so exhausted sometimes...I know you know the feeling. But- it seems to me from my research, that Dercum's and Scleroderma are very similar - the fatigue, the pain in the legs, the brain fog, the auto-immune factor, but it seems they know more about Scleroderma than Dercum's. All I know is that from the sounds of the descriptions - I could have both. I haven't read of Scleroderma causing lipomas, and I definitely have those along with the hard, hard bands of tissue, so who knows??

06/25/2012 08:51 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Hi Varna...I was just re-reading you original post. The hardened bands you have are not circular..right? My lipomas are round...some big..some small..but all round. Some strands almost feel like a snake shape as the lumps grow together. Scleroderma is in the hardening of the skin right? DD is in the fat layer under the skin and the lymphatic system. That may be the main difference? I don't know much about scleroderma but it sounds painful. I so sorry you may be suffering from both..one is bad enough. The weight gain and fatigue are symptoms of DD as you know. Stay strong my Peep Hugs, Grandma Sylvia

06/26/2012 09:50 AM
Varna
Varna  
Posts: 374
Member

Hi Grandma Sylvie -

I have the regular round lipomas - all sizes, some connected and getting into muscles and ovally in shape, but I also have hard, hard tissue in my legs so that if you pressed on my thigh in some spots, it would almost feel like you were pressing on the kitchen counter. There are bands that go across my legs, the one hurting most now - (a dull, throbbing ache) is about 6 inches long, but i'ts happening in the back of my calves, too. I have localized scleroderma morphea for years (purple patches) that don't hurt and never bothered me much and they say it's rare to get systemic sclero just because you have the localized. I don't know whether this band indicates DD or Scleroderma or what. Does DD have hardened bands that are not round? I have a rope of lipomas down my left forearm - that's what I want removed most of all - and symmetrical lumps in some places on both arms - exact same spot.

On another "note" - (pun intended, lol) - guess what? I went to the 5oth Beach Boys reunion - BEST CONCERT EVER and they sound just as great as they did in the early 70's when I saw them. They played for 3 hours and the tkts. were not expensive. Standing that long alone at their ages is priceless!!!!! Go see them if you get the chance - you will love it!!!!!

hugs,

Varna


06/27/2012 07:14 PM
grandmasylvia
grandmasylvia  
Posts: 3031
Group Leader
I'm an Advocate

Great Varna...glad the Beach Boys can still rock on. We have a lot of old people still doing it! I'm so sorry that your DD is being such a monster. I think that the round lipomas who are marching in a group can eventually just meld into a line. My legs get so hard from the lymphedema..they fill up with fluid and feel like you said. The ones behind the knee are so painful. Good luck if you get some removed..I hope they don't just come back worse than before as happens a lot. Hugs, Grandma Sylvia

06/27/2012 07:48 PM
Varna
Varna  
Posts: 374
Member

Yes - the more I read, the more I am afraid to get any out but my doc said she got some lipomas out and that it was fine, but then, she doesn't have DD. I don't know what to do other than ask the rheumotologist when I go. My understanding is that the encapsulated lipomas are more easily removed and stand less chance of recurrence. Those are the ones I want out - as the bigger, more wrapped around ones (angio's, I think) would be much more difficult to remove.

This is the thing - I'm only in my 50's so I still have alot of livin' to do - we all do - and I am just trying so hard to keep what I have going...but today at the store, I was leaning on my cart just trying to stand up...there are those days when you need to bring a cot with you. You know - I think that PACING is the way to go - we just have to accept that we must pace ourselves...and that is just hard to do sometimes when you hae so many people depending on you for so many different things and I just don't want to disappoint anyone. I wish we could go back in time but we can't. We can only make now the best we can and live in the moment. I watched some people at the concert recording with their phones for a long time and I thought geez - you're missing the concert just to watch it later...I want the memory, but I'd rather dance while I can.

xoxoxo

Varna


06/29/2012 08:22 AM
lumpybumpy
lumpybumpy  
Posts: 1015
Member

Yes, I also have very hard soles on my feet. I have seen 2 Dr.s about this and was told that it has to do with the circulation being compromised in my legs. It takes circulation to keep the feet in good condition and has something to do with the lactic acid action also. I have found a cream that works wonders. The cream is called Amlactin Foot Cream. This cream is the ONLY cream I have found that does the trick. It replaces the lactic acid in the skin of the feet. You need to apply it twice a day at first and wear socks to help hold the cream onto the skin. After using this cream for several days, soak you feet in warm water and use soap to scrub the dead skin from your feet. YOu may have to use your fingernails to scratch off the dead skin. Then apply the Amlactin Foot Cream and socks right after the soak. Amlactin also makes a body cream, however, it doesn't work for feet. You must try the Amlactin FOOT cream.

I also have very tight fingers, drying around the nails, peeling skin around the nails also. This is very similar to scleroderma. This Amlactin foot cream also works well for my hands.

Post edited by: lumpybumpy, at: 06/29/2012 08:24 AM

Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved