Fibromyalgia or Dercums disease.

Question

Hi
My doctor tells me I have fibromyalgia. I have so many of the symptoms eg pain in back,hips,thighs kness,neck.shoulders so on, burning,aching. numbness, itching, muscles weakness. poor sleep pattern. Symptoms are worse with stress, monthly cycle and activity. I also have eye pain and intraocular pressure of 26 in my left eye, and foot pain. I could continue. There is one thing which greatly puzzles me and this is that I have painful lumps in my fatty tissue. These lumps hurt and burn whether I apply pressure or not. There must be hundreds of them, the size of marbles and peas. They also feel like strands of rope over my hips and thigh. I fist noticed them 13 years ago under my breast along my ribcage when I was 30. Now I have them all over my body. Some lumps my doctor can feel others, others only I can feel as they cant been seen but cover me as if buried in my fat layer. I cant help but wonder if I may have dercums disease instead of fibromyalgia and no longer know what do do. Your advice would be very much appreciated.

Lorneth · Answer

Sorry I get a bit confused when typing. Think I posted a comment rather then a answer by accident. 


I also have fibromyalgia and I also have lumps just above my knee on the side of my legs just above my ankles and in my stomach some doctors can feel them others cant I cant walk very far and have to use a stick..  my legs itch burn but to touch the outside would feel numb but the inside burns like crazy my legs get so heavy its horrible they have me on zapain for the pain and gabepenton I ask for stronger but they refuse saying that it is no use. I also printed out info on dercums my doctor had heard of it and said that it is possible I have dercums disease as well as fibromyalgia but to remove these lumps as I dint have that many luckily just a few marble sized ones to remove them would be more discomforting as the scar after would hurt more. I don&t know what to do either.

paradoxmdl · Answer

Although some doctors have suggested that people with skin lumps are exhibiting a symptom of fibromyalgia, there is quite a bit of evidence to the contrary. Based on what you've described, it sounds like you probably have Dercum's Disease, perhaps in addition to fibro. For the past 3 years my legs have hurt - burning, aching, piercing, needles, you name it. Until spring 2009 I was a university lecturer but had to stop working because my legs hurt so much I couldn't walk to the classroom from my car. I noticed a few small lipomas (egg-shaped fatty tumors) and I had a lot of pain on the inside of my right knee but nothing much else. I had meniscus repair surgery in my right knee on April 12 this year and 3 weeks later had a cortisone shot in my left knee. Then on May 15 I woke up to dozens of lipomas all over my legs with most around my knees. They were extremely painful. Since then they've shown up all over my body. They are all very large. The encapsulated ones are the size of a large egg and the unencapsulated ones are the size of half a grapefruit and one is like a 3 in. wide band around my thigh. They are all over my neck, back, stomach, butt and back in addition to my legs. And they are extremely painful. I went to my doctors with a packet of papers describing Dercum's and why I think I have it. Not one doctor I've seen since then (about 10) has ever heard of it or seen it. But after looking at my material and my symptoms they diagnosed me with Dercum's and promised to learn about it. I will be seeing Dr. Karen Herbst, an endocrynologist in San Diego, CA for a consultation in August. Dr. Herbst is considered an expert in Dercum's which will be quite a relief. I'll also be getting help with pain management and going to a university to try and get more assistance toward having them surgically removed. The plastic surgeon I saw today said it would be impossible to remove my lipomas because there are so many and he wouldn't be able to find the margins in many cases. Plus he had never heard of Dercum's. So going to a university hospital improves my chances of getting someone who has seen Dercum's Disease. Some people have small lumps like marbles and peas all over. I have the huge version with some as large as 5 inches long and 6 inches wide. I've tried to 'rub them out' but they are much too painful. There's lots of peer-reviewed literature about it - look at some of Karen Herbst's articles.

