Dercum's Disease Support Group

Just wondering if others have any of these...or if I'm the only weirdo! This is just off the top of my head!

Hypoglycemia (mine is Severe Reactive Hypoglycemia)

Hypermobility (aka double-jointed)

Photosensitivity (Rashes from sun)

Telangectasias (spelling? little red blood vessels)

Low Blood Pressure

Dizziness

Raynaud's (fingers and toes turn blue)

Endometriosis

Hysterectomy

Adhesions (after surgery)

Hormone Replacement (Estrogen)

Saline Breast Implants (had mine for 4 years)

Unable to take birth control due to severe reactions

Strawberry birth marks

Headaches or migraines

Polyuria &/or Polydypsia (severe thirst & frequent urination)

Gestational Diabetes Insipidus (severe thirst and constant urination during pregnancy - NOT SUGAR diabetes!)

Sjogren-like disease (severe dry eyes)

Rosacea

Sleep disturbances

Low Libido or too much libido

Numbness/tingling in extremities

Polycystic breasts

Enlarged lymph nodes

Blood and/or white cells in urine without infection

Severe low back and pelvic pain

Pam - actually a lot that you mentioned there a lot of us have in common. Usually we have hypoglycemia or diabetes. I am hypoglycemic but not as bad as I used to be. I try to eat 5 times a day instead of 3 bigger meals and I defintely keep something on me to eat if I start getting shakey. I have HUGE dizziness. It corresponds with my headaches a lot. Some of the symptoms you listed are hightened by the meds we have to take too - like the severe thirst. The amitriptyline makes mine so much worse but I had it before too.

I have had ulnar surgery because of the tingling i get in both hands now. I only had my right sde done and I know now it is pointless to get the left done.

I have endometriosis and have been diagnosed that i scar easily. That was a fibro thing that your body over reacts and over heals itself. My scar on my arm after 6 weeks was nothing but then about 12 weeks later it spread out and looks nasty now. I can get a little cut that does not even bleed and get a scar on that location later. My brother step on my foot one year (of course it was St. Patty's Day and i could not blame him since we were both partying) and it took 2 years for the bruise to go away and still it really shows red on the spot.

The back and pelvic pain is very common too. I get a pai in my tailbone almost every day if i sit too long. I had spasms in my lower left back for 2 years straight and they have finally almost completely ceased but it is still sore.

Janet

That's really strange...why would diabetes or hypoglycemia be common in DD? Hormones?? I eat small meals all day long too - basically every 2 hours.

I've been bruising and scarring very easily lately too. The punch biopsy I had done in Nov. 09 went from a tiny 1/2 inch straight line to something that looks like a cigar burn! I also barely scraped my leg on something when we moved last June and it still looks like I did it yesterday!

I finally got my records from the dermatologist who did the biopsy and she wrote that she thought I had angiolipomas and possibly C.R.E.S.T or Fibromyalgia. Why the heck would she think Fibromyalgia with all these lumps? I've never heard of lumps being part of fibromyalgia. I was diagnosed with fibromyalgia 10 years before I found any lumps, but I always thought it wasn't the right diagnosis. Now that I have lumps, I'm sure!

Is there any other rare disease this could be? I know that all my symptoms fit DD, but I'm still a little scared that there's something more going on. Especially because of the lymph nodes I keep finding.

When I look at myself in the mirror I can see pencil eraser size white spots with a tiny red dot in the center all over my stomach (probably other places too) and if I press on the white spots there's lumps under them. I'm going to try to count this weekend because I probably have a hundred or so just on my stomach. I bought different colored sharpies, I'm going to mark the painful and non-painful and see how many of each there are! I'm becoming obsessed with these damn lumps! It's hard to think about anything else. I have an appt with my primary care doc on Wednesday. I faxed her the article on Fibro & lumps about a week ago. I was hoping she would actually call me, but she didn't. I guess I will find out if she got it and what she thought about it when I see her.

Not sure if diabetes or hypoglycimia is related to Dercum's but it is interesting that I ran into a few people who have either/or and Dercum's. Diabetes (Type I at least) is thought to be autoimmune now. My sister is diabetic type 1 but she was not diagnosed until she was 28 and I was always dealing with low sugars. I'll have to look to see if they believe both to be auto-immune. My sister would know.

I am not sure about the dots - mine are deeper in the tissue and I don't get too much bruising with the lumps. As far as I know, there a couple of other diseases that may be related to Dercum's (like Madelung's, lipodemia, etc.) Look at the fatdisoerders.org or Dr. H's site. I thought there were a few names that are thought to be Dercum's too - like Ander's Disease.

Good luck at the doctor's and I hope you get some answers soon.

Janet

Thanks

Pam, I have a lot of the things on your list but not all. I DID have spontaneous and unwarranted bruising but I started taking grapeseed extract and don't have that problem as much.

I do have both fibromyalgia and Dercum's. You could be misdiagnosed or you could have both. Many of the symptoms are the same for both and each has at least one distiguishing symptom. I have quite a few angiolipomas. Some have been around for years and some are new residents.

Keep working with your doctors and change if you need to. I have the one I call my DD doc. My primary lets him handle everything related to DD but acknowledges that I have it. You just need that one doc to believe you and work with you.

Hugs,

Diane

I have alot on that list, too - is the telengiact(however you spell it) also including the bright little cherry dots? I have an absolute ton of those - esp. on my stomach! Probably have hypoglycemia too - shaky w/out food, literally and in the a.m. - I am very shaky, fragile feeling and depressed until I eat something. All lipomas down forearms are now black and blue - (does that mean they are changing into angiolipomas??) and I bruise easily, too.

ain't it grand?

V

Hi I can say yes to a lot of those symptom, too.

There are slight differences between DD and fibro and at first when my sister was thinking it was fibromyalgia in me about 10 years ago, she kept saying to me that something didn't add up. I have pain all over but I didn't have enough of the trigger points for pain to be fibro.

Varna, are your "dots" tiny? Like a pencil dot on paper? I think those are the same thing. Most of mine are on my stomach too.

Janet, the lumps that are on my stomach are deep under the skin, but I can find all of them by pressing on the spots I can see. It's weird, the spots seem to be raised just slightly. It's hard to explain, if I could show you it would be easy! I'm pretty thin too, so there's not a whole lot of extra fat there to feel through. I don't seem to have many dots in other areas and have to feel for the lumps that are everywhere else.

I think my rheumatologist diagnosed me with fibromyalgia because he thought I had all the trigger points. The problem is that almost no matter where you touch me, I have pain, so everywhere is a trigger point! The last time I saw him was about a year and a half ago when I was coming out of what we thought was a 2 year remission. I was exercising regularly for about 3 years and had to stop because I fell and broke a rib. When I started back up again I had severe pain in my ankles, knees, hips, basically every joint! I mentioned that I thought I was feeling lymph nodes or some kind of painful lumps in areas where lymph nodes are. I remember him making a comment that my symptoms at that time were not typical of fibromyalgia. I made an appt to see him next month depending on how next week's appt with my primary care goes.