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Lipoma/Dercums

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I am not surprised that this article does not metion Dercums Disease.. a syndrome that some here may have. very little is known about the disease and because of that it is very difficult to get diagnosed. I have 70+ lipomas, many painful, and am quite delibiltated, however it is virtually impossible to get any medical assistance. My doctor and the hospital specialists (endocrinologist and neurologist) have all diagnosed me with dercums but freely admit they cannot find any treatment available under the NHS.

I am now unable to work full time but as the disease is not recognised I cannot get any support from social services or the Department of work and pensions.

I suggest if anyone is suffering the symptons of not only multiple lipomas but also pain, memory fog, possible weight gain and tiredness they research Dercums and return to their GP as we need to get as much info out on this condition as possible

4 likes, 34 replies

34 Replies

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  • bill38615
    bill38615 Guest

    Posted

    i have been struggling with various medical issues over the last 3 years or so and have had so many tests without any real diagnosis. The interesting thing is that I have between 35_45 Lipomas all over me but mainly chest,stomach,back,thighs,buttocks,knee etc. My doctor refuses to even have them checked out. On Tuesday 21st Novbi am having a denervation procedure on my neck to try to relieve some pain in m6 back and neck. Walking is slowly becoming more and more difficult though I am still managing to hold down my full time job,tiredness is just a daily event.Any info or advice would be greatly appreciated.

    • DesperateDan
      DesperateDan bill38615

      Posted

      Hi, hopefully when my last post is allowed by the moderator, it is held pending a check as it has a link in it to a white paper on Dercums by an american doctor Karen L Herbst. She has extensive knowledge on Dercums and the white paper on 'Adiposis Dolarosa is more than painful fat' may explain to you some answers you have been looking for, as it goes into Dercums symptoms in depth. I hope you can access it, or simply check out on the web for the titled white paper. And give a copy to your medics...
  • bill38615
    bill38615 Guest

    Posted

    Thanks for the paper which could have been written to describe my symptoms over the past few years. I intend to present this to my GP but don't expect a positive response. Hope you are feeling positive.

    Bill

  • DesperateDan
    DesperateDan Guest

    Posted

    I love the bit in the white paper about "patients with AD can be dismissed as malingerers with emotional problems, growths can appear overnight" etc etc etc... 

    "which might contribute to disbelief of AD amongst medical care providers" How true, I feel I have been labelled myself, but I hopefully have a great GP who I look to helping me get a resolve. In the meantime I keep taking the Gabapentin, and have the most painful lumps taken out. You keep positive too bill38615. All the best.

  • bill38615
    bill38615 Guest

    Posted

    Yes,agree just malingering and putting ourselves through this crap! I have had denervation procedure on c3_6 today,loads of fun honest,if I had a choice I would do this weekly but seems that my GP feels that its all in my head.

    Ps thoughts to you and all who know of our suffering!

  • charlene81342
    charlene81342 Guest

    Posted

    Thankyou desperatedan for the paper, this almost describes what I have been suffering down to a T! Also I seen u mentioned that your ribs and chest area was giving u hassle, over the last few weeks the ones on my ribs have been giving me so much bother, and when I've been poking around at them I cant even bear to lay on that side at night in bed its so painful, I will defiantly be mentioning this information to my doctor as I'm currently not on any medication, and feel every other day I am discovering a new lunp somewhere else on my body! Thanks again.
  • dawn_921
    dawn_921 Guest

    Posted

    Same symptoms. On assistance due to other health problems. Have 20 or more lipomas. Never thought to show dr. Actually they seem to be multiplying. Thank you. Bless you. I will do just what u said...... Be well
  • dawn_921
    dawn_921 Guest

    Posted

    Same symptoms. On assistance due to other health problems. Have 20 or more lipomas. Never thought to show dr. Actually they seem to be multiplying. Thank you. Bless you. I will do just what u said...... Be well
  • charlene81342
    charlene81342 Guest

    Posted

    Has anyone experienced these on the side of their neck, I have them all over but recently discovered a big moveable one on the side of my neck and I'm a bit worried about it, even tho I have them eveywhere else , I've never had a neck one before. 
  • kat79
    kat79 Guest

    Posted

    I am glad I foud this discussion. I have probably about 50 lipomas on my body. I had 3 removed five years ago but the plastic surgeon fro NHS was a bit useless and left massive scars!! Lipomas regrew in many places around scars since and it looks like I have to go to GP again and beg for removal! GPs are so useless and not interested. They said it is only a cosmetic problem but really it is not. Lipomas hurt me every day and restrict my life. I tried low fat, no table sugar, low GI diet, low calorie diet, fasting (I am a qualified nutritionist so I did everythign right) but it seems like it does not work.  I am stuck with this awful and painful condition. I would like to try liposuction but it would cost 2000 pounds to remove most of them at one go and I just can not really afford it. Plus if during liposuction surgeon won't remove them completely, they will regrow really fast and this is why I am hesitating to pay such a huge amount of money. I have to find a really good and clever surgeon which is going to be a challenge.   
    • Michelle5502
      Michelle5502 kat79

      Posted

      Dear kat79

      I have Dercums it took me two years to convince a surgeon out of sheer faith in me, to go in and try to remove these lumps. Three years and 9 surgeries later I am doing better. These lumps cause horrendous pain, at least for me, and quality of life is severly limited. 

      Please keep educating your doctors and pray that you find one with the vision that mine had. Feel free to show this picture.

      I have pictures of what mine looked like. Sometimes that helps the surgeon to know what they are dealing with. 

  • bmichelle797
    bmichelle797 Guest

    Posted

    Well i am pretty sure i have dercums i have many lipomas on my body shoulder ribs legs and arms now iv noticed it over last 4yrs or so . I have memory loss and a lot of the lumps hurt from time to time iv been diagnosed with fibro too and joint hypermobility. I mention it to my drs and they do nothing.
  • bmichelle797
    bmichelle797 Guest

    Posted

    Oh and weigh gain and fatigue are part of my symptoms too but have PCOS too...pe4sonally i hear it can be linked to underactive thiorode which my drs wont check for
  • Michelle5502
    Michelle5502 Guest

    Posted

    Dear Dan

    i just saw your post. I was wondering if you ever got any relief or had those surgeries to remove the lipomas from your back? I am in the states so I am not familiar with your health care system. I too have Dercums. It has been a five year struggle to educate and convince doctors that this is what I have and that it is excruciatingly painful. 

    I have found a surgeon urge on who removes them as he can.  I am having some rather large ones on my back removed this December 23, 2015.

    i am very hopeful. 

    i wish you the best.

    michelle

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