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    Community Voices

    Discontinued Tampons

    <p>Discontinued Tampons</p>

    Coping With the Effects of Ehlers-Danlos Syndrome on the Whole Body

    Seeing a bird perched perilously upon a high wire seems reminiscent of living with chronic illness, which is a human health condition or disease that is persistent or otherwise long-lasting in its effects. I’ve thought about what life can be like for the chronic illness community. Some days, chronic illness can seem to take up the entirety of a room, and accomplishing anything outside of the difficulties of the illness may feel impossible. Other days, you may be able to hold chronic illness in your hand, place it in your pocket, and carry on as you try to create enough good memories to get you through to the next inevitable hard day. Ehlers-Danlos syndrome (EDS) is a rarely diagnosed condition that affects every system in the body. It mismanages the production of collagen, the protein “glue” of the body, and it weakens every part that is involved. Skin, joints, ligaments, and hollow organs are directly affected — which leaves the rest of the body with a cascade of struggles. There are 13 different types of EDS, and more are added as they are discovered. Some are more severe in their presentation than others, and they affect each patient differently. This makes it difficult to have a universal treatment plan for all of the symptoms that may occur. Currently, there is no cure for Ehlers-Danlos syndrome, so mediating a body’s response to the collagen defects incrementally is typically the best way to have the highest quality of life. Also, responding to each patient’s individual difficulties in their own way can help them feel validated and respond better to treatments that can truly help. One major hurdle many of us with EDS often have to deal with is not being heard and treated properly by our doctors. Generally, doctors are not trained to deal with conditions that can affect every part of the body. Medicine is usually more of a “reactive” profession — treating what is obvious and emergent — than a proactive trade in which symptoms are treated before they get out of hand. This system can be difficult to navigate as a chronically ill patient with multiple needs. We are sometimes pushed through appointments without having the time to dig to the root of each symptom completely. The areas in which we live, the insurance that we have (or don’t have), and the amount of money we are able to spend on treatments and out-of-pocket costs are big factors in the amount of care we are able to obtain. This process can leave us feeling lost, embittered, and alone when we are not able to stay on top of our chronic illnesses. It can also make us feel ecstatic, hopeful, and accepted when we are simply heard and a doctor is willing to try the treatment plans we have researched so diligently. There are often no easy answers for this, and no amount of being more assertive about what our needs are can necessarily help. It’s a delicate balance in a system that is not built for treating chronic illness. I’ve had multiple doctors placate me to not look for further diagnoses, stating that “One ‘zebra’ found is enough” or “We like to keep everything in one basket,” though doctors don’t often realize that with EDS, all diagnoses are the same “zebra” and in the same basket. The more identifiable traits that can be addressed and the more manageable our entire syndrome can be, the higher the quality of life and the greater longevity we’ll tend to have. Another major hurdle we often deal with is having bodies that have “minds of their own” and will often not cooperate when we want them to be active. Many types of EDS are multi-systemic conditions that have many comorbidities, which are other illnesses or conditions that are caused by Ehlers-Danlos syndrome. EDS is also a progressive illness, which means it can continually get more severe as we age. When we have flares that exacerbate the symptoms in one body system, it can have a ripple effect to other systems and be so overwhelming, painful, and untreatable that we cannot leave our homes. These ripples can last for days, months, or even years without proper treatments, guidelines, and cures. Living with EDS can be a never-ending cycle when there are so many factors that lead to delicate imbalances in such a difficult-to-manage system. We must often consider everything we consume, how we sleep or spend our time, where the bathrooms are at every location, whether we’ve been keeping up with a hygiene routine, how accessible the areas we wish to visit are, and the effects we may have to deal with after a social excursion of any kind. At this time last year, I was barely able to leave my home for appointments — and I couldn’t do much else. My health had gotten to the point of being bigger than I could handle, and I couldn’t stabilize it. For the sake of learning, growing, and teaching, I’ll share some details in this latest physical hurdle. 1. I feel exhausted to the point of often not being able to drive myself. Even walking the dogs in a zombie-like state was a chore I could hardly endure. Running an errand? Never. I do have blood sugar symptoms too, which contribute to exhaustion, but fortunately, there are current studies regarding EDS and diabetes. Many rare diseases are on the verge of breakthroughs of varying degrees all over the nation, but for now, I struggle with being tired. 2. Everything I eat goes through me. I can no longer determine which foods I was sensitive to even though I don’t have many foods I can eat. CT scans revealed stool retention even after a 24 hour cleanse, so I was “backed up.” Everything getting through is called “overflow,” which generally consists of collected water. I was incontinent because of this — sleeping on pads and towels, only leaving the house when necessary, and using pads, crossing my fingers, and hoping for the best. This is a rarely talked-about part of health decline and can keep a person at home all on its own. I knew the next steps could be dire, and I wasn’t looking forward to those possibilities. 3. My thyroid wasn’t always producing as much of its hormone as it should be. This is no surprise since I only have half of my thyroid. Just getting it within “healthy range” was not enough for me — I had to fight to get it down to a lower number based on symptom improvement. This took several months and appeals to the doctor, and it made a positive difference, but did not clear up all of my health struggles. I’m used to not having all health symptoms worked out, but the more symptoms resolved, the better. 