Thursday, December 24, 2015

What if…lipedema can be stopped with early diagnosis and treatment?

This is a lady with severe lipedema in stage IV. I am stage IV too. My stomach is shaped a bit different but we are close in how we are shaped. I often have wondered how my life could have gone with earlier treatment for my lipedema. It can be maddening that the more I move around, the more I swell up. My hands even will swell up more if I have been "more busy" along with the rest of me. The other day from doing some housework, my whole body bloated and my hands were like giant mittens. It feels kind of counterproductive in terms of what they tell you to do to "lose weight". I never miss wrapping or a Flexitouch sessions to take water off, it keeps the pain away. I am laying down today to take fluids off. Yes I worry about the expenditure of calories, but this means LESS PAIN.

Sometimes I do wonder what would have been if this illness had been caught in my teens and I was at stage 1. It would have changed my life. Aunt Confused told me during one of my last conversations with her that she told my mother to take me to a doctor when I had my 100lb weight gain, and was not eating for it, at the age of 14. She didn't of course.


  1. Ive came across your blog a few days ago googling lipedema.I was just "diagnosed"two days ago with it and lymphedema.I think we have even less knowledgable doctors/therepist here in Canada.Reading some of your posts I have learned a lot.I am though more concerned(or should I say freaked out)what will become of me.I have some same issues as you do.I gained over two hundred pounds this laaast few years,came on so fast.Thyroid problems etc.I was up to 450 pounds,just taken of 50 lately and then my body started changing.Anyhow,this therepist is wanting me in copression stockingas and capris.Im hoping thats enough,or is it?Its my stomach that seems to be so huge.and thighs.Cann you please so kind as to offer me ways you know to halt this progression or am I going to ballon up to severe size?
    I am sorry if this is not appropriate to ask all this from you.Looking for help and not sure where to go.
    Trying to trust God through all this but fear grips me!

    1. So sorry you got up to 450lbs. Here is my advice, make sure you get your thyroid treated, and have them maintain you at around a 1 TSH or whatever is applicable to you so you are not hypothyroid. Test for PCOS0-many Lipedema women have it, find a MLD therapist, to teach you how to wrap your legs and compress to keep the legs and bottom half from growing more. [I was able to walk better after my compression therapy even]

      Go province by province here, here are Alberta ones, I chose that at random... Canada

      There are Lipedema and other centers that specialize in Lymphedema.

      Lymphedema specialists and doctors should be able to address Lipedema too.

      Oh as far as major weight gains go, make sure you don't have sleep apnea too--I don't do enough on this blog to emphasize how much weight sleep apnea will pack on too. You will need a sleep study and perhaps a CPAP machine. Sleep apnea alters the metabolism.

      I will have to wear compression the rest of my life or everything will grow. Even now it can be struggle as the bandages wear out. Flexitouch takes a lot of fluids off me every night too. The therapists were able to get my legs even smaller but being this disabled and energy levels I do what I can.

      I hope you find help soon, praying...[if you live in rural area, sometimes you can find OTs who know how to wrap, I started with one in 2013, but their knowledge is more limited but they can start getting fluids off you until you find an MLD or if you need to travel a distance to see the real deal. A cancer center opened up in my town with a full lymphedema center with MLDs in late 2013/2014 so I massively lucked out. It's one reason to stick around alone.

  2. Oh thanks for responding!I did start on Synthroid for hypothyroidism.They think my TSH is fine to be at 3ish.Endo said I prob have PCOS but she did nothing about it.This fall did go to sleep study and have severe sleep apnea,using a BiPap machine.So here I thought I was going to be on the mend and take the weight off>Ive been dieting for years and more so since fall but was still asking docs why my feet sweeled so much(three years been asking with no answers)this winter I noticed my thighs sort of get baggy and start hanging over my knees.Iwas always "sturdy"before.I found a therepist who does MLD and she is the one who said I have Lipedema and lymphedema.Now Im concerned because she said we didnt need to do the massage and wrapping,also said it costs alot.Well I said I want to do the right thing no matter.There is no where else to turn here.Im largly concerned with how does the lipodema fat comes it fast or can I slow it down.maybe its different for everyone?.You say wrapping is best oor will the compression capris and leggings be enough?my dear hubby could NEVER wrap me!Im not sure who would.
    I looked at a group on FB but they all seem to be smaller,no stomach issues.Maybe a few that I could tell anyhow.Wasnt comfortable asking there.
    Thanks again for responding and I sure wish you the best.My life has felt so isolated already and I feel very alone in this.Its good to communicate with one who can relate.You sure have gone through some storms!You are a strong women.

    1. Ok have them watch your TSH. With PCOS, there is some treatment but depends on your age. Some doctors do Metformin and Spirolactadone, are you diabetic? The bipap should help you as the months go by too. Dieting will not fix Lipedema, it is fluids and altered fat cells and sometimes Lipomas affecting the body. The therapist was wrong to tell you that you did not need massage and wrapping. I would maybe try someone else. It can cost money but even if you could be taught in acouple sessions how to wrap your legs and get some basic compression, this will help. Did she say there was any medical reason for denial of compression. They told me my heart was in too much acute of failure which delayed things for me a bit, but then Lipedema was causing more fluid retention then congestive heart failure which I still have. It can be fast or slow it depends on many factors. Endocrine upheavals like the on coming of menopause, stress and other things can influence it. I had extreme stress during my huge weight gain. Some therapists depending on your body shape would be okay with you getting compression capris or leggings but you would need a professional to tell you what is best and for your health issues. Yes there are some groups where they are all smaller. It's hard, because I do not relate to stage ones or twos very much with normal lives obviously. Thanks for saying I am a strong woman, don't always feel like one. LOL I hope you can get more specialized help soon. Make sure to check cancer centers to find MLDs. I believe Lippys need the fully certified specialist, she could be a PT or OT like I had in my early stages.

  3. Yes Im diabetic,that diagnoses came same time sleap apnea.Im on Forxiga.She didnt say why we woudnt do massage and wrapping but I will discuss with her when I see her next,She wants to measure me for those garments.There seems to be a cancer center in the city one hour away.I may call there.No info on their site but about breast cancer etc.This one I saw was trained at the Vodder school so she might know her stuff.I feel like my size is intimidating.I could be wrong.I guess I wait to her back fro her and go from there.I just dont want to grow!My imagination runs away with me and sees my stomach on the floor!Sorry!!not so funny!
    Ok you have the best rest of your day!Thanks agian