reidys · Answer

hi i have been diagnosesed with fibro/dercums i have same symtoms as you hundeds of lumps under the skin i have seen a Rheumatologist who diagnosed the above i take amertrypline wich realy helps me started of with codene then once i started amertrypline i stopped takeing the pain killers ,i havent come across a docter who has dealt with dercums and beleive me i have seen a lot of them,i printed everything i could about dercums and took it to my docter who said its quite possible it is dercums,

hazymazy · Answer

Thats really kind and helpful of you. I have tried to  massage the lumps but did not continue as its so painful. I certainly feel  they need it. I am delighted it has worked for you and that gives me encouragement. I can tolerate the lumps themselves its the pain that come with them and the uncertain fact of what they are eg fibromyalgia or dercums disease. Good luck with your results and I shall try the same. Thank you Singerpoet

singerpoet · Answer

I can surely relate to you I'm afraid.  As you said, my whole body was full of these lumps for many years and of course affected circulation etc. etc.   I now have very few and not all the time, which I honestly didn't think would ever happen.  I found that if I religiously massaged each lump that I could find for as long and hard as I could they would eventually break up and go away.  It took a long time to get rid of all of them but it sure was worth the effort, and the discomfort of massaging each one as hard as I could was much less distressing than having them remain.  I remember a few years ago reading an article that touched on these regarding Fibromyalgia and I will see if I can find the info for you or the link.  I don't know that all sufferers of Fibro and CFS experience this.  The article said it was a deposit of somekind, anyways that's what worked for me and when I get some now and again this still works.  By the way I have also experienced them in my breasts and they too have disappeared.

hazymazy · Answer

Thank you so much for your support. I have decided when I next experience a flare up that I will nag my doctor for a referral and not take no for an answer. Its all so shameful. Last year I spent at least a good ten months in pain and I have been like this for several years. I saw a nurse this week and she advised me to ask for a referral when I next see my doctor. Having others out there who take the time to show they care makes all the difference so my thanks to you SuzCat.

SuzCat · Answer

Damn the British Health System! I'm so glad I emigrated. 
Push, Push, Push! Don't let your GP fob you off. Get yourself seen by a rheumatologist. Nag the doctor for all you're worth. No matter what you have, even it it turns out to be "just" fybromyalgia, (ha ha, JUST!) you need to get on a proper pain-care regimen under a pain specialist. 

I hope you'll be back walking the blustery coast-lines soon!

hazymazy · Answer

Thank you for your advice and time. I am in th UK and find that the only help I have had is painkillers which don't really help. I have been on them for arthritis ( wear and tear type ) in the facet joints, shoulder arthritis and I need a hip impingement op for both hips. Did wonder if a lot of my hip pain is from the fibromyalgia as well as my hip problem and the surgeon says he wont be able to get rid of all my pain. Had so many pain killers I've become sensitive to codeine amongst others. I have seen my GP many times and he says its fybromyalgia or his words were"it comes under the fibromyalgia umbrella". Well this umbrella isn't much help to me. I asked to see someone else or have the lumps removed and all he said is that there are to many which is true but I dont understand why he wont refer me. I am having private homeopathy which has helped with my eye pain and a swollen lower left leg (edema) and it seems to help a little with the pain but I cant afford to pay privately for other treatment. Luckily Dercums is rare but I would very much like it ruled out and the correct diagnosis so I could have the appropriate pain treatment. I think this would at least help me feel a little more positive about my situation. From someone who used to do a lot of coastal walks and aerobics and hold down two physical jobs I am now having problems walking and having to cope with this all over pain. I agree I should see a Rheumatologist or Neurologist but I think I will have to fight to get to see one. Does anyone else have these lumps. Thank you again Dusty if you have anymore advice I would be grateful.

dustybrown · Answer

What type of doctor are you seeing? You should be seeing a Rheumatologist or Neurologist for this type of disease. It is fairly rare, so it's pretty hard to diagnose. I would bring as much information about the disease to your doctor about why you think you may have it and see what they can do. If you are not seeing the right doctor, I would try to get a referral or seek one out on your own if your insurance will allow it. Good luck. 
-Dusty