Hey everyone, I’m back online, had a computer problem and had to shut down for a bit. Anywho, I just started with painful joints, sharp pains in left elbow, left knee and right knee, already have same in both hips, lower back and buffalo hump. Every inch of my skin and bones hurts to touch so I’m not surprised the joints have begun…my question is this…what is next once the joints start to react? Thanks for any info you can give me. Ladymary
Lady Mary…Next if you have DD comes the aliens…the painful lumps. You may already have them. They are hard to miss if you press hard enough to feel under the skin. Big squishy lumps or hard lumps like grains of rice. They may be in lines or clusters. Your buffalo hump is probably a big one. Some of mine grow along nerve pathways like the sciatic nerve that starts to the side of your spine and goes down the side of your leg…OUCH!
These lumps make it hurt to sleep on my side. Anyplace you form new fat it may be full of lumps…lumpy fat…that is us! And, the defining test…each lump hurts like crazy when you press on it…or if anyone presses on it…or if your clothes press on it…or if you sit on it…Lots of them are on nerves so the pain is bad.
I am a 42 year survivor/sufferer so yours may not get this bad yet. If mine were all removed I would be back to my college weight! : ) Did I mention the hundred pound weight gain? You can gain this on a diet of celery and hard boiled eggs or you can gain this on a diet of mashed potatoes and gravy…it doesn’t matter to the evil aliens so you might as well enjoy yourself! Oh, yes and get out there and walk a few miles a day on those painful lumpy feet when you are done at the gym. Even though every movement hurts like you know what! Sure, the doctors will tell you how easy it is…
Gentle Hugs…
Grandma Sylvia
you ain’t joking the pain of walking walk so far both hips start this alful locking pain. and I know about that 100 lbs. crazy my husband just lost 40 lbs I think I gain it and we eat the same things cazy. I’M Having seisure like spells when i wake in the morning time sometimes I can’t move he gets me moving and i’m all jerky i have a lot of pressure on my head it fills like. might be migraines. I don’t know i have these stupid knots all over me solid. even on my head. does any one else have this or had it. hugs to everyone joy50
Joy 50,
I have seizure like symptoms too. Ativan works very well for me anyway. Everyone is different but there are medications for it. If its not one pill its another right. Funny thing is I went to my internist to get off of my measly 5 prescriptions back in late 05 and in Nov. he diagnosed me with Dercums disease.
Now I am on at least 14 prescriptions. I too have that pressure. I started getting lipomas in my scalp after I totaled my car a couple years ago. I hit my head twice on my dumb car’s sunroof. Yeah Ouch it hurt like H&^$! I still don’t have a car but I dont drive much these days.
Hugs, linda
Hi all, thanks for the input, I do already have multiple lumps and knots, the new pain in the joint just happened like that, I went to get up from the couch and used my hands to brace and the pain shot thru my elbow, now it feels tight and the pain is there like an ache, I too have the laying on my side problem, one hip then the other starts to ache until I have to change sides, if I lay on my stomach I can barely move due to lower back pain…so much pain so little help. I keep a good attitude but the sadness creeps in and I lay low for a few days. Well, thanks again, just one more elbow to go and all joints will be affected. Bye for now, ladymary
most of DD sufferers are diagnose with fibromyalgia too, so far i havent had this diagnosis. i am seeing a rheumatoidologist soon and i feel i will get the diagnosis as the pain points are the same as DD only without the lumps. I too suffer extreme headaches and my doctor has prescribed amatriptaline (sp). I have numerous aliens in all my pain points apart from my finger joints and wrists.
Oh isn’t this all the truth. I have been suffering for 13 years, but only now discovering what it is. My right arm hurts so bad, especially in the elbow. Upon palpitation of the elbow you can feel “pearls” down inside. My elbow also bruised before this with no explanation. I didn’t bump it at all before. Second was severe itching. My skin felt like I had ants biting it. Then, the pain. I started getting numbness first in my fingers on my right hand. The pinky, ring, and middle finger. The numbness goes up to the elbow. I also get sharp pains radiating from the elbow going up the backside of my arm to a 2" lump. I feel like I have a ball under my arm all the time. I think this is the one that is causing all my grief. The size of that one changes from time to time as well as the pain.
I have about 300 or more around my midsection. They are so difficult to count. The ones that I am concerned about are the chain I have over my kidneys that continue down my sciatic and down my hips. They hurt if I stand for more than a minute. I walk through the grocery store and I come out dripping wet. The pain and this excessive sweating thing, (from what I understand is either from my hysterectomy or DD) Whichever…stinks.
Hugs to all that can stand to be touched…
Christine
Whoa Christine you sound like most of us and I feel so for you. I hate this sweating thing, dripping wet most of the time even in cool if I exert myself even a touch. I wanted to ask about the 300 or so lumps around your midsection, mine as well is very large and is my biggest heartache, no matter how small I am anywhere else my midsection is huge, my shorts fall way below and nothing will fit that area…how do you know you have all those lumps, what does it feel like? What do we do about such a problem? thanks for listening and I hope to hear on this matter. ladymary
My lump in my midsection feel a bunch of knotty fat and they grow in rows i
have one big roll that bags down and it feels full of knots there is another
on starting above it. They hurt when i touch them. I too sweat too when I
over exhurt. sorry about my spelling i could spell before all of this stuff
strarted now i sure can’t with all this brain fog but that’s another story.
love Teresa
Hey joy50, I saw your name and in 2 seconds forgot it. I think we all have some form of brain fog…I know when I’m hot I think very unclear, stumble and just feel I can’t stand it another second. My midsection too is hanging a bit now and feels similar, all knotty and in rows or in bunches whatever discribes the mess. I can’t seem to lose any weight and seem to just hang on to this mess and more. Oh well, gotta hang in there with it I guess. My best to all of you and look forward to hearing from anyone who needs to vent. hugs all around, ladymary
I have hundreds, maybe thousands, of lumps across my midsection. It feels like a huge bag of dried pinto beans.
