I'm not sure if I have dercums I found my first lump 19 years ago and since then I've had 21 removed with two more to be removed. Have looked at a lot of the symptoms and I have had chronic fatigue since my teens, headaches for the last 20 years weight gain, under active thyroid, ibs . Have spoken to my doctor bout it a few years ago but they weren't very helpful, so I have now printed off some information for and in going to try n discuss it again. I feel like a hypochondriac. Can anyone tell me if I'm wrong
jeaniemac jeaniemac
2 Responses Feb 9, 2013

I have been battling these lumps since 2001. I found a lump on my leg just above my left knee left side. It was not painfull. After that I started getting lumps all around the left side rib cage. I thought I wold die. It hurt so bad, I drove myself to the er. They gave me a shot and at last I could sleep. However, then began a search for an explanation. The did endoscopy, colonoscopy. Had a second surgery and still they said I was wrong lipomas don't hurt. I began to research this myself. I found articles by Dr. Karen Herbst. None of my Dr's would even consider looking in to it. I finally found a Dr that would even listen to me. I decided to take the trip to Tucson Az to see the specialist. Finally I have a Diagnosis and Dr Herbst sent information to my Dr. Hallelujah. I am not crazy. I did find out that they are all over me. No cure yet. But I kissed Dr Karen' s hand. And now She has received a grant to study this Damn DD. in Switzerland. God Bless You. I do used a pain cream 2.5 Lidocain/prilocain. on them. It helps. Lumpy Linda

If doctors can't find a physical cause, regardless of their level of expertise they tend to go forward with "it's not physical so it must be something else." You might suddenly find yourself being labelled a nut or being queried about your eating habits or hygiene.<br />
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Don't show doctors all of your anxiety. They tend not to get it that not everyone has a perfect life or to understand what that really means. They enjoy all the benefits in the world that are likely to impart serenity and poise.<br />
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You've had lumps removed. You have presumably been diagnosed with Dercums. Or not? Were the lumps subsequently confirmed as lipomas?<br />
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Do you get pain in the limbs or joints? Where? Which pain treatments have been successful?<br />
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Is it possible that your mother or her mother had Dercums? Father, siblings?<br />
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You have an understandably bothersome condition. Though I personally think having a diagnosis is always helpful, it seems that, with Dercums, that knowledge isn't going to be crucial, treatment-wise. The greatest benefit of a formal diagnosis for yourself, and this is significant, might lie in the ease of explanation to new doctors and others.

My mum has fatty lumps and she also has fibromyalgia. My lumps have been confirmed as lipomas and angiolipomas. I get a lot of pain in my back neck, wrists knees. I have not been diagnosed with dercums but I did mention it to her and she didn't agree, but it was only a newspaper clipping I gave her. I now have more info I can give her

Stumpy: While I don't like taking anything, out of necessity I take 275mg naproxen each evening with food. Originally I took diclofenac but a recent study showed that naproxen may be more friendly in respect of coronary side effects. They are both NSAIDs and the coronary side-effects were big news, some years back. Naproxen is common in period pain medication. Although they still scare me, these pills changed my life with respect to back, neck and shoulder pain (which I suspect may have a fibromyalgia type basis in my case). I'm pretty careful though to avoid putting on pounds.

Hve had naproxen along with paracetamol for my headaches n it doesn't touch it. I hve also had diclofenic , propanalol along with codeine n at times really struggle with headaches which in turn cause dizziness and Ibe already experienced vertigo which wasn't pleasant. I'm now awaiting to be referred to a specialist for the headaches and also a dermatologist which my doctor never even suggested for my lumps

It also doesn't help that I live in Scotland, I think there are very few people who hve this illness and I guess that probably 90% of doctors hve never heard of it

Ah, hope you get some better answers.

Me too

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