4. My muscle fatigue and weakness has increased. This is probably because of all of my exacerbated symptoms. My legs are the weakest, but I do have generalized muscle weakness due to neurological issues resulting from hypermobile Ehlers-Danlos syndrome and tethered cord . The earlier EDS and its comorbidities are diagnosed and treated, the better. 5. I’m always in pain everywhere. I believe the increase in my pain is due to exacerbated symptoms and other conditions, like lipedema and Sjogren’s syndrome, that I’m still trying to get diagnosed. This is yet another reason why diagnoses and treatments are so important. 6. My skin and liver are struggling right now. I’ve always had skin that flares after a shower. Lotion helps, and treating mast cell symptoms does so even more, but splotchy, red, dotty, tiny, itchy patches everywhere? This is new. Also, we found a spot on my liver, and we have to keep an eye on it. I had one “good” organ left! Ha! 7. I visit many doctors. I even finally have a new internist, but they just seem to be a cog in the wheel of never-ending tests, procedures, and difficulties. I have recently received some help in much better ways than I have before, and now, I’m starting to catch up on treating a few of my chronic symptoms. I feel blessed that I still have some life left in me and am not completely relegated to my house at all times, but I still have to be vigilant about “overdoing it.” I sometimes feel like I have a cloud of worry hanging over my head as I wonder when my life-changing symptoms will surprise me next, even as I try to live my life to its fullest and stay grateful for what I have. When you see me smiling, it is genuine. My smile may mask my difficulties, but I’ve truly found happiness in focusing on the positives. Having a silly husband who naturally evokes laughter helps too. Here are some treatments that are currently helping and making a positive change for the better: 1. I get saline IV infusions. Navigating the medical system to receive this much-needed care was difficult, but the effort was worth it. I now access my own port weekly and administer my own fluids. I have dysautonomia (My autonomic nervous system does not regulate properly), I have hypovolemia (I have low amounts of bodily fluids), and I have a lot of neurological damage that keeps my gastrointestinal (GI) system from working correctly. This treatment has brought some of my body back to life. 2. I take supplements. Some of my supplements help me rebalance electrolytes, while others keep my joints and tracts in working order. Potassium, magnesium, salt, vitamin D3, B12, multivitamin, even cranberry and glucosamine chondroitin all play roles in helping all of my systems work as well as they can. 3. I wear braces. It’s best for me to stabilize my joints from the ground up. I have shoe orthotics to keep my arches in place and ankle, knee, and joint braces to keep everything as stable as possible — which helps lower my pain levels and increase my leg stamina. 4. I use adaptive devices. I use a wheeled walker for any distance outside of my home and a power wheelchair for longer distances that I can’t navigate on my own. My legs gradually lose power as they are used. This is common in EDS, but society can be difficult to navigate when your ability level isn’t constant. Most days I don’t notice reactions, other days I can’t help but notice. Hopefully, someday, tolerance and objectivity will rule. 5. I eat to meet my body’s needs. I don’t eat meat or gluten, and I watch my histamine intake too. With so many medical conditions constantly vying for my attention, I try to keep all of my systems as happy and compliant as I can. I cannot tolerate statins, and after my stroke, eliminating meat was the best solution for keeping the right cholesterol levels and a healthy heart rate and blood pressure. I keep my protein levels up with plant proteins. My body doesn’t respond well to gluten, so it’s not an option. Everything in my body works more easily when my GI system is engaged and functioning as best as it can. When the medical community and our physical bodies are determined to hinder our best efforts, I am thankful that the internet can provide some answers and relief. It helps me find other doctors in my area and locate insurance providers through the help of online support groups. The experiences and connections that others with chronic illness share can be so helpful in finding any small measure of positive reinforcement. A friend in one group stated that people with chronic illness often get so used to being in “survival mode” that we may tend to have a different quality of life baseline than most other people have. That sure hit home. We also may “mask” well to try to fit in, but masking our symptoms can be invisible to others and may twist our perceptions of ourselves. If you’ve been surprised by anything I’ve mentioned thus far and wonder why you don’t know these things are happening, keep in mind that “survival mode” is a place in life that may make it difficult to reach out or talk about what we may be going through. Chronic illness survival calls for extra grace, mercy, and leniency in not taking cancellations or long pauses personally. In fact, reaching out can help us have support systems that can help us move forward. It can also feel daunting to breach the chasm that forms while we’re busily trying to keep our bodies going or are figuring out how to navigate our conditions in public. Consider that some of us with chronic illness may feel like a “burden,” which can take a lot of work to overcome. In fact, it took me two weeks to write this article. It is daunting to put myself out there and be vulnerable about such life-altering symptoms, but hopefully, the help it can potentially bring others will be worth it. Trying to receive the basic care needed to enhance wellbeing with chronic illness can feel like a two-step shuffle. The possibilities of something going “wrong” can seem endless, but I urge and encourage anyone struggling with lack of proper care and diagnoses to strive to move forward regardless of the hurdles. While it can feel lonely and daunting along the path of living with chronic illness, you are not alone. Together, just like a herd of zebras, we are a dazzle, and the more we all learn from our conditions independently, the more we can share and look forward to as a group. We can be a flock of birds on a wire, perched perilously but proudly.

