Two flares in two weeks with fever

Dercum's Disease
#1

Hi everyone, I’m feeling well enuf tonight to get online and tell you I’ve had two flares in the last two weeks each lasting 3 days…days full of shortness of breath, thumping heart, low-grade temps. from 99.2 to 99.4 (my normal temp. is 97.5) and fatigue or more like exhaustion…along with that comes increased pain in my neck, legs, knees, back and hips…my hips hurt so much at night that I constantly toss and turn about every 20 minutes to get relief. I also find it very hard to get out of bed, the low back pain being very bad.

I had an echocardiogram today and my heart is fine, next week a pulmonary function test…Does anyone else have flares like the ones i just described…I need to understand and not feel so alone in this as we all do I’m sure. My Dr. is just beginning to treat me so I’m sure it will be awhile before any results come my way. Hugs to all and thanks to all of you for mine.

Bev (Ladymary)

#2

Dear Bev…I am so sorry that you are suffering. I know we all have flares. Try and live in between the flares and make the most of the days that you can function. I can feel how frustrated you are and deservedly so. I really don’t have flares I hurt all the time. Some hours worse than others. This time of year when the weather gets colder is always really hard. I always think I can’t make it through another winter but I do. Spring always comes eventually and I feel somewhat better. I know you will have many days when you feel better. It is just hard now when you feel so ill. I send you lots of hugs and well wishes. You are a very sweet person. Grandma Sylvia

#3

It is DD. I have had flares over 30 years.
Some of them are milder and some are so bad I cannot get out of the bed. The thing seem to be that the bad ones leave some kind of new pain or inability to move.
I have learned to handle them with taking life very easy.
Rest a lot and sleep a lot. Try laugh. The stress makes them worse. In criterias for a diagnosis for DD in Sweden is higher body temperature in celcius around 38 degrees.
Take it is easy now, and hope for the best!
Hugs
Arieldiva

#4

Bev, could you have had a virus? Generally speaking when I have viral infections my DD will act weird and make my body unbearable. I am in a horrible flare right now. We have had such high humidity and rain. This morning was the coldest we have had in a while and my knees are feeling it. I have some days that I can’t hardly get off the toilet. G_d help us. Bev hold in there honey.

Sylvia, you are about the sweetest person I have ever seen. You always have such nice comments about everyone. G_d bless you.

#5

"The stress makes them worse. In criterias for a diagnosis for DD in
Sweden is higher body temperature in celcius around 38 degrees."
Hi Arieldiva,
I find that surprising! My temp is more than 2 degrees below normal! I know if quite a few of us run sub-normal temps. Would we be told it couldn’t be DD if we were in Sweden? Just curious.

Hugs,

Pamela

#6

Hi all, thanks so much for your comments…what is 38 degrees celcius anywho? All I know is that i can feel my temp. rising and feel the pain more and in new places. I too can barely get up on those days esp. in my knees, pain just shoots throught them at the joint. I’m having a good day today and glad for it. I just finished an art project and feel super that it is done. You all take good care and thank you Gr. Sylvia for your kind words. love to you all…Bev (Ladymary)

#7

I know we have covered these flares before and as they are so despairing it is good to talk about them as i have metioned mine are every 10-14 days lasting around the worst 2 then mildly 2 then on the last day some fatigue releif, though my doctors do not understand they are good at controlling my pain, i take 70mg morphine capsules morn and eve with regular paracetamol and 5mg diazepam and then when the pain is horrendus i have morphin oral solution this helps me sleep and relax as i am a bit spaced out for a couple of days then i wined it down as the flare passess. thanks for all the hugs send some back with all the good wishes i can give.
helena

#8

When you all talk about your joint pain, how do you know it isn’t arthritis? The reason I ask is because I have suffered joint pain for a few years with the last two being really bad at times. There are time that I can hardly go from a sitting position to standing and walking. I thought this was probably arthritis because of my age (just turned 55) but I don’t really have any x-ray to say that.

#9

Hi Kat, forgive me for abbreviating your name but I can’t remember how to spell it once I go to write. I don’t have any knee problems on xray so I know it must be DD. My hips too look good on xray but they kill me and are so tender to the touch and right in the joint. I hate that this disease does not show up well for us in tests, only on ultrasound for me so far. And C.Gold I don’t have a virus that i know of and feel good today, flare has simmered down. Hey, how do I get my photo up like you do…I’d like to put my face with my name…Thanks, Bev

#10

Bev, we want to see you! Go into PICTURES under your TOOLS then into CHANGE PROFILE PICTURE and they call it an AVATAR whatever that is! You should be able to follow from there. My joints are horrible and I would think it was from my arthritis but it is not. It is the DD knots all over the joints and inside in layers. They make walking so painful. Hugs to all my peeps! Grandma Sylvia

#11

My knees are absolutely normal too under xray. I have severe pain in them where I have absolutely no strength to stand. My arm is the same way. My temp usually runs 97.1 when I am feeling well. I get a flushing feeling sometimes that is so overwhelming that I feel like I have over 100 fever. From what I have been researching it is because our cells produce much more heat than normal people’s cells. (Odd you would think that we would burn more fat) From what I understand our bodies are just not normal. LOL Ok, I am trying to keep it light. It just gets so gloomy!

#12

We don’t know, Kathieh! I actually do have arthritis in several places, including my spine. The thing is, we who have one auto immune disease are likely to have several. Drat!

Hugs and spoons,

Pamela

#13

I have all the thing you are talking about all the time fever comes and goes
the exhuastion and pain is there all the time I think i just found a doctor
hope so have a call into him now he is in Temple Texas. I pray that he knows
this disease and can treat me. I have a knee that won’t quit hurting hurt my
hands and arm to use cane or walker. My back hurts all the time too. love

teresa

#14

Ladymary I have had some sever pain in my joinnts as well…especially my
right knee…behind the knee it just gives out when I turn or bend the joint and
now I tried to do leg lifts and I cant do them in that leg…the knee wont work
and there is pain…

#15

I wrote that same question to Dr Herbst and she said there is a form of DD
that can mimic arthritis…To quote from her email…" Periarticular adiposis
dolorosa is associated with arthritis like pain with normal joint."

#16

Yeh E Johnson, another name to yet another difficult problem. A friend of mine is a physical therapists and she said “Periarticular” refers to pain around a perfectly normal joint so there ya go…I love any answers we get…makes me feel more able to understand why we hurt…thanks a lot. LadyMary.