The question I get asked the most is:
“What actually helps Dercum’s?”
The truth is—there isn’t just one thing.
It’s not one diet.
Not one therapy.
Not one supplement.
→ It’s everything working together.
And just as important…
→ Learning what isn’t helping.
A Quick Note on My Health
I’m not just managing Dercum’s. I’m also navigating:
- Lipedema
- Hypermobile Ehlers-Danlos Syndrome (hEDS)
- Hip Dysplasia
- Scoliosis
- Migraines
- Fibromyalgia….and more
Those of us with Dercum’s tend to struggle with a cluster of diseases, not just one.
And something I’ve noticed:
→ When my hip dysplasia pain is flared, everything can flare.
- The lipomas become painful
- My body feels more inflamed
- Muscles and fascia get tight and stiff from head to toe
- Migraines can be triggered
- My overall pain increases, greatly
- Brain fog rolls in
→ When this happens, I call it my “Whole Body Migraine“.
This is part of why I believe the body is deeply connected—through fascia, the nervous system, and structural imbalances.
→ No pill can fix that.
It’s taken me decades to figure out how to manage these flares.
For a long time, I didn’t even have the words to describe what I was feeling. I was dismissed and gaslit by doctors, told everything was “normal,” even when my body clearly wasn’t functioning normally.
I had to start paying attention and figuring things out for myself, because living with that level of pain is not sustainable.
Today, I’m going to share what has helped me.
I’m not cured—I still have chronic pain and flares. But I can function most days, and that is something I didn’t always think was possible, especially because up until just a few years ago, I felt my brain was failing too. But baby I’m back!
There are things I can’t avoid that will trigger pain flares and progression:
- Stress
- Illness (like COVID)
- Surgery
- Injuries
- Toxins
But over time, I’ve realized there are other triggers that I can control.
And understanding those has made a huge difference.
The biggest is:
→ Plant Toxins- I CAN control the plant toxins in my diet.
For several years I confused toxin exposure, with what my body may be detoxing.
What feels like “detox” or processing – These can sometimes feel very similar in the body.
But they are not the same.
And learning the difference between them has been one of the most important parts of managing my pain and finding my flare triggers.
One of the most confusing parts of healing is this idea that:
→ “You have to feel worse before you feel better.”
Sometimes that’s true, like moving lymphatics for the first time.
That can make you sick, but it’s temporary.
And sometimes… it’s not true.
And learning the difference changed everything for me.
When my body is actually processing something, it may not show up as increasing pain over time.
It may look like:
- A wave of deep, heavy fatigue
- Needing extra sleep
- A “shutdown” feeling for a day or two
And then:
→ I wake up feeling better
I noticed this with things like castor oil when I first started using it. Or my first MLD (Manual Lymphatic Drainage) session.
Oxalate has been a different experience for me.
For me, oxalate detox is:
- Short-lived pain or itching
- Fatigue-based (not escalating pain)
- Followed by improvement
It’s a plant compound that, in my body, has clearly contributed to pain—both when I was consuming a high-oxalate diet and at times when my body seemed to be releasing it.
What I’ve noticed is a difference between those two states.
When my diet was high in oxalates, I experienced:
- more constant, full-body pain
- stiffness and inflammation from the moment I woke up
When my body appears to be releasing oxalates, the pattern feels different.
→ The pain is usually more localized and temporary, not the same full-body intensity I experienced before.
Because of that, I’ve come to think of these as two different experiences:
→ ongoing oxalate overload vs. periods where my body is processing and clearing it
Other Sources of Pain Flares
There were many things I tried that seemed fine at first, until they weren’t:
- Electrolytes
- Purified mineralized water
- Many different supplements, including anti-inflammatory supplements
- Certain products like protein powders and protein bars, even the clean ones.
But these are all healthy things, right?
Well, I didn’t react right away.
So I kept taking them daily.
But then:
- My pain increased
- Migraines became more frequent
- My “whole body migraine” intensified
And the pattern became clear:
→ The longer I used them, the worse I felt
→ When I stopped, the pain went away
That’s my body saying:
→ “This is too much for me.”
