lipedema checklist

Lipedema Self-Evaluation Checklist

Not sure if you have lipedema? Also unsure if you want to go to another doctor to find out? Maybe you're not interested in an official diagnosis, but you'd like to settle the issue in your own mind. It could be that you just heard the word lipedema and are trying to figure out if the years of unexplained symptoms might be explained by this condition. I made this lipedema self-evaluation checklist for YOU because I believe a comprehensive list of clearly explained common lipedema symptoms is helpful when you have questions like these.

DISCLAIMER: I am not a medical doctor and cannot legally diagnose any condition. This list is for informational purposes only.

1. Symmetrical, bilateral disproportionate fat distribution. This means that fat is not all over the body equally, as is usually found in overweight and obese individuals, but some areas of the body are noticeably larger. If legs are affected, both legs will be equally affected. If arms are affected, both arms will be equally affected. If only one arm or one leg is affected, it is not lipedema. A person does not have to be “fat” in order to have this condition, as it is a connective tissue disorder that affects the texture, amount, and distribution of fat but is not based on weight. The following descriptions are the types of lipedema that occur. Please read through them and then choose the type(s) that apply to you. Choose Type I, II, III, OR V for lower body, then choose type IV if arms are affected.

Hips and buttocks -- With Type I there may be a “shelf” or square shape to the hips and hips may suddenly widen right below the waist. Women often report frustration with pants that fit on the hips but are several inches too large in the waist, or having to buy shirts several sizes too big so they will fit over the hips.

Hips, buttocks, and thighs -- Type II is the most common type, with extra fat, heaviness, and/or swelling also occurring in the legs, including the knees. There may be a bulge at the top of the inner thighs and an area of enlarged, dense tissue on the inner knees. Kneecap may not be well-defined and/or there may be fatty, enlarged tissue just above and overhanging the knee as well.

Hips, buttocks, thighs, and calves -- Type III includes legs down to the ankle. Often at the ankle the size of the leg abruptly appears to normalize with regard to size, and the feet do not appear enlarged, as expected with weight gain. (Note that if feet are affected, lymphedema can be suspected.) Doctors often refer to this as an ankle cuff or band and it ranges from what looks like an indentation around the ankle at early stages to enlarged tissue overhanging the ankle in later stages. On the inner shin, there is often a painful enlarged area that may become hardened (fibrotic). When lipedema also affects the calves, legs can take on a trunk-like appearance, with calves sometimes being similar in size of the upper legs, rather than a normal tapering to the ankle. Those with this type of lipedema sometimes report difficulties finding boots that will fit over their calves, for example.

Arms -- Type IV usually occurs with another type, but can occur alone. The forearms may be normal size, with the upper arms being disproportionately larger and typically very sensitive to touch or painful. There can be a “cuff” at the elbow due to enlarged upper arms. Arms can be affected to the wrists, with an additional cuff occuring just above the wrist bones.. When arms are affected, the “typical” smaller upper body and larger lower body that is expected with lipedema may not appear so clearly due to larger arms. Especially when coupled with larger hips and legs, this may lead to assumption of obesity, rather than lipedema, even when the waist, hands, and feet, and often abdomen and face, do not indicate a regular pattern of obesity.

Calves -- Type V, which excludes the hips, buttocks, and thighs, is more rare but can occur. The description of calves in Type III above applies here as well.

2. Lower abdomen, torso, face, neck, and chest can also be affected by lipedema. The change in texture, pain, inflammation, and additional descriptions in other areas of this checklist also apply here. These areas are often excluded in discussions of lipedema but they are often noted by lipedema patients and should not be overlooked.

3. Hands and feet are generally excluded from enlargement of limbs. Stemmer’s sign is negative, except in cases where lymphedema is also present. Stemmer’s sign is negative when the skin at the base of the second toe is easily pinched and slightly lifted when gently pinched between two fingers. Hands, wrists, and feet may appear “too small” for the size of the rest of the limb due to them not having extra swelling or enlarged lipedema tissue. It should be noted that even if lymphedema hasn't been diagnosed, it can be present in the hands and feet and this would cause inflammation and puffiness in these areas even though lipedema alone does not. The presence of addtional inflammation or change in tissue in the hands and feet does not indpendently exclude the presence of lipedema.

