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Laurence 07-21-2012 10:05 PM

Painful birthmark related fever
Hi all!

I hope someone here can help me to perhaps manage the symptoms of what I've got.

I have had a large birthmark on the back of my left leg all my life. It covers most of the back of my leg from my waistline to just above my left knee. The birthmark has never been any trouble at all until the last few years when the following symptoms started appearing.

I notice stiffness and then pain in my hip joint. About the same time my birth mark becomes very painful to touch and is swollen. Not long after that I get a really bad headache that lasts for days, feel dizzy and basically have to go to bed and rest for 2-3 days. The swelling will usually spread all over my leg. The skin is itchy and painful, my hip is locked up and I cannot stand. My heart rate goes through the roof (90-140 bpm+) and I just sweat and shiver in bed and get no sleep for 3-4 days. Typically it takes me up to a week before I feel like I'm back to normal.

This used to be a once a year thing but this year it has become nearly every 5-6 weeks!

The pain and discomfort is now really knocking the stuffing out of me and my business is suffering because I'm bed bound for half the week sometimes.

I've been to the doctors several times but they are not interested! Usually because it takes 2-3 weeks before they will see me. By then I'm recovered! They took blood last time but nothing showed up :(

Does anybody know what I might have and how I can manage it?


kaykay 07-21-2012 10:38 PM

i would have to say i have the almost exact problem with my neck, chest, ear and face.

bed stricken
did i mention PAINNNNNNNNN ?
do you have any lymph like swelling ?

I've found there is NOTHING that can help but to lie down, rest, try to keep up the fluids, try not to move at all because of the pain. I'm usually in and out the shower all day as it seems i get alittle relief. I tried ice, heat balms...nothing.

It has not happened for over a year thankfully but when it happens it can reoccur several times a year and is just depressing.

it started in my mid 20's

sorry i couldn't be more helpful

Laurence 07-22-2012 12:56 AM

Thanks for the quick answer. Great to hear that someone else has the same problem. I was in my early 20's when first afflicted.

Its bloody painful and debilitating but thankfully only for short periods of time I guess. Its weird because I only seem to get it when I'm very busy/stressed and a bit run down. I used to be reasonably fit and more active but it never happened to me then.

Too much good living and not enough exercise may be to blame!

Anyway, I've found a little relief by taking Neurofen. I don't take painkillers unless I absolutely have to and these tablets are quite effective I must say!

3 or 4 more days and I should be over it!

hflores018 07-25-2012 07:11 AM

Hi, the same thing has happened to me. I get pain, chills and numbing on my right hand (PWS on my entire arm, neck and chest). I literally feel pain in the joint of my hand and I'm useless at work b/c I have difficulty painting. No fever though. I can't remember when it started to become more profound, but it's been in the last few years. Seeing a doctor on Thursday so hopefully will get some answers that I can share with you.

kaykay 07-27-2012 02:46 AM

tried different painkillers and muscle relaxers, none worked.

my doctor had one theory. It usually happened after physical activity, particular strain to the neck. my MRIs are really weird and show lots of lymph like nodes. he thinks its possible that the circulation doesn't work properly and doesn't return from my head area as it should, could be why the problem trips off. Birthmarks are deformed nerves afterall, wrong messages being sent.

i'm just glad it hasn't happened in a while.

It could just be a coincidence, but i have had no problems since my gallbladder was removed (had gallstones probably about the same time the problem started) and there are lymph glands in the neck area I THINK that are affected by that region.

But, i also try my best to avoid situations that i know might trigger it off.

Laurence 08-03-2012 08:02 PM

Its 3 weeks since the last time I had this problem and its happened again today! Feel quite ill now, feverish, pain, stiffness and dizziness with a swollen, itchy and hot to touch birthmark with swelling that is spreading around the back of my leg to areas that have no birthmark on them.

I agree, physical activity seems to be a trigger at the moment however I was very physically active up until 3 years ago when I left the Army. It happened very seldom, maybe once, before my time as a soldier.

Anyway i'm a bit fed up now and not looking forward to a full weekends work. :(

On the upside I've got another appointment with a doctor in a couple of days. This appointment was made 3 weeks ago, the last time I was ill!!

kaykay 08-27-2013 02:35 AM

i am please to report it still has not occured again for some time although i think i have a different problem now but nothing like that crap before !

mrm.mommy 09-02-2013 11:16 PM

Can you please share My YouTube video of how i cover my birthmark on my makeup trying to get it as out there as possible for anyone else wanting to cover they're marks or just wanting to know if dermablend really works before they buy it. I really want to help the girls or guys who have this it's called nevus of ota. its a birthmark that is on your face and in your eye some people like me have it cover 50% of their face. its different from a portwine stain because it can only be removed by laser and even then it may come back and be darker. its almost very hard to cover up with make up Id appreciate if you can share it not that's ok. I understand.

thank you

kaykay 09-04-2013 04:20 PM

i decided to set up a fb page to hopefully document the surgeries that i really hope i have. there's not alot of info out there. seeing what others went threw with the before and after pics was informative to me.

would it be ok if i link that vid ? i have a youtube channel just the vids aren't for the public yet. i might work on this page tonight

kaykay 09-05-2013 09:16 PM

done ! added you vid to my page

if you wanna check it out

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