Never Heard Of That?

Ok, another blog that is basically a rant, as I have to write about this or I will just wallow in it, so may as well get it out.....I can't sleep. I have had sleep problems for many years, but this is a little bit different. Yes, no sleep can make for some interesting thoughts and behaviors. Sometimes it is even funny....like when you fall asleep while writing to someone in chat.....but it isn't all funny.

I have these lipomas all over my body. The ones that hurt the worst are on my upper thighs/hip region, my rib cage, and my abdomen. These things cause excrutiating pain. They burn, sting, feel like a deep bruise, and basically don't let up. They are worse when they are first forming. Then, they seem to come and go, or more realistically, they swell and hurt and then go down and don't hurt as badly. But, they are a literal pain!

The worst, and what is causing me to come here and cry, is trying to sleep. I can not find a comfortable position to save my life! I have always been a side sleeper, almost all my life....I can no longer do this. When I am so totally exhausted that I do fall asleep, I tend to roll onto my side and then YOWZA....I am wide awake because it feels like I have been stabbed. The lipomas in my upper/outter thighs (hip area), are very painful to the touch.

I also have these little pockets of fat filled pain on and around my lower spine. (where arthritis is also present). So, laying on my back is also one exercise in futility. I can sometimes find a partial sitting up position to be somewhat comfortable. This is the way I can usually fall asleep, and why I tend to fall asleep while I am on the computer, or watching TV. But, and maybe I should say butt.....there is also tailbone pain. When this strikes, it absolutely takes my breath away. It feels like vice grips are squeezing my tail bone. I don't know if this is caused by lipomas or if it is something else, but this pain would have me running to the ER if it lasts much more than an hour....luckily, it hasn't, or has responded to pain killers.

Ok, so I can't sleep on my side, or back...well......the lipomas around my rib cage, and lower (mostly) and upper abdomen area are also screaming their little fatty tumor heads off. The other day I was visiting yet another specialist, this one the gastroenterologist....and he was doing his exam and said "Oh, it feels like you have a hernia, has any one told you that?" I told him I thought it was a lipoma, as they are everywhere if he continues to feel around....he did, while I bit my tongue and winced. He just looked as me with a strange kind of puzzled look on his face. I told him what I think these are, and he said "Never heard of that". Well, whatever, but these are what keeps me from sleeping on my stomach.

The other day, I went to a PT. I thought maybe a combination of pool therapy, and a walker may get me able to walk more, get a little more exercise. So, in order to do that, I was subjected to more poking and prodding. He feels all these lumps, and says "Hmmm, what are these?" I tell him and he says...."Never heard of that". I tell him that I know that strengthening muscles are usually the answer to help with pain, and that may be the case here....but what really hurts are the lipomas in my thigh area that seem to be pulled downward by gravity when I am upright and walking. He agreed that the pool is the best place, and wants me to hold off on the walker. I am ok with holding off on the walker, and I LOVE pool therapy.....but, will it make the pain of the lipomas go away? Not sure, and of course, since he had "never heard of that"...how can he answer that.

To make a long story short, since I have been in the hospital, I now have 3 rare illnesses. One may have cleared up following knee surgery a few years ago.....that would be great, as apparently PVNS is difficult to get rid of. My diagnosis after being in the hospital are some kind of myositis, and rhabdomyolysis. I don't know that much about the latter, but the former is....you guessed it...rare! But, most of these specialists have heard about this diagnosis.....

Ok, now here comes the diagnosis that no one knows about...Dercum's Disease. It is the fatty tumors, the lipomas, and possibly inflammation in the fat cells. I wish it would be easy to lose weight and make it go away, but it doesn't work that way.....so, since no one really knows what it is, no one knows how to treat it.....no one is coming up with any way to help me with it....

There is one doctor in the US who researches and understands this disease. She is in San Diego. I am trying to figure out how to get to San Diego to see her. It isn't easy with no money. But, where there is a will, there is a way.

But until then, I guess I will continue to toss and turn trying to find a comfortable way to exist in this world....yes, I didn't say sleep, as it is not just trying to sleep, it is trying to live.....I toss and turn even when standing up! I will continue to have to toss away and turn down invitations to parties, get togethers, movies, etc.......I will continue to have a social life that is mostly on the computer and phone. (thank God for those friends who have stuck by me, and who call and keep in touch with me. I am an extrovert, I like to be around most people, this forced isolation makes it difficult to remain positive and content in my world. The adventure of never knowing how I am going to feel each day, makes planning anything in advance almost impossible).

Until then I will continue to try to forget about those comments, those experiences like the one at the pharmacy...because the only thing I have found that makes my life a little more tolerable is narcotic pain meds. There are two kind of responses when people find out I am on narcotics....either they hold out their hand, or they become judgmental. That makes me want to cry. (Again, I thank God for those friends who understand, and do not challenge me, or suggest a better way to deal with pain, as in the many years I have been dealing with this, there really isn't much I have not already tried. The odd thing about this illness I have, different approaches work, for awhile, then seem to quit. I have tried naturopathic, chiropractic, homeopathic, energy healing, many many different kinds of medications, meditation, physical therapy, prayer, art therapy, talk therapy including CBT, EMDR, narrative, and other approaches, and massage.....whew....and I am not sure that exhausted that list).

So, I will continue to try to educate, to explain, to ignore, those who can't possibly understand what it is I am going through, because they have "never heard of that".