Hi! Dealing with Fibro's Ugly Cousin

[Salome000]

Hello-

My name is Carmen, and I was first diagnosed with Fibro in 02'. For 10 years, I fought docs who said I was exaggerating my pain to drug seek, etc.

During that time, I noticed that I had lumps in my arms and on the side of my legs, which were incredibly painful. My docs said they were lipomas and insisted that lipomas didn't hurt so I must be drug-seekibg.

Talk about seeing a pattern development!

Anyway, one day I'm on the net and stumbled across "Dercum's Syndrome". And BAM!! I saw the light.

Dercum's is supposed to be rare. I think it's being misdiagnosed as Fibro. They are very similar, but the pain from Dercum's is far more severe. There's also not a lot of studies being done because there's no money in rare diseases. So I've joined to spread the word! If you have painful lumps, you have Dercum's!

I'm glad to be here and will answer any ???s. I'm trying to grow our numbers since the diseases are related. Thanks for allowing me tn join!!

 

[medicmurphy]

Did you self diagnose?

 

[Salome000]

Hi! No...I'm sorry I didn't go into more detail...it was 4am and I was a little out of it. :

There is only one MD that studies Dercum's and another condition called Madelung Disease. Her name is Dr, Karen Herbst. But that post I stumbled on mentioned a Dr. named Frances Meredith and she was located in Cary, NC. About an hour from where I lived. I was her 6th Dercum's diagnosis. She said she was dealing with baptism by fire.

This was back in 2013.

Here's the episode on Dercum's that was featured on Mystery Diagnosis, The Man with 100's of Lumps. They enhanced his lumps to get the point across, so they're not as pronounced, although you CAN see them in the right light.



Dercum's is described as "moderate to severe pain". That's 24/7. Fibro is ranked lower. Not to say Fibro doesn't mean pain...I have friends that have Fibro and they struggle. But Dercum's patients have high pain levels that need opioids to control it. It's crazy because, out of my opioids, the drug that helps me the most is Tramadol. It works on the nerve pain really well. The rest is for the pain from inflammation and pain in the joints, which Tramadol can't touch.

Sorry...didn't mean to ramble. Thanks for asking! But I can say, definitively, that the painful lumps will lead straight to Dercums....at least for what we know now.

 

[carol63]

hi Carmen I have been to docs with lumps at bottom of rib cage,as he cold feel them he sent me for xray,but nothing showed,no further action was taken.i still have them and sometimes cant stand even a cushion there.i also get soft slightly risen painful patches on my head,to the extent I once had to stop hairdresser from washing my hair.also when touched send strange feelings in my face,do you think that could be related?i have been diagnosed with primary fibro,sjorgrens,ishmail bursitis,oesto arth also have granuloma annular{excuse spellings}

 

[Salome000]

Hi Carol!!

I've got osteo and bursitis as well...not sure about the others, but I'm going to look them up as soon as I leave here!

Any fibro with painful lumps and a higher than 'normal' (pffft) pain level absolutely forms the basis for Dercum's. As to the rest, I have no knowledge and I can't say for sure, of course, but I'd def. read up on it and present it to your doctor.

When I told one doc about my painful lipomas, I was told, "Lipomas don't hurt." I just stared at him a minute. Then what are these lumps? "Lipomas", he said, scribbling something in his book. "OH! Thank GOD!!" I said, rather loudly. He jumped a bit. "Thank you, Dr. ----, I can now go home with lipomas that don't hurt, because they aren't supposed to. Now...who's going to tell them...me or you?"

I WILL tell you this...I finally got over being cowed by doctors. If they won't take an interest, or blow me off, or ask me who the doc is, me or him, I run as fast and far as I can. The majority of doctors I've had are absolutely worthless. Which is why I went to concierge care and have never been happier.

Let me know what happens, Carol...I wish you well!!