[circles5]

Hi,

For coming up to two years, i've had this really bad swelling..
The doctors all say i have IBS.. they sent me for an abdominal CT scan; it showed nothing.
They've done general blood tests - all came back ok/no action.

But it's driving me mad, as the swelling is not confined to my abdomen.
It's my whole body at times.

It causes me a lot of pain in the areas the swelling gets worst..
and i've noticed my skin is getting stretched and damaged in these areas.

I have Body Dysmorphic Disorder.. and i believe that due to this diagnosis doctors won't take me seriously on the physical side of things.
And at times i question if it is indeed all in my head… but the physical pain and scarring stops me from even thinking about it like that.
No-one seems to want to talk to me about it. The most i get is - i see what your talking about (relating to the marks on my skin) but it's well within the normal range.. - and the swelling in my abdomen is on the severe side of IBS but still, also within the relatively normal range for IBS.
But nothing further.
They can't notice the swelling elsewhere on my body.. just my abdomen.
So i'm always on my own with this one.
I'm being sent to a gastroenterologist soon.
But i don't expect that to tell me much apart from i have: IBS.
Which i do, but i believe i have something else going on.

For instance; sometimes my face gets so swollen, i can't see, as my eyes are so puffy….. - i can't turn my neck as it's too swollen..
and at it's worst i can't even lift my arm above my head as it's too constricted around my chest / neck / armpit.

--

I spend hours a day, examining the areas that are swollen,,, and doing lymphatic massages to try and reduce the swelling.
Sometimes entire days are lost to this.

I really don't know what to do. I think i need to book an appointment with someone who specialises in oedema or lymphedema.

I hate being in this situation.
No-one believes me, everyone thinks it's in my head.
Yet it's completely destroying me.
I can't get any therapy for 5+ months… but i think it's something that needs to be addressed as a physical problem.

Circles

[gayleggg]

You usually only get lymphedema if you have lymphnodes removed, such as with breast cancer, when they remove them to check them for cancer. I've had mine removed from under my left arm and have mild lymphedema in that arm. Generally you wouldn't have it all over. I don't know about oedema. I'm not familar with it.

It also could be allergies. My daughter's face sometimes when her allergies are bad. Sounds like you are obessive with checking for swelling so counseling might help with that.

[circles5]

hi gayleggg, thanks for your insight on this.

i think i need both more therapy, and to pursue a bit further the possible physical side of things.

Regards,
C

Hi, sorry you're in such discomfort. Let me ask you a question. Why are you certain it's lymphedema? Did you know someone with that condition?

Originally Posted by circles5

Hi,

For coming up to two years, i've had this really bad swelling..
The doctors all say i have IBS.. they sent me for an abdominal CT scan; it showed nothing.
They've done general blood tests - all came back ok/no action.

But it's driving me mad, as the swelling is not confined to my abdomen.
It's my whole body at times.

It causes me a lot of pain in the areas the swelling gets worst..
and i've noticed my skin is getting stretched and damaged in these areas.

I have Body Dysmorphic Disorder.. and i believe that due to this diagnosis doctors won't take me seriously on the physical side of things.
And at times i question if it is indeed all in my head… but the physical pain and scarring stops me from even thinking about it like that.
No-one seems to want to talk to me about it. The most i get is - i see what your talking about (relating to the marks on my skin) but it's well within the normal range.. - and the swelling in my abdomen is on the severe side of IBS but still, also within the relatively normal range for IBS.
But nothing further.
They can't notice the swelling elsewhere on my body.. just my abdomen.
So i'm always on my own with this one.
I'm being sent to a gastroenterologist soon.
But i don't expect that to tell me much apart from i have: IBS.
Which i do, but i believe i have something else going on.

For instance; sometimes my face gets so swollen, i can't see, as my eyes are so puffy….. - i can't turn my neck as it's too swollen..
and at it's worst i can't even lift my arm above my head as it's too constricted around my chest / neck / armpit.

--

I spend hours a day, examining the areas that are swollen,,, and doing lymphatic massages to try and reduce the swelling.
Sometimes entire days are lost to this.

I really don't know what to do. I think i need to book an appointment with someone who specialises in oedema or lymphedema.

I hate being in this situation.
No-one believes me, everyone thinks it's in my head.
Yet it's completely destroying me.
I can't get any therapy for 5+ months… but i think it's something that needs to be addressed as a physical problem.

Circles

[Fresia]

I am sorry you have these symptoms and your concerns are being dismissed. There is nothing more annoying. I would go for a second opinion; not just seeing the G/ENT, which is always helpful for the IBS, but an Internal Medicine specialist can help with the other symptoms, such as the edema, which is not typical of IBS.

Wishing you well as you move forward and in finding not only someone that can help but some answers and relief soon. Hang in there.

[circles5]

Thanks George H.,

i'm not certain that it's lymphedema, i haven't known anyone with the condition.
But i'm sure about the swelling.. and the only two things i have found in my search are oedema and lymphedema.

i get a very visible swelling in effected areas, and i can feel that the areas are swollen to the touch.
I'm not sure what exactly is going on i guess.. but i'm pretty sure it's not psychosomatic or IBS due to it not being confined to my abdomen.

I really wish i knew what it is.

C

[circles5]

Thanks kindly Fresia,

All the best.

[Travelinglady]

I agree that it's not lymphedema. I know people with it and that's not the way it works. So, please rest assured about that.

It could certainly be related to several things, as was said. For example, the face problems might be allergies, the abdominal area be IBS, etc. At any rate, it doesn't sound like something really terrible, although I know it is making you miserable. Hang in here!