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

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  • Posted

    I have found my GP & several consultants to be almost uninterested in my condition. When you have lipomas in any amount, especially as many as I have you try to get as much information as possible. The first stop is with the nhs for many of us, where by my & others are met with casual not to worry atittude. I have had 10 removed in 3 sessions spread over a 1 year period, but I have had to pressure my GP into getting this done. I had a large lipoma removed 3 days ago & even the surgeon said I would be back I was unlucky to have so many but there was nothing else they could do bar remove them when they became uncomfortable.

    I have raised all the obvious questions as in is it my diet? is it lack of exercise? I am left with more questions than I asked, plus its as if they dont want to know. I also suffer from depression which untill tonight I did not have a clue that my lipomas & depression may well be linked and both come under the same disease, Decrums. Again I get more answers from my computer than my Doctor, and that I believe is shocking!

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  • Posted

    Just found this listing during a random search for the term Lipoma, so i hope you dont mind me (a fellow Scot) butting in.

    I found a lump on my lower left back about 4\" up from my hip last Monday. By Tuesday it, or certainly the area around it, had vastly grown in size; giving a deep grumbling kind of pain and a very queezy feeling. By Wed i could stand it no more and had to see somebody, so i went to the outpatients at the local hospital. I was told it looked like a LIPOMA ( a new term to me).

    I'm still waiting to see a doctor (not my Dr, that would be a miracle) but just any available doctor at the local clinic; first appointment not till end of this week; 11 days after it was discovered. God knows when i'll get a scan or a date to have it removed.

    This lump has now shrunk back down and seems to have solidified into a solid mass about the same size as your average new bar of bath soap. I'm feeing queezy still, have that grumbling pain in my back and now also around my hip and kidney.

    I've read that these LIPOMAS are often linked to Insulin / Diabetes, but this info as is most on this topic if vague.

    Does anybody know what causes these; are they dangerous; can they lead to other things; and why is so little info given out on these when first identified as nobody seemed very interested. Personally i found it rather worrying.

    JP

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  • Posted

    Always tired and Alasdair - thank you, I needed to know that I wasn't going crazy and that this wasn't all in my head. Over the past 10 years I have had more and more lipomas and other symptoms of this disease and less and less help from doctors. I have searched and searched for some treatment or some reason as to why this is happening but I keep going round in circles. In my searching today I found a link with diabetes, oestrogen and I think spina bifida! Also I found other people who have the same symptoms as me and also learnt about hemangioma which I have lots of and that they could be linked to Dercums as well! If I had the money I would get lipolysis/Smart lipo, but that wouldn't help the depression/tiredness and this cloud which seems to be hanging over my head and particularly my eyes. I have seen a few GPs and one dermatologist, they are all non-interested in any mention of a disease and say the only treatment is to have each and every lipoma cut out and to give me anti-depressants... I agree with Always tired - we need to get some information out there because the people we are going to for help have less information than us!

    In hope...

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  • Posted

    Hi, everyone,

    I am a Dercum's patient, diagnosed when I was early twenties as my Father had it, probably the only thing I inherited from him - thanks Dad.

    Over the years I have had 45 Lipomas removed, 7 the first time on the NHS (under local anesthetic), 5 by the same surgeon under general anesthetic (privately) and then I had 25 removed (by a plastic surgeon) in one go during the summer of last year (2007) under general anesthetic and I recently had another 7 removed under local by the same plastic surgeon. My first two surgeries were done by a normal general surgeon and he left me with rather large scars so opted for a plastics guy and he made a much better job. Some of the scars you can't even see.

    Recently I read about some success with liposuction so I investigated further and went and spoke to a few surgeons and eventually found someone in London willing to do smartlipo. Which I had done yesterday 22/12/2008. 2hrs worth of surgery under local anesthetic and I am now wrapped up, he removed another 10+ lipomas and cleared a number other areas. Not sure whether it will work long term or whether its the right cause of treatment, but I have given it a go. If successful I will have all my other problem areas treated. I will update this message in a few weeks time to give you all an update on the use of smartlipo for dercums.

    Regards,

    Steve.

