Big Leg Woman

Aimee Mullins has no legs below the knee and relies on prostheses. I have lipedema, which means my legs are big and painful.

Both of us can be defined as “disabled.” Yet Aimee is also an athlete, actress, and model, thanks to a wardrobe of prosthetic legs that allows her to decide how she will look and even how tall she will be on any given day.

If Aimee could choose, would she rather have my legs? Possibly not, and she has certainly made a full and interesting life for herself, earning her much well-deserved recognition.

If I could choose, would I rather have her legs? I will never be an athlete, walk down a fashion runway or be on a magazine cover.* So … maybe.

I can learn from Aimee and take part in the conversations she’s provoking about body image and ability. I can be inspired by the idea of turning a disability into something positive.

I also notice that her “sexy” legs wear high heels — the kind that, on real feet, end up causing pain and deformation over time. In my perfect world, it would be OK to go to the Oscars in flats.

*Actually, I was on a magazine cover, but it was a magazine put out by a local hospital promoting its lymphedema treatment services, and I was lying on a hospital bed in a rather inelegant pose.

I’ve recently become aware of another lipedema blogger — one who is also a registered nurse! Virgina Garberding (http://www NULL.nursevirginiablog NULL.com) is also the author of a book about aging, Please Get to Know Me (http://www NULL.pleasegettoknowme NULL.com/), which encourages health care providers and family members to remember that elderly people are still people, and offers help for building a network of caring relationships around your loved one.

Virginia has a unique perspective as a woman with lipedema, mother of a woman with lipedema, and also a caregiver for patients with lipedema. This link (http://www NULL.nursevirginiablog NULL.com/?s=lipedema) goes to a list of her lipedema-related posts, but I encourage you to explore the rest of her work as well. Her advocacy for thoughtful and individual care of patients will also resonate with those of us who have been “blown off” by health care providers who didn’t take the time to understand our condition.

Like a lot of us, Virginia is developing her own protocol for living with lipedema/lymphedema, motivated in part by the story of a patient who died at 68 from open, infected wounds on her legs. We know that it doesn’t have to be that way.

Lipedema can be depressing. Over and over again, in the lipedema Yahoo group, we hear from women who are shocked, fearful, sad, angry, and just plain down about their condition. In my case, the emotional effects took the form of anxiety, which ramped up around the same time I got my diagnosis (thank you, perimenopause!).

It took me some time to acknowledge that my feelings went beyond simply being blue, and that they were getting in the way of things I wanted to do with my life (like performing well at my job). It took me even longer to get comfortable with the idea of taking medication.

I talked with a good friend who is also a trained therapist. She reassured me that medication for my anxiety would not change who I am — it would just give me a longer fuse, a little more room with which to make good decisions before being overwhelmed by emotions.

My doctor recommended Cymbalta, which also has a pain-relieving effect, and I’ve been taking it for six years. I was sort of hoping it wouldn’t work at first, that I would be able to resume life without medication. But I was definitely doing better after a few weeks on it.

I’m posting this not because I’m proud of needing meds — I’m still not THAT accepting of it — but to encourage other people with lipedema to take their emotional states seriously, and treat them as well as the physical body. The boost I get from Cymbalta helps me move forward with the other important things in my life — job, relationships, friendships, spirituality and exercise.

This specific medication may not be right for you — indeed, you may need to try several before you find the right balance — so it’s important to work with your doctor and actively spend time with people who will honestly and clearly reflect back to you the mental state they perceive in you. There are lots of medications — and lots of thereapists, too. So even though it may take a lot of energy on a bad day, I encourage you to keep taking the next step toward your health — physical AND mental.

There has been some discussion of late on the lipedema Yahoo group about the RAD diet (http://fatdisorders NULL.org/1046/following-the-rad-diet/). Some people who have tried it say it eases their pain from lipedema by reducing inflammation. RAD stands for Rare Adipose Disorders, of which lipedema is one, and the diet has been reviewed by Dr. Karen Herbst, who is an expert in these disorders.

Like many fat people, I have a complicated and emotion-laden relationship with food. I am instantly suspicious of anything that labels itself a “diet” or anyone who claims to know what I should eat. So my first piece of advice to anyone with lipedema who is checking this out is to do what feels right for you, first. If this diet does reduce your pain and inflammation, it will still not take away the condition or give you beautiful fashion-model legs.

The good news about this diet is that it is not stupid. There’s no “eat nothing but cantaloupe” or calorie-counting about it. At the very least,  it doesn’t appear you will do yourself any harm by following it. (However, it’s always a good idea to seek help from a competent medical professional who’s familiar with your condition before jumping into anything new.)

I disagree with Tina (author of the linked page) that doing this is essential for one’s health. She proudly cites her cholesterol and blood sugar numbers, but mine are also low to normal, and I eat pizza and ice cream and drink Diet Coke. I think that following such a diet, or taking steps in that direction, MAY be beneficial for reducing (not removing) inflammation and pain.

If you’re newly diagnosed with lipedema or another fat disorder, and you find the Web pages about this diet, you may come to believe that it is essential to your well-being. I’m here to tell you that it isn’t. I’m here to advocate for the philosophy described by The Fat Nutritionist (http://www NULL.fatnutritionist NULL.com/) as “Eat food. Stuff you like. As much as you want.” (http://www NULL.fatnutritionist NULL.com/index NULL.php/eat-food-stuff-you-like-as-much-as-you-want/)

For me, the cost of the diet — the giving up of experiences and foods that I like and love — is greater than the potential benefit. I know not everyone will make the same choice I am making now, and I also know that I may change my mind as I go along. But I wanted people to know that there is more than one choice available.