How I Now Tell the Difference
Likely Detox / Processing
- Short-term fatigue
- Need for extra rest
- Symptoms pass relatively quickly
- You feel better afterward
Likely Overload / Sensitivity
- Symptoms build over time
- Pain increases the longer you continue
- No improvement with continued use
- Relief when you stop
→ Not everything that makes you feel worse is helping you.
1. Diet (Carnivore / Low Oxalate) & Spring Water
This was foundational. No pill will fix a bad diet.
After years of eating what I thought was a “healthy” diet, I realized certain plant foods were contributing to my pain, inflammation, and progression.
When I removed high oxalate foods and shifted to a more animal-based way of eating:
- My pain decreased
- My energy improved
- My body finally felt like it could start healing
For some people, symptoms may increase at first (often referred to as oxalate dumping).
But even with oxalate dumping, this should not look like ongoing, escalating pain that continues indefinitely. It comes and goes and it’s typically isolated to one area of my body, not my whole body.
The digestive system may need time to adjust with a new way of eating, but my digestive system felt instant relief removing all the high oxalate foods likes nuts and spinach.
It took about 3 months on Carnivore to realize this isn’t just a diet for weight loss, but whole body healing. My only regret is not starting it sooner.
I had already tried whole foods plant based, anti-inflammatory, AIP, Paleo, Keto, and Low Carb. None of them have healed my body like Carnivore. Cutting out processed foods, cutting out sugar was all helpful, but the oxalate was triggering a lot of the pain and a very long overwhelming list of symptoms.
Water (A Small Change That Made a Big Difference)
This might seem like a small thing—but for me, it wasn’t.
I went through a phase where I was drinking ultra-purified water, then later with added minerals and electrolytes.
At first, I didn’t notice anything.
But with daily use:
- my pain increased
- my migraines worsened
- my body became more reactive
When I stopped, the pain went away.
I also noticed something similar with my local tap water.
Even though it’s considered “soft,” I felt:
- consistently dehydrated
- like I couldn’t stay hydrated no matter how much I drank
- increased symptoms like kidney pain and what felt like gout flares in my big toe
→ Electrolytes didn’t fix it
→ Drinking more didn’t fix it
That’s when I really started paying attention.
When I switched to natural spring water, my body responded very differently.
- I felt more hydrated
- less reactive
- and overall more stable
I can’t fully explain why—but I’ve learned that not all water is the same.
For me, simpler has been better.
→ Less added, less processed, more natural. Spring water and a Carnivore diet – is what our ancestors ate and drank.
2. Fascia & Lymphatic Support (The Missing Piece)
This is something I almost never see talked about—but it’s a major piece.
Dercum’s isn’t just about fat and lipomas.
It involves the fascia and lymphatic system, which affect fluid movement, pressure, and pain.
When these systems are stagnant or restricted, symptoms can intensify.
No pill can fix your facia and lymphatics.
What Does Help:
Osteopathic Manual Therapy
A gentle, hands-on therapy that helps mobilize areas that feel stuck—especially along the spine, connective tissue, and muscles. It relieves pain and stiffness. A game changer for me.
→ This is where I first realized:
“The pain feels connected.”
The Perrin Technique
A specialized manual lymphatic drainage approach focused on the brain and central nervous system. This type of MLD focuses on the chest and back to create suction in the lymphatic system and uses craniosacral to assist the glymphatic system in draining.
This can sometimes cause fatigue in the beginning as the body starts to process and move stagnant fluid from the chest and brain. Dr. Perrin developed this treatment to help people with Fibromyalgia and ME/CFS. (I will be writing a future blog post dedicated to this experience).
Lymphatic Pumping
Helps move lymph fluid through the body.
For me, this has:
- reduced heaviness
- improved sleep
- supported overall recovery
Additional Therapies
I’ve also benefited greatly from myofascial release through my Rossiter Stretching Therapist. This one kinda hurt, but I found this therapy very effective and coincidently, it forced a lot of oxalate out of my body.
I’m in Physical Therapy once per week where some manual therapy and myofascial release techniques are used, after I complete my exercises. Or before if I’m in a flare. If your PT does not do manual therapy and myofascial release, find a new PT, AND find one that is EDS Aware.
3. Nervous System Support
When your body is in constant pain, your nervous system stays activated.
