First fear in a long time - Dermatomyositis

[darkside4k]

So - I actually thought I had recovered from being a hypochondriac. I haven’t had any seriously long lived fears in a long time. I was so proud of myself. Boy was I wrong.

In February, I developed a red rash under my right eye and a little area near my right eyebrow. I went to the dermatologist and they prescribed some steroid cream. That does make it go away.

In April, I started having some joint / muscle soreness. I also got a red irritated spot on my right pinky. I googled eye rash and knuckle rash and came up with dermatomyositis, a rare and potentially fatal auto immune disease that causes a distinctive eye and knuckle rash and causes muscle breakdown and weakness.

My life has been absolutely unbearable ever since.

I went to the doctor (twice now) and my bloodwork has been normal both times. Normal CK, LDH, and ANA auto-immune panel. The irritated area on my knuckle went away within a week or so. I still use steroid cream under my right eye every day or two so I’m not sure if that rash would come back or not if I stop. I’m too scared to stop.

Even though my blood work was normal, I fear I have this disease and will soon be dead. I do not have any obvious weakness but I do still have muscle soreness and fatigue sometimes. My bloodwork and muscle enzymes have remained normal in spite of this muscle fatigue.

I even have started obsessing if my muscle mass is wasting away because my butt feels smaller when I sit in a chair, though my wife says it looks the same.

I worry my throat feels tight and swallowing feels tight. But I am able to eat normally.

I don’t know what to do or where to turn. I’m basically left waiting for more obvious or severe symptoms to develop so I can go back to the doctor and be diagnosed with this deadly and horrible disease.

[darkside4k]

I know I am dying. When I sit I can feel the bones in my butt and it's not even comfortable to sit because I know my legs and butt are wasting away. I'm so finished.

[utrocket09]

I know I am dying. When I sit I can feel the bones in my butt and it's not even comfortable to sit because I know my legs and butt are wasting away. I'm so finished.

As someone whom has an auto immune disease, they will show up in blood work. And you dont waste away in your legs/butts if you were wasting away. It would be noticeable in your face.

[darkside4k]

What's really scary is since last Thursday my appetite has been missing. I also feel nausea after eating and have very little appetite in general. This is honestly so scary. I can't believe after all this time I actually have a rare, deadly disease.

[utrocket09]

What's really scary is since last Thursday my appetite has been missing. I also feel nausea after eating and have very little appetite in general. This is honestly so scary. I can't believe after all this time I actually have a rare, deadly disease.

But you don't have a deadly disease

[darkside4k]

Well it’s not looking good everyone. I still am battling the rash under my right eye. Tacrolimus cream keeps it away but it comes back about a week after stopping.

My knuckles also look a little pink sometimes, though sometimes they don’t really do I’m not sure what to make of that.

I had my Creatine Kinase run again about 2 weeks ago and it was normal again. Has been normal so far in April, May, and June. And normal ANA test in April and May.

However, the sad thing is this rash can appear months before the muscular symptoms start. So, I’m sure it’s coming soon. I’m on death’s door. My children will weep while I suffer. It’s all I can think about honestly. It’s consuming me.

I also have very little appetite and some joint pain.

I’m going back to my doctor and the dermatologist in about 10 days.

[Fishmanpa]

I had my Creatine Kinase run again about 2 weeks ago and it was normal again. Has been normal so far in April, May, and June. And normal ANA test in April and May.

So there's that fact....

And then this....

Well it’s not looking good everyone..... I’m on death’s door. My children will weep while I suffer.

Dramatic much?

FMP

[darkside4k]

I think the frustrating thing about this disease I’m fearing is you can have normal bloodwork and just a rash for like months or even years before other symptoms appear. A hypochondriac’s worst nightmare honestly.

[utrocket09]

I think the frustrating thing about this disease I’m fearing is you can have normal bloodwork and just a rash for like months or even years before other symptoms appear. A hypochondriac’s worst nightmare honestly.

Lots of people get rashes....

[NoraB]

So - I actually thought I had recovered from being a hypochondriac. I haven’t had any seriously long lived fears in a long time. I was so proud of myself. Boy was I wrong.

Did you have any kind of therapy?

I went to the doctor (twice now) and my bloodwork has been normal both times. Normal CK, LDH, and ANA auto-immune panel. The irritated area on my knuckle went away within a week or so. I still use steroid cream under my right eye every day or two so I’m not sure if that rash would come back or not if I stop. I’m too scared to stop.

Even though my blood work was normal, I fear I have this disease and will soon be dead. I do not have any obvious weakness but I do still have muscle soreness and fatigue sometimes. My bloodwork and muscle enzymes have remained normal in spite of this muscle fatigue.

I even have started obsessing if my muscle mass is wasting away because my butt feels smaller when I sit in a chair, though my wife says it looks the same.

I worry my throat feels tight and swallowing feels tight. But I am able to eat normally.

You need therapy for your health anxiety. There's nothing major going on here. Your bloods are normal (this wouldn't happen if you were about to die of a disease) and the muscle soreness and fatigue is down to the level of your anxiety because being in constant fight or flight creates these symptoms..

I'm thinking that you didn't address your HA first time?

Re the steroid cream, I wouldn't use that stuff indefinitely; the skin under the eye is thin as it is. Stop using it and see how you go...