Dercums Disease

[thickman44]

I have had the trigger points of fibromylgia with wide spread pain.  I also have painful knots, lumps, some are not painful and some are painful. The one's on my trunk, outer and inner hips, inner and upper thighs are the painful ones. This keeps me from sitting or lying down for no more than 25 minutes before the onset of pain.  I wake up 4 times in extreme pain from the knots.  I have read somewhere that fibromylgia is an underlying condidion of other syndroms.  I wanted to know for sure that it is possible to have dercums disease and fibromyliga syndrome at the same time.  My doctors no nothing about DD and I am tired of them not looking into it and examing the lumps in further detail.  My x=ray showed small round dencities with a large mass over my liver.  Could these small denceities be the limpoas/
dd

[PennyJean2290]

I have Dercums, Fibromyalgia, RA, OA, mass on my liver, extreme fatigue, sleep apnea, hypermobility syndrome, breast cancer and this past month I found out I have atrophy pancreas and much more.  My old primary doctor said I have fibromyalgia and supposed to hurt.  The doctors here in Oregon will not give pain medicine out.  My pain started in my feet, like I was walking on rocks inside my feet and then on my ribs for 20 to 30 years. About 3 years ago it spread to my tummy, theighs and upper arms. Now it is even in my face and scalp.  I am in so much pain. I am sure most of you are also.  I am checking into Oregon Assisted Suicide. If I cannot get relief then I would rather be dead. People that are in this much pain do not have a life. I have tried chiropractor, trigger point injections, steroids in my spine and joints, massage, tens units, alpha stim units, acupressure, Lidocaine infusions and Lidocaine trigger point injections and Volteran Gel. I need a break from the pain, yesterday, if you know what I mean. The medical field should be embarrassed on how they treat their pain patients.  I even had one doctor tell me all I needed to do was put peppermint oil in my nose, deep breathe and relax.

I would like to put a fire under that guys feet and let him know what neuropathy feels like. One of the side effects from chemo along with the kidney stones and who knows maybe the pancreas which is now the size of a quarter. The hospital did give me 7 days of pain meds for my pancreatic attack.  

Good Luck to everyone with this horrible disease.  Dercum's is arthritis of the fat. Doctor's are not trained about fat which is why only a small handful of doctors know about this. I have had to teach my doctor's about it and hopefully everyone else will as well. So others do not have to suffer.

Be Happy!
PJ

[gaskell]

I feel it is sad to read all of your messages .
.this is a problem Dercum Diseaseand I feel you should fight to get it recognised more perhaps through a womems program or magazine ...so many ailments go without peole kn owing ..doctors should also send you to a specilist if they do not know ......letting a erson suffer and life difficult is not fair even if there is no cure it is good to know ....Good Luck to all you suffers ....keep fighting ........to be noticed

[Lizbeth1219]

I was just told I have Dercum's and Fibro (last Wednesday actually) after illness and not working for over a year. I have painful lumps in my neck & chest and swelling in my face, neck, entire left arm, and the left side of my chest. It gets so painful I cant wear my bra, use my arm or even care for my 6yr old son. I hurt every day and sometimes it feels like weights attached to my limbs and find it hard to get out of bed. Im so frustrated because I use to be active and now I need help with daily household chores. I cant work any more and Im applying for disability. Im so glad to have found this site.
I know Dercums is progressive, is it like MS? Any info or advice Id be very grateful.
Sarah

[Jodie379]

Hello, mine seems to be the same.  My temperature and blood pressure seem to be similar to yours.  I have been in pain for about 5 years, but have had lipomas for alot longer than that.  However, they are increases more and more daily.  So is the pain.  I am so exhausted all of the time.  I had to stop working, as it was too difficult for them to schedule around my good days and bad days.  The pain is horrible.  I probably have over 1000 lumps.  But my blood pressure is often low and I seem to get these episodes where I feel like I am light-headed and weak (I think that is probably low blood pressure), but don't know if it is due to the disease or not.  I was also told that I have fibromyalgia.

