Friday, August 14, 2015

Lipedema, Part 5d: Alternative Medicine Treatments

Image from Lipoedema Australia Support Society (LASS) 
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 are breaking the treatments into several sub-posts:
In Part Six, we will discuss practical ways to deal with and live proactively with lipedema.

But today, let's talk about possible treatments for lipedema from the "alternative medicine" world.

Then in the last Treatments post, we will then summarize what we have learned of the various lipedema treatment options.

Alternative Treatments

Traditional medical treatments have not been all that successful in treating lipedema, so many lipedema sufferers turn to alternative medicine as well. Many people seem to have the best success combining traditional treatments with alternative treatments.

These can include:
  • Supplements and herbs
  • Lymphatic Brushing
  • Acupuncture
  • Chinese Medicine
  • CVAC
  • Vibration Plates
  • Detox Procedures
Let's talk about each of these a little bit more in detail. 

Supplements and Herbs

Some doctors and advocates recommend certain supplements and herbs to help with lipedema. The three that are mentioned most often are Selenium, Butcher's Broom, and benzopyrones, but there are a host of others that are sometimes suggested as well.

The problem is that most of these have been used to treat secondary lymphedema or chronic venous insufficiency and then this use has been extrapolated for lipedema as well. While symptoms may cross over between these conditions, lipedema is not the same as lymphedema or venous insufficiency. It does not follow automatically that treatments helpful to these other conditions will also be useful ─ or even safe ─ for lipedema. 

Very little research specific to the use of these supplements with lipedema exists, so insert caveats. We just don't know how effective these are ─ or not ─ for lipedema. Still, some women are willing to experiment with these, so let's discuss the most common options. 

Selenium is a trace mineral that reduces fluid retention. It is often used with people who experience lymphedema after cancer treatment. It seems to be relatively effective in helping reduce secondary lymphedema. It has distinct advantages in that it is relatively cheap and seems to have a fairly low toxicity profile unless given in high doses. 

Limited research also suggests selenium may be helpful for PCOS and autoimmune hypothyroidism (Hashimoto's), conditions often found in conjunction with lipedema. However, a Cochrane research review found that the available favorable evidence for using selenium with autoimmune hypothyroidism was at high risk for bias, and that more neutral research was needed before forming conclusions.

Research suggests that elderly people with the lowest selenium concentrations in their blood have a higher mortality risk. On the other hand, some research has found that people with a high selenium intake are at increased risk for developing diabetes.

The benefits of selenium may be most marked in people with low selenium intake/blood levels, while its utility for those with normal levels is more questionable. If you are considering taking selenium, it seems logical that finding out what your selenium levels are ahead of time might be a reasonable precaution. It would also seem sensible to not take too high a dose, just in case.

The bottom line is that we need more research on selenium and its use specifically for lipedema and lymphedema.

Butcher's Broom is an herb (usually taken as a powdered extract in a capsule) that is thought to improve lymphatic flow. It is derived from the plant, Ruscus aculeatus. According to research, it "has been shown to bind as an agonist to alpha adrenergic receptors on lymph cells, increasing lymph fluid movement within lymph vessels."

Butcher's Broom has been shown to be modestly effective against chronic venous insufficiency, which is why some people have theorized that it might be helpful for lipedema. Some anecdotal stories suggest Butcher's Broom may be helpful for people with lipedema or Dercum's Disease. At least one case report documents significant improvement in a lipedema patient after use of Selenium and Butcher's Broom in conjunction with compression garments and Manual Lymph Drainage therapies. However, more research is clearly needed.

Benzopyrones (including coumarin) are a type of flavonoid that have been used with lymphedema patients. They were used outside of the U.S. in the 90s but were never approved within the U.S. They supposedly reduce vascular permeability and aid in the destruction of proteins so that protein fragments can pass more easily into blood vessels and be removed by the vascular system. In addition, benzopyrones may stimulate lymphatic activity.

