I can barely use my left hand due to pain in it…My back is hurting like he-- and I cant bend over due to back and hip pain. And my neck (at the base of my skull) is severe painful.Whats happening to me??? I think Im getting worse…I cant do anything…Has anyone else had this happen to them?? What did you do?? I already take Neurontin …can I take the Tramadol as well???
That happens to me occasionally, but usually resolves itself after a few days and then it hurts somewhere else for a while. Sometimes I lose the use of an entire arm. My left wrist has obvious tumors in it and I always wear a brace or support on it now. That helps. Other than that, my advice is to treat the pain and wait it out. It will likely get better just as suddenly as it got bad.
Pamela
Amen to what Pamela said.
My pain was out of control like that for years, and we tried different combinations of drugs until we came upon heavy doses (3-100mg capsules, 4 times a day)of Neurontin/gabapentin, and a middlin’ (60mg, 2xday) of Cymbalta. Those two together managed to tell my nervous system to pipe down about all of those tumors! Often, I still feel pressure, but not the burning, aching pain.
You and your doctor have to work through the combination that’ll work for you.
Hugs, dear. Hope this passses soon, or that you find relief soon.
me
Instead of passing it got worse…I fell down and hurt my other arm and now there is a lump in my forearm there…Surely this stuff has to take a breather from all the stuff if causes…Doesnt it??
I get pain in my lower back and left hip. Usually when i am lying in bed or if i sit upright for too long…8 hours at work usually. The pain in my neck i seen a physiotherapist and he gave me exercises to do…too my amazement it worked. the pain spanned from my neck across my shoulder blade. when i feel it coming on i revert back to the exercises. I am in the process of trying the exercises for my ‘golfers’ elbow, but its not working, i think i have developed carpel tunnel too. I have to go back to see him about that. …then when thats sorted i will start him on my lower back and hip. I will keep up updated on the progress. In the meantime I take paracetamol, Ibropofen, and codeine phosphate for the pain. I take all of those before bed, but i usually stay away from the codeine as it makes me drowsy.
My pain moves around, its like my body spins a wheel to decide what is going to hurt today. My neck, shoulders or low back and knees and ankles??? Its always something.
This week my neck is really bad. All I did was reach up to brush my hair and snap my neck went into major spasm. Couldn’t life my left arm or turn my neck to the left. This was bad timing because I was not home I had gone to get my car fixed and the drive is about thirty miles. It was an excruciating drive home. And HOT, its already almost a hundred degrees here and my AC went out in my new car. Not a good week. :o((…
Last week it was my legs, I could barely walk, they were swollen and I could feel the aliens growing in them.
I take Tramadol, for daytime pain in the evenings I take Voltaren, its an anti inflammatory. They both help but nothing ever makes the pain go completely away. I also take Zanafles for the musle spasms. At night my legs are really bad, I have restless legs too.
I was going through a period of extreme fatigue, working was so hard I barely could get up and go in and I felt like I was useless most of the time. My brain was in a deep fog. I am doing much better this week and my energy level is up. I started back on my B12 vitamins and an Omega Complex and it seems to be helping. But we all know how fast a good day can go bad, takes about a split second and I am wiped out. It makes me angry and frustrated because I can’t find a combination of meds and vitamins to keep on a even level. I guess thats the demon of DD, we never know, its a mystery.
Hi Brennie,
Sorry to hear you are having such a tough time of it. I have periods of time like that but, thank goodness, I also have days when it isn’t so bad. I wish you more of those.
Hugs,
Pamela
I am doing better now. I had my massage therapist and chiro work on my neck friday and it is still there but the pain is not quite as intense as it was. I also have a tens unit and that helped alot, along with ice bags.
I went early Saturday morning and got my AC fixed in my car, then took my Mom with me to see my daughter in Austin. Her wedding dress just came in and she went in for her first fitting. Its beautiful!! She’s be a gorgeous bride. She is ready to get it over with. We still have tons of work to do, and time is slipping by very fast. Sept. 20th will be here before we know it.
Thanks for your support, What a rollercoaster ride this is!!