[rosaprettymama]

I have Fibromyalgia and I just went to a Dermatology and he inform me that I have Dercum Diseases,  for years, I have pain in my body and and I have had 29 surgeries to remove the lypomas, right now the Doctor is referred me to the Yale University Dermatology,

[allmymarbles]

You have fibromyalgia. Do you also have sleep apnea? These two are often associated. There is one expert who claims that sleep apnea causes fibromyalgia.

[gailupallnight]

I am so happy to find this website.  I believe I fall in the category of
firbro and Dercums.  For over 15 years I have been treated for Fibro, tried
everything, including accupuncture, bio-feedback and a number of holistic
treatments, as well as all of the infusion therapies.  None have relieved
this excuriating pain.  The nodules started to appear about  10 years ago
First on my lower extremety and now on my hands and writs.  Very painful as well.  No one ever mentioned Dercum Disease with the fibro but the
symptoms seem to parallel one another.  Thank you so much.  It gives me
more information to look ito.

[madmaddammin]

I cannot believe I found this information that so pertains to me. I have been diagnosed with possible Fibro  and tests were positive for the RA antigen.  Not much else was done and that was a year ago. I had flare ups about 2-3 times a year so I lived with the pain. Now I am miserable and am in constant pain all over my body. It feels like the flu but involvement in throat and sinus as well. My fingers ache so badly in the morning or after any type of gardening that I cant move them. I am also so tired all the time no matter how much sleep I get. Pain pills from previous surgerys are not working, wine is not working, I am desperate to get out of the pain. I am also a hygienist so my job already puts me in pain. I have a 2 1/2 yr. old and am only 38 but feel like 70 some days.  I have also said in the past {when I'm heavier}  that my fat hurts. Its always on my outer legs where the dimples are/were that hurt. Nobody believed me but it actually ached. My body temp has been 97.7 or 97.9 and my blood pressure has also been very low -90/60. Does this have anything to do with anything ???

[Dr Santos]

Hi,
How are you?  Little is known about Dercums disease and there are only a handful doctors who specialize on this. But there is a very wonderful site that I recommend and was created by one of the members here in Medhelp, HeatherShow. You may want to check www.DercumsDisease.com. This is really an updated site regarding Dercums and you may also want to get in touch with her. Take care always and hope to hear from you soon.

[hazymazy]

Thankyou for your reply. I have painful fat. Lumps in my fat (unfortunately obese) and rope like knotty painful tissue. When I was slim these lumps started on my ribcage at the age of 30. Thats all I had really until over the last 3 years they have developed everywhere. I am now 43. The lumpy tissue is on my stomach, ribcage, thighs, lower legs,around the hips and lower back. I also hurt in the same places as if I had the tender points of Fibromyalgia eg around the knees, elbows,hips and so on. How can I find out what I have? Fibromyalgia or Dercums? At the moment I am so lucky as the volume of pain is turned down and it has never given me such a nice reprieve, when it starts it last for months and so drags me down. I am trying to help myself with alternative treatments but don't know where to turn. Any kind of stress, activity and hormones turn up the volume of pain. Your advice would be appreciated. I live in the UK and all my doctor gives is pain killers and wont refer me as he says this is all anyone else will do for me. Pain killers either don't work or don't work after I take them for a period of time. I can stand the burning pain from all of these lumps. My chiropractor said they were lumps pressing on nerve endings the trouble is I have hundreds of them. Don't know what to think anymore. Please help.

[Dr Santos]

Hi,
How are you? Dercum's disease is a relatively unknown illness in spite of it being described as early as 1888, long before the fibromyalgia syndrome was defined. It presents with pain in fatty tissue. Patients, like sufferers of fibromyalgia, often describe it with all fats hurting a little. The diagnosis for fibromyalgia is clinical while in Dercum's there is a relationship between pain and body weight/obesity. The pain is either general and is often more severe than in fibromyalgia. The article by Drs Brorson and Faghe published in the The Journal of the Swedish Medical Association may be helpful ( ref:http://dercums_data.tripod.com/brorson.html). Take care and best regards.

[hazymazy]

Just to let you know that you are not alone. I have fribromyalgia with so many lumps throughout my body, all painful. I think I could have both fribro and dercums. My doctors says its fribro but has never heard of Dercums Disease so is not at all helpful to me. Just pain killers which don't work. I hope you see this message and let me know how things have worked out.