Does anyone else have severe back ,shoulder and neck pain?


I have had an x ray, and MRI and yesterday I had a bone density scan…The Dr says I have bone lesions and he did the bone c=scan to see if I have more…I dont have the results yet but I wondered if it was because of DD…Maybe the “aliens” have invaded my spine…Anyone else have severe back pain??


My massage therapist found a bunch in my back before I ever heard of DD. I’m single, so that is my only suggestion.


I have many, many, many lipomas up and down my spine and around on my back. I have really bad back problems now but before DD never had back problems. I also have problems with 2 vertabrae slipping in my lower back and 3 in my neck. hugs, stonel


Sure do, dear!

I have a cluster of aliens around my lower spine. Heavy as I am, they are clearly visible on the outside, and an MRI shows that I have herniated discs right smack in the midst of that mess. It HURTS a lot, that mess.

As if that weren’t enough, I’m very large-breasted and that gives shoulder and neck pain. I stopped sewing - a craft which I loved and was quite good at, because every time I sat at the sewing machine, I’d get such pain in my neck ad shoulders - in my 'hump" area, that I thought I’d go out of my mind. I miss it. I hate going to Joann Fabric and Craft to get the cheap polymer clay when it’s on sale because I must walk past all of those lovely fabrics, which gets my brain rattling with all sorts of sewing ideas. I just bought a bunch of summer stuff for my grandbaby - a bunch of rompers and such, and I couldn’t help thinkin how much more fun it would have been to make them!

All that is to say, Yes I do have aliens in my back, along my spinal cord. It’d take a neurosurgeon to get them out, and that’s only if I can get my mind past the idea that they’ll just grow back anyway.



I have severe back pain with many, many lipomas scattered throughout my spine and visible from the exterior, yet no scans have show them. I have the electronic conduction test as a last ditch effort to show them and even that did nothing. I’ve seen two Neurologists and 2 Neursurgeons and no one will operate on them. One is pressing my Sciatic nerve and causing electrical currents to run down the backs of both legs and sometimes causing my right leg to go out from under me.

It’s very frustrating and painful to live with these tumors in my back, but I’m at a loss to find anyone willing to do the surgery for me. Yes, I know they’ll grow back eventually, but if it brought some relief for even a few years - I almost think it would be worth it!

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994


Horrible back pain, but I had a bone density test about 5 years ago and it was normal except for a compression fracture in my spine. I have heard of one person whose bones were affected by DD though. I hope yours aren’t.


i get severe pain from my neck over my shoulder and most of the right side of my collar bone. I queried this a year ago and i was told i had pulled a large muscle. I still get this intense pain around every 3 months and it lasts approx a week. my sis has the exact same pain and she is diagnosed with fibromyalgia


Let us know how the MRI turns out. I will keep my fingers crossed for you. Back pain is the worst! It starts in my neck with the big humps goes to my shoulders and upper back…but the worst is the lower back and tail bone area.
DD encircles all of my joints but the hip and sciatic nerve going down from the lower spine on the outside of your thigh kills! The lumps march all along like good little soldiers all in a row. Each nerve from my head to my stoe is in the clutches of the aliens. But oh yes…the back in a primary target. Sorry you are getting so many painful symptoms. Hope your doctor will help you. Hugs…Sylvia


Absolutely, the tailbone pain was one of the first nodules found but we didn’t know what it was then. They did an x-ray to make sure the tailbone wasn’t broken by one of my falls but nothing showed up; however, my doc at the time felt of the area in question and felt the nodule (plus I think I made marks on the ceiling where I jumped so high when he touched it). I now have nodules in my lower spine and all along my spinal column. I had an MRI on my lower back recently just to see if there was anything other than the nodules causing the pain; however, I no longer see the doc that ordered it, so I haven’t received the results yet. Will be requesting that they send a copy to my current doc this week. I cannot stand more than a few minutes without having to lay across my kitchen island (perfect height) to relieve the pressure on the nodules/fat deposits near my spine and in my buttocks. I have the horrible nerve pain going down my legs too.

