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Friday, August 21, 2015

Lipedema, Part 5e: Treatment Options Summary

Image from lipedemaproducts.com 
We have been doing a long series about Lipedema, sometimes known as "painful fat,"  "big leg," "riding breeches," or "two body" syndrome.

In lipedema (also spelled lipoedema), the fat cells in certain parts of the body experience overgrowth and swelling. It results in an abnormal accumulation of fat, particularly in the lower half of the body; often the arms are affected too.

As we have discussed, lipedema is rarely recognized by doctors, despite being discovered 75 years ago. Often it is thought to be simple obesity, or it is confused with "lymphedema," the accumulation of lymph fluid in the interstitial areas.

In Part One of this series, we discussed the typical features of lipedema and how differentiate between lipedema and lymphedema.

In Part Two of the series, we discussed how lipedema progresses, the different stages of progression, and why it's so important to be aware of lipedema

In Part Three of the series, we discussed the different types of fat distribution patterns, looked at some pictures to illustrate type and stage of lipedema, and detailed how lipedema is diagnosed.

In Part Four of this series, we examined possible causes of lipedema, as well as medical conditions often associated with it.

Now, in Part Five, we are discussing possible treatments for lipedema in detail. Because we want to give more detail about each option, we broke the treatments into several sub-posts:
      In Part Six, we will discuss practical ways to deal with and live proactively with lipedema. Eventually, I'll tell my lipedema story too, and someday I'll discuss lipedema and pregnancy considerations.

      But today, let's summarize what we have learned of the various lipedema treatment options.

      Dealing with a New Diagnosis

      First, getting a diagnosis of lipedema and/or lipo-lymphedema can be overwhelming emotionally. It's hard to know what questions to ask, which treatments to consider, or where to go for answers.

      Sarah Bramblette, a lipedema activist and advocate who has been a great voice for education about this condition, discusses what to do when you are new to the topic or diagnosis of lipedema. Read her really helpful article here.

      Remember, even when lipedema is recognized and correctly diagnosed, patients are often not given adequate information about it or treatment for it. You will probably have to be very proactive about educating yourself about this condition and your treatment options. 

       If you need help educating your care provider about lipedema, try printing out some of these materials:
      • Lipedema Brochure from fatdisorders.org - excellent quick-glance brochure, with clear pictures illustrating the progression of lipedema through the classic four stages. Start with this
      • NHS informational page on lipedema - basic introductory informational page on lipoedema from the National Health Service in the United Kingdom
      • Lipedema Description Page from fatdisorders.org - a more in-depth look at lipedema's symptoms, treatment choices, and diagnosis differentials, with study references (download it to another file and edit it to make it easier to read)
      • Lipedema History, Stages, and Types - short informational article from liposuction specialty center on the history of lipedema's diagnosis, with a quick summary of its stages and types
      • Fife 2010 article on lipedema - educational article, written for provider, on lipedema, its stages, its progression, diagnosis differential, etc. Full text freely available, with helpful pictures showing advanced stages and differing presentations. Does have some weight bias; advocates "rigorous weight control" and seems to suggest bariatric surgery for some cases
      Because most doctors have not heard of lipedema as a condition, they can respond in varied ways to a patient who raises this concern. Although some respond very helpfully, many women experience resistance from their providers.

      Some providers use a deny-or-ignore approach. Some want to completely deny that such a condition exists, and may even accuse the patient of "making excuses for being fat." There's not much you can do with these providers except find a new one. Don't let them discourage you so much that you avoid care or don't pursue treatment.

      Some providers are sympathetic but tend to ignore the concern. They may not feel qualified to diagnose this condition themselves and aren't sure who to refer you to. Many feel stymied by the lack of ICD-9 diagnostic code (coming but not approved yet). If you have one of these providers, ask them to at least insert a note regarding lipedema under the "obesity" diagnosis in your chart. This creates a record of it and precedent for treatment if you experience complications.

      Sometimes patients are given a doom-and-gloom diagnosis that tells them that they have an incurable progressive disease, that nothing much can be done to treat it, and that they will get progressively more and more disabled with time. Don't believe these providers. There are options for treating lipedema, and there is hope that its progression can be halted or slowed. We are still in the infancy of learning about lipedema, but it is NOT hopeless.

      Some care providers diagnose lipedema readily but have an advocate-for-yourself approach. They feel too pressed for time to educate themselves about treatment options, or feel they can't refer patients for treatments because of the lack of ICD-9 code. As a result, too many people with lipedema just live with the condition instead of getting treated. That's what this series is for ─ so lipedema patients can become proactive about advocating for their treatment needs with their providers.

      If you need more information about lipedema and its various treatment choices, consider watching this video about lipedema. It's 24 minutes long and does have weight-loss rhetoric so I won't embed it here, but it also has some good basic information about lipedema. It has interviews with many of the leading doctors who treat lipedema, interviews with people who suffer with it, and information about some of the treatment options people have used for it (with an emphasis on liposuction).

