Does anyone else have different levels of pain??I was lying on the couch as I must do every day at 3 and my thigh (back of my thigh) was in pain but it was like deep in the tissue…I am having more of this type of pain.I didnt feel a lump at the exact spot but just down from it there was several…I hope Im not losing my mind…
Nope, not losing your mind. It is almost a pain deep in the tissue almost feels as if it is in the skeleton or bone even. Have you read the article from the Swedish Dercum’s Society yet? I will forward it to you if you want.
Yes, there are different levels of pain and different kinds. You should hear my trying to explain it to my SO sometimes. Anyway, I didn’t know it was possible to experience some much at one time in our bodies.
I didnt know that one could feel so many types of pain all at once…The stinging pain in my arms and the deep pain in my thigh.Im up now at 2 AM because I was hot and sweating…I thin its hot in the house and turn the heat down til Im confortable and my husband gets mad cuz then he is cold…
You are not losing your mind. I get them too! another great perk of this disease.Have you suggested a tens unit to your doctor before? You should try it. Without taking more pills you can use the electric mode pads on the area hurting you and it attacks the nerve pain. It helps me through bad muscle spasms and new growths. hugs to ya!
Linda
No sweetie you are not losing your mind. I was really relieved when I was diagnosised with DD, it explained all the different pains I had been having. I thought I had a lot of different diseases but it turned out all the different pains were all related to the DD. That was an up side (if you there is one:( to this situation.)
I have pain in my left hip so bad I can barely drive my car right now. And I have recently started having strange painful feelings in my neck. Not like a stiff neck it feels more vascular. But I complain of so many different pains my husband jokingly said if I was a horse he would have to take me behind the barn and shoot me. Ha, Not FUNNY! He didn’t mean it of course but there are days when I think that might not be a bad idea. NOT REALLY!
I agree with stonel, a TENS unit is very helpful, the frequency it set to block pain. It sure comes in handy I have had one for years.
It just kills me. Every time a topic is introduced we all have the same comments. I have told my husband so many times to just take me out and shoot me. I used a tens unit off and on for thirty years. It does help but the pads take my skin off after a few days. The electrodes kept coming off at work when I tried to pull down my pants to pee. Sometimes the wires hung out of my pants! I would sometimes accidentally turn it all the way up and shock the hell out of myself for a few moments. Now I would need many pads the size of Georgia to cover the pain area. I put the unit in my bra and used long wires to put the pads on my lower back. It looked like I had three boobs. As far as the deep pain…I feel like taking a knife and stabbing the lumps in my lower back tailbone area. The deeper layer of lumps sometimes come to the surface for a rubdown. : )
I just thought That it might be relevant, but does everyone here know that the body has enough nerves in it to go the length of Route 66 … 6 times?
Odd, isn’t it? On the other side, with that many nerves in one body, how could anyone not feel that many different pains? Our bodies were made to let us know where damage is taking place. So, it would let us know where two different cuts on our skin is, or a whole plethera of scratches. Why wouldn’t we feel so many things at once? Our bodies are designed to do so.
I don’t like the thought anymore than any of you do, but at least there’s reason, and not an excuse.
Perhapse a neuro inhibbitor might dull the pains?
I have the lower low back/tailbone pain too. The pain meds I take do nothing to help it. I just had an MRI on this area and will get the results the end of this month when I go back to my doctor. I know that I have had recent explosions of lump growths in that area but, of course, they will not show up on an MRI.
And, yes, we all seem to have similar backgrounds and current issues.
I told my friends that it feels like we are all related because of such similarities.
Hugs to all,
Benita
wow…the Dr who did my exam for Soc Sec disability pressed on areas in my lower back and he said he didnt feel any lumps and I should get it xrayed as it is some other kind of problem…I asked Dr H if an xray was in order she said it probably wouldnt show anything so Im not wasting my money…the nerve conduction test showed nothing so I guess the Drs are thinking I am a hypochondriac…
I recently talked with my doctor about what test I could take to show internal lumps, I know where they are on the surface, but I have read that they grown inside and can attach to internal organs. So she sent me in for a cat-scan. It didn’t show any lumps, not even the ones I know are there. I am pretty sure the only way they can detect them is from an MRI.
Although when I had a lump pop up between my breasts. I had the ususal mammagram and then they used the ultra-sound. It showed the lump but the said it was “just” a lipoma. But that was before I had been diagnosis with DD.
I guess what I really need to know is MRI the way to find out more or are there other tests that are more accurate? I am at a stand still right now. My FNP is awesome and she makes sure I have the meds I need to keep going, but I need a specialist, but I haven’t found anyone who knows anything about DD. The doctor who diagnosised me does really treat it, he just removes them. That isn’t enough for me. They keep growing back and more painful that before.
God bless all,
Brennie
Brennie,
Don’t waste your money on an MRI - they don’t show the tumors either. I’ve had all kinds of imaging tests done and none have shown the tumors to this date.
I’m sorry you are feeling at a loss - I think we all do as some point. We get the diagnosis and then what? Nothing…because there isn’t anything more that can be done at this time. I’m there with you and
feeling very much like I’m watching my deteriorate daily and can’t do anything to stop it! It’s frightening and downright depressing I know.
All I’m doing these days is living with the pain, and trying not to think or dwell on DD. Trying to keep stress at bay as much as possible and that’s difficult, when knowing there is nothing more I can do as far as tests, etc. that might help are concerned. My doc doesn’t know much about the disease and has been great following Dr. Herbst advice, but that advice has stopped too, so now we wait, and wait and wait and hope and pray that answers will come soon. It’s a big burden for Dr. Herbst and I hate that I’m counting so much on her, but I am and I feel for saying that.
I wish you the best.
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
Brennie,
I have never had any lipomas show up on any tests, except when I had an MRI on my forearms. But, I had an MRI on other areas and they didn’t show up. The only way my doctor knew where they were was when I had some removed by my surgeon. Yeah, mine came back too but some relief is better than none. I developed carpel tunnel because I had so many in my forearms.
Good luck and let me know if the MRI works,
hugs,
linda
Im getting carpal tunnel too stonel…It feels weird I look healthy enough but then there is all the lumps you cant see,I hope some relief comes soon for us all…I found another lump on my breast bone…this one is really sensitive and it feels like there is a weight on my chest…