Research on the efficacy of benzopyrones was conflicting and there were significant safety concerns because of liver toxicity with long-term use. A Cochrane review felt the quality of research trials were too poor to do a meta-analysis of the research. At this time, benzopyrones are not usually used for lipedema or lymphedema treatment.

Modifilan is a supplement that some lipedema patients report using. According to them, fat cells tend to accumulate debris and toxins, and this supplement helps detox the cells.

Wobenzym is another supplement used by some patients with lipedema. This one is is an enzyme that is reputed to "help unclog proteins" that have accumulated in a sluggish lymphatic system. There are detox regimens available online for lipedema lymph systems.

Curcumin, a substance in the spice turmeric (the dark yellow spice found in curries), is often used by women with lipedema because it is a potent anti-inflammatory. It has been shown to decrease blood sugar, slow or prevent the progression of prediabetes to diabetes, and decrease diabetic complications in some trials. It also may decrease arthritis symptoms and pain. However, it can decrease blood clotting so it should be used carefully if you are on blood thinners, aspirin, NSAIDs, etc.

In addition, many lipedema patients have experimented with other supplements like horse chestnut seed extract because it has been shown to be helpful with venous insufficiency and varicose veins. Medium-chain fatty acids such as those found in coconut oil are recommend by some.

Herbs and substances thought to have an anti-inflammatory effect often are suggested. These may include ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and fish oil (with omega-3 fatty acids).

Dr. Karen Herbst, an endocrinologist and one of the top lipedema specialists in the U.S., suggests that people with lipedema consider taking selenium, along with bioflavonoids like horse chestnut seed extract, pine bark extract, grape seed extract, or quercetin (found in onions). She recommends alternating types of bioflavonoids and adding a potent anti-oxidant like N-acetyl cysteine (NAC).

Dr. Herbst also recommends strengthening the immune system; she uses cimetidine (available over the counter as Tagamet, a heartburn medicine) as an immune modulator, but notes that this can affect the liver, so liver enzymes must be monitored with its use. Cimetidine also has weak anti-androgen properties, so if you have PCOS and are on other anti-androgenic medications, beware of a possible additive effect. Because cimetidine can affect the liver, levels of other medications can also be affected, so a careful consult with a doctor is needed. As an alternative, she suggests "yeast Beta 1, 3-D glucan" to boost the immune system. Contact her directly (see link for contact info) if you'd like a personal consult to get exact recommendations for your unique needs.

Don't forget, some of the most potent bioflavonoids are the colorful fruits and vegetables. Eating a wide variety of these every day may be a powerful help in keeping things as normal as possible. Adding a little turmeric or ginger to your foods as a spice might also help. 

Lymphatic Brushing


To help the lymph system work more efficiently, Manual Lymph Drainage is done by professionals. However, there is also lymph drainage which you can do at home on yourself. The home version does not replace the professional version, but the pros really encourage patients to follow up with home techniques to keep making progress between sessions.

There are several different techniques recommended, but the most popular right now uses actual brushes. You can read more about these here and here and here.

However, remember that dry brushing is also a trendy fad in spas to "release toxins" and "break up cellulite," and doesn't have much research proving its efficacy.

Vibration Plates

Anecdotally, some women are using vibration on the body to try to break up fibrotic tissue, lipomas, and "flush out toxins and extra fluid." And of course, many of these vibration plate machines are advertising how great they are for weight loss and "breaking up the fat."

This sounds like a new variation on the old fat-vibrating machines from old TV and movie ads, so personally I am dubious about this treatment. However, the "new" versions are much less violent in their shaking and supposedly therefore safer.

However, some research suggests that vibration can increase blood flow and lymph flow in the lower body, as well as strengthen muscles modestly.

The Fat Disorders Research Society mentions vibration as a possible treatment for lipedema, especially for those with mobility issues who can't do normal exercises. However, they suggest that compression garments should not be worn during a vibration plate session, unlike other exercise.

If this really does turn out to be a helpful therapy option, then it could have significant implications for those whose advanced lipedema makes regular exercise difficult. However, I'd like to see some actual research on lipedema patients before I get too excited about this one.

