Lets talk shoulders

Dercum's Disease
#1

HI GRANDMA SYLVIA

YEAH SHOULDERS what a pain mine are so full of lumps inside and outside that the slightest movements grind and is so painfull, the ones that cover the bones are the worst because when i hold my grandaughter she presses on them which make me cry out I get a popping sensation when i stretch out and when i asked the orphapedics about this he said that it is pressure on the nerves THATS IT NOTHING ELSE TO HELP,I have no strength in my arms onlt a continous ting-ling that i feel like a worn out geriatric.
well thats my moan for a day hugs to all from HELEN

#2

I can so relate. My shoulders can really get me down. When they are really bad I cannot lift my arms to do anything. Reaching for the phone at work is a real chore, not to mention typing on the computer. I am kind of short so it is very difficult for me to get the ergonomics right. If I set correctly for my lower back my arms and shoulders suffer, if I get it right for the arms and shoulders well you got it the low back suffers. No winning, what I really need is a box under my feet at work. Haven’t found one the right height yet.

#3

My DD started in my upper back then my shoulders…I can’t sleep on my left side as my shoulder kills me if I try to lay on it. I have used ice and heat and PT and exercise. The air condition vents when I worked blew cold air on them and killed. They would swell so I felt like my arms stuck out and would not lay down at my sides. I could not lift my arms to reach for something…I had to walk my fingers over my desk…I used to wrap elastic bandages around them tight…I rubbed every kind of arthritis cream on them…Now I can’t stand to have them touched they are so sore and full of lumps. The lumps go up to my neckand across to my back and down my arms. They encircle my shoulders with the most tender being in the front. They are just a mass of DD lumps. When I “roll” them you can hear the “crunches”. I used to think it was bursitis before I found out about DD. Talk about the weight of the world on your shoulders!!! The DD in my shoulders alone would be enough to disable me! The awful pain going up my neck and across my upper back makes even sitting at a desk impossible without pain. Typing this hurts so that is all for now friends!!!Hugs from Grandma Sylvia : > )

#4

Do you think it was the air conditioning that made the area in your shoulders really bad. Why Im asking ,is it just seems to me any kind of abuse or knock a person gets thats where the bumps seem to start to multiply and pain increases. Like, I started to play tennis and really enjoy it because for the first time my neck wasnt in pain. Now that I stopped my elbows are really giving me trouble and my hands are in more pain than they have ever been so I was just thinking that it my show me that no pushing any excesses even like freeezing down on these hot days.

#5

Yes, I do. It is like the DD does not allow you to do anything. Any physical activity that you do punishes you. You think exercise would help but every time it get worse. The only thing that has helped me in 40 years of trying is exercise in very warm water. I mean physical therapy warm not just pool warm water. Insurance usually just pays for a limited number of visits a year so I have been unable to figure out how to get enough pool use to help me. I am still trying to figure it out though. I definitely think cold air blowing on DD makes it worse. I also think repetitive motion makes it worse. I don’t know what makes it better!! : )

#6

You know, my shoulders and arms do the same thing, but not as often as they did back in the 80s and 90s. I also thought it was bursitis at the time. I still can’t lay on either side, but at least I can change the channel on the car radio without agony most of the time now. I wonder if these things settle down some when they have been there for a long time? I can’t imagine why else my arms don’t give me as much trouble as they once did? I hope yours settle down too. That pain is horrible.

Pamela

#7

Once a doctor told me that after a while the joint becomes “burned out”…but I think you just get used to being in pain in that joint all the time. Now, I just wish my hips would be burned out. This hip and lumbar pain is the worst I have ever had. I have to talk myself into standing up! I don’t want to get out of my chair and walk! I walk like a penguin and I can’t believe that people walk around like this for years before they get a hip replacement. How can they stand the pain? The knees are bad enough. The knees start years before the hips. But wait until your hips start! It feels like it is your lower back but it is the inside of your hip bone. Nobody tells you that! Mine are on fire all the time and laying down does not help. That lumbar where you can’t stand at the sink…it gets so bad you have to sit down on a chair and peel potatoes sitting in between each potato which you should not be eating anyway but why are all the good foods bad for you? It is not fair! Why can’t fried chicken and mashed potatoes with gravy be health foods? Yum!

#8

Well, I shouldn’t have said my arms don’t act up so much anymore! I woke in the middle of the night with both of them just aching like crazy! Today I can’t lift them. Its all I can do to rest the heals of my hands on the computer and type this. That’ll teach me!

Pamela

#9

Yeah, my knees started when I was a teenager and my hips started in my early 20s. I think a lot of my joints are “burned out” They still hurt a lot of the time and I do waddle, ( I call it the Frankenstein walk) but my joints don’t usually hurt with the intensity that they used to very often. I can’t stand at the sink either. Five minutes on my feet, and my right leg goes dead and my lumbar region feels like it is on fire. The connective tissue issues just keep getting worse as I age and my fat really hurts, but my joints aren’t as bad as they used to be. (and they were crippling for a long time) I wish mashed potatoes and gravy were health food too!

