Ok so I've been searching again for answers...this time searching different symptoms, one by one, I usually try to group them but not this time.
Researching
Lipoma's and something grabbed my attention (honestly it bought tears to my eyes) perhaps just too emotional today as exhausted from very severe pain..but the symptoms very much match my life and my undiagnosed symptoms 90%
Anywho............
Not sure how it will go down with next Doctor visit, but I will take as much literature as I can on the subject.
Anything that fits my symptoms are in
Bold.Sorry for lengthy post
Dercum's Disease Also Known As
Adiposis dolorosa Fatty Tissue Rheumatism
The main symptom of the disease is generalized or local
painful fat with certain
inflammatory characteristics.
Adiposis dolorosa affects mainly women of 25-40 years, but can make its appearance at any age. Much suggests a dominant line of inheritance, particularly strong in the line great grandmother-mother-daughter. The disease is approximately twenty times more prevalent amongst women than men. The cause of the fatty deposits has been inadequately researched. The symptoms and the resistance to treatment can seriously affect quality of life. Those who seek medical treatment have usually suffered a sudden worsening of the condition (or: disease/ailment), and the symptoms then lead to
permanent incapacity to work. More than half of the patients are
not fit to work. In theory the disease could partly be due to an immune defense reaction. Its sometimes sudden appearance, together with the incidence of a slight increase in the number of
inflamed cells in the
fat, would suggest this. The sympathetic nervous system may play a role in the origin and development of the pain.
Diagnosis The diagnosis, as for fibromyalgia, is made purely clinically. Unlike
fibromyalgia there is a relationship between
pain and body weight. The pain is either general and is often
more severe than in fibromyalgia. An insidious appearance is usual and
pain increases with time. Like fibromyalgia, the symptoms of a number of associated diseases are evident (see below). The fundamental criteria here are
pain in the fatty tissue and obesity.
The
pain is chronic (more than three months' duration), nociceptive, usually symmetrical,
but can be exceptionally one-sided for a while after its appearance. Occasionally it can be localized to the upper arm, the thigh or the knee. The pain is described as aching,
stabbing, smarting or burning: "it hurts everywhere".
Hyperalgesia is found in the fatty tissue below the skin on light pressure and touch and is
made worse by tightly fitting clothes or even by showering. Also massage can be uncomfortable. Often
pain is also felt in the skeletal system. The pain is temperature and weather dependent and usually reduces in dry heat and when pressure is high.
Hot baths have a positive, but short-term effect; some patients, however, do not tolerate heat. Problems with sexual relations may arise as a result of the very pronounced sensitivity of soft tissue. Reduced estrogen at the menopause does not reduce the pain.
Pain increases with the increase in fatty tissue. Generally the
pain increases in connection with menstruation. Before the onset of the disease, there is usually only slight obesity, but in a
short time overweight develops, usually 50 per cent over the normal weight for the age. Other patients have been overweight from an early age and have probably inherited the tendency for overweight. In some there is
only localized fat, without general obesity.
Different Types Different types can be identified according to the spread of pain:
Type I or juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips, in rare cases only evident in upper-arm fat.
Type II or diffuse, generalized type, where widespread pain from fatty tissue is found, apart that of type I, also often in the dorsal upper arm fat, in the axillar fat, glutealt, in the
stomach wall, in dorsal fat folds and on the soles of the feet.
Type III or lipomatosis, nodular type with intense pain in and around multiple "lipomas", sometimes in the
absence of general obesity.
Lipomas are approx. 0.5-4 cm, soft and are
attached to the surrounding tissue. Histologically, these are not always encapsulated. Some have been classified as angiolipomas
In theory, the
pain should be the result of lipomas/fat masses pressing upon nerves and through an axonal reflex, perhaps released pain-inducing factors like substance P. The pain may, for example, be eliminated locally by removing the offending lipoma.
Fat distribution can be diffuse with generally
painful fatty tissue ("Ruben's type of woman") or merely painful "riding breech fat". Sometimes a
painful stomach can dominate.
Other symptoms, with variable incidence include:
Tendency to swell up, especially in the hands. The fingers become fumbling; tingling and numbness can occur (paresthesis). Compression of the median nerve is common.
General tiredness, worsened by light physical activity and poor sleep. The tiredness can be included under the term "chronic fatigue syndrome".
Tendency to bruising, possibly secondary to formation of "delicate vessels" in fat deposits. Coagulation tests are always normal. Telangiectasia is common.
Stiffness after resting, especially in the morning.
Headaches usually a combination of types (tension headaches,
classic migraine, "
neck" headaches) sometimes with pain in the jaw and the eyes, which is probably originated in retrobulbary fatty tissue.
Sometimes there is cognitive dysfunction, with
variation in concentration and lapses of memory.
Bouts of depression ("atypical depression", possibly latent). This has nothing to do with the onset of the disease.
Feeling hot affects a small percentage of patients, some with a recurring high temperature of 37.5-39oC for weeks at a time, with
increased pain and incapacity to work the result. The reason is unknown; investigation provides no explanation.
Susceptibility to infection, which may have a connection with the presence of fat. Increased pain is often reported during infections or
allergen responses.