Love,
Brennie
You are so right Brennie…Its always up or down…Never a happy medium…I am trying to lean house and it hurts to do it…I did all I could…I can only do so much them I start severe pain in back and legs…I just want some peace and some “normalcy” back…I couldnt even clip the bushes for very long…Mostly its the severe pain and severe sweating…anyone take anythiong for the severe sweating?? I am dripping sweat even in the air conditioning when I do anything…
I wish I had something for severe sweating, its hard to get cleaned up and dressed for work because I can’t get dry, my hair is all sweaty and I have the AC turned down really low so its as cool as I can get it, but I am still sweating.
Its already in the 90’s here in Texas and I feel like I wilt everytime I take a step outside. I can’t wait until the 100 degree weather gets here :o(… I have lived here all my life and the older I get the harder it is for me. Last week the AC went out in my car! That was not fun at all, I was a soaking mess going to and coming back from work.
I can’t keep my house clean, I work full time and by the time I get home I can barely move, I get dinner going if I have the energy. My son has learned how to get a lot of his own meals ready. My husband is working nights right now so I don’t really have to cook that much. Plus the past two weeks I have developed severe adema in my legs because of a change in my blood pressure meds, so standing and cooking is out of the question.
Anyway my house is really small, My husband and fourteen year old son and three dogs!! There is no keeping up with all that for me. I do the best I can, I have little signs all over the house with sayings like “If you want to come see me come anytime, if you want to see my house make an appointment!” and Dust testing in progress do not disturb samples, things like that. It reminds me to smile and do the best I can. I am still embarrased when someone shows up unexpected and I didn’t have time to pick up and make it more presentable. But I can only do what I can do. My husband helps me a lot but he works all the time too, plus has tons to do outside, a garden, and he is building a chicken pen because he wants chickens so we can have fresh eggs. And he has a lot of other projects he is working on.
The roller coaster is a rough ride but every now and then it does slow done and lets us enjoy life. I sometimes reread my posts and all I seem to do is complain. I am blessed in so many ways and I could have it so much worse. I feel ashamed when I start to feel sorry for myself. Its hard to stay positive when you are in pain all the time. It wheres you down. I get so tired of fighting it I just want to lay down and not get back up again. But God always shows me a way.
God bless,
Brennie
tumor growth has stepped up…I have new ones where I hurt my arm 3 weeks ago…My legs feel dead…I feel new ones on my knee caps…Im sorry I dont write much my friends here…Im tired and hurting…I thought I was stung by bees,oh no…its tumors…so sick of it all
I am so sorry sweetie, been there its like you have been attacked by a swarm of stinging aliens that are he&& bent on destroying your life. My legs have been swollen three time their normal size for three weeks no, I think they may be on their way down I see signs of having ankles again, Mine was caused by a reaction to Blood pressure meds but I am having a hard time readjusting. my skin has been stretched so tight all the way down the tip of my toes.
But as the swelling decreases I have noticed more aliens all around the back side of both my knees and a few down my legs. Had to stay home from work yesterday to keep my feet elevated. It helped a lot but they are still swollen I have to go to work today so wish me luck. Last week I would swell so bad I couldn’t set at my desk bending my knees was too painful. I just want it to go away and leave me alone. I want to be normal. My boss has been very understanding of all my ailments lately, but even she will get fed up with it someday. I am surprised she hasn’t already.
I have had something new pop up every week and usually have to leave work early to go to a doctor to figure out what to do next. i hate leaving early and leaving my work undone. Makes my feel useless and how long can I continue to work like this? I have always enjoyed my job, because of the people who have become dear friends, life long patients who are very special to me. If I leave work its like I have given up and I am not a “give up” kind of person.
I am so sorry I have been really long winded lately. Got to go to work now.
God bless you and everyone here on Careplace, my all have pain free days and tons of gentle hugs.
Brennie
I have found that I have to be very careful that what I eat does not have Msg.I swell and hurt more,eating out ,salad dressings,just to name a few. Also I have found when I eat similiar to how Dr.Herbst recomended that helps alot. I did this by just doing the south beach for two weeks just for a try and it did make a difference,I hadnt done it to lose wieght but to try and eat more properly.The first two weeks helps get rid of cravings for junk.And the first two weeks has no starch, hardly any red meat, or dairy it seemed to really help like I said .Its really worth trying just for the pain relief.REmember no stressful exercise that creates new bumps and stress. Live a calm life. Hope this helps helped me
Ladymary, I am with you about the heat, it is so hot here in Texas right now. Its been in the high 90’s and a 100 degrees more a lot lately. But the humidity makes it much worse. I just spent the weekend at my daughters house and they don’t run their AC very low and I sweat like crazy, My hair stayed wet and my clothers were all damp. Feels disgusting.