That affects:
- inflammation
- muscle tension
- pain signaling
- healing
What has helped me:
- Bringing ZEN back
- Breathwork
- TRE (trauma release exercises)
- Emotional processing
- Kava (occasionally, for deeper nervous system support)
→ This isn’t just mental—it directly affects the physical body.
I’ve had to intentionally bring my body back into a more regulated state.
At one point, I realized how much I had drifted away from that.
I pulled out my case of essential oils and started incorporating them into my healing again. I needed to feel calm—to feel grounded—especially while raising neurodivergent kids, where life can feel overstimulating and unpredictable.
Bringing back simple things like:
- diffusing essential oils
- sound healing
- calming routines
Helped me create more of that “Zen” feeling in my body.
And that matters more than it sounds, especially with Neurospicy kids.
Because when the nervous system starts to settle:
- Pain CAN decrease
- The body becomes less reactive
- Healing becomes more possible
Kava Tea was another piece that surprised me.
The first time I tried it, I noticed my pain soften. The following week, I was able to be on my feet longer and do something fun with my kids again—something I hadn’t been able to do in a while. I had been in pretty severe hip pain for several months. It greatly decreased within 30 minutes for drinking Kava for the first time.
Now I use it occasionally, and I’ve found it helps:
- calm my system
- reduce pain intensity
- support a more regulated state
→ When the nervous system calms, everything else can shift.
5. Pain & Recovery Tools
What Is Red Light Therapy?
Red light therapy uses specific wavelengths of red and near-infrared light that penetrate the skin and interact with your cells.
In simple terms:
→ it helps your cells produce more energy
→ supports circulation
→ and can help reduce inflammation and pain
It’s non-invasive and doesn’t involve heat like a traditional sauna—it’s light-based.
These tools have helped me manage flares and support healing.
Red Light Therapy (Full Body vs At-Home)
I’ve noticed a clear difference between at-home devices and full-body units.
At-home red light (lamps, mats, wraps):
Helpful for spot-treating pain.
Full-body stand-up bed with vibration (salon):
A completely different experience.
For me, the full-body bed is:
- energizing
- deeply regulating
- capable of relieving pain completely—or significantly reducing it during a full-body migraine
The added vibration plate seems to amplify the effect, likely by supporting circulation and lymphatic movement.
→ At-home units don’t replicate this, but they help.
Castor Oil
This has been one of the most helpful, simple tools.
- Helps soften pain in areas like my thighs, elbows, arms, feet, and the flaring lipomas
- Supports lymphatic movement
- Can trigger short-term fatigue (for me in the beginning), followed by improvement
- Castor oil helped heal a decade of plantar fasciitis.
7. Sleep (One of the Most Overlooked Pieces)
Sleep has been one of the most important factors in managing my pain.
When I don’t sleep well:
- my pain increases
- my body feels more inflamed
- everything becomes harder to manage
When I do sleep well:
- my body recovers better
- my nervous system is calmer
- my pain is more manageable
Over time, I realized sleep wasn’t just “rest.”
→ It’s when the body actually repairs and resets.
If you are waking up in pain, your body isn’t repairing and resetting, you aren’t going into delta wave sleep.
How can we get into delta wave sleep if we don’t sleep well?
Well I didn’t sleep good most of my life. Due to my diet, hormones, and life long lymphatics issues.
Here are the tools that have helped me:
Lymphatic Pumping Before Bed
Using my upper body lymphatic pump (jacket, shorts, hips, arms, torso) has made a noticeable difference.
- I fall asleep faster
- I sleep more deeply
- my body feels less “stuck” at night
Bioidentical HRT
This was a big one for me being a woman in Perimenopause. Many Perimenopause of the symptoms went away after starting the Carnivore diet, except my disrupted sleep came back.
Before HRT:
- I would wake up around 3AM with hot flashes
- sometimes I couldn’t fall back asleep for hours
After starting HRT:
- I sleep through the night
- the 3AM wake-ups stopped
That alone made a huge difference in my overall pain and energy.
Targeted Supplements (that I tolerate well)
- Magnesium glycinate
- GABA
- L-theanine
These help support relaxation and make it easier for my body to wind down.
→ As always, I’ve learned to go slowly and pay attention to how my body responds. Many highly recommended supplements, even a lot of magnesium and other minerals actually increase my pain after repeated use.
