My Story With Lipedema
Welcome to my Lipedema story! If you are reading this you probably have or suspect you might have Lipedema. If you suspect you have Lipedema please read the other information on my site on how to recognize, diagnose and treat your Lipedema as soon as possible! Starting treatment early is paramount to halting the progression of the disease!
Early Years
As for my story I was born at a normal weight and never had weight issues all through elementary and most of my middle school years. However, when I hit puberty the normal body parts starting changing (hips rounding, more curve in the waist and enlargement of the breasts) and my mother and family doctor said everything was progressing normally. My eating habits and physical activity levels did not change during this time.
I would have to say sometime in my mid high school years I noticed my hips and thighs were growing a little larger even though I had not changed anything else in life (including my diet). I remember school shopping with mom and her commenting on how I had to go up in size in my pants to fit my slow growing lower body area. At the time she wasn’t concerned as she knew my eating habits were normal and it was probably caused by my limited physical activity. I agreed with her and didn’t give it a second thought.
College Time
After high school I went off to college where I lived on campus and had to walk distances to get to my classes. Due to financial issues I could only afford to eat two meals at the cafeteria per day, which was usually breakfast and dinner, and didn’t store much food in my dorm room. I thought for sure with my mostly healthy limited diet and all the walking I had to do in a day (about 2 miles) I would surely be able to drop a couple of pant sizes that I gained in my high school years.
After a year of this pattern I noticed I had only lost a couple pounds, nowhere near what I thought I would lose. I got great muscle tone, but the weight just wouldn’t seem to drop. This was baffling and our family doctor said I just needed to eat a healthier diet and implement a regular exercise regimen. Needless to say, this didn’t work!
Marriage
I left college after only a year and decided to marry my high school sweetheart at the age of 20. I can remember shopping for a wedding dress and being devastated that my weight was up to 215 pounds and I was well into 20+ size clothes. I was happy to get married but upset by how I looked, especially being the center of attention, on my wedding day.
We lived overseas in Japan for three and half years while he served in the US Navy. We lived off base in a local Japanese fishing village. We loved our neighbors and walked all over the neighborhood at night. We ate a fairly healthy diet and got a lot of exercise. However, my weight continued to climb and the pant sizes kept increasing.
After the Navy my husband did three years in the US Army. We lived in Germany where I was diagnosed with GERD (Gastroesophageal Reflux Disease) and IBS (Irritable Bowel Syndrome). Again more weight gain and no answers!
My First (Unknown) Lipedema Complication
During the 1990’s I graduated college with a BS in Business Administration/Computer Information Systems and went to work for a tech company who paid me a great wage. During the mid 90’s I had my first ever strep throat out of nowhere and delayed getting it checked it out because I thought it was just a sore throat. Then both my lower legs swelled up bright red and hurt so bad, like a really bad sunburn, that I lay on my bed crying in pain for two whole days! Turns out that I was allergic to the Augmentin (antibiotic) which I was prescribed. I also took it too late into the infection, whereby the strep toxins circulating in my system ended up settling into my legs. This caused the development of a 3 inch round open sore on my left ankle that took months to heal.
Note – now we know that was my first bout of cellulitis – a common enemy to those who suffer with Lipedema and Lymphedema!
By now I was about 300 pounds and noticing in addition to widening hips and thighs that I also had significant swelling in both my legs. Again my doctor strongly advised me to get more exercise and a better diet! He missed the part where I said can’t you see both of these things were not working!
Sadly, my company was closing their office so my husband and I decided to break out of the east coast rat race and head west. We settled into our new home and I landed a great job working with a health organization assisting Native American communities with their healthcare needs in the Northwest. My weight had been steadily increasing, but I could still get business clothes through online stores such as Roamans, Woman Within and On the Plus Side so I just kept forging ahead without any clues or answers. What other options did I have?