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  • Posted

    Steve

    I got first lipoma almost 10 years ago. I didnt notice it until it grew big. Then a second one on my right hand. I tried some homeaopathic medicine twice but after using the medicine for almost years I got fed up and stopped eating it. Now I have quite a few of them. I am really interested in having them removed in a manner like you mentioned, which does not leave a scar. I did a lot of reseach on lipomas but I didnt know a single thing about dercum if I spelled it correctly. I do feel depressed and like everybody else I showed it to God knows how many doctors and dermatologist, no interest from anyone whatsoever. everybody tries to ignore it as it is not even something to bother about. Now the lipomas in my hand are growing and it is making me very very conscious about myself. I would really appreciate if you could guide me on the plastic surgeon you used and the cost etc. I remain in waiting

    Thanks

    Jalal

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  • Posted

    Steve, I'd love to know how you are now. I have so many lipomas it's unbelievable. If they were all removed I'd probably weigh at least 4 stone less! The pain is quite bad now ans the depression increases. If your lipo has succeeded I'd love to know who and where it was done. It's so difficult to get GPs to actually accept resposibility to do something for us. Ostrich, head, sand - all come to mind. Wonder how they'd cope if it was them?

    Do post and let us know the outcome Steve. I'm sure we're all dying to know.

    Sue

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    • Posted

      Hi Sue i have the same problem as you but cannot get any help from the nhs. It seems unless you can pay for your treatment you must put up with the depression and other thing,s that go with it. I am again going to see my doctor on monday and have another try to get treatment on the nhs. After all we paid our taxes etc so why cant we be treated as a human being not just another number. Hope we might keep in touch to see how we get on in the future take care and the very best of luck Chris

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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  • Posted

    As above, Steve. Love to hear about your experience. How did you get them to actually do something?

    Tiredness is an issue. It seems to be getting worse.

    SuziQ

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  • Posted

    SteveM - it's been such a long time and no news on the results of the lipo. I have asked a couple of surgeons and both said smart lipo could not be used for lipomas as the frequency is low and covers a wide area whereas the lipoma are hard and tough to break up so the lasers would not be strong enough. Am trying to find some form of treatment which might work! Am also trying so many supplements but no results yet. Wish we could find out how you are now and where you got the treatment!

    All the best to everyone else on here x

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  • Posted

    i only found my lump in my thigh the other week, doctor said it's Lipoma, gonna to see the doctor who does the removal soon.

    i also have a small lump in my neck, another lipoma?

    i always feel tired, from what i read here, it seems it could be because of LIPOMA, hope i won't feel that tired once they remove them

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  • Posted

    I have found my GP has been very supportive and understanding. I have seen consultants who seem to be receptive to my dilemma, but offer no course of action except pain control after all tests are carried out to no avail. When you have lipomas that hurt, especially as many as I have, you expect to get some help. Having had lumps for in excess of 10 years, they never hurt until I contracted some kind of cold or virus. They began hurting with such pain you could never describe, and seemingly pain killers didn't have hardly any effect. As months rolled on, my GP prescribed Gabapentin. This has stopped the most severe pain, reduced it from an amazing 9+ out of 10 as I described it, to a nice 3 out of 10 and now daily life is much more manageable. I have managed to go back to work, although tired after a few hours effort. I have had some of the lumps taken out in the past and this was an instant pain relief, however areas where the lumps seem in depth into the body such as the back and chest, there is some reluctance on the medical world to remove them, so I am stuck with living with the condition, and resting up on the really bad days. I will keep up with the Gabapentin, but will press on for removal of the most hurting lumps.
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  • Posted

    Hi Desperate Dan. I have jsut read your post. Nice to talk to someone else who has DD. Sometimes i feell no-one really cares. I have been given Gabapentin but it is doing nothing for me. The NHS do not seem interested. I have had a few lumps removed but they are not keen to remove any more. I have more lumps than i can count. I am still working but by the end of the day all i want to do is go home and take pain killers and go to bed as i am so tired. That is my moan over now, I suppose things could be worse. I hope things have not got much worse for you since you posted

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  • Posted

    I am so glad I found this discussion, I am covered in these little lump, all along my ribcage and stomach and on my wrists, they go down and come back usually if I'm ill, or stressed, the doctor said it was just fatty tissue, how ever sometimes they get really sore especially if I poke or prod at them. I've noticed as time goes on I've developed more especially after the birth of my son, they are really annoying me sad 
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  • Posted

    Hi everyone, I only get chance every now and then to get back on this site. My problematic lumps, especially in the ribs and chest area, were reduced by the removal of some very prominent ones which had caused everything from extreme pain in the chest and back, to a feeling of lightfootedness and of weakness/faintness in the lower half of the body. Having these removed returned me to a normality which somewhart resembled my hardworking life. However, they have returned again with a vengance, and I am awaiting what the next step is. I have a GP's appointment soon so should be able to format our next steps. My best source of information on Dercum's which fits my illness has been this. here's the link. http://www.lipomendercum.nl/Adiposis_Dolorosa_Is_More_Than_Painful_Fat_-_Dec_2007.pdf
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