8. Reducing Triggers (What I Had to Remove)
Healing wasn’t just about adding things in.
It was also about recognizing what was triggering my body—and removing those inputs.
Over time, I started noticing patterns.
Certain things consistently caused:
- pain flares
- inflammation
- that “whole body migraine” feeling
For me, some of those included:
- high oxalate foods
- certain plant compounds (like in nightshades)
- pesticides and environmental exposures
- some supplements, additives, and “enhanced” products
→ These weren’t always immediate reactions
→ Sometimes they built over time
This became just as important as anything I added.
Because:
→ You can’t out-heal something your body is constantly reacting to
A Pattern I Couldn’t Ignore
One of the biggest things I’ve learned is how strongly my body reacts to certain environmental exposures—especially toxic chemicals.
I didn’t understand this at first, but after several experiences, a pattern became very clear.
There were multiple times where I had direct or indirect exposure to lawn chemicals or pesticide sprays, and each time, I had a very similar reaction:
- sudden migraine and right-side pain
- intense hip pain
- a full-body pain flare
- poor sleep or insomnia
One of the first times, I stepped in something in the garage that I thought was water—but it had been a spilled herbicide or pesticide. Shortly after, I developed a migraine and right-side pain.
Another time, I came home from the store and noticed ants had already been killed in the kitchen. I wiped them up, not realizing a spray had been used.
→ Shortly after, I had another intense migraine and right-side body pain.
Then there was a time outside while grilling. My daughter was playing with the hose and sprayed me. After I grabbed the hose from her, I noticed a chemical smell but didn’t think much of it in the moment.
After Dinner:
- I had severe hip pain and a migraine
- I couldn’t sleep
- my daughter and husband who had also touched the hose, couldn’t sleep
- the other kids, who didn’t have exposure, slept fine
The lawn had been treated that day.
Circling back to my first Dercum’s Story post, my first painful lipoma developed after using herbicide.
I’ve had too many bad experiences with these chemicals.
What This Taught Me
I’m not saying this is everyone’s experience.
But for me, the pattern was consistent enough that I couldn’t ignore it.
→ My body reacts strongly to certain environmental exposures.
And these reactions:
- can feel neurological
- can trigger full-body pain
- can disrupt sleep
This became an important part of my healing:
→ Not just adding support
→ but reducing what was triggering my system
It’s Not One Thing
We need to:
- Support the body from multiple angles
- Reduce the load on your system
- Learn what your body is actually telling you, not numb it.
If You’re Struggling
If you feel like nothing is working…
If you’ve been dismissed or told everything is “normal”…
You’re not alone.
There are things that can help.
And sometimes the shift isn’t doing more.
→ It’s doing what your body can actually respond to.
Healing isn’t about forcing your body to respond.
It’s about creating the conditions where it finally can.
Finding the Right Therapist
After decades of trying different therapies and working with dozens of practitioners, I’ve learned something important:
→ If you aren’t getting results, find a new therapist.
That might sound simple—but it’s not always easy to do.
My Experience with Physical Therapy
Years ago, I went to physical therapy to help with my pain.
I went consistently for months.
→ I had zero improvement.
Why?
Because I need hands-on therapy—manual therapy, myofascial release, and gentle structural work.
Instead, I was:
- walking in with pain
- doing exercises
- walking out with the same pain
Three times a week.
It was exhausting—and discouraging.
I felt like, I can do this at the gym, on my own time, for less money. Why am I here?
→ If your PT isn’t doing any manual therapy, it may not be the right fit for you.
Insurance Limitations (And Why They Matter)
This is something I wish more people understood.
Insurance can limit how a therapist treats you.
For example, I have hip dysplasia in both hips.
If I go in for right hip pain:
→ insurance often restricts treatment to that one area
So what happens?
→ The other hip starts hurting… and isn’t being treated.
The Body Is Connected
This has been one of the biggest lessons in my healing and I wish insurance understood:
→ The whole body is connected.
Pain is rarely isolated to just one area.
The right therapist understands that.
What to Look For in a PT
The best physical therapists I’ve worked with:
- Understand connective tissue disorders like hEDS
- Use hands-on, manual techniques
- Focus on reducing pain—not just assigning exercises
- Are willing to treat multiple areas when needed
My current PTs don’t just focus on one joint.