Our Children
In 1998 we made the decision to adopt our first child. My husband and I traveled to China in July of 1999 to unite with our first sweet baby girl. Now I started having problems walking distances, which they do a lot in China, climbing stairs and breathing hard after a short distance or in hot heat. (China in July is HOT and there is limited a/c and no safe ice for un-acclimated Americans!) I believe I was about 385 pounds during this event. My lower legs were discolored, they swelled terribly and were extremely painful. My only relief was elevating my legs higher than my heart for as long as I could (which isn’t long when you have a new baby to care for!).
In 2003 we adopted our second sweet baby girl. However, this time my husband and mother went to China without our first child and me. I was on crutches with knee stabilization problems and walking was too painful to travel back and forth to work never mind around China. I was about 50 pounds heavier than when we adopted our first child and was still struggling to find a solution to this increasing swelling and weight gain!
My First Diagnosis!
In 2001 I went to see my doctor, who said and did nothing about my painful body and leg size. However, I was pleasantly surprised to be met by his new intern. He jumped back in shock and asked who was treating my lymphedema! I said what’s lymphedema? He was so shocked that no one in my last 15 years had diagnosed me with it nor was treating this very debilitating condition.
Note – It turns out I was already at Stage 4: Lipo-Lymphedema entering treatment, only no one knew about the Lipedema!
Here’s where I will disclose this intern was fairly new out of school and had some minimal training in lymphedema. Older practicing physicians and even most today rarely get training in the recognition or treatment of lymphatic disorders, never mind adipose fat diseases! This is where you and I and the rest of our affected community need to become advocates and educators to spare people from getting to this painful stage. Early diagnosis and treatment is the key to living a good quality of life with these conditions!
I ended up in Physical Therapy, thanks to my doctor’s intern, with their specialist in lymphedema who actually trained with experts in Germany. This is notable as Germany is known for its aggressive study, diagnosis and emerging treatments for Lipedema. She immediately performed and taught me manual lymph drainage (MLD) techniques, compression bandage wrapping, and sequential compression via a lympha-press pump. Unfortunately, the lymphedema was also present in my upper arms making it difficult to wear tops with sleeves. At this time we only focused our care on the legs and never got around to dealing with the arms. She said I was the second worst person she had ever treated if that is any indication how bad my condition had progressed!
I took these techniques home and continued to bandage wrap both legs every day before heading off to work. Now I was well over 400 pounds and struggling to travel and walk around work. I brought in an ottoman to keep my legs elevated during the day, but found I could not keep a good posture while working on my computer in this position. So, I suffered with terrible pain all day at work desperately waiting to get home where I could put my legs up for pain and swelling reduction.
Astoundingly, even at this large frame and weight I was still able to reach the floor with my palms and bandage myself from my feet up to my knees on both legs. (Hypermobility is one of our co-morbid conditions due to it being a connective tissue disorder. The Ehlers-Danlos Society (EDS) has updated their diagnostic criteria to include the broader Hypermobile Spectrum Disorders (HSD), for those who show no other signs of EDS but experience hypermobile joint issues, and Hypermobile EDS (hEDS), for those with additional EDS signs and symptoms.)
After a couple of years of applying compression bandaging to my legs the Physical Therapist asked me to try Circaid garments, which would reduce the amount of time bandaging. (Circaid bandages have about a dozen Velcro straps that lace across your legs, which you can adjust throughout the day to maintain compression.) Unfortunately, they did not work for me as my legs are not ideally conical in shape. Odd shaped legs with bulges (aka shelves or saddlebags) do not work well with this technology as the straps tend to slide and bunch up in the leg creases causing pain with possible blood and lymph flow issues. We also tried Farrow wraps, which are slightly better, but produce the same problem. In the end I had to go back to compression bandage wrapping and did this for about twelve years.
Serious Illness
In the 2007-2008 time span I had strep throat at least three times. During my last bout I was given cephalexin and discovered I was allergic to this antibiotic. Without the function of the antibiotics, toxins travelled throughout my system and eventually settled in my legs. Both legs got bright red with burning pain and I was running high temperatures – 104+ degrees Fahrenheit. My doctor gave me the choice of immediate hospitalization or care via home health services. Naturally I took home health care so I could be with my family and help my girls with school. I had medications delivered every couple of days so I could take injections through a PICC line in my left arm. It was very serious and scary illness for all of us as I had never been this sick!