      Summary of Treatment Options 

      Basically, in this series we discussed four types of treatment options for lipedema:
      • Traditional medical treatments
      • Weight and nutritional approaches
      • Liposuction
      • Alternative medicine
      What little research we have on lipedema is mostly on traditional mainstream treatments. Because lipedema was most often discovered by lymphedema doctors, many treatments come from that modality and focus primarily on dealing with edema.

      Research shows that Manual Lymph Drainage plus compression (Complex Decongestive Therapy) is very effective for lessening the worst symptoms, particularly if lipo-lymphedema has developed. This treatment is well-accepted in the medical world, and most insurance covers at least part of these treatments.

      Exercise is also very important in keeping lymph flow as normal as possible. The lymph system does not have a pump like the vascular system does, so it needs exercise to keep the lymph moving in the system. Exercise is a powerful tool, especially in the early stages to keep the lipedema minimal. Water exercise, rebounding, exercise bikes, and yoga are all good size-friendly options. Although advanced lipedema makes exercise quite difficult, it's helpful to find something that you can do to keep that lymph flowing and prevent infections.

      Weight loss is often still recommended to lipedema patients, even though lipedemic fat is quite resistant to weight loss and any loss usually returns. Anecdotally, a few women have been able to lose significant amounts of weight with lipedema long-term, but the majority end up in a long-term yo-yo pattern that tends to increase weight, not decrease it. Women with severe lipo-lymphedema are often driven to bariatric surgery because of health issues and mobility concerns, but even then, much of the weight tends to return in time and complications like nutrient deficiencies can impact quality of life.

      Although some care providers still prescribe weight loss and bariatric surgery, others simply emphasize trying to prevent further weight gain. While it is important to have healthy habits, providers need to be careful not to blame women if gain does occur. Some aspects of weight are not within our control, and lipedema flares can cause weight gain no matter how careful our habits.

      As an alternative to a weight-centric approach, some patients choose Health At Every Size® instead, emphasizing healthy habits but without engaging in restrictive eating, extreme exercise, or an emphasis on the scale. For many women who have struggled with their weight, eating behaviors, or judgmental providers, this can be a very freeing and healthy approach.

      Many lipedema websites promote special nutritional plans as a way to control lipedema symptoms. The most popular is the RAD anti-inflammatory diet, which suggests avoiding gluten, sugar, red meat, and dairy, among other things. Although promoted as the treatment of choice for lipedema, the efficacy of this diet has never actually been researched. Other nutritional plans include low-carb or paleo approaches. While some women seem to have good anecdotal results with various plans, there is a very slippery slope between these plans and eating-disordered behaviors.

      Lymph-sparing liposuction is the lipedema treatment getting the most buzz lately. Although traditional liposuction was disastrous for lipedema patients, new techniques using either tumescent liposuction or Waterjet-Assisted Liposuction (WAL) seem to show great promise. Although long-term research is limited so far, short-term research on this approach is quite promising. It shows that lymph-sparing liposuction may offer the best hope for putting lipedema into remission, lessening pain, and giving patients years of mobility back.

      Finally, some lipedema patients use alternative treatments, and many leading lipedema doctors recommend them in addition to mainstream treatments. Research is limited on alternative treatments, but some research supports the efficacy of certain herbs and supplements such as Selenium and Butcher's Broom.

      Conclusion

      Although we have no way yet to cure lipedema, the symptoms can be treated in several ways, including mainstream medical treatments, nutritional approaches, liposuction, and alternative medicine.

      And of course, you don't have to be a purist; many women mix different types of treatments. It's not unusual to hear of women using Complete Decongestive Therapy, exercise, a RAD diet, supplements, dry lymph brushing, acupuncture, and Epsom salt baths to treat their lipedema. Many hope to access lymph-sparing liposuction as it becomes more widely available.

      Whatever the approach, the point is to not take lipedema lying down. One site says:
      ...We have established an international organization to promote lipedema healing. We are in a good place. We are not waiting to die or be pushed around in wheel chairs. We are not waiting to get help from doctors who do not yet have answers. We are working with researchers internationally to begin clinical trials.
      Decide on a way to be proactive about your lipedema. Keep an open mind, educate yourself about your options, consult a knowledgeable care provider, and then be willing to experiment with the different options available.

      In time, you will find the choice that is right for you.



      References and Resources

      Resources

      *Trigger Warning: Many of these sites are not size-friendly. However, because they also contain valuable information about lipedema and its treatment, they are included here.
      Lipedema Support Groups
      Websites About Those Dealing with Specific Lipedema Treatments

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      1 comment:

      1. MichAugust 27, 2015 at 2:01 PM

        I want to thank you for this series, it has been most helpful.

        This week I've been volunteering with a fireworks show, and the people that come to see it are of every walk of life. I have seen a few with lipedema, now that I know what it looks like. I did see one woman who looks to be stage 3 or 4, and uses canes to walk. It's so sad that doc's here are uneducated about the disease.

        I know that I have type 3 and 4, and my mom has type 2 and 4 (hers goes down to the wrist). I think my grandma may have had it since she had the mattress type skin, same as us, but she had a weird diet that made everyone sick when ate there (she'd leave a pot on the stove for days and then just re-heat), and she'd hardly eat at all most days, so she was actually thinner.

        I eagerly await part 6.

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