CVAC™


CVAC is listed in some lipedema materials as a possible treatment, but with few details. CVAC™ stands for Cyclic Variations in Adaptive Conditioning. It reduces the fluid in tissues by "variable patterning of different atmosphere pressures around a person sitting in an altitude simulator." Basically, people are placed in a hypobaric chamber and then rapidly cycled through different pressures designed to simulate different altitudes, using "whole body cyclic pneumatic hypobaric compression."

This is a trendy treatment for athletes, who view it as an efficient way to increase oxygen-bearing capacity and improve performance. Many elite athletes are using it these days, and a few gyms even have these machines.

However, it is also being used for people with chronic diseases, especially those which may not permit them to do a lot of active exercise. The cycling through of different pressures allows exercise "at the cellular level," according to the device's website. Some patients with diabetic neuropathy have reported great improvement, and it may help improve insulin resistance and sleep as well.

There is a study on CVAC™ for people with Dercum's Disease, another Rare Adipose Disorder somewhat similar to lipedema, with suggestions that it might be helpful for people with lipedema too. Anecdotal stories suggest it does help reduce pain significantly in some people with Dercum's Disease. Only more study will tell if it is helpful for people with lipedema.

Acupuncture


In the lymphedema community, treatment with acupuncture would be considered an absolute no-no.

When people have severe lymphedema after cancer treatments, for example, they have to carefully avoid anything that might injure the affected limb. Taking blood pressure or putting an IV in a lymphedema-affected arm can make the lymphedema FAR worse. And any holes, even very small ones, could be potential conduits for bacteria, and infections are a very real risk in lymphedema due to depressed immunity. So lymphedema patients are taught to NEVER let needles of any kind be put into an affected limb.

This lymphedema rule has been extrapolated to lipedema without knowing whether that restriction is true for lipedema. For one thing, acupuncture needles are extremely fine and don't go in that far, so they probably do not represent the same degree of risk that a blood-draw or IV needles would pose. For another thing, until Stage 4, lipedema doesn't present the same way as lymphedema or have the same risks. As a result, it's hard to say how risky acupuncture might be for someone with lipedema. My best guess is that it might depend on the degree of their lipedema, frankly.

It's only anecdotal of course (from only one case!), but I personally have acupuncture treatments all the time, even in my lipedemic legs, and it does not seem to make things worse at all. Indeed, I find it helpful for easing much of the pain, muscle tightness, and other symptoms that go hand in hand with lipedema for me.

On the other hand, I have not found it effective for reducing a lipedemic flare or the edema I experienced after two of my children's births. Personally, I don't think it's really an effective treatment for reducing edema, but it can be useful for some of the musculo-skeletal issues that can go along with an altered gait from lipedema. My acupuncturist also works on optimizing my thyroid function and minimizing PCOS symptoms, and it does seem to help that somewhat.

If you have Stage 4 lipo-lymphedema, then it seems sensible that acupuncture on the affected areas might be contraindicated. (I don't have lipo-lymphedema, so perhaps this is why I can have acupuncture without problems.) However, acupuncturists can do "distal" points ─ points that are far away on unaffected areas, yet which can still treat the affected area. Some people are still not willing to risk even that much potential exposure to bacteria when they have lipo-lymphedema, and it's easy to understand why they are cautious.

Bottom line, it seems to be a personal decision whether to try acupuncture, but I wouldn't say across the board that it's contraindicated ─ as long as you don't have secondary lymphedema.

Although acupuncture can be expensive in a private clinic, there are community acupuncture clinics where group treatments are very affordable, and many Chinese Medicine schools also offer steeply discounted appointments. Even if your insurance doesn't cover acupuncture, there may still be a way to afford treatment.

On the other hand, if you don't feel comfortable using needles anywhere, then by all means avoid acupuncture. Just remember that if you are intrigued by the possibilities but don't want needles, you can still receive acupressure in non-painful areas, or you can consult a Chinese medicine practitioner on herbs and other options as well.