While recovering from this serious bacterial infection, I noticed a hot burning pain on the back of my right leg. A flesh eating bacteria wound had opened up from the inside of my right leg. We went through all sorts of shots and creams and nothing seemed to work. I had one more chance from the Wound Clinic before they wanted to debride, or cut out, the infected parts of the wounded leg. The last ointment we tried worked! It was ugly, very painful and took a long time of oozing before it began to scab. It took nine months to completely heal this sore!
Cellulitis infections are very serious and can be extremely harmful to those of us with Lipedema and Lymphedema!
My Physical Therapist, who also treats these kinds of wounds, said she has had people with open wounds for over a year. They just can’t get them to close, which means their risk of further infection is very high!
A Revelation
In 2013 at nearly 500 pounds I had extreme problems walking, driving and wrapping my legs. My knees kept sliding around or dislocating, which would keep me out of work for a days at a time. (Luckily I could telecommute during these times to try and stay on top of my workload.) The stress of the job and trying to cope with my failing health was too much to bear. In 2014 I was let go from work and ended up on Social Security Disability. The severe osteoarthritis in both my knees, which had been worsening for years, made it next to impossible to walk more than about 30 feet without searing pain. This pain was only mildly mitigated by quarterly cortisone injections in both knees.
A couple months later I decided to take a Weight Management class sponsored by my health provider to find a means to deal with this extreme weight. After eight weeks of dedicated dieting and exercise – only 2-3 pounds loss! My teachers were baffled and suggested I talk with a bariatric surgeon for reduction surgery. I was depressed, angry, frustrated and feeling no one could help me with this life-threatening problem. Where else do you turn – God then Google!
After following a trail of lymphedema posts I came upon some sites talking about Lipedema. Once I read the symptoms, saw the pictures and read people’s stories of life with Lipedema I knew I found my people – my tribe! I hired a Physical Therapist (who was/is a God-send) to work on my legs. She taught me how to effectively wrap my lower legs with compression bandaging and stiffer foam to get better compression results – and it worked! I was able to get 60 inches total off the bottom of my legs. We then ordered some Biacare wraps (now Sigvaris), which I absolutely love, to wrap both lower legs each morning. They are such an easy and effective compression treatment and they do not bunch or slide into the folds between the shelves!
Unfortunately, I have a very large lobule on the back of my left leg, which makes it difficult to move and walk, so that I cannot get my health provider to authorize further Physical Therapy visits. This leaves me to find a means to deal with this on my own. I have now moved from a 4 chamber pump to an 8 chamber pump, which has done a fantastic job reducing my upper legs and breaking up fibrotic tissue. I am also researching water assisted liposuction (WAL) to see if my size and shape would be a fit for this procedure.
For now I have to live with very painful lipomas under my skin from my arms down to my feet. These clusters of Lipedema fat press on my nerves making it extremely painful for people and pets to touch me. I can barely tolerate a blood pressure cuff on my lower arm. I bruise easily. Small bumps into walls or furniture or sometimes just over-stretching my leg will burst a cluster of capillaries giving me large (sometimes unexplained) bruises.
Foldover flaps of skin are painful and a good source of frequent infections, which is why good hygiene is paramount to avoid tears and sores in the skin. At this size my legs frequently have tougher fibrous tissue and masses under the skin, which is why MLD and sequential lymphatic pumps are very important in my daily routine. This helps break up those gelatinous masses that can clog lymphatic and vascular functions, creating further problems down the road.
Oh, did I mention that in 2013 I started going through menopause. This is one of those major changes in life where hormonal levels start fluctuating making a Lipo-Lymphedema situation worse. It’s like throwing fuel on a fire! Looking back I can see this is why my legs got larger and more painful, my osteoarthritis increased in pain and other conditions starting rearing an ugly head. I resorted to getting quarterly cortisone injections in both knees to help lessen the pain and allowing me to walk. You will find out more about how hormonal changes foster these type of changes in another post.
