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Dercum's or Fibromyalgia?
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Dercum's or Fibromyalgia?

I have been diagnosed with fibromyalgia. I have hundreds of lumps in the fat on my body. They are extremely painful and in all parts of my body. I started having them on my rib cage forty years ago and they have now spread over my whole body.They are in strands near my joints and the slightest pressure hurts. I need to know if other people who have fibromyalgia have these lumps. My rheumatologist says he has never seen a case of Dercum's and did not want to hear about it. My last rheumatologist said that he didn't know anything about lumps and would not feel mine with his hand. Do those of you with fibromyalgia have painful lumps? Please let me know. I also have IBS, Sjogren's, migrains and spinal stenosis, insulin dependnad diabetis, early kidney failure, arthritis, sciatica and I'm getting depressed just listing my diseases!
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Avatar_f_tn
I would insist with my doctor that he look in to this or refer me to someone who can and will.  My unprofessional advice, that of a patient herself, would be to GET A NEW RHEUMATOLOGIST if he will not do this for you, especially if you have one that will not listen to how you feel or palpate something you have that is causing you pain.  A regular office/doctor's visit consists of subjective complaints (what you tell them), objective findings (a physical, what they examine), and an assessment of the problems/situation and plan of care.  It sounds like you can only get your doctor to give his objective without the subjective, assessment, or plan.  

Are you close enough to go to a specialty clinic, like Cleveland Clinic or any of the Mayo Clinics or universities?  If you have the resources (insurance, referrals, etc...) to go, it may be wise.  If you are having pain and the lumps have baffled your current doctors, I would suggest seeking the specialty/university facilities. Good luck to you, I hope it all turns out well.    
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Avatar_f_tn
Thanks so much for your response. I am going back to my new rheumatologist next week and will again try to get him to discuss what he thinks the lumps are. Last time he breezed into and out of the room and said that he had heard something about Dercum's at a conference he attended. That is all that he said. He is affiliated with Ohio State University and is considered the expert on fibromyalgia for this area. When you have such a degree of pain everyday it is hard to keep in good spirits and I am not able to enjoy life the way that I would like. Thanks for your good advice.
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271770_tn?1221995684
Hi there.
I have had Fibromyalgia as secondary to Chronic Fatigue Syndrome and I have no lumps, just the pain when you press on my body. I would definitely get this checked out, that's just a little too concerning for me! Good luck!
Mel
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Avatar_n_tn
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Avatar_n_tn
Hi GrandmaSylvia:

I have had Firbo for 17 years.  In the past 3 or 4 years I have started to get these lumps or whatever they are over various parts of my body.  Mostly around my back, neck, ribs, a couple on my stomach.  They are painful and I only started finding them because I had an itch.  I have asked the doc's about them and was told they are nothing also.  I just can't believe they are just nothing so I am clue less as to what to do next.  I have a ton of other illnesses (some of the ones you have in addition to others) as well and I am just so tired of being poked and prodded I am hesititant to say anything to one of my other docs about them, you know what I mean.

I have never heard of Dercum's.  I will be looking it up though.  Good luck to us all....