Associated Conditions Associated conditions include
sleep disturbances and Pickwick syndrome; slight to moderate dryness of the eyes and mouth with a gritty feeling in the eyes in spite of normal tear production (the criteria for Sjögrens syndrome are not completely satisfied);
irritable bowel; coccygodynia; vulvovaginitis; vulvodynia; carpal tunnel syndrome;
Tietzes syndrome-;(
also known as costocondritis) chondromalacia patellae;
thyroid malfunction, mainly hypothyreosis; trochanteritis; localised tendinitis; sometimes onset of
fibromyalgia;
slight to moderate raising of cholesterol.
Experience shows that lasting
weight reduction by changing the diet is difficult to achieve and
does not appreciably affect the pain.
Operation for isolated
painful lipomas which are
pressing and causing numbness and tingling brings relief. Localized pain may sometimes be treated with cortisone/anaesthetic injection, alternatively with sterile water given intracutanally or more deeply.
MAIN SYMPTOMS
• Inexplicable
disproportionate weight gain with generalized or
localized chronic pain (lasting longer than three months). Weight gain is often contrary to familial tendencies toward obesity and fat distribution.
•
Weight gain appears suddenly and has no relation to diet or exercise. It accumulates in the thighs, upper arms, and/or
stomach. It can also occasionally be found in forearms, hips, and/or lower legs.
Despite this rapid weight gain, the face, hands, and often times the back, will be completely spared, signifying what size your body should be.
• Weight can often be disproportionate from one limb to the next; for example, one thigh could be significantly larger than the other.
•
Weight is completely resistant to exercise or diet; patients may
experience weight loss in other areas of the body, but the
size of affected areas will remain constant or continue to grow.
• Dercums fat will be of strange, abnormal consistency, far different from average fat elsewhere in the body, often with
extreme laxity in the skin.
• The
weight in the affected areas will be tender to the touch, and many patients report a constant aching, burning,
stabbing or some kind of indeterminate
nerve pain. Occasionally the
pain will radiate throughout the body, thus making it harder to pinpoint its source.
• This pain will increase with the increase in the fatty tissue. Often the
pain also increases in connection with menstruationExtreme sensitivity (hyperalgesia) to this pain is common, making the fatty tissue below the skin sensitive to the touch and is often made worse by tightly fitting clothing or even by showering.
• Some patients are extremely sensitive to heat.
• The affected areas may
bruise more easily than elsewhere on the body. However, despite this bruising, Coagulation tests are almost always normal.
• Lipomas, benign fatty tumors that are typically pain free, will develop in the aforementioned areas of the body. While this can happen to anyone without any correlation to disease, in
Dercums patients, these lipomas will be painful and tender, especially during their initial formation.
• Almost all patients
report headaches, usually a combination of types - tension headaches, classic migraine, "neck headaches" - sometimes with pain in the jaw and eyes.
• Some patients report cognitive dysfunction of varying degrees, with variation in concentration and lapses of memory.
• Many patients report bouts of depression ("atypical depression", possibly latent). While it is believed this has nothing to do with the onset of the disease, it's reasonable to conclude it is
related to being in chronic pain and struggling with this previously inexplicable disease.
• Feeling hot affects a small percentage of patients, some with a recurring high temperature of 99.5-102.2°F (37.5-39°C) for weeks at a time, with increased pain. The reason is unknown; investigation has provided no explanation.
• Susceptibility to infection, with increased pain during infections or
allergen responses.
• Patients with Dercums Disease may also have these association conditions:
Sleep disturbances, Pickwick syndrome,
Irritable Bowel Syndrome, coccygodynia, vulvovaginitis, vulvodynia, carpal tunnel syndrome,
Tietzes Syndrome also known as costocondritis, chondromalacia patellae,
thyroid malfunction (mainly hypothyreosis), trochanteritis, localized tendonitis, sometimes onset of
fibromyalgia, and
slight to moderate
raising of
cholesterol.
What is it?
This is a quote I found on a website from a patient suffering Dercums Disease I can relate to alot of this, especially after the initially endo and appendix, this reads like a text book after those stages for me(quote)
"Imagine, if you will, that you are a healthy woman (but not meaning to exclude men) going about your daily life, doing what we all do, performing our jobs, chores and everything else that makes for an active and enjoyable life. Then one day, lumps start to appear for no apparent reason. Or perhaps lumps you have had for some time start to grow and become uncomfortable. Then pain and discomfort starts in the general vicinity of those lumps. You start to really get concerned. Are they cancer? What's going on?
Being a responsible person, and knowing and believing the value of early detection in any disease, you head off to the doctor. Because the lumps and pains first appeared in the abdominal region, the consensus is that it's a gastro-intestinal problem. So you are poked and prodded and tubes are shoved into openings from your mouth to your anus, searching for the cause - polyps, tumors, cancer. And nothing is found.
That specialist can't help you, and you are shuffled off to another, maybe an endocrinologist, who does more tests and can't find anything. Maybe it's psychosomatic he/she says. I don't know of any disease like this.
What did YOU do to cause it, is the usual question.
So from doctor to doctor you go, with doctors not having a clue what you have and now prescribing this and that for the pain.
(/quote)
NOT.. frustrating because it could very well be the small bowel...