Update 10/20: The backside of my legs have reduced significantly from the picture above and the pressure ulcers are gone. The lobule is much smaller and I hope to have it surgically removed at some point. I’ve lost over 60 inches off the lower legs and the knee overhangs have reduced in size, allowing me greater mobility and general movement. The condition can be reversed, at least to a point. My goal is to work hard to see how much progress I can make towards regaining full mobility and fitting into jeans again! (New picture coming shortly.)
Insult to Injury
As if dealing with Lipo-Lymphedema wasn’t bad enough I was getting sicker with stomach aches, bowel problems, fatigue, fibromyalgia, flushing, increasing inflammation and losing my hair. All my tests came back fairly normal except the gluten allergy test from my Allergist. Bingo – we discovered I have Celiac Disease and had to change my diet to be totally gluten free over night.
I also have classic signs of mast cell activation disease (MCAD) and was put on H1 blockers, which suppress the body’s histamine effect (Zyrtec), and H2 blockers, which suppress gastric acid secretion (Zantac). Unfortunately, the FDA banned Ranitidine and I could not tolerate any of the other H2 blockers. I was also low in vitamin D and have to take daily supplements to keep my levels up. (This is a common problem in those with Lipedema and will be covered under a nutrition section.)
Update 8/20: My mother passed away after a very courageous battle with lung cancer and other complicating medical issues. She moved in with my family in February 2020, just before pandemic protocols went into place, and endured chemo and radiation treatment. My own health declined as I could not regularly pump and wrap my legs and could not stick to my keto eating plan. Two weeks after my mother passed, my divorce was finalized.
Update 12/2020: And the hits keep coming. The Sunday after Thanksgiving I ended up in the ER in excruciating lower left flank pain. A kidney stone, 8mm in size, was stuck in my ureter and needed to be surgically removed. The stone had been lodged for almost 48 hours by the time I got into emergency surgery where they inserted a stent to bypass the stone. I was already in septic shock and had to spend a couple days in the hospital to recover. In December I had the follow-up surgery to break up the stuck stone and three more stones inside the left kidney that were 8mm and 10mm in size!
Update 5/21: I spent a week in the hospital fighting an unknown virus. After discharge the last test result came back showing I had the Epstein Barr Virus – Mono. I was down for almost 12 weeks trying to recover. Did I mention both of my daughters graduated from high school and college plus my oldest got married in this timeframe?! I missed her bridal shower and slithered to the wedding double masked and isolated in the back of the room as I was still contagious.
Update 9/2021: I had an ultrasound in 2019 to check two nodules that have developed on each lobe of my thyroid gland. At that time they were small and benign. A biopsy of the nodule on my left lobe showed that it had increased in size to 3.8cm and was labelled suspicious from the FNA (fine needle aspiration). The doctor ordered a follow-up biopsy to be sent out for molecular scanning, but it had to wait 10 weeks so that I could recover from the Epstein Barr Virus (Mono) and a subsequent cellulitis condition. We did the scan in July and in August the results came back as high risk of malignancy (90%+). An ultrasound in August showed the nodule on the right lobe had grown and now had very similar characteristics of the larger left nodule. Two additional nodes had appeared making that four nodules now. After much consultation with my Endocrinologist and Head and Neck Surgeon, I had a total thyroidectomy in October to remove the entire gland and any cancer! (I was scheduled for surgery on 9/3 but the hospital postponed all non-life threatening surgeries for 5-6 weeks due to the surge in hospitalized COVID patients.) I suffered anaphylaxis during recovery and had to remain hospitalized. Everything healed nicely, but it turns out I had papillary cancer in one node. Now I need to take thyroid hormones medication for the rest of my life.
I also need to modify my diet to be low in oxalates as I have had five bouts of kidney stones in the past three years. I have a family history of stones, but it seems so unfair to keep heaping on the conditions! I truly couldn’t make this up if I tried…
The Takeaway
Part of the blame in allowing my condition to progress all the way to Stage 4: Lipo-Lymphedema lies with the numerous physicians who could not recognize the disease (which is not entirely their fault due to lack of medical training in this area) and therefore could not direct me to timely help. The other part of the blame is mine. I was so busy advancing my career, growing a family and being sole support for a while that I did not take the time to stay on top of this evolving strange disease nor complain to my doctor adequately. Do not wait until you absolutely fall apart to take an active role in your health even if the “experts” have no answers. Google, Bing, Yahoo, Facebook or however you search for information and be proactive, especially with this progressive disease, and advocate for your right to definitive health care!