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Avatar_f_tn
Great! Two responses..a good start. One with lumps and one without. Thanks so much for taking the time and effort to reply. I hope that we get more responses. BondyinOz thanks so much for letting me know that not everyone with fibro has lumps. I also have CFS and know how hard it is for you to get out of bed everyday. Sadie1, are your lumps painful with the slightest pressure? I really think that is Dercum's and I will let you know what my doctor says this week.
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271770_tn?1221995684
Aww you've got CFS too? Sucks huh? I'm actually not too well again at the moment but the problem is it's not the CFS again - I had been ok for a couple of years thankfully but have been getting progressively more ill since April with a lot of symptoms now which seems possibly MS-like. My fibro pains seem to have kickstarted again, but I'm possibly more stiff than I was before.
Definitely let me know what your Dr says!
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Avatar_f_tn
My rheumatologist said that I have both fibromyalgia and Dercum's disease. He put me on Neurontin that will gradually increase. He also gave me two shots near my spine just a temporary help. He said since they do not have a treatment for Dercum's it doesn't matter. The early kidney disease and the diabetic neuropathy are related and also the high blood pressure. So, lots of painful lumps are Dercum's!!!
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Avatar_f_tn
My rheumatologist said that I have both fibromyalgia and Dercum's disease. He put me on Neurontin that will gradually increase. He also gave me two shots near my spine just a temporary help. He said since they do not have a treatment for Dercum's it doesn't matter. The early kidney disease and the diabetic neuropathy are related and also the high blood pressure. So, lots of painful lumps are Dercum's!!!
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467763_tn?1207097269
Hi, I have fibromyalgia, chronic fatigue, restless legs syndrome and also but most painful I have Dercums Disease (adiposa delarosa). It is a disease where fatty lumps form on the body and are extremely painful to the touch. I have noticed that when I have a new one beginning the area itches..You can read about Dercums on the website dercumshope.org. Also I have had two removed from my lower back where mine are most painful and will need more removed soon, I also have many on my entire right thigh, on my belly, arms and many more.  I am at the point now where I'm having skeletal pain in my hips down to shins...Exercise will produce for me a flare-up and I will be fatigued and hurt so much.  I have a wonderful Dr. and she treats everything I talk to her about...I'm very blessed. I downloaded what I read on the website and took it to her and also found photos of dercums' lumps called lipomas, took them to her too, I'll let you absorb this and hope you find some help. Bev
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Avatar_n_tn
Hi
I have the same experience. I cry everyday with increase in pain in my thigh and arms. It is a burnning stabing pain.  It is getting worst. I have gone to so many doctors with no answers. I live in miami and can't find a doctor to help me. My Doctor told me that FM  is a mental condition. I have hard lumps where it hurts. I went for a massage to find some type a relief and it is worst. My massage therapsit told me that she felt cyst like mass on my thighs and buttocks. I also have migraine Irratable bowel. When I have the pain I just want to die. Cry constently. I'm 33 years old and single mom with 5 year son. He is the only reason I keep living. Please recomend a good doctor in miami who can help me.
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Avatar_f_tn
Hi
There is so much I want to write and say but will keep this short. I have been told I have FM. Yes I have lumpy masses all over my body and suffer with the other FM symptoms. The pain is more than distressing and get I really low so I do understand and have tearful times. I know its not much comfort but your not alone and to me (of course I would never wish this on my worst enemy ) it helps to know I'm not insane and that I don't imagine all this pain. Fibromyalgia is very real. Never let ANYONE tell you that your pain does not exist. If your in pain don't panic over it trust yourself. Stress makes it worse ok. All I want is my old life back. Make sure you get a good doctor that understands. l've been down that road myself and it took many years before I was believed. Good luck and keep us posted. Sending best wishes your way.
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Avatar_f_tn
I have fibromyalgia, I have been to doctors for over 10 years with the same complaints, and got to a point were i dont believe any doctor, I took it apon myself to research for my self and i was told it was possably arthritus but i was to young, i have dibilitating muscle weakness and found fibro. I also have IBS,Migraines,endometriosis, and diverticulitus, and a heart condition. I work mon-friday, and have a 10 year old, my husband thinks im crasy to be in pain all the time. anyways..I have had lumps in my right shoulder between my shoulder blade and spine, i have said for years this triggers most of my symthoms, but have not found a doctor to take me seriously. It is a life battle, but never give up. you know your body better than anyone! its just sad most doctors are so uneducated. Im told theirs no cure, but im relying on myself to test that theory wrong. It would be nice to not be in pain and cry all the time.
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Avatar_f_tn
I am full blown with Fibromyalgia _ I was to John Hopkins Baltimore Md.
for a 2nd opinion for Dercums Disease & it was confirmed there. Because
I only have 25% of my heart left I am not allowed to take any prescriptions
for pain - + I also had 2 very serious back surgeries neither 1 was successful - so I am also in constant pain from them.-, & I have bone on
bone  in my left knee & cannot have that surgery done because of my heart - I had 3 heart attacks & my 2nd one was on the operating table during my last back surgery- I also have permanent damage in my skull casing from an accident , so I will not be able to ever have any major surgeries again ! I am hoping & praying that in my next life my  body will be GOD'S CHOICE  ! GOD'S BLESSINGS TO YOU ALL !  your friend  Dianna :
P.S. The nodules from the Dercums are multiplying & growing .....The last DR. I saw at the Geisinger Hosp. Danville Pa. found 2 smaller nodules starting to grow inside 2 of my larger ones - to date I have 18....... in the beginning I even thought that maybe I was crazy - but now I have an abundance of friends with the same Dercum
Disease ETC.
THANKS FOR LETTING ME VENT !!!!!
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Avatar_f_tn
Hello I am a 36 year old mother of 4 children ages 4 - 13. I have also been diagnosed with FM and I have multiple painful lumps all over my body that cause me extreme pain. I have been to a few doctors and have told them that I have done my own research and that I think that I have Dercums disease and most of them have heard of it but dont really have any knowledge of it. All they really say is that it is rare. I am going to my reumatoligist tomorrow with some documentation on Dercums. my symptoms have progressed so rapidly, I have really went down hill within the last 8 months. If she doesn't do anything for me tomorrow I am going to look for another doctor. My PCP had mentioned to me the Cleavland clinic but with me being self pay he didnt know if I could afford it. But I am willing to pay whatever it takes to help me. It is a struggle for me everyday. My job consist of me taking care of my 48 year old uncle who is mentally retarded, which can be a real handful along with 2 of myy children have physciatric problems. They have ADD, ADHD< ODD< PTSD, bipolar and behavior problems. So I am under constant stress which I know is the reason why I am progressing so fastly. I am sorry to but my burden on you, but I would really appreciate it if you could give me the doctors name and the number to the clinic so I can make an appointment there. And any information you can give me would be greatly appreciated. You can contact me by email at lissa7779@yahoo. com. God bless you and everyone else who is suffering from this condition, that the doctors wont take the time to do the proper resaerch on this disease, while we all have to sit and suffer. Its ashame that we all have more knowledge on this condition and have to do the research ourself and present it to the doctors. what do they get paid for?
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Avatar_f_tn
hello I to have been diagnosed with FM. I also have alot of painful lumps all over my body and have all of the symptoms of DD. Could you please give me the name of the DR. and the number to the office that you were diagnosed at? Thank you and god bless you and may we all find a way to rid of all of the pain and suffering that we endore every day!
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