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I have many lipomas--anyone else? suggestions?

Discussion in 'General ME/CFS News' started by Michael, Jan 17, 2013.

  1. Michael

    Michael

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    Austin, Texas
    Hello,
    In addition to my health problems involving fatigue, sleep challenges, constant pain/stiffness,erratic and generally low body temperature, and tinnitus, I also have lipomas. Lipomas are benign fatty tumors/lumps beneath the skin. I have mine in my forearms and thighs. Years ago I had some excised from my forearms(new ones eventually grew back in the same location) and the MD told me that I had the most of any patient he'd seen in his entire career. My thighs are almost a solid sheet of lumps, one blends to the next one AND they are increasing in size and number...ugh! I wonder if other members : have these, know anything about them, and/or have tried some protocol that reduced or eliminated them?!
    [When they are cut out they look exactly like chicken fat]. Thanks, and happy healing to all of us in 2013!
     
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  2. snowathlete

    snowathlete

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    I think so. I havent been formally diagnosed with them but I do have lumps under me skin. I think I posted about it a year ago or something but cant remember.
    I think I have them less than I did back then, dont know why, but I do still have some. Mine are mainly around my ribs, but also on my thighs. They can be quite tender, especially around the ribs.
     
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  3. Valentijn

    Valentijn Senior Member

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    They can be caused by some autoimmune disorders, which also might explain your other symptoms. Systemic lupus erythematosus is one possibility.
     
  4. Jon_Tradicionali

    Jon_Tradicionali Alone & Wandering

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    Zogor-Ndreaj, Shkodër, Albania
    The lipomas have been the only symptom which I have yet to fully connect to CFS. A large one formed when I was 19. I am now 23 and have 10-15 lipomas on forearms and thighs predominantly.

    I thought it was due to pathogenic bacteria, such as strep and entero, invading the lymphatic system. The lymph nodes then cannot function correctly and inflammation occurs which results in the lipomas.

    I mean, is that theory really so far fetched?
     
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  5. roonie

    roonie

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    yep i got them too....mine all came in ONE WEEK!!!. I am one of those people that had a moment when everthing turned back to "normal" for a brief time.
    short story long....i had symptoms for many years then i had a chemical overexposure when i was redoing my hardwood floors with a product that had toluyene and benzene as an addative... that tipped my over the edge...or as many say....set the immune system into fighting mode...at the time of the chemical overexposure, i herniated a disc in my back and the nuerologist suggest 10 days bedrest in the hospital. I stopped eating for 5 days while in hospital and it was when i started to eat again, that my immune system began to funtion normal again....then...i got back home in that floor finish that i found out later, does not stop offgassing for 15yrs or more...and that is when i ended up with full blown cfs. In one week of being back home, i had bleeding all over my skin that turned into moles all over my body...IN ONE WEEK! Also in one week i felt these lymph lumps form all over my body.
    I think because all of this happened to me so suddenly, i would be a great study model. Long before all of this happened to me (15yrs earlier) i got sick one evening and two weeks later developed a stomach ulcer...shortly after the stomach ulcer i began to feel achey all over with muscle troubles ....then...a couple yrs later ...chemical sensativities that progressively got worse until, like i stated above, the floor finish that put me down for the count..then the total reversal in the hospital when i fasted for 5 days...again...the reversal and proper function of the immune system never happened until i began to eat again. Since then i have heard of the odd recovrery and these people also witness their immune system finally turning on....these few recovered people that i have met, claim the feelling is like a lightbulb being turned on...that quickly. It is interesting to note that people with lyme disease have lyme bugs stored in these lymph areas. Many say the lymph is the last thing to return to normal once recovery is gained. Again.... i would make a great model but no doctors here want to hear my story. Hell....i cannot even get a diognosis here in Canada after being sick since 1993 and before.A lot of doctors made a ton of money on me though as docs here get paid per visit. My immune system is too tired to fight the fight anymore now...the tank is empty...lol. But i still have my sense of humor. The fact that i firstly had a stomach ulcer should mean i was infected way back when. Its no secret that most all of us impove with some form of restricted diet. I bet to wager that if we were all put on some type of intervenious that would sustain us for several days without food, that we may get the immune system to heal and return to normal...but that aint gonna happen anytime soon
     
    Last edited: Feb 27, 2014
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  6. pattismith

    pattismith Senior Member

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    I have a CFS/ME friend who has many lipomas.

    Seems that subcutaneous lipomas sometimes occur in some primary MitoDisease, so this should be ruled out!
     
  7. Binkie4

    Binkie4 Senior Member

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    I have Me/CFS, diagnosed about 10 years.

    About 30 years ago, I developed 2 lipomas, symmetrical on my ankles. And there it stopped not changing until I was diagnosed with lipolymphadema about 3 years ago. The lymph system on both legs is severely blocked.

    Back to ME- saw Dr Bansal a few months ago for ME treatment, and he diagnosed Dercums in addition.

    There is a thread on here about RCCX which includes a range of diseases including ME and Dercums, Drs Meglathery and Herbst are the physician and Ph.D working on them.

    Sorry....very foggy today, so I am not very coherent.

    EDIT: I should have said Dercum's disease is one of multiple lipomas which often return if they are surgically removed and that Dercum's and ME may be genetically linked along with hypermobility and connective tissue disorders.
     
    Last edited: Sep 28, 2017
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  8. NelliePledge

    NelliePledge plodder

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    ive got a lipoma on the back of my neck that Ive had for 25 years. Im not sure if Ive got any others which sounds a bit strange but I am very heavy so in some places not sure if the lumpiness is due to being overweight. I think there;s one on my ankle. I had the neck one before I was overweight so I know that is definitely there. How big are your lipomas? mine on my neck is about 1inch by 2 inches.
     
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  9. Binkie4

    Binkie4 Senior Member

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    @NelliePledge

    I thought mine were both the same, size, location on ankle but R is larger, according to DH estimate 4inx 2in, L about 2 in x 1. They have never troubled me, not particularly unsightly.

    As the lipolymphadema develops, I have a medial bulge below one knee and the other is developing in the same way. I don't like these. They affect balance, are painful and are unsightly. No treatment apart from surgery which NHS will not pay for, other than compression. Very little treatment in UK. Most patients go to Germany and if the disease is caught early, good results can be obtained. Of course, it is difficult to get a diagnosis so we are not diagnosed early. My GP did not diagnose until I researched it for myself and took diagnosis to him. Then seen at St George's, UK centre of excellence, where they are ( guess??) beginning to raise money for research. Dercums disease is characterised by multiple lipomas which is why I was surprised by Dr Bansal's diagnosis because I am not aware of any more. I have heard of NHS surgery for these.

    So frustrating to have two illnesses that are medically little known, have no real treatments and I was fascinated about 3 months ago, to learn that there may be a genetic connection between the two.
     
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