If you suspect Lipedema or Lymphedema get help today! Do not wait!
To your improved health! (More pics to come…)
Esther
About The Author
Hi Esther,
I am so appreciative of all the research and time you’ve invested in creating your site. I’m 71 and have lipedema. Based on pictures I compare myself to, I am either late Stage 1 or Stage 2. I am grateful and consider myself lucky that my disease has not progressed further. While this stage may seem like nothing to the challenges of women with Stages III or IV, it still has presented me with a life of mysterious symptoms, limitations and feelings of self loathing.
I began learning about lipedema about four months ago. I am so grateful for your open discussion of the challenges you face, the treatment and self care that have helped you and your wonderful resources. They are so helpful for me.
I have not been diagnosed or treated professionally but have begun incorporating self care techniques. I will be seeing my doctor this month and will broach the subject with her. I’m curious to learn of her response. I looked at what changes I could make on my own. As the list of self care and treatment is overwhelming, I decided I would tackle things one at a time to make them a natural part of my life. I began the ketogenic diet in January and have lost about 20 lbs since then. I have been losing weight prior to this but keto has been a major change. It took a month to physically adapt. I felt horrible for that time. After that miserable first month most days I began to have more physical energy and mental clarity. I do have bad days but I tell myself my body is getting better every day. After I began to feel secure in the diet change I started to incorporate exercise. I am terribly deconditioned so I’ve been taking it very slow. I think persistence and consistency are what matters in terms of long term changes. I can now walk around the block without needing a half hour of recovery time. I have isolated myself most of my life. I have terrible fatigue so it’s hard to keep up with others and I’ve felt ashamed of my body and my lack of energy. Now that I understand what’s going on and no longer blame myself for my limitations I’m feeling more comfortable with getting help from others. I found an MLD therapist and had my first appointment. It was wonderful and I felt lighter and more relaxed after the session. I’ll be returning. As a result, I’ve been doing MLD on my arms, which have the most congestion. I can feel that my armpits are less congested and my lymph nodes are less swollen and tender.
I get satisfaction from knowing that I can make positive changes at my pace and feel and see differences that are improving the quality of my life. I wasn’t planning on writing so much, but I hope that someone can see their challenges in mine and give them hope to begin make positive changes in their lives.
Esther, thank you again for your inspiring story and for all your wonderful resources. You are a beacon shedding light and hope to others.
Best,
Mary
Thank you for the kind words, Mary! You are doing an AWESOME job on many levels and approaching self care correctly!! You are educating yourself and in turn your medical staff and other people you encounter with our condition. Starting slow and making sustainable changes is totally the right approach. Understanding what your doing and why your doing it will enhance your awareness and approach to physical, emotional, and social care.
There are similar traits and symptoms we all share with this condition. However, there are additional factors that create challenges for people in the later stages, such as saddle bags/shelves, lymphedema, lobules and mobility issues. The impacts of this condition at ANY stage cannot be understated and vary from person to person. There could also be co-occurring conditions that exacerbate our Lipedema making pain and treatment more complicated. (There will be a new post shortly on this topic.)
I applaud you for implementing all the correct protocols in treating and managing your condition. You, too, are an inspiration to those around you, demonstrating we can improve our quality of life despite this condition!! Keep up all those positive changes!!
Esther
Thank you for sharing your story, it had motivated me to start aggressively searching for medical help. I am I believe stage 2. The last week I have had tremendous leg pain more than I previously had. I have worn a girdle since I was 11 because my hips were huge I wasn’t allowed to wear shorts by 12 because of my massive calves and the bruises.
Hi Heather!