    Community Voices

    “Sometimes walls are there so we can lean on them and rest.”

    <p>“Sometimes walls are there so we can lean on them and rest.”</p>
    1 person is talking about this
    Community Voices

    First post

    I’m 53. For the last 41 years I’ve been dismissed, undiagnosed, misdiagnosed, and now diagnosed but the wrong treatments have poisoned my body creating more issues that my functional medicine doctor still cannot figure out. 13 years ago I was diagnosed with psoriatic arthritis and fibromyalgia. I did monthly remicade infusions for ten years. I had maxed out my dose and intervals but it wasn’t helping as much as I thought it should so my physiatrist prescribed prednisone which was my personal crack! Nothing made me feel as good as steroids. And I was reminded of that every time I went off. I decided I’d rather have a life and deal with any side effects later. I started gaining weight, which was expected, and developing inflammation in weird places that hurt to touch more than normal. All my doctors said it was the prednisone and would go away when I went off it. So I did but it didn’t go away and my body was looking more and more out of proportion. The hard painful fibrous lumps around my mid section kept me from sleeping. The lumps on the inside of my knees hitting each other as I walked created gait issues and pain in my hips. My rheumatologist insisted it was fibro. I finally found answers with the help of Google. Of course there are no doctors in my state that even know about this connective tissue disease so I traveled out of state and out of network and got a confirmed diagnosis of lipedema and have since started the only treatment known to treat this, staged surgery to remove the diseased tissue. I can finally sleep! The lump across my low back that made it feel like I was lying on a log was gone. Now I’m dealing with all the residuals from 41 years of unnecessary meds. I’ve completely given up on traditional medicine and I’m putting all my eggs, even though they’ve long since dried up (teehee) in the one basket of a functional medicine doctor. I’m trying to have faith that she can figure the rest out. I just don’t want to wait another 41 years. Thanks for listening.

