Living with Lipedema Pain with Cynthia Weller - Lipedema University

[@monichippewa2232]

Wow, I cried right along with you. I have been told by numerous Dr. That this condition does not hurt, and it's in my head. I am to point I hate to be touched because of the pain. I'm here I learn pretty well... Please teach us I'm all ears.

[@brand-newfitmebyjuls]

This is so touching. I am stage I and Keto combined with intermittent fasting has helped me reduce swelling and physical appearance.

[@janborkowski6659]

Only recently, two months ago, I learned that I have this condition. One therapist says stage 2, another says Stage 3. I’ll be 75 next month, and I’m sure I’ve had this for the last 3 decades. My daughter looks to have it too, much to my sadness. Now I’m trying to find a doctor who understands this disease, so I don’t go further in stages. Thank you for your sharing your story!

[@janetstrode-penny3934]

Please try Lymphatic drainage. It should be very gentle, even on Lipoedema legs it should not hurt. I did not understand it to begin with. I had 4 sessions and liked being massaged but really felt no effect other than it being a nice comfort. On about the fifth session, after nearly an hour, I felt a rush in my groin lymph node, it felt foul. I felt sick there. It was all the sick fluid which had jammed up in my legs. Then I understood what it was all about. I then got a UTI. The Doctor told me that that was probably the reason why I had such high white cell count, the infection was stuck in my legs. He said temporarily halt the lymphatic drainage while on antibiotics. I had two courses. Then resumed massage again. Each time now that rush happens earlier and earlier into the massage. I have become completely unclogged. You pee a lot after it, that is your body getting rid of the excess fluid. I also feel lighter. I also have something called a Sun Chi Machine (Ancon). Look this up. Don’t get a cheaper model, those can do damage. I do about an hour on it at a time, but a few minutes is fine. It gets blood pumping into your legs. After I can walk a lot more easily. Good luck!

[@helenTW]

It's strange how it spread in my family. My grandma and aunt have it but my mom doesn't and somehow I do. Wishing you and your daughter the best! Hoping you will get help suitable for both of you!

[@erikasmith3282]

I’m another elementary school teacher who had to retire because of health issues. I recently found out I have Lipedema and hypermobility. I have so much empathy for her.

[@joditimgren]

I am crying right now. I am positive I have this...but in Canada it is not well known. My daughter has worse signs than me. I think she got it from both sides, her Father's Mom had it I am sure. Thank you for sharing - hugs!

[@bashag5477]

One of the most incredible lipedema stories I've ever heard. And you have touched me.

[@janetstrode-penny3934]

I have Lipoedema. In NZ the health department tells you to get a diagnosis from a Rheumatologist. The Rheumatologist said I was a middle aged woman who had let herself go. He also told me I could take a tablet every day for the rest of my life and I would be skinny. I knew he was totally wrong. If I had taken those tablets, I would be skinny where I have no problem and the connective tissue surrounding the fat could never disappear with this tablet. I really began to notice this painful disorder when I became pregnant and later even more so when I went through menopause. I had not let myself go. I was sporty, ate no processed food, always fresh vegetables. I tramped, cycled, swam, skied. I don’t enjoy chips. I did nothing wrong to cause this. I went to Australia. Immediately I was diagnosed with Lipoedema. Liposuction is not on National health here. (I have NZ and Australian Citizenship) It is so unbelievable that this disorder is not covered for liposuction under National Health. It will cost so much more long term with sufferers unable to work, like me, Lymphatic drainage, knee replacements, care, pain relief, etc. My understanding Germany and Netherlands now offer for stage 3 for citizens. Some insurance companies are now getting on board. My insurance company Southern Cross does not cover Liposuction… although they do for other things. I have had two liposuction operations. My back which was life changing. Could someone tell me if removing the Lipoedema in the back is like taking out the engine? It sure does feel like it. My arms. So much more energy! Saving for the big one, my legs.

[@flisscook8934]

Your story has so many similarities with my own 44 years a Teacher of Voice, Therapist .... Lipoedema changed my life from being a succesful teacher on a National and to an extent, International scene. I have so much i would love to share with you... My daughter has it too.... I was diagnosed very late - 2019 so I am stage 4 BUT I knew there was something wrong when i was 9 years old... no one would listen or believe me. Thank God things are changing, however..... the PAIN is horrendousno one can begin to imagine unless they have experienced similar. Thinking of you

[@ysvjlv]

Thank you to both these ladies for sharing their story. I wish the video’s producer could have included the specific diet and lifestyle changes the mom mentioned at the end of the video that her daughter was willing to follow once diagnosed. That would have been a great help to those of us who also have it.