I am glad you seeking assistance in diagnosing and treating your Lipedema! The earlier you can intervene in care the better your prognosis and quality of life will be. Leg pain can be a sign the Lipedema fat cells are expanding and pressing against muscles, blood and lymph vessels and skin areas. Many women find wearing compression garments helpful in not only controlling the expansion of the Lipedema fat cells, but in reduction of overall leg pain. What we eat as well as vitamin and mineral deficiencies can also cause pain in our joints, muscles and abdomen. (See my page on Inflammation and Keto.)
It sounds like wearing a girdle was your first attempt at trying to compress the abnormal Lipedema fat in the hips even though you did not know it was Lipedema at the time. Please wear what you find comfortable and supportive of this condition. Be kind to very knowledgeable women who can answer your questions and provide support in a wide area of issues related to living with Lipedema.
Wishing you much success on your health journey!!
Esther
Hi Esther, thank you for your sharing above, I relate to alot of your traumas and experiences. I was born with primary lipodema, undiagnosed, I have full body, full arms and full legs, torso, back, hips, thighs, scalp, I have over 24 stone of lymphatic fluid stored all over my entire body, except toes and fingers and face. I later got secondary lymphedema after suffering with acute pancreatitis, a biliary duct was blocked by a gall stone, I now have lipo-lymphedema of the entire body, and other complex conditions, chronic kidney disease, insulin resistent, first stage congestive heart failure, hypertension, hypothalamus, arthritis, chronic inflammation and pain, food allergies, sinusitis, and many other conditions, all complicating each other, anemia since 18 years, type of anemia never identified, pelvic inflammatory disease, metabolic X, now peri menopausal, with pelvic bleeds.hyperplasia? I am on a shed load of medication daily, pain relief currently is slow release zomorph, paracetamol, I need to find an alternative medication from opiates, as these cause torso swelling, I’m interested in what you and the readers are currently taking,. I was diagnosed really late, bandaging has been hit and miss, as no services to provide regular support, the wraps do not fit my hips, torso or upper legs, I am mostly immobile, although I do try to move a few steps every few hours, I am totally housebound and bedbound, I have started to sit on side of my air flow mattress for bursts each day, do chair bound exercise where I can, in April I eliminated all process food and sugar from my eating, I had several private food intolerant tests done, and eliminated the foods suggested, I have started a daily vitamin regime, and for the first time in 56 yrs I am losing some inches across my body. I have had lymph reflexology which helped unblock lymph nodes and move fluids, but this has been enforced stop since lock downs, my husband tries to do gentle leg stroking and feet mod, we do have movement and reduced swelling at time of doing so believe its affective. My GP admits he is out of his depth as are district nurses, lymph bandaging nurses won’t attend as takes three hours to do both legs, although had good fluid removal. So I am left, to research and find the answers myself and with my husbands help and amazing support. I am on many FB forums, and support sites charity sites, I read copious medical research papers, I have to keep on top of moisture blisters in folds of skin, I have many intolerances so need pH 5. Get regular thrush, uti’s, on anyphalaxis antibiotics to prevent cellulitis out breaks. I have not found a pump big enough to do my legs and would love to know the machine and company you use and how often you do the pumping. I do my best to stay mindful and positive, to stop stress cortisol building up, its a fine balancing act, as you appreciate. I am doing daily breathing, now breathing through my nose and not my mouth, so improving here. My weight is 38 stone, of course some will be obesity over the years of limited movement, but I weighed around 9 -9.7st normally. Although 11per cent of population have lipodema, And its still not taught in medical schools in the Uk and Wales. I would love to share posts with you, and invite you to message me personally via email. As we may be able to encourage and support each other. Thank you fir taking the time to read my post. And healing energy to all readers.
Bless you, Cathy! I can understand much of your struggles and know you are not alone! There are many of us with advanced Lipedema, Lymphedema, obesity and comorbid conditions that make managing them a full-time job. And yes, unfortunately the medical community is still far behind us in diagnosing, treating and providing the level of support we need to have a good quality of life. I have found lots of support and information through key support groups and medical journals on how to care for myself. I am glad you are pursuing the same avenues, too!