    3 people are talking about this
    Community Voices

    Chasing doctors is often worse than the pain

    I am sure I am not the only one who feels this way. After every diagnosis I've gotten I've felt like, yes I feel like I've found answers. My body then deteriorates more and in new fun ways so it's back at it. Of course, none of these things are obvious to look at me so you have to go convincing people you actually have more things wrong with you. I am recently back on the "please diagnose me with what's actually wrong with me and help me" train and I was really only off of it for a couple of months. I often feel like saying, "Hi, person living in my own body here. Maybe you could listen to me?" With the Covid shutdowns, it's been almost impossible to get an appointment to even be able to say that to anyone. I completely understand the priorities and I don't want to be selfish but the pain is truly awful. #hypermobilityspectrumdisorders #PelvicCongestionSyndrome #Lipedema #BackPain #ChronicIllness #BipolarDisorder #Anxiety

    6 people are talking about this
    Community Voices

    Where to start? Intro! #breathedeep #jessywithwhy


    Complex PTSD

    *Physical disabilities
    *Immune System compromised +

    Autistic, Complex PTSD, Hashimotos, Fibro, Extreme physical dmg & pain due to pedestrian vs car accident as a 12 y/o child; fallout of 30+ years lacking care of self. Extremely empathetic, hypersensitive & aware while being obtusely unaware at the same time.

    Gleaned lessons of many lifetimes, my own and culminated from those around me that I hold extreme love and appreciation for; no matter the role or the end result of things that have happened or occurred. I have wishes but I hold no regrets.
    I hold no malice though I do hold anger. Anger that I am actively trying to work through, in a healthy way, for the first time in my life.
    My breath - your breath - is *everything*. It's your complete control. I know. I know. That probably sounds just a touch hoaky - and if it's doesn't, that's fucking AWESOME! Cos it means you might just be one of my Kindred. What are my Kindred? You ask? Well, I'll explain, in time; but first, we have an AMAZING puzzling maze to get through…
    Welcome to Jessy with Why.

    Ps, I don't have paper degrees. My education is most all self/networking/people-watching/observation/from MY OWN experience, learned thinking and thoughts. None of which, I'm *certain* are original. I am a collector. I collect information AND, I collect people; for reason & purpose. Come to find out, I have for many many years now, I just -never- knew the reason WHY.

    I'm coming closer to figuring THAT out too - and I'm excited to share it with you. Share MY journey and help YOUR help in getting there; even if you don't know you need it as 'badly' as it may look like I need to. Why would you do THAT? Do you ask? Well, the end reason being, (sorry, it's hard for idle chit chat so I try to get straight to the point, with as much jam-packed information knowledge -that's admittedly often side-tracked looking, but *IS* linked- as I'm able to shove in there at the same time, I swear!) because, with your helping me out, it AUTOMATICALLY helps YOU out. That's a win-win. Who DOESN'T like a win-win? Especially when one doesn't have a cost? Well, ok, I take that back. It's a lie. There IS a cost. The cost is something that's actually worth a LOT more than money though. Do you know what it is? Do you know what I'm going to ask for? I'm going to ask you for your TIME. Your time and MAYBE, if I'm as blessed as I believe that I am; if there IS truly, a reason that I have lived through the things that I've lived through, then that means that it might just cost you some of your energy, too…

    My base belief, I think, though it might change, it often has, is that controlling your breath can control your pain; with the potential of removing it & letting it go.