Hugs,
Pamela

#10

COR! those hips i agree mine seem to be on fire constantly with sharp stabbing pains and muscle spasms over the lower back,i keep telling myself i am to young for this pain i agree with Sylvia how do people waiting for a hip replacement get on.
The worst of mine now is in my right where i must be compensating for the broken ankle well my own fault.
surprising how we have so much in common but this also gives me comfort though i don’t know about anyone else it just helps me see that we are not alone and can support one another well wishes to you all from HELEN

#11

We all seem to be in the same boat don’t we? My hips especially my left are very painful. I can’t walk as fast as used to or just move from one point to another I move in slow motion now. I can almost feel the DD wrapping around my hips and legs preventing me from free movement. Forget standing at the stove or sink for very long much like many of you already mentioned. Cleaning my house is impossible, no vacuuming, sweeping, no way I am picking up a mop!

This is very hard for me I live with my hubby teenage son and three dogs. Can you even imagine how bad my little house looks! I am embarrassed to have anyone drop by because of the constant mess. I cannot keep up with it.

Beside the meds I take which make life tolerable. Working where I do I have access to massage therapy and acupunture both keep me mobile, for how long only God knows but I am thankful for both. I have been blessed to work around such caring and smart people who really care about healing. I would have cracked up a long time ago if it were not for them.

#12

The same thing happens to me, everytime I say Oh I am doing so much better!!! Wam the very next day I am flat on my back wanting to crawl in a hole somewhere. The DD just makes rounds like russian roulette (sp?). Where will I hurt today???

Actually my neck feels like its jammed down between my shoulder blades and my low back keeps biting me warning me it will go out soon and I won’t be able to get up. Sounds like a fun weekend for me!!!

#13

Well, I still force myself to vacuum once a week, but I live alone with 2 dogs and a cat. I tend to be very tidy so my place doesn’t get out of hand except for the dust and animal hair. I leave the vacuum out with the hose attachments and suck up cat and dog hair here and there as needed. I could not have kept up if I had been this sick when my kids were still at home though. A husband (most of them, anyway) would just make it that much worse! Mine died in 1981, God rest his soul, but he was a true slob! I picked up after him then, but I know I couldn’t do it now. Hang in there, Brennie. At least you are still working and that is an accomplishment in itself. Maybe you can get one of the kids to vacuum?

Hugs,
Pamela

#14

Brennie,

It sure seems that way! My right hand is twice the size of my left today, so I just put on a compression glove to try to take the swelling down. I suspect my whole arm is swollen though, and I don’t know what to do about that. I’m glad I don’t have to drive today.

Pamela

#15

Bless us all! We must be the most cursed women on earth. I often look around at all the apparently healthy women briskly walking past me as I ride in the grocery cart and wonder “why me?”…I am younger than many of them at age 62…I am a good person who has always helped her fellow woman and been kind to strangers…why am I cursed with every ache and pain possible? My purple balloon feet marched into a new doctor today a vascular surgeon who took me off the only pill which has helped my pain…the Gabapentin…to see if that is causing the swelling…so no more sleepy hazey dazey feeling…darn…that was all I had to get me through…now I’m back to constant intractable pain with no nap…I bet the swelling doesn’t go down either…and the big lipoma in my cheek throbs on…it even makes my teeth hurt…what say you girls…for those of you with the “apron” it sure is getting hot under the apron in this weather…I feel bad for those living in the flooded areas out west…hope all you DD people are OK…Grandma Sylvia if still afloat : )

#16

Sylvia,

I’m so sorry your doctor took away your pain meds! How miserable for you! Have you asked him to check into the possibility that your swelling is from Lymphedema? Just thought. We seem to be prone to it, and it also seems to be very underdiagnosed in the US.

I live in an area that is flooding, but my home is safe because of the low lands right behind me.
Don’t forget to use Vicks Vaporub under your apron if you begin to develop a rash! It works every time!

Hugs,
Pamela

#17

Pamela I am glad that you are safe from the flooding. I have been catching bits and pieces on the news. I usually won’t watch the news it depressed me! But we could use some of the rain you guys have been getting. We are in a serious drought situation right now. Its so typical goes from drought to flooding, no happy medium.

Grandma Sylvia, God bless you I can’t believe the doctor took away all your meds. Sometimes I don’t know if some of them are even human. I don’t get the sense of what some of them are trying to accomplish.
Hope they resolves the mystery so you can have some relief.

Hugs,
Brennie

#18

Brennie,

Where are you? Georgia maybe? (I know there’s a bad drought there) Hope this rain shifts outta here and comes your way for a while.

Hugs,
Pamela

#19

Yes, I had rotator cuff surgery 7 years ago on my left shoulder. The aliens have gone after that shoulder with a vengeance.

Pamela

#20

Hi everyone, been off for a while depressed and sad. I have read all the posts and we sure do all have a lot in common. The hips, lumbar, shoulders, neck etc. I’m with ya. My hips keep me from sleeping on either side for more than 20 minutes, as do my shoulders and lower back. I spent most of the night turning and then turning again. I do take Mirapex for restless legs syndrome 4 times a day and 1/2 Ambien and that helps until about 3 a.m. then the tossing game begins. I can only say ditto to all of you and keep you in my thoughts for some relief. Take care, LadyMary