I have a lump at the base of my neck too. The pain radiates down both arms causes shock waves sometimes. I had about seven lumps taken out over a year ago, but they grew back and brought friends. So I won’t be doing that again.
I hate that other people have this miserable disease but it feels good to have people to vent to that really understand the pain.
God bless and gentle hugs to all.
Brennie
Hi all, boy this heat is a killer, feel nauceous and also sweat even in the AC, can’t do anythin outside for any length of time, pain in lower back when bending over for even a few minutes, weak and very tired burning knees and legs just up and down my yard or up the stairs, shortness of breath and rapid heartbeat, depression on and off like a pair of shoes…my new question concerning the neck and shoulders is does anyone else have the hump just below the skull, I think it is referred to as a buffalo hump…my depressing pain seems to generate there and goes across the shoulders…also I have noticed a lot of swelling in my abdomen and feeling so huge, up 7 lbs. one day and then down again in 2 days, I couldn’t even keep my shorts up as it was like putting clothes on a balloon. Man, I can’t believe each time I read the forum someone talks of something that I had just prepared to ask the forum about?? I guess we are all in this same pattern…hugs to all of you… LadyMary
Yes, I have a buffalo hump. That is actually characteristic of Madelung’s disease. Some of us seem to have a combination of DD, Madelungs, and Lipedema. (Sometimes 2 of the three, or all three) These diseases seem to be very closely related, according to current researchers of all of them.
Pamela
On the Madelungs subject does flappy arm fat underneath the top part of the arm go with it too as well as with DD? My arms are noticeably flabby and never have been about 2 ins. or so hanging down and lumpy and painful as well. I have rolls of fat that have started down my back and of course the apron and much larger sagging chest as well. I eat only whole grain, low fat, low sugar, no cakes, white stuff, cookies etc. just an occasional low sugar/fat frozen yogurt or ice cream. I try to do some exercise even if just out in the yard for an hour or so regardless of the heat just so I can manage to keep my weight near where it is now, I know my body wants to gain weight and that is hard to accept. I haven’t fallen but I have tipped to either side and am forever banging into things when I turn right or left because of balance. My legs feel like I’m losing control of them when I’m hot especially. Gees, I’ve gone on haven’t I? PS. I don’t care for liquor or beer but i understand Madelungs might carry an alcoholic stigma with it? thanks all, Ladymary
Naaaah, there is some old literature that says DD may be common among alcoholics too. I think that was assumed because people were medicating themselves with alcohol and had become alcoholics by the time they were diagnosed! The fat on your arms sounds more like DD. Madelungs makes lipomas too, but they aren’t painful. Madelungs has it’s own set of problems, though, and is more common in men than in women. Dercum’s is the other way around.
I stumble quite a bit, but I haven’t fallen so far, except when I slipped on soapy wet steps recently.
I have found more lumps…Its like it comes and goes…develope lumps…stop for a bit then new ones start…I am having the same thing with my stomach too…It feels like I have a balloon in there sometimes making it extremely hard to breathe alot of times…My right leg is bigger than my left leg…There is a big pad of fat just imside my knees on the calf but its bigger on the right leg…Is this part of DD???I am just tired of being tired alll the time…I added alot of what Dr Herbst recommends…How long before I feel any different?? Will the DD ever go away or reverse??? I hope so…
Hi E, boy I feel for you so many things going on. If you are affected by the heat the way I am I can see how you might suffer from swellings, fatigue and pain. I am also having bouts of depression/anger and a bit of forgettfulness and dementia symptoms have begun. I thought the car died the other day and pulled over only to realize I had forgotten to continue to give it gas, I got lost twice in very familiar areas and drove around very frustrated for over an hour and a half, I went to a coffee shop and put the splenda packets in my wallet instead of my coffee and then got up and got more, my friend laughed and said I had just gotten them and put them in my wallet, there has been something each day now for 4 days…it is rather disturbing…Today I was just angry and extremely fatigued, soak and wet…any others?? E, take good care and keep asking questions as it helps us all to talk about things…I just hired a girl once a week to help me clean, she comes for just under 2 hours and we conquer things together, me mostly directing and she cleaning etc. It is more fun and social too. God bless all and Happy 4th. Ladymary