(Photo: Vicki Rogers)

Lipedema, particularly when it has progressed to include lymphedema, leaves the skin vulnerable to infections and cellulitis, and skin care is a big part of any new lipedema patient’s learning curve. Before I was diagnosed with lipedema, I had been hospitalized with cellulitis in my legs, and the infection left red blotches on my already unlovely legs. (If you look carefully at the photo in the previous post, you can see this.)

One of the worst things you can do with skin that is affected this way is to scratch an itch. Scratching may temporarily relieve the itch, but it causes trauma to skin that’s already been invaded or violated in some way. So in the season of bug bites and heat rashes, what’s an itchy person to do?

Tom Kincheloe (http://www NULL.rivertownlymphedemaclinic NULL.com/), a certified lymphedema therapist in South Carolina, posed this question on a number of online groups related to lymphatic disorders. Here is his list of ideas, compiled from the collective wisdom of patients and professionals:

Here is a compiled list of all the ideas that were submitted by several
different groups (including Men’s) as well as a few from professionals not in
the groups:

1. Blowing fan on wraps to keep cool
2. Eucerin Calming Itch Relief
3. Topicort spray
4. Neurontin/Gabapentin, Lyrica (oral medications for nerve pain, sensations)
5. Shower (hot water for a few seconds) — NOT with wraps on. PLEASE BE CAREFUL AS HEAT CAN EXACERBATE LYMPHEDEMA!!
6. Back massager (for temporary itch relief through wraps)
7. Calmoseptine (topical)
8. Grape Seed Oil (available in grocery stores)
9. Niacin in an oil carrier (custom Rx)
10. Borage lotion
11. Calamine Lotion
12. Vermont’s Bag Balm (available at some pharmacies, farm feed stores)
13. Aquaphor
14. Aquaphor mixed with Gold Bond powder (assuming Anti-itch powder)
15. Ice packs (available in small, thin size for insertion under wraps for temporary relief)
16. Zim’s Crack Creme (www.crackcreme.com)
17. Castor Oil
18. Cocoa Butter
19. Epaderm
20. PrameGel Gel (generic: pramoxine) a topical anesthetic
21. Tahitian Noni International Skin Supplement

Other suggestions:

Consider the possibility of allergic reactions to materials and especially detergents. Commercial detergents used to clean materials such as stockinets may cause some itch reactions to particularly sensitive skin. If you suspect this to be the case, wash the stockinet thoroughly before re-applying. Ask your therapist for an additional stockinet to wash BEFORE you wear it in case you do have a reaction.

Some people are sensitive to certain types of chemicals in common laundry detergents, especially under compression wraps. Just because you don’t itch elsewhere, don’t be too quick to rule out detergent as the cause. This skin being wrapped may be more sensitive, especially when combined with pressure, moisture and heat (body). Consider the possibility of using a non-allergenic type detergent or simply switching to another brand. Another idea: wash the stockinet by hand with Dawn Dish Detergent to remove any trace of commercial detergents.

Another problem that has occured concerning stockinets: Some are made with 100% cotton and others are made with polyester or polyester/cotton blends. Consider switching from one type to another if your therapist has both fabrics available.

If you have pets, consider animal dander and hair as possible sources of skin irritation and itching. While you might not be allergic to animals in the normal sense, dander and hair from animals might possibly cause allergic reaction to hypersensitive skin especially when wrapped. Keep the wraps well covered (e.g. wear long pants that cover the wraps) to prevent dander and animal hair from slipping down inside the wraps.

Some notes (and warnings) about itch remedies and scratching:

Please be aware that if you try any of the above remedies, that you do so AT YOUR OWN RISK! Before taking ANY oral medications for itch control, please check with your physician first. Some medications and herbal remedies may react with
other medications. Follow the usual routine of contacting your physician immediately if you develop any unusual symptoms. WATCH FOR ALLERGIC REACTIONS WHEN TRYING ANYTHING NEW! Remember, too, that what works for one may not work for another.

Neurontin (generic: gabapentin) is a relatively inexpensive prescription medication that fits into the category of “multiple use” meds. It is used primarily with nerve-related problems such as nerve pain, restless leg syndrome, phantom pain/sensation in amputees, nerve tics, relief from radiation treatments and other uses. It has NOT been tried for management of itching that may be related to nerve compression that I am aware of but it was suggested as a possible use. Therefore we would not rule it out.

Fungal cremes, lotions and sprays (e.g. Flurocinanide, over-the-counter fungal applications) may help with itching but should NOT be used if fungal infections are not present. This can, according to professionals, cause stronger fungicide-resistant spores to form.

Likewise, cortisone-type applications are medications that should not be used without first consulting with a physician.

And last, but not least, if you MUST scratch, PLEASE do not use your fingernails! Fingernails can break the skin allowing creation of portals where bacteria can enter. Fingernails also often harbor a variety of bacteria including those that cause cellulitis and MRSA type infections. If you must scratch, use a dry, clean washcloth and rub the area GENTLY to avoid breaking the skin. Use your fingers to gently rub the itching area (wash them first). Never, ever use your fingernails or other sharp objects!

If anyone else wants to chip in and add to the list, please do so — we always have room for more!

Itching is a frustrating symptom often faced by those with lymphedema/lipedema and other ailments that can eventually, especially when scratching, lead to exacerbated conditions and complications such as infections. Itching can also cause patients being treated to become non-compliant with their treatment regimens. It should not be disregarded as a serious side effect to both lymphedema and treatments.

Thanks, Tom, for letting me republish this!