Large Painful Legs Is Not Necessarily Obesity – Could be Lipedema – Blame Your Parents

Large legs, with little pitting, is an abnormal accumulation of fat in the legs, often hereditary in nature and very often mis-diagnosed. The pain is treatable.

Am J Med Genet A. 2010 Apr;152A(4):970-6.
Lipedema: an inherited condition.
Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. abstract here

  • “bilateral and symmetrical ‘‘fatty’’ non-pitting swelling usually confined to the legs and hips”
  • “feet are typically spared, giving rise to an ‘‘inverse shouldering’’ effect at the ankles.”
  • tenderness and bruising common
  • worse with puberty
  • misdiagnosed as obesity – but will not disappear with dieting
  • Not lymphedema because does not pit much (make dents when pressed on)
  • study suggested autosomal dominant in mostly females. (You have it – 75% chance your daughter will have it
  • I find, there tends to be very tender spots where superficial nerves traveling with blood vessels get irritated – I inject them with 5% lidocaine- 7.5% dextrose (spinal lidocaine) and that gives relief for a while.
  • Support stockings help as well but need to be custom made – and will be hard to get on…

any comments?

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3 Responses to Large Painful Legs Is Not Necessarily Obesity – Could be Lipedema – Blame Your Parents

  1. NORMA says:

    Is this all you can say about this medical problem? It appears the author of this has never suffered with skin pain from foot to waist, when the skin is touched. Why is it I can go on web sites from Australia and England and they can go into detail about the decease, even have sympathy for the patient; but go on a Canadian web page and it sounds like the author is at a party? The doctors here in Canada have no idea what this decease is all about. Oh, “(You have it 75% chance your daughter with have it.)” This is explained no different than if you asked someone to pass the sugar. Talk about being superficial. There is a lot more to this illness than this guy knows about.
    Look up another web site.
    ouch – I can be very detached and coldly analytical sometime. Thank you for the wake up call there…
    The whole point of this blog is to try and help pain sufferer with new options that are becoming available. I hear of severe cases committing suicide because they are told there is nothing that can be done and that just makes me sick.

    - Besides injecting sites with 5% lidocaine, a new technique where the subcutaneous/intradrmal tissues are just injected with sugar water – D5W is growing in popularity. It is called neural prolotherapy. It originated in New Zealand by John Lyftogt, MD. and can be done simply by any doctor by just injecting the sugar water superficially in skin over tender areas until numb.

    - Connective tissue massage, myofascial release and manual lymph drainage therapy have been found helpful in Fibromyalgia (see – http://www.jmptonline.org/article/S0161-4754(08)00352-7/abstract)
    and would probably help here too. – just “indian rope burning” the skin could be done to help yourself.

    5% lidocaine numbing patches, or over a large areas using 5% lidocaine in a lotion with 10% urea to help penetration (Uremol lotion is such a lotion) is helpful in a similar condition:
    Treatment of pain in Dercum’s disease with Lidoderm (lidocaine 5% patch): a case report.
    http://www.ncbi.nlm.nih.gov/pubmed/18346067

    - liposuction might be helpful:
    Microcannular tumescent liposuction in advanced lipedema and Dercum’s disease.
    http://www.ncbi.nlm.nih.gov/pubmed/20467389

    There is also a procedure mentioned in a German article that claims lipohyperplasia dolorosa it is curative called lymphological liposculpture.
    Fatter through lipids or water. Lipohyperplasia dolorosa versus lymphedema
    http://www.ncbi.nlm.nih.gov/pubmed/20871969

    Pain that severe (hurts to touch) smack of neurpathic pain and would benefit from amitriptyline or nortriptyline, and gabapentin or lyrica. Might be nice to get Vitamin D and B12 levels checked.

    There is a similar condition where people have multiple tender fat nodules throughout the body and it can respond to IV lidocaine treatments:
    Management of Intractable Pain in Adiposis Dolorosa with Intravenous Administration of Lidocaine
    http://www.anesthesia-analgesia.org/content/55/2/257.full.pdf

    Long-standing pain relief of adiposis dolorosa (Dercum’s disease) after intravenous infusion of lidocaine
    http://www.sciencedirect.com/science/article/pii/S0190962286701849

    Dercum’s disease (adiposis dolorosa). Treatment of the severe pain with intravenous lidocaine
    http://www.sciencedirect.com/science/article/pii/0304395987910621

    Intravenous lidocaine for the treatment of intractable pain of adiposis dolorosa.
    http://www.ncbi.nlm.nih.gov/pubmed/7129748
    Attempts have been made to have pateint self- administer concentated lidocaine but it has to be given as two separate shots in case one is absorbed quickly intravenously.

    - External pneumatic compression, and more recently, Cyclic Variations in Altitude Conditioning™ (CVAC) chamber (where air pressure is rapidly cycled up and down) could be helpful:
    Pilot study: rapidly cycling hypobaric pressure improves pain after 5 days in adiposis dolorosa.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004643/pdf/jpr-3-147.pdf

    Accept my condolences for your suffering and for the angst that it could be passed to one’s children..

  2. ariel says:

    how is this condition treated? how do u make the legs smaller and stop the blood vessles from breaking

  3. Rebecca says:

    If you are suffering (or think you maybe suffering) from any rare fat disorder including Lipoedema/lipedema and live in Australia New Zealand or the Pacific come join us for conversation, Information and support over at out Facebook group.

    https://www.facebook.com/groups/254369064687807/members/

    Support for those living with Dercum’s Disease (Adiposis Dolorosa), Lipedema (lipoedema/lipodema), Madelung’s Disease (Multiple Symmetric Lipomatosis (MSL)) and FML (Familial Multiple Lipomatosis) In New Zealand, Australia and the Pacific Islands.

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