I am excited to hear you are losing inches/centimeters off your body. Significantly reducing sugars, processed foods and carbs in general will help with weight loss and reduction in inflammation and pain. This reduction in inflammation and pain should help you ween off the opiates and perhaps move to over the counter pain meds. Changing our food choices can actually promote healing in all parts of our bodies, too. Food Medicine ! I stopped knee cortisone injections three years ago when I changed my diet as the pain became very tolerable. Have you found changing your food choices has helped your inflammation, swelling and pain?
I use a Bio Compression 3008-DL pump with custom sleeves for one hour per day. I may need to increase that to twice a day. The eight chamber pump has been very beneficial in maintaining and reducing the lymphedema in my legs. However, I am now looking at the LymphaPress Pod option to see if it will be a better fit for a larger frame and considerable lymphedema from the waist down to the feet. I should know more about pump options in a week when I meet with a new physical therapist and provide more insight for you (Please message me your email and we can talk offline.)
I am glad to hear you are trying to move more too. You can certainly do leg exercises while in bed. Moving your feet repeatedly front to back and side to side will move the muscles in your legs, which stimulates the lymph vessels to move fluid out of your legs. Also try lifting one leg at a time and see how long you can hold it, even if you can’t lift it very much. Anything that moves the muscles will help tone and move fluid. Do what you can safely and gradually work yourself up to doing just a bit more each time as your pain and abilities allow. I also use 2-3 pound hand weights to help tone and strengthen my arm muscles.
I also take a daily regimen of supplements for deficiencies, allergies (MCAS) and immunity boosting. They have helped keep illnesses at bay by increasing my immune response. They also help with pain, muscle cramping and improving gut health. What supplements are you taking?
It’s great you have a supportive husband that is willing to do what is necessary to help you manage your condition! Hopefully you have also found great support in the online forums. There are some very knowledgeable and supportive people in these groups who can definitely answer your questions and provide emotional support when you need it. You can also attend classes and webinars with leading medical professionals, therapists and specialists who support other facets Lipedema care. Here are two good resources: https://lipedemaproject.org/ and https://lipedema-simplified.org/.
Healing energies and success on your health journey!
Esther
Hey Esther! I am 36, currently pregnant, have seen signs of Lipedema since high school, but my legs entered stage 2 about a decade ago when I first got pregnant. I had a miscarriage in the first trimester, but that was enough to set my legs up with big calves and ankles cuffs. At that point I knew about the Hashimoto’s thyroiditis and Raynaud’s phenomenon only. It wasn’t until 2 years ago that I was diagnosed with Celiac and I have often wondered what would have happened if I had been Gluten free from earlier on. When I went gluten free, symptoms I had since 5 went away. I’m thankful and hopeful.
Thank you for sharing your story – I’m sorry it takes so long in the states to be diagnosed.
Congratulations, Autumn, on your pregnancy! Unfortunately, many women see their Lipedema rapidly manifest during pregnancies as with puberty and menopause, all major hormonal shifts for a woman. I can so relate to your struggles with all these compounding co-morbidities. They just add to the challenges of living with Lipedema. You know, I too wish I had known about the Celiac (an autoimmune disease) back when I was a teenager. I think both of us would have been in much better shape to handle the Lipedema if our gut health would have had a chance to heal and not been in near-constant pain and inflammation! I am also currently being evaluated for Hashimoto’s and Raynaud’s, which are another two common co-morbidities. Wow, it sounds like we could be related with our similar health status! I can certainly empathize with you!
I believe the best we can do is continue to improve our own health the best we can and keep educating and advocating for others. Hopefully, others can learn to identify the Lipedema (and any co-morbidities) earlier enough to manage it while keeping a good quality of life. And yes, I am hoping we can elevate this learning and diagnosis fasting here in the USA too!
Wishing you much success in managing your conditions and congratulations again on the impending arrival of your precious little one!!