Mine has progressed to the point that I cannot stand, sit, lay down or anything else to get any relief from the pain. I am also dealing with the swollen legs, ankles and tops/bottoms of feet but not my toes all the way up to mid-thigh area where the swelling stops. That alone is so painful that it feels like my legs are going to explode/rip open.

Most doctors (various specialties) have told me that if these nodules are around/near my spine, tho they down’t seem to show up in any diagnostic tests, would be too dangerous for surgical removal. That tearing one of these nodules/fat pads away from any nerve in your body could cause more harm than good and could cause irrepairable damage including paralysis of that nerve or area of the body.

Since surgery (or any type of invasive procedure) is one of the things that throws me into a severe autoimmune excacerbation/reaction. I have to be very careful of what things I can go thru and what I can’t. Surgery is one of my no-nos unless I want to be virtually bedridden for a year or more.

Good luck with your decision but none of the docs I’ve seen recommend any type of surgery - they say that it is too risky especially if nerve roots are involved - and said that the would find it highly unlikely that I would be able to find any surgeon who would recommend surgical removal of any of the nodules, especially since twice as many show up at the incision site soon after any invasive procedure (biopsy, etc.).


Back pain, what a true joy isn’t it? I have hernieted discs at c4,c6 and c6, also T11 and L5 S1, alienas on both sides of my spine from top to bottem, huge mass on my left hip. I cannot stand for very long, I used to love to be in the kitchen cooking, but not any more its too painful.

I also always loved to crotchet afghans I have several I need to finish, but the pain from my neck and shoulders that go down both arms make it so painful I just can’t enjoy it anymore.

It seems this has taken many things from all of us that we enjoyed. I used to bowl it was the only sport I ever liked or was any good at. Can’t hold a bowling ball anymore. It was the one sport my husband and I did together. He loves sports and has always been great at them, he still plays baskettball, softball, he still bowls,


OH MY GOSH your back pain sounds like mine - well - minus the tail bone. When you said I cannot stand more than a few minutes without having to lay across my kitchen island (perfect height) to relieve the pressure on the nodules/fat deposits near my spine and in my buttocks, I was nodding my head!!! One day hubby asked me to do something for him, make him waffles for breakfast, so I was but ever so often I had to throw myself across my chair, he said oh the drama!! He said if its this much trouble just forget it. I coulda smacked him. DRAMA ???

I told him there was no drama involved, I just simply can’t stand for very long. My MRI did show some fat, I have to find the report and scan it in so I can send it to dr Herbst.

I didnt realise that this could be from lumps and bumps tho. I will have to feel myself up, oh what a thrill, to see if I have lumps and bumps back there. I have problems with some areas of my spine.

Surgery is OUT OUT unless they can tell me for sure it would give me relief.

Anyway thanks so much for sharing, next time hubby says I am being dramatic,
I will show him your email.

MEN !!!



Bowling ball - Brennie - I got the Wii nintendo system because Wii bowling is just like real bowling - well as close as one could get. The only thing you lift is a remote control, but it is a blast. People are even starting
leagues with Wii bowling.

I went to my sons house and tried it, and came home and found the system and ordered it. We too used to bowl all the time. I made flyers for the bowling alley, and we traded free bowling for the flyers. So we didnt have to pay, except for leagues, and I was in 3 !!

I had so much fun with it that hubby said he had to get it for me, was the first thing to bring a smile to my face in a long long time.

Hugssssssssssssss to you, and let me know if you try it.



Me too, Calle. I often have to bend over at the waist to ease the pressure in my low back and hips. The only dramatic thing about it is my enormous rear.