[@LoveMyGarden13]

This woman is amazing!

[@sarahcooper8383]

Such a lovely video. I've recently been diagnosed with lipedema so thank you ❤️ x

[@ysvjlv]

Thank you for sharing your story and helping to spread the word. I have both Lymphedema (diagnosed) and Lipedema (self-diagnosed but also suspected by my last PT-CLT) and it has become debilitating. I also have chronic venous insufficiency. That’s what was diagnosed first, or at least simultaneously with the lymphedema around age 50. At around age 56 I experienced my third bout of lymphedema which this time will not quickly subside with the typical treatment of MLD & wrapping as it did when I had it at age 52 & 54. Instead it has worsened and I’ve now developed Lipedema in addition. The symptoms are different between the two, yet both cause swelling. For example, my feet and ankles have always been heavily involved, yet this third time, which hasn’t alleviated with traditional treatments, everything looks much worse with tremendous swelling at my hips, buttocks, abdomen, upper thighs and legs in general. I even notice my arms & face/neck seem more swollen. And another big difference is the pain which I didn’t experience the first two times. This latest swelling has been unbelievably painful, and it’s severity has made things difficult on my mobility-even driving has become hard. All the doctors I see offer no solution other than LE therapy and I think they mostly believe that if I lost weight all would be remedied; some say so outright! I am now looking for a new therapist as the latest one I saw (for one appt, the assessment only) who was closest to my home (30 min away was closest I could find) REFUSED to do MLD massage OR wrapping saying that patients as overweight as myself (200 lbs overweight) “don’t benefit” from it. She told me to go home and commit to diet & exercise, and come back in two weeks to see how I did! Of course I knew she was wrong, and I tried to self-advocate but the fat-shaming combined with their ignorance always makes it hard! THIS is the nearest “expert” therapist I could find, after days of searching & phone calls looking for PTs and OTs who are also trained in LE treatment?! I feel so hopeless & frustrated. Thank you for sharing again. You and your daughter are both beautiful and seem lovely both inside and out! Wish you and all of us who suffer with this condition all the best and hope for a better future.

[@deborahwilcox631]

My heart goes out to your pain…I am so sorry dear one

[@Labyrinthine_Complexities]

I'm crying right now because I relate so much to her story. All of it. All the excuses from Dr's.

[@donnagaines8120]

Perfect explanation so beautifully stated . I cried throughout the segment as I too have this condition.

[@vs7030]

Wow, you are amazing Thank you so much for sharing Hearing your story has made me realize the pain is not in my head I've been to so many specialists and they say I'm it's fat pads through out my body and there's nothing to do to worry about. I'm very frustrated, but I I have to daughters, It is really scary Thanks for the God for you ❤️🙏🏻

[@pammym1825]

Thank you so much for sharing your story...I think I have this disease as well and amazingly I had the same experience with flying to Thailand...my lower legs were so swollen and the burning pain felt like I might not make it home.😢 The heavy weight of my legs and the pain of movement/touch is indescribable. I'm finally getting the help I have needed after nearly a decade of my undiagnosed condition because I began researching leg liposuction! Wow...finally!

[@deborahwilcox631]

Right? We have HOPE!

[@htulips6685]

This was a touching story. I've just been diagnosed with lipedema yesterday.

[@LipedemaSimplified]

there is help and support H Tulips - be sure you get support lipedemaproject.org

[@iriseijpe332]

I have lipodema too im 14 years old and i know i had it when i was 8 sometimes its do hard and i really hate it but i have to keep going your story is amazing thanks for shareing it make me cry

[@Ce-light]

❤😊You are not alone, I am sure you know.😊❤

[@angeladaye4178]

Oh Sweetheart. I want to encourage you. Stay strong

[@woosongs359]

Wow this was 4 years ago and you might be 18 now. How are you doing dear?😊

[@DebbiePike77]

Well I had Cushing's disease that piles on the weight from extra cortisol and I have the lumps bumps and look swollen. Going to Jaime Swartz very soon hopefully.

[@honeybee6154]

What kind of doctor treats this condition? I'm absolutely positive I have it too.