4. Affected areas do not respond to usual weight loss methods such as dietary changes, calorie restriction, and exercise. If weight is lost, overall body size may be smaller but weight loss will not be equal between lipedema and non-lipedema areas. Weight may be lost in non-lipedema areas, while lipedema areas may not change much, or may remain the same size. In addition, weight may be lost initially, then weight loss stops and additional weight loss efforts are not successful.

5. Tenderness, achiness, throbbing, tingling, or pain can be present in affected areas. Pain may occur only with touch or pressure, may come and go, or may be constant, and ranges from very mild to severe. Two very common examples given by those with lipedema are extreme pain when blood pressure is taken and pain when small pets walk across their legs.

Simarro’s sign -- severe localized pain is reported when firm pressure is applied with the thumb or finger against the medial (inner) shin about 2 inches below the bottom of the knee cap. This pain is absent when the same pressure is applied to another area of the body

Extreme pain has been reported when using the index finger to apply firm pressure to the point ¾ inch above the medial (inner) ankle bone.

6. Bulges, non-pitting edema, or small swollen areas can be slightly under or around the inner and outer ankle bones. This is distinct from any swelling that occurs up the leg, such as the ankle cuff, and does not extend to the rest of the foot. These areas do not generally increase or decrease in size or location and do not respond to treatments such as lymphatic drainage.

7. Sudden, unexplained disproportionate weight gain occurs at times of hormonal changes and often resolution of the hormone event does not reverse the weight loss. For example, a woman may gain 30 pounds after starting a birth control pill and be unable to lose that weight after discontinuing the pill.

Puberty
Perimenopause
Introduction of hormone-containing birth control
During or after pregnancy
During or after breastfeeding
Peri-menopause/Menopause
Hysterectomy that removes the ovaries
Hypothyroid/Hashimoto’s

8. Evidence of potential problems with veins

Unexplained bruising, or bruising that happens more easily or with greater severity than it should. Bruising may also take longer than normal to resolve.

Spider veins, especially common on the inner back part of the knee where excess lipedema occurs

9. Evidence of changes in tissue. May be any of the following.

Soft, spongy feel to tissue and skin in the areas affected by lipedema

Nodules and/or hardened areas in tissue, commonly described as feeling like chunks, speed bumps, pebbles, marbles, beans, or rice, depending on the size

Lumpy, bumpy, cottage cheese, orange peel, dimpled, mattress-like appearance of affected areas that is not the same as cellulite

Weight is higher than expected for size. Those with lipedema often report looking smaller and wearing a smaller size than others who weigh the same and are the same height, or indicate that others underestimate their weight based on appearance

Fat may feel unusually heavy

Inability to tan or pigment changes in affected areas

Reduced hair growth in lipedema areas. For example, women with lipedema report reduced or cessation of shaving their legs due to lack of leg hair.

10. Affected tissue is often cold to the touch. Skin may feel colder when compared to unaffected areas even when it is warm in the environment, or after activities that would normally warm the skin, such as exercise or being in the sun. This is not the same as being sensitive to cold, though this may occur as well.

11. Bloating, swelling, inflammation, non-pitting edema, and feeling of heaviness in affected areas. This can be unexplained or may occur after exercise, exertion, in hotter weather, or with increased stress. It is common to have these types of reactions to foods, even those that are healthy. Symptoms may resolve with measures such as rest, cooler temperatures, or elevation of the affected area in early stages.

The following are not symptoms of lipedema, but have been found more frequently in those who have lipedema. In the absence of the criteria above, these do NOT indicate lipedema, but can give additional supporting evidence in diagnosing lipedema.

Evidence of joint and/or connective tissue problems:

Hypermobility
Achiness that is otherwise unexplained
Health conditions that affect the joints such as arthritis
Wearing down of joints at a younger age than expected, such as need for knee replacem
Plantar fasciitis or flat feet
Digestive issues like leaky gut

Family history of female obesity or close relative that has lipedema, as indicated by the symptoms above, even if it was never diagnosed

Evidence of weakened immune system such as frequent sickness, recovering slowly from common colds or infection, recurrent bronchial issues, slow healing of wounds or insect bites

Presence of hormone or autoimmune conditions such as, but not limited to, thyroid disorders, fibromyalgia, mast cell disorder, or Ehlers-Danlos Syndrome

Increased food sensitivities, both with regard to number of items that cause a reaction and the severity of the reaction.