I can feel lumps in my back, I was thinking of asking hubby to go on a lump hunt for me, but i think he might think his luck is in…hehehehe. Anyway getting back to the back pain, I went into the kitchen yesterday and washed 3 plates, knives, forks and two cups…i thought my back was going to snap…the pain was worse than ever, I have experienced back pain whilst washing dishes but always put it down to my weight issues…golly how wrong i was…I went to the docs today to try to get other stuff sorted out fatigue, headaches, bowels…etc and joked to hubby, ‘all he is going to say is lose weight’ oh i forgot skinny pple dont suffer with fatigue, headaches or bowels…i had it all worked out in my head, he is sending me for a blood test…whhhhhoooooppppeeee i may get somewhere…


Really - who do you ask to look for lumps for you ? I haven’t figured that one out yet. Hubby shudders every time I ask him to feel for a lump or bump so hes not a real good source. Maybe my mom when I get back to calif and we go swimming. Right now I have no idea about lumps in my back. I hadn’t even given it a thought that I might have lumps there.

Who can you trust ?? Who do you ask ? If you figure it out, let me know! LOL

Carin/Calle in AZ


Hi Calle, as far as i can tell i only have the ones i can feel myself, (lower back), i always get glazed and rolled eyes when i talk about it, i find pple arent all that interested, i get sarcastic txts every week asking if i am playing darts ‘tonight’ when i reply back saying cant play just yet as my right arm is in extreme pain. I get sarcasm back…who needs enemies with friends like tht…hubby isnt bad really, just cant get him to fully understand what i am going thro. my daughter brought me painkillers the other morning i was in too much pain i couldnt get up. its a long process to get the message across.


I ask my massage therapist friend to count them for me. I have 57 just on my back, I haven’t finished counting them yet


Thought i would just say that i totally agree with the back pain out of everything we suffer from with DD THIS IS GOT TO BE THE WORST from morning to night as well as during the ever so long bedtime hours it screams at me to stretch,to help with the the neck stiffness with the hump and relieve pins and neddles or bend in different ways to try and free up my lower back muscles and hips as these are totally invaded,doc actually prescribed some sleeping meds for a week as i was really starting to struggle with only 2 hours a night, he said that should be enough to get my sleep pattern back [who’s he kidding ] sometimes his great and sometimes i’m sure he forgets what he is treating me with,though i have to say my breathing and low sats have to be taken into account when prescribing any meds. Well sorry for venting so much was only meant to write a couple of lines it’s surprising how much we let out when we start to type well time for bed for my 5 hours if lucky
try to have a good night yourselfs hope you all have a painfree and restfull sleep gentle hugs FROM HELEN


I should be trying to sleep but I just “read the thread” and you guys kill me! We are all so much alike…you are my real sisters. No one knows the horrible pain in the butt like we do! It they think we are a pain in the butt, they should walk a mile in our lumps! : ) I can’t stand at the sink anymore so I don’t. I drag a lightweight chair around with me and sit. When you try to peel potatoes sitting at the sink and you are 5’3" it make the aliens in your shoulders and arms scream…so then you go with instant potatoes. I don’t have an island to throw myself over, I am jealous…I would probably be too short anyway. I sit on the bed and lean sideways and try to stretch the muscles. I use two massagers in my chair…vibrating and kneading…the vibrating one wore out again today so have to pick one up tomorrow. They don’t really help much. I am big on ice bags but you have to use a plastic bag or you get your chair wet.
I had another migraine this morning and had to use one. That makes about 5 in the last few weeks. A massage therapist said my lumps rise up to meet his hands. They like a nice massage even though it hurts. My husband feels a lot of my lumps…I say feel this one or feel that one…but he has only felt about 100 of them…just a start. I had my daughter feel some in my arm just so she could know what they feel like. I also made her read about it. They have no idea and I always feel like they don’t understand how ill I am. It does not do wonders for your marriage when it hurts if you are touched anywhere. I used to have my husband give me massages (still might). When he got down toward my lower spine, the pain was unbearable. He found lumps everywhere. Those are my most painful lumps. It hurts so bad to sit. I use an upholstered rocker recliner as the movement helps some. I’ll just keep rocking and vibrating and drugging myself until I come up with something better! Hugs and Grins to you all, : )


Yep we are sisters! Sylvia, except for the husband and drugs, I could have written that. (Oh, and I am only 5’2",lol)