Painful lumps?

[Guest guest]

One of our former girls is writing to ask if anyone else has had these

painful lumps? Dede, do you or have you heard of anyone else? I have

not heard much about these, but I need to research it in our archives.

The pain I certainly have heard about...just wondering about the lumps?

It's disheartening to hear of her having issues again, after a period of

recovery. It seems that there are residual problems that creep back

into our lives if we are not vigilant! Here's her letter:

Hi Patty, I am so sorry it's been so long since I've talked to you!

Unfortunately I am not as well as I was the last time we spoke. I had a

period of complete recovery for about 2 years and then it hit me again

like a ton of bricks. Several things seemed to spark it and I'm not

sure which ones...hormone change, severe sun rash, car accident and a

freak accident at the beach where I broke a rib! After that, I was in

pain all the time and severely fatigued. I have had a severe rash from

sun exposure for 3 years now, hair loss, lumps everywhere and blood as

well as white cells in my urine without any bacteria.

The lumps are anywhere from bb size to odd shaped 3cm by 1cm. They are

SOOOO painful to touch. I have over 50 of them, most concentrated areas

are from behind my knee up to mid thigh, stomach from pubic bone to

above belly button, upper chest/breasts. The biggest one seems to be on

my sternum. I had a punch biopsy on one of them on my calf and it just

showed it was a lipoma. I am going to ask the doctor to actually remove

one or two of the most painful to test them fully...perhaps they only

caught a fatty area of the lump the first time??? I did read about an

illness called Dercum's Disease and other than the fact that most who

have the disease are obese, it is me to a T! I mentioned it to my

primary care doc and she wrote it down but hasn't called me to say she's

read up on it, so I'm not sure if she is even researching it.

Also, I am severely hypermobile and have been since birth. I was

finally diagnosed last year with Ehler's Danlos Syndrome, Classic Style.

It causes severe joint pain, myofascial pain syndrome, fatigue, etc. It

can get the sympathetic nervous system all out of wack because it

perceives that the body is always in a fight/flight mode because of how

hard the body has to work just to maintain proper alignment. Along with

EDS, I have a slight Chiarri Malformation where the tonsils of my brain

are lower than they should be which causes headaches because of the

increased cerebral spinal pressure.

Anyways, I can deal with the EDS and the headaches - currently they are

not that frequent. What I'm concerned about is the blood/white cells in

the urine and the lumps. I need to schedule a cytoscopy so they can

look at my bladder, but haven't done it yet because I owe the urologist

money for a previous test that my insurance didn't cover! I had over

$13,000 in out of pocket expenses last year!

I'm wondering if other girls have complained about painful lumps

everywhere - I think the only place I don't have them are my neck,

hands, feet and possibly buttocks. Just to give you an idea how painful

they are, before I even knew I had them, I was at the beach 2 years ago

and fell really hard onto a chaise lounge and broke a rib. The rib pain

was so bad I was throwing up. I went to the ER and the nurse put a

turnequet (sp?) on my arm so he could draw blood and I screamed and

cried and begged him to take it off and he wouldn't! From then on, he

treated me like I was a drug seeker and not a tourist who had a terrible

accident within 4 hours of her first day of vacation!!! It wasn't until

at least a year and a half later that I realized he must have put direct

pressure on one of the lumps. I first found them in my chest and

breasts and then the back of my knees and one day I decided to put some

massage oil on my skin and try to find others and that's when I found

the one on my arm as well as everywhere else.

I hope you are doing well. Every time I see something on TV about Vegas

I think about you. I'm happily re-married and I'm working selling

advertising at 2 local radio stations and having a great time. This

past fall and winter I thought about quitting, but I'm not going to let

this illness steal anymore of my life!