Chinese Medicine

Chinese Medicine views lipedema as having a "yin" constitution, or too much cold and damp, if I understand it correctly. The Spleen in particular is considered the source of the edema (not "spleen" in the traditional Western sense of a specific organ).

The Chinese Medicine approach uses herbs to help balance the constitution, suggests avoiding certain foods (soy, dairy, and others), suggests avoiding cold foods, using lots of dried ginger and certain other herbs, and getting plenty of exercise. To read more about Chinese Medicine's approach to lipedema, read here and here.

Personally, although I regularly receive acupuncture, I do not use much other Chinese Medicine. I have never found it particularly effective for me, and I'm too Western in my thinking to be comfortable with the concept of "qi" or "damp" or "Yin-yang." I also am hesitant about using herbs without knowing a great deal about their efficacy, toxicity, or potential interactions.

However, many people have tried Chinese Medicine and find it helpful. Again, a Chinese Medicine college is an affordable option if finances are a concern.

Detox Procedures

Many people with lipedema feel that their tissues do not clear proteins and toxins well because of the impairment of the lymph system. They feel these toxins build up along with the excess fluids, and that it's important to find ways to "flush away" these things. Whether this is true or not is not really proven, but it does seem somewhat plausible. So many "alternative" treatments focus on "detoxing" from these substances.

Some promote the idea of soaking in a bath with Epsom salts (magnesium sulfate), which are available very cheaply over the counter in drugstores. As long as the Epsom salts are only used for soaking (and not taken internally), the magnesium is absorbed through the skin and that makes it harder to overdose. Some people like to shower afterwards, just in case.

Oral magnesium supplements do have the potential to cause low blood pressure, diarrhea, headache, hypoventilation, heart issues, lightheadedness, allergic reactions, or even death in some cases, so never take it internally (either orally or in an enema) without a doctor's guidance.

If you can overdose with internal intake, it's theoretically possible this could occur with skin absorption too. As a precaution, don't overdo the dose you put in the bath, don't take too many Epsom salt baths close together, and don't stay in a long time. Be aware that some people do report dizziness or extreme tiredness after an Epsom salt bath; eat well and be well-hydrated before a bath as a precaution. If you are allergic to sulfas, have unstable blood pressure, brittle diabetes, or open wounds, you should probably not use Epsom salts. If in doubt, talk to your provider before trying one.

Some people with lipedema promote Detox Smoothies, which is juicing certain vegetables and herbs together to help clear lymph toxins through specific nutrients. Whether any of this is helpful is unknown and has not been studied at all. Juice-only smoothies are pretty low-risk, but you might be better off eating the whole fruit so you get the fiber as well as the juice. If you are going to do a juice smoothie, eat a little protein with it to even out the effect of fruit juice without fiber on your blood sugar.

Juicing just fruits and veggies is probably not harmful, but be careful adding herbs. Herbs can be very potent medicines. Know what the herb you are using does, know its proper dosage, know how it could interact with any other medication you are on, and be sure you have a safe unpolluted source for that herb. Above all, avoid using unproven radical detox regimens.

Summary

Because traditional treatments are not all that effective in treating lipedema, many people have turned to alternative medicine for further choices. Unfortunately, there is not a lot of research on these alternative medicine options so it's hard to know what's effective or not.

The most commonly-used alternative treatment is supplements and herbs. Selenium is the supplement with the most research behind it. It has been shown to be helpful in reducing lymphedema symptoms. Whether it helps lipedema or not is still up in the air, but some leading experts on lipedema feel comfortable recommending it routinely, as long as doses are reasonable.

Some lipedema experts are also suggesting Butcher's Broom now. The combination of Selenium and Butcher's Broom was shown to help one woman with lipedema in a recent case report. However encouraging this is, it is only one case report so it does need to be verified by other research.

Benzopyrones used to be routinely recommended for lymphedema patients in non-U.S. countries but their potential for liver toxicity has put them out of favor now. Some doctors are recommending bioflavonoids instead now.

