Do any of you suffer from DD and Fibromyalgia? Was just wondering as the symptoms are very similar. Or have you been misdiagnosed with Fibromyalgia when its been Dercum’s Disease?
HI
Interesting that you brought that up because i have been diagnosed with both DD and fibromyalgia which is why i have been prescribed oramorph and morphine capsules as well as paracetamol and diazepam as the pain and muscle spasms and joint / overall body stiffness especially in back going down spine to lower spasms pins and needles running across hump at the top from shoulder to shoulder
REGARDS HELEN
I recently went to see a neurologist, he diagnosised me with Fribro, but he had no idea what Dercums was, I took literature with me for him to read about it, but I got the feeling I wasted my time. He had bit of an attitude about it, he felt like I had diagnosised myself, and I told him I knew I had carpel tunnel syndrome and asked me "How do you know you have CTS? Who diagnosised you, when I responded “you did” he had a rather sheepish expression on his face. I was very disappointed in his general response.
I am reading a book about Firbromyalgia and Chronic Myofascial Pain Syndrome, by Devin Starlanyll and Mary Ellen Copeland, it called a Survival Manual, it had a ton of good information and refers to Dr. Janet Travell who was a doctor way ahead of her time. A lot of the recommendations can help us cope with the DD as well. I read everything I can get my hands on. Its too bad for us that there are no books published about DD yet. At least not that I am aware of.
We have to arm ourselves with as much information as we can get.
Hugs to all,
Brennie
I was diagnosed with fibro for 40 years. I rarely went to a doctor though. Just last year I went to a new rheumatologist and he diagnosed DD AS WELL. He says I have both. The difference is the multiple painful lumps. You do not have them with fibro. I went to 3 different doctors in the last 2 weeks and none of them had heard of DD. I gave all of them info to read and they took it and said they will read it. It was much easier than trying to explain it. We can educate all of our doctors and maybe they will tell other doctors and someone will figure out how to help us more. My endocrinologist doesn’t understand that I am trying to get my sugar down. No I do not miss insulin doses…no I do watch my diet… He asked if I need more diabetic education courses…I have had them all…and I wanted to ask him if he needs more medical school so he can try and learn about DD. It is easy to get your feeling hurt with DD. I get tired sometimes. Ultrasound of the ones in my face and neck tomorrow which probably won’t result in any help…just more bills and discomfort. : (
Thanks for the replies, I find that really interesting. Obviously until my sister was diagnosed with fibro I hadnt heard of it as with DD. I was diagnosed the day after my sister. We both have the same discomforts in the same knees, legs and even elbows, as well as the neck, shoulder pain. I feel I know have a battle on to get the relevant tests done to see if i actually have fibro too,
I managed to get a blood test done so hopefully it will rule out other stuff, I have to go back to the docs on tues to take the next step.
Good luck with the scan today grandma!!
I was diagnosed with fibro same time I was diagnosed with DD. Internist said I had 90% of point areas for fibro. There are alot of similarities with DD.
Oh yes, I was diagnosed with fibromyalgia many years before the DD was diagnosed. I’m not really sure which came first though.
Sylvia, I think I would have asked him if he needed to go back to medical school! I will file that remark somewhere in my DD addled brain for future use on an insensitive doctor…
How do they diagnose Fibro? Is there a blood test or some other type of test? Thanks. Mike.
There is a point system they use Mike in determining Fibromyalgia. According to what testing I went through the doctor presses or uses a pin in certain areas of your body to determine whether or not you have the points they are looking for. That’s all I know and I’m sorry I can’t be more specific. They didn’t fully explain it to me either.
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
Suzann,
Thanks for the explanation. I think I need to be tested for fibro, since Dr. Herbst thinks I might not have dercums, and the symptoms are similar.
I think that’s good advice. You can be tested by a Rheumatologist for it. It’s not a painful test, well it wasn’t for me, but I don’t have it I guess.!
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
my sister underwent a series of tests, including blood. they had to rule out a few such as Sjogren’s syndrome, ME, chronic fatigue etc as most of the symptoms are similar she was diagnosed with fibro because of the points on her body where the pain was, she still suffers all the other symptoms too.
she initially went to the GP with fatigue, headaches, pain in her joints, hips her neck and back and muscle spasmsm dry mouth and noise in her inner ears…hope that helps
I used to- for 15 years have Fibro but I beat that; now I have Dercums I can see the difference between the two conditions; Fibro gives a different kind of pain- dull and unrelenting; The DD pain is sharper and unpredictable.
Fibro pain does respond to over the counter medication; DD pain doesn’t (although I have been able to dull DD pain somewhat with Robacacet)
And there’s the difference between the “expression” of the two; Fibro= joints (resembles arthitis) DD= muscles, nerves and of course lumps.
I do believe that there must be some connection between the two conditions; it can’t be coincidence that 75% of DD patients also have or had a Fibro diagnosis?!
I’m also curious to know how many have Diabetes2? If also in the same percentile range it would point to endocrynological causes for both Fibro and DD.
And that’s exiting.
I am diabetic, too…
Maybe fibro progresses to DD? Remember no painful lumps with fibro…just “points” of pain…they make a big deal out of it hurting when they press on the defined points…you must have so many painful points in order to be diagnosed with fibro…so what? So they can tell you they can’t treat it and you are probably just nuts! Oh, they don’t come right out and say it…they infer that you are depressed and that caused the fibro…wrong again…being in pain and not finding any help caused the depression//not the other way around…try telling them that…and maybe you want to buy a million health food or nutrition products that don’t help…after 30-40 years of this you ask why don’t they mention the big painful lumps that are killing you…and they say…oh you don’t have painful lumps with fibro…you must have DD…and we can’t do anything for that either…maybe you are just depressed…OH YEAH…you do get depressed…the doctors make you depressed… just telling it like it us! Men doctors think fibro patients are just a bunch of fat neurotic women…and the occasional man! Hugs : )
My theory is that DD causes Fibromyalgia. We know, with DD, there is an overgrowth of connective tissue. Fibro is a connective tissue disorder. Just my educated guess. I think we had DD long before the lumps formed. I had many symptoms as a small child. You may be right, Sylvia.
the rhumatoidologist (you know who i mean) told my sister she had fibromyalgia and chronic fatigue syndrome, she asked what is fibro, he explained its a form of ME (Myalgic encephalomyelitis. ME derives from having a viral infection and can be pin pointed to that, Fibromyalgia; there is no viral infection.
Looking at what our experiences tell us, we all have a Disease, and a high percentage of us have fibro too. One day someone may put the two and two together. My sister doesnt as yet have painful lumps, just painful joints.
just my pennys worth…lol