    Let's talk more - shall we?

    💜🦚🐲 Jessy with Why
    (purple heart icon, peacock icon, dragon icon)

    (To be continued…)
    #HashimotosThyroiditis #FibromyalgiaDiagnosis   #Lipedema  #CPTSD   #Autistic #dissociativedisorders

    2 people are talking about this
    Community Voices

    can I ask for another medication?

    hello everybody! it's my first time here. I've got multiple conditions, one of them being immuno deficiency, another one autism, another one a condition that causes troubles with fat metabolism each time I experience a hormonal change and the last but not least - for the matter of today - being PTSD.

    I was getting so much better with my symptoms that my previous psychologist considered my therapy was over. than successive stressful events occurred : I've got severely anemic (panic attacks began here), got pregnant, lost the child (at eighths week), couldn't lose the 15kg took in the matter of these eight weeks, got a diagnosis of lipedema, moved from my flat to another one in kind of an emergency, than my partner's dad died and here we are.

    my PTSD symptoms have for the most part completely disappeared - and that's pretty cool ain't it? - but the sort-of-panic-attacks and the intrusive thoughts that settled with anemia (a year and a half after the initial trauma) never disappeared.

    I asked my psychiatrist for a medication because it exhausts me. Though he says my symptoms are very mild, he agreed and prescribed me some SSRIs. so here's the problem : I'm frightened of the side effects - particularly the possibility of becoming aggressive and the weight gain. I'm afraid it'll trigger my lipedema - to the point that I can't make myself take them.

    I want to call him on Monday to explain and see if some anthistaminics or betablockers would do, but if he disagrees, I really don't know what to do.

    What would you think of it?

    2 people are talking about this
    Community Voices

    My concrete legs #Lipedema

    I feel like my legs are heavy as concrete. This disease is going to take my mobility before I can even get a dr to give me a formal diagnosis. Lipedema is a rare disease, not because it’s rare’s more about Dr.’s not knowing what it is, so patients aren’t being diagnosed. I have had this disease all my life, but last year was the first time I’ve ever heard the term lipedema. My sister saw it on a website, looked it up then told me “I think I know what you have!” I have gone to several doctors since and have not been given the diagnosis as of yet. How do I know I have this disease? It’s visual, there are no blood tests, yet. I look like the poster child for this disease. I am struggling with the fact that I go to doctors and they just see an obese person they don’t see the young overweight girl that I was before this disease hit me like a Mac truck. I used to walk 3 miles 4 days a week and go to the gym and lift weights 3 days a week........I have been struggling with an unknown disease for the past 4 years going to doctors, begging in tears for help and understanding, only to be told I need to lose weight. If they only knew they were giving me a nearly impossible task. 4 years ago I had no walking issues I could nearly I hobble, walking, and standing cause me pain. I use a walker or a cane wherever I go. I’m hoping to get help before this disease puts me in a wheelchair. Until then I try to maintain my pain with a keto diet, intermittent fasting, a supplement protocol by Dr Karen Herbst I found online, and using a vibration plate. Ultimately the only way to remove the lipedema fat from my legs, to gain back my mobility......I require liposuction.......that is The only way to remove the fat.

    6 people are talking about this
    Community Voices

    Health, Not Skinniness, Must Be Our Goal

    Societal expectations on weight are not something I can afford to give much consideration.  I have three “fat disorders”. If you are not familiar with fat disorders, let me give you the basics: One is Dercum’s Disease, which is very rare and out of nowhere put piles of lipomas and 60 lbs. of non calorie based fat on me in the 2000’s. The other two, #Lipedema and #Lymphedema, looking back I know that I had them growing up. We didn’t know what it was called but I always had one leg fatter than the other and was always pudgy with out of portion fat arms, legs and a huge hips.  A veteran dieter by the end of third grade. Typical dieting had no impact. If I had known that, I would have been spared two years as a child eating nothing but tuna fish sandwiches. I grew up always sick because of lipedema and lymphedema.  I struggled to know as a girl that my value and beauty couldn’t be based on societal expectations.