Turmeric has been shown to be a potent anti-inflammatory, so many people with lipedema are trying it. Although we have no research specifically on turmeric for lipedema, it has the advantage of benefiting a number of other conditions.

Other substances that are sometimes used for lipedema include horse chestnut seed, quercetin, pine bark extract, modifilan, wobenzym, grape seed extract, cimetidine, NAC, ginger root, milk thistle, brown and green seaweed, bio-rutin, cayenne pepper, and coconut or fish oil.

Dry lymphatic brushing is all the rage these days. It is reputed to help continue the benefits of Manual Lymph Drainage massage at home, but I am unaware of any studies proving this. Still, it seems unlikely to harm so it may be worth trying.

Vibration Plates is another trendy treatment, although this one seems to have cycled back from previous years. If effective, it could offer significant benefit for those whose mobility has been affected by severe lipedema. But first, we need some research showing its effectiveness for lipedema!

CVAC™ is a new therapy that uses cycling atmospheric pressures in a hypobaric chamber to help reduce fluid in tissues and improve oxygenation. Although mostly used with elite athletes at this point, there does seem to be some therapeutic potential for chronic diseases. It has helped the severe pain that some people with Dercum's Disease experience, and Dercum's is very similar to lipedema in some ways. This seems like a very interesting possibility to explore, but with limited potential, since these hypobaric chambers are not widely available. Again, we need research.

Acupuncture is probably contraindicated for those who have developed lipo-lymphedema, but may be okay for those who have not developed secondary lymphedema. There is no research on it for lipedema. My own experience (which is only from one person, of course) suggests that it doesn't really help the edema or reverse the lipedema, but that it can be very helpful for musculoskeletal pain and tightness that can be a side effect of lipedema issues. If it helps keep you from needing pain medication, then it seems worth trying.

Some people have explored Chinese medicinal herbs and treatments for lipedema. Some really feel helped by it. Although I use acupuncture regularly, I have not been willing to experiment with unknown herbs for safety reasons. Again, it would be helpful to have some research on it.

Finally, "detox" procedures are all the rage these days. Beware their very trendiness, and avoid any radical detox regimens. However, Epsom salt baths might be reasonable thing to consider if you use a little common sense, and juicing is unlikely to be harmful as long as it's done sensibly too.

As with any condition, treatment doesn't have to be all-or-nothing allopathic (traditional medical) or alternative. Most people mix a little of everything together. Nearly every lipedema treatment is lacking in long-term research to back up its efficacy and safety, so it's a bit of a crap shoot figuring out what to try. Don't limit yourself to only allopathic treatments, but do use common sense in whatever you try.



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
Herbs, Drugs, and Supplements

J Support Oncol. 2003 Jul-Aug;1(2):121-30. Current status of selenium and other treatments for secondary lymphedema. Bruns F1, Micke O, Bremer M. PMID: 15352655
...Drug therapy has included the use of diuretics, corticosteroids, and coumarin- or flavonoid-type compounds. Diuretics and corticosteroids may be useful in edema of mixed origin and in palliative circumstances but cannot be recommended for persistent lymphedemas. Coumarin and flavonoids reduce swelling in all types of lymphedema, but their long-term use is problematic. One promising step in drug therapy seems to be the introduction of free-radical scavengers, such as selenium. Present data demonstrate that selenium can enhance the benefits of physical therapy in radiation-induced lymphedemas. The very low toxicity profile of selenium and its cost effectiveness are further arguments for its use in lymphedema treatment.
Acta Pharmacol Sin. 2012 Feb;33(2):155-72. doi: 10.1038/aps.2011.153. Rare adipose disorders (RADs) masquerading as obesity. Herbst KL. PMID: 22301856
...People with RADs [Rare Adipose Disorders] do not lose SAT [subcutaneous adipose tissue] from caloric limitation and increased energy expenditure alone...Treatment recommendations focus on evidence-based data and include lymphatic decongestive therapy, medications and supplements that support loss of RAD SAT....

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