[@brunildaratel6708]

Thank you for sharing! Your amazing, you daughter is lucky to have you as mother, god bless you 🙏🏼 wishing you well. I thing I do have it for a while but I didn’t have no idea was called lipedema . It’s got worse with my 1st pregnancy. I thought was fat . But I loses the weight still have them, I do have pain from my legs my feet 🦶 . But thanks 🙏🏼 for the info ℹ️, god bless

[@MelanieFromCanada]

I know this pain all too well. I am sad that you do as well :( I think you and I were talking in PMs on FB a few months back :)

[@stephanieh.8669]

Yes please teach me!!! Please 🙏🏻

[@daniellemroz8548]

I have never heard anyone elese describe their pain in the same manner as I have about how a little kitten could walk across you. Since I was 18 I noticed this type pain on outside of outer thighs. I would scream out at lightest touch. I had others tell me that it didn't hurt me and I said oh do you think that I could pretend that type of a reaction? I still don't have answers at 47. But as years have gone by my body has changed dramatically. I had a very beautiful figure all the way up until close to 30 years old. I did notice though my weight gains prior around upper legs and arms had been lumpy looking.

[@aluna3161]

Thank you for sharing this... I have been researching myself. I went to my primary care doctor and she gave me a referral for a vascualar surgeon... not sure that is going to be the route I need to take, but it is a start. I made sure she put on the referral lipedema and not lymphodema... I have all the symptoms this woman mentioned in the video. I live in NJ and would love some help.

[@BlueBlossomsBlues]

I live between Bulgaria and Australia - I have had to do many 20-30 hour flights and will have to in the future... There is no hope for me...

[@elizabethphilip9465]

I have lipoedema. Legs pain really uncomfortable on daily basis. Even slight poke on the outer side of leg really painful. But in my country, the treatment and professional doctor for lipoedema are very limited in my country. The treatment also very costly. My husband kept asking me maybe it could heal by walking or exercise. I told him, it wont work. I dont even know how to work or walk with painful legs every night. I have all the pains that she described in the video. I dont know where to seek for help here 😢

[@catherinesowers4615]

I'm so sorry, and I understand. Take baby steps start with eating healthy for lipodema .look it up online and doing massages for lipodema. Also learning to do lymphatic drainage will help..look it up, ginger tea is great to help with swelling drinking 2 cups..keep your legs Elevated when you can. If you can't walk do light chair exercises it's good for the lymphatic system.look up supplements for lipodema. Every little change help. I'm on a journey also to feel better and live life. Wishing you the best .

[@stephanieh.8669]

I have had this for 11 months and I have been in the hospital 2 to 3 times a month! It’s so hard!!!

[@deanawells4395]

Out of desperation I am trying castor oil packs for the pain and issues around my issues.

[@sheralyncaupain9481]

I would love to see an update or just where they are now. Does anyone know if they have an online profile or page?

[@bashag5477]

Good for you.

[@jeanhopman5659]

damn. I was a teacher. Did we damage ourselves? I always felt it was my own fault because I was fat, so I just bore the pain.

[@cannottt]

How she takes her daughter’s hand 🥺

[@clairem6368]

Im really sorry if this sounds rude but why doesn’t she undergo surgery? Is it just the cost or any other underlying medical issues? Thank you and good luck

[@pammym1825]

There was a picture of her before and after lipoedema liposuction. Honestly it's both cost and medical issues that inhibit surgical intervention💐

[@Cari777]

It can come back if the nodules are not manually removed and it hurts like someone is cutting your bones with a dull knife or a sharp knife it depends on the day but it always hurts.

[@stephanieh.8669]

This sounds like Nerve Pain!!

[@deborahwilcox631]

Alfred needs to be reported as a HATER! My husband would punch him with his hate speech on this site….Dear Lord save Alfred from his hate and lack of empathy

[@alfredalfredo5080]

Stay slim and eat healthy and lose body fat you need to go to the gym you won’t have lipodema

[@deborahwilcox631]

Alfred, you are ignorant ! You have NOT LISTENED OR LEARNED ANYTHING! Get off of this site! You are spreading HATE

[@emmao109]

You need to read some medical arti les and journals you ignorant jerk. Lipedema is totaly different from normal undiseased adipose oh so you understand l ll call it body fat

[@veronicazambrano8240]

🙄🙄🙄 It if was that easy no one would have it. It isn't just present on obese ppl. Thin women also get it.

[@catherinesowers4615]

That's not true..please read about it before making a statement like that. Women are really suffering

[@jaqmaiakovskaya2303]

Sorry, but you’re wrong about it. Lipodema is a different type of fat that infiltrates inside the interstitial, a “inflammatory fat”, stubborn. Google about lipodema skinny and you will see one of the most scary pic about a young anorexic lady with her half top like a skeleton and the half bottom fat. So unfair coz she exercised a lot and starved just to try to loose the fat in her lipodema legs.