    I know many of us who have had any of these conditions, because of the ignorance of the medical profession and general public, have suffered misplaced blame for what the world sees. Since learning from researchers what my misshaped, painful swollen body really is from, I have gone through a myriad of emotions. 1) Relief that it wasn’t a character flaw that I was fat. 2) Anger that for decades doctors who I trusted, knew nothing about fat disorders. They didn’t treat me with respect.  3) Gladness that I now knew what it all was and could learn to work and live with it.

    The best day was years later when I could just accept my health circumstances and focus on what I could control.  I started to notice I had lost the desire to eat animal products. They slid off my list menu of menu options one by one.  Around the same time, I got my lab work done and my cholesterol was 300 with an LDL of 184. My blood pressure was high. With a family history of heart problems, my cardiologist put me on medication. There was far more I could do for these issues than I could do for the fat disorders.

    I watched documentaries such as Forks Over Knives, read some books and pursued health through 100% low fat and glycemic plant-based eating. I have since eaten beans,whole grains, legumes, greens, root and cruciferous veggies. I really enjoy fruit too.  Many in the fats disorder community are riding the KETO diet wave, and to be honest I use to do the same, but it made my cholesterol numbers ridiculous. So I listened to what my body was telling me. I took my eating to the appropriate direction.

    Several weeks later, my LDL had dropped from 184 to 79! My blood pressure returned to normal. My blood sugar was greatly reduced.  I also noticed that while this sort of eating didn’t cure me of the 3 fat disorders, it did greatly reduce the inflammation of my body. Between March 29, 2018 and June 3rd, 2018 besides dropping my LDL 57%, and other positive outcomes, I lost 34 pounds!

    I looked at full body photos of me from before and after the weight loss. Understanding where each pound came from as I saw the swollen face and large hips in both photos, I felt pride. Never before had I felt I looked acceptable because I had always been ashamed of the realization that the world could see what I saw in the photos.  This time was different. There I was at two different degrees of fat disorder pudginess and I noticed that I looked healthier now. It was an accomplishment especially under my circumstances to lose such weight. Someone on the street wouldn’t know that, but who cares? I know!

    On Facebook I shared the two full body photos of myself to show the before and after. I did so with no reservation. Yay for me! I’m healthier and oh by the way, I look smaller! I was stylish when heavier and styling as someone lighter. I’m the same person in both photos.

    I’m taking care of the rest of my body beyond the fat disorders and it’s greatly adding to my quality of life. At the end of the day, no one can ask for more. If I do lose enough weight to be smiled upon by those who walk by me on the street, that’s great, but my happiness isn’t dependent on that.

    Community Voices

    Who knows

    I am laying here hurting all over my body, I have an ##Undiagnosed Disease. I have painful tumors all over my body, specially around my joints. I am a collection of symptoms, but who knows exactly which are symptoms of the disease I suspect that I have. I believe I have Dercum’s disease, but there are only a limited amount of doctors who even know about Dercum’s and even fewer who can diagnose what type of Dercum’s I have and if #Lipedema is a part of the #Undiagnosed diseases I have.

    I know how much it hurts when not only do I have extreme pain, but I also have emotional pain because I know that look in someone’s eyes that means they either don’t think I am really sick or they don’t want to know what is wrong with me. Who knows why I can’t remember things anymore, who knows why it take me an entire day and night to rest after just having a doctors appointment.

    Who know how to treat my symptoms, who knows if I will be able to get out of bed, who knows why I can’t seem to get approved for Social Security #Disability. Who know when one of these tumors I have will form in a vital organs or my lungs.

    I guess #Undiagnosed or underdiagnosed is leading me to loose my desire to continue to live this life, Who knows, who knows.

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