Really wierd.
Pamela
More innocent victims! I am so embarrassed by the sweat and no it is not “flop” sweat. I think the intense pain makes us sweat. Since I am using my wheelchair and scooter more I can go out in public without drenching myself. I look around wet as #%$ and no one else is sweating. Those aliens that go from your spine in back and all along the sciatic nerve are the worst! I can’t sleep as they hurt so bad when I lay on them. They started out softer and now are as hard as marbles and they go all down the outside of my leg to the knee. They are really bad as you can’t even lay in bed without pain.
I roll on pain stuff with capacian and take a bunch of pain pills and Excedrin PM and try to sleep. We don’t really sleep much. The ones in my butt make sitting hurt. It has to be the same disease in all of us as our symptoms are all the same. DD has so many effects on different parts of the body we think they can’t be related but they are. If it was fibromyalgia which most of us have also…I can see our bodies not processing pain right…but these lumps do not occur in fibro alone…and you can not miss the lumps.
What are the lumps made out of and why do they grow along the nerve pathways and why do they have those awful tentacles squeezing the nerves and hurting us so? Why do they like fat to grow in? What makes us grow that awful hanging “apron” of fat? The DD wants more fat to grow in so it makes our bodies grow all these really big fat cells. Abnormal cell development is what cancer is. People with cancer are told that fat is bad as it encourages cell growth. Why are our bodies making all this painful lumpy fat and how can we STOP it??? Help! I hope that some of the cancer researchers are aware of us and can use some of our info to cure us all someday. If you know of any cancer researchers educate them about DD.
Hugs…
Grandma Sylvia
yes I be sitting relaxing and at the same time be sweating buckets. I found a new fact today about my sister, she too has Dercums Disease, she has lumps in the same places i have, and she complains all the time about pain in her elbows, for almost 7 years she has been misdiagnosed as having arthritis, she has however been diagnosed with fibromyalgia.
I was sent a questionaire from Dr. Herbst. On it she asks for you to map out your fat and bumps. (LOL…where isn’t it) Anyway, I did the best that I could and I came up with about 300 or so. They are very hard to map when they are right on top of each other. Some of mine are like grape clusters.
BTW…that biopsy that I had…well, lets just say I won’t be doing that again. I now have 2 where I only had one before. They are piling right on top of each other like it’s ocean front property or something. I think they are building a condo in there. Like I need any more in my elbow…NOT!
Sorry that I am sounding a bit sarcastic today. It’s difficult when I am so frustrated. I just want to curl up in a ball and hide from the rest of the world. I am tired of people judging me by my size. I hate it when they tell me oh sweety, you’ll feel better if you just exercise a bit. OK…that’s just what I want to do. Can barely move my arm, but sure…why not make the rest of my body hurt. I do as much as I can in the pool. That is the only place that I feel free enough to move around.
My usually strong husband is ready to crack…remember, I said that this is all new to me…like since around the middle of July. He has taken on a 3rd job and is frustrated too. He doesn’t understand why there aren’t any doctors out there that know about this. I have tried to explain and he isn’t very confident about the doctors out here and is frustrated that I have to wait so long to be seen. The doctor called today and boosted my neurontin to 2400 mg a day. just keeping my fingers crossed that this is going to help some. Already I am frustrated with the weight gain that I can’t afford. I am sure this doesn’t help my husbands frustration either.
My heart goes out to each of you. …and your support people if you are lucky enough to have them. Our husbands suffer too. My husband has put up with 41 years of DD. One of our first outings was to take me to the doctor so I always tell him I never claimed to be a well person. He is a saint but I know it is hard for him to have to take on more and more of the household duties. He is five years older than me and wears leg braces but can still walk around where I really can’t anymore. I did the bulk of the housework and child rearing for many years as he had a physically demanding job and I respected that as I had an office job. He worked nights for many years so one of us was available when the children needed us during the day. He was trying to stay in shape somewhat as we hoped to take some road trips. Now, I can’t stand to ride in the car very far as my diabetic neuropathy in my feet makes them swell and hurt. I haven’t driven for almost three years now. IMPORTANT…I suggest that you print up a good article about DD and give it to your husband and children to read. Make them read it! I have found that my husband can relate better the more he gets educated about DD. I have read aloud some of the comments on Careplace that I relate to…most of them…and he understands better. Of course, you have to turn off the TV. Fortunately we both share similar interests…reading…movies and educational shows on TV…our children and our grandchildren take up most of our time. We are also big bird watchers! The rest of our time is free to go to the doctors. I had an appointment every day this week. He puts my wheelchair scooter in the back of the minivan and off we go. With gas prices we are spending a lot just to get there! For those without a spouse I would recommend printing up some material for your sister or friend…and of course you always have us…your Careplace support people! Hugs, Grandma Sylvia