Hi Ester,
Thank you for sharing your story. I have a friend that has Lipo-Lymphedema. She was told she had lymphedema years ago (she never heard of lipedema), but after reading your story and doing more research on line, I believe she was miss diagnosed and she has not been keeping up with the research on line. I feel so sorry for people like you and her and am trying to learn everything I can to help educate her. I know it is a very depressing disease, especially when there is no medical doctor close by to help with the problems she is having. She lives in Western North Carolina, she can no longer walk and must have someone help her into the transport chair—into the bathroom—into the car—she needs assistance every where she goes. She is an invalid. She no longer sleeps in the hospital bed, she prefers the recliner/lift chair. She lives in that chair. She is very depressed and has had the disease for over 15+ years and is 68 years old. I don’t know how much she weighs, but after looking at the picture of your legs in this story, I would say she is close to your weight. She is definitely at stage 4 lipedema and may have lymphedema as well. Nobody diagnosed her with lipedema, but after reading and looking at the pictures—that’s what she has. For the last 2-3 months she has had her lower legs wrapped and they got much smaller, but her upper legs have gotten much larger with pockets of fluid hanging over her knees. It seemed to just push the fluid up her leg and she complained that the wraps were very painful. I told her that “YouTube” had some good sites that she should watch, but I don’t believe she has done so. When she told me she had lymphedema I bought her a book that was published in July 2018 all about lymphedema, after a month I asked her if she read the book and she said she started it but stopped reading it because it was too depressing.
Her story, like yours is complex, but she doesn’t have the desire to learn more about the disease like you have and stopped wrapping her legs for years, which caused the disease to get to the stage it is at.
Thank you for helping people like me to understand the disease so I can help my friend. God Bless You.
Hi Toni,
God bless you for being such a supportive and caring friend! It is fantastic doing research to better educate yourself and your friend on this debilitating disease. She definitely needs to know she is NOT alone in managing this condition. There is a network of people of all ages and stages that can help her fight the physical, emotional, social and spiritual sides of this disease. There are indeed Lipedema and Lymphedema folks in North Carolina that can help her. Check out the Lipedema Project’s list of medical folks – https://lipedemaproject.org/lipedema-lipoedema-lipodem-provider-directory/ . We also have several fabulous Facebook support groups with women from all a round the world who ask great questions and are a wealth of knowledge on the various aspects of these conditions. One such group is Lipoedema Warriors (European spelling) – https://www.facebook.com/groups/536486686555453/?ref=bookmarks .
Compression and manual lymph drainage are key elements to managing the condition. They can provide great pain and pressure relief and will eventually yield great results! Eating habits are another key element. Eliminating sugars and processed foods will significantly reduce inflammation and pain, especially for those of us with Lipo-Lymphedema. Please see if you can have your friend read through my site or drop me a line directly. I would love to see if I can help her in some way! You are NEVER too old or too large to get started on reversing the effects of this disease!
God bless you for educating yourself and helping your friend!
Dear Esther,
Thank you for bringing this terrible illness out into the open !
I feel for you ! I definitely agree that the doctors today are not
taught enough about the so called… rare diseases ! A person
must research for themselves to get an answer, and even then,
trying to convince your doctor that SOMETHING IS SERIOUSLY
WRONG… can be impossible. They will always blame it on diet
and the amount of exercise a person gets. This is sooooo WRONG !
Don’t give up !
Hi Michelle,
Thank you for the kind words! Unfortunately, with more than 10% of the population being affected by this disease, it is not a rare disease…only rarely diagnosed. Fat diseases and lymphatic disorders are not subjects covered in depth in medical school, so many doctors are having to scramble to do research in order to understand how to help us.
The internet has been a wonderful tool to find critical information and to share with others the effects of this disease. So many strong, knowledgeable women have been able to help others understand the constructs of this disease and how to manage it. It is unfortunate, but we will also need to help the medical community “catch up” on what many of us already know about how this disease manifests in our lives, from impacts on daily activities to the emotional roller coaster of societal responses to the ongoing care required due to possible immobility. Only then will they realize caloric restriction and exercise are not the route to managing this disease. And this disease is NOT OUR FAULT so stop blaming the victim!
I am here for the long haul and will have some new content very soon. Stay strong and keep educating and advocating for better treatment my friend!
Esther