If I come in with:
- hip pain
- neck pain
- back tension
→ They address what’s actually going on in my body that day.
That’s the kind of care that has helped me. I go weekly and have for about 6 years.
The Right Clinic Matters Too
It’s not just about the therapist—the clinic matters, the need the right equipment.
For example, my newest clinic has an anti-gravity treadmill.
This allows me to:
- walk with less weight on my joints
- maintain better posture
- move even during flares
It reduces the load on my body in a way that regular walking doesn’t.
Finding an Osteopathic Manual Therapist
This has been one of the most important pieces of my healing.
Osteopathic Manual Therapy is:
- gentle
- hands-on
- focused on the body as a whole
It helps address:
- structural restrictions
- fascia
- overall body alignment
Some of these practitioners don’t take insurance, but may offer packages with discounted rates. This allows them to work the entire body, not just what your insurance dictates.
I need to see her at least monthly and have been getting this treatment for 13 years.
Combining Therapies (What I Recommend)
If possible, I recommend finding someone who does both:
- The Perrin Technique
- Osteopathic Manual Therapy
Having one practitioner who can do both has been incredibly helpful.
For example:
- If I’m scheduled for Perrin but need more structural work, we can adjust
- I’m not locked into one approach when my body needs something different
For me, that flexibility has been worth it.
Finding a Perrin Practitioner
You can search for a trained Perrin practitioner here:
→ https://theperrintechnique.com
The Perrin Technique will take time. You’ll need to start weekly, then after a few months you’ll move to biweekly, monthly, and bimonthly as your body continues to heal. For me, it took a year to get to monthly treatments.
If There Isn’t a Perrin Practitioner Near You
Don’t assume that means it’s not an option.
→ There are ways to help bring this therapy to you.
Start by learning as much as you can:
- Read Dr. Perrin’s books so you understand the treatment
- Watch his presentations on YouTube
- Talk to your current therapists about what you’re learning
That’s exactly what I did.
I shared the information with my Osteopathic Manual Therapist, and she was interested enough to take it further.
→ She flew out of state to get trained.
When she came back, her schedule filled immediately—there was clearly a need.
Because of that demand, she helped organize for Dr. Perrin to come to our area and train more therapists.
And what happened next was incredible:
→ In one year, I went from having no practitioners in my state
→ to having around 15, with several within 20 minutes of me
MAKE IT HAPPEN, this therapy is critical for ANYONE who suffers from chronic pain and fatigue.
What This Taught Me
Sometimes access doesn’t exist… yet.
But when there’s enough interest and awareness:
→ it can grow faster than you think.
What I Personally Use
These are a few of the tools I’ve personally used and incorporated into my routine. I may earn a small commission from qualifying purchases through my Amazon links, at no extra cost to you.
These oils are tools I use to help support my nervous system throughout the day. They don’t replace the deeper work, but they help me stay more calm, grounded, and regulated. When stress is high with Neurospicy kids, diffusing these helps me regulate. I also apply Frankincense with castor oil on areas of pain, or I use the Paine blend. It actually does take the edge off.
- Frankincense Essential Oil (Butterfly Express)
- Le Everlasting Blend (Butterfly Express)
- Heart Song Blend (Butterfly Express)
- Tranquility Blend (Butterfly Express)
- Letting Go Blend (Butterly Express)
- Le Paine Blend (Butterfly Express)
- Illumination (Kate’s Magik)
- Diffuser (not the one I have, but similar)
Nervous System Support
- Kava Tea (Kava Mocktails)
- It can cause headaches, no more than 2 servings per day (or 1 if its strong) and stay hydrated.
Pain & Lymphatic Support
Targeted Supplements (that I tolerate well)
- Thorne Magnesium Glycinate
- GABA & L-theanine
- Nutribiotic Electrolyte Capsules
- Glutathione (I’m going to test a new glutathione since my go to is no longer available).
At-Home Red Light (for spot treatment)
- Hooga Red Light Panel
- Hooga Red Blanket (better than what I have)
Note: I personally use full-body red light beds at a salon, which provide a much stronger effect than at-home devices. These are just the closest at-home alternatives I’ve found and work great when I can’t get to the salon.
Stay tuned for more of my story and more details about the therapies I’ve listed above.
Thank you
