1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.
  1. Dainty

    Dainty Senior Member

    Messages:
    1,353
    Likes:
    509
    Washington State
    Wondering how many PWCs experience presistant unexplained rashes.
  2. L'engle

    L'engle moderate ME

    Messages:
    934
    Likes:
    405
    Canada
    I have a red rash on my face that may or may not be autoimmune related. Rheumatologist thought it could be related to lupus like conditions. It gets worse in bright light and can't handle direct sun at all. Very inconvenient.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    6,828
    Likes:
    3,881
    australia (brisbane)
    i get a big rash on my back which comes and go's, sometimes it flares up when i have eaten alot of carbs or had a few beers. antibiotics have helped but i think through their anti-inflammatory effects, im not sure if it is a bacterial infection, but i do use a cortisone cream when it get really bad and it helps alot.
  4. leaves

    leaves Senior Member

    Messages:
    1,193
    Likes:
    14
    Lengle please get tedted for lupus asap: both the rash and sunsensitivity are typical of lupus.
  5. L'engle

    L'engle moderate ME

    Messages:
    934
    Likes:
    405
    Canada
    Thanks Leaves, I had the lupus tests last year, a couple were positive, so I got sent to the rheumatologist. He thought my symptoms other than the rash didn't seem like lupus. I have the lab order to redo the lupus tests and keep an eye on it. Sometimes I wonder if the ME/CFS is causing some autoimmune activation on the side, as I've read can happen.
  6. rlc

    rlc Senior Member

    Messages:
    822
    Likes:
    243
    Hi L'engle here's some info on what they should be doing to diagnose lupus http://www.lupuscanada.org/english/living/1000faces_sle1.html it's known as the disease of a thousand faces because it can have so many sympyoms' so for the doctor to say your symptoms don't match seems a bit odd! Definatly think with sunsensitvity and that rash that it's something you need to get properly investigated.

    All the best
  7. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,321
    Likes:
    4,026
    Sth Australia
    Autoimmune conditions can go hand in hand so we i guess are more susceptable to them. Ive heard of CFS/ME people getting butterfly face rash (thou maybe they've all had lupus missed thou they all had been tested for it but didnt have postive tests).

    Ive gotten unexplained strange rashes at times... eg a place on my upper arm which ive had a very distinct rash several times now in exactly the same place (longest it lasted was a couple of weeks..but it was like a mastocytosis rash.. it blistered when touched and also blistered in sun).
  8. sickness

    sickness

    Messages:
    64
    Likes:
    8
    Western Australia
    I have rosacea, which looks similar to a lupus rash, but has a few differences. It can get worse with heat, I don't know about sunlight. However, I live in Australia, so usually if I am in the sun I am hot, lol. It can also be worsened by alcohol, hot foods and various other things.

    I also have a rash-like thing just above the hair-line at the back of my head. It comes and goes a bit, can be very itchy and sometimes scabby. It definitely gets worse if I don't dry the area thoroughly. It's a real pain in summer, cos it gets worse if I sweat. Yuck.

    take care, ness
  9. klutzo

    klutzo Senior Member

    Messages:
    542
    Likes:
    10
    Florida
    Hi sickness,
    The rash at the back of your head sounds like it might be psoriasis. I'd get that checked out, since there are treatments for that, and you don't want it to spread.

    I also have rosacea, and when it was esp. bad, my Rheumatologist thought I had lupus and ran the test, which was negative every time he ran it. Rosacea is strongly connected to having a pancreas that does not make enough of the fat digesting enzyme lipase. How's your digestion of fats? For me, Rosacea was the first sign of what is now a major problem 23 yrs. later, requiring expensive drugs to digest my food and keep me alive.

    The inflammation on the face in Rosacea is ironically due to too much lipase on the facial skin. The lipase breaks down the seborrheac oils that protect the skin, causing it to become thin, dry and irritated, which is why washing with moisturizing soap and luke warm water only and using just your finger pads to move the soap around, twice daily to remove excess lipase is advised, as well as only blotting with a towel....no rubbing. You can rub it and cause a hive, or get those strange looking red papules. The dry conditions cause the Demodex mites that are present on our faces to run rampant. Then there is rhinophyma. I did not get my rosacea dx'd until the end of my nose had tripled in size due to rhinophyma, and it grew unevenly, so my nose now tilts a bit to one side. Luckily, I started out with a very skinny nose, so I don't look like a freak. I assume you are using Metrogel or cream. I have found OTC generic Lamisil (terbinafine HCL) to be even better and a lot cheaper. My doctor says it is safe to use for Rosacea.

    I had recurrent red, bumpy, painful rashes on the line down my spine, under my arms and under my breasts for years, until I found out it is Intertrigo, which is a yeast infection on the skin. The spine rash went away when I cut my waist length hair to the shoulders. The wet hair laying on my back for 3 hours while it dried was fertile ground for yeast. I keep the rest of the rash away with Zeasorb Powder after every shower. If I forget even once, it starts up again. Expensive creams just made it wetter, and it needs to be kept dry. Cotton bras also help.

    I also had a mysterious rash of tiny bumps on my right lower leg for about 7 years and one day it was gone, just as sudden as it came.

    I suspect lowered immunity is the common denominator in a lot of this. Just my opinion.

    klutzo
  10. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    I've had the exact same thing for about 4 months. It's primarily on top of the 2 lumps on the back of my head and only in that general area. It flares up and itchs plus gets flaky after the scratching. I'm trying to figure out what it is tied to as I feel like it is a reaction, but may have become infected through all the scratching.

    I think the sweating and heat is what got it started, but it just want heal because I'm still sweating. My hormones have gotten out of balance which I think is tied to the sweating and I have also started getting very oily skin on the forehead and nose. I have used Scalpicin (1% hydrocortisone) with some sucess. I occasionally use clandimycin lotion just in case it is infected.
  11. August59

    August59 Daughters High School Graduation

    Messages:
    1,479
    Likes:
    397
    Upstate SC, USA
    Doesn't HHV-6 cause some rashes?
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    4,887
    Likes:
    5,348
    USA
    I get a rash from the sun, even fairly small amounts. I go out covered neck to toes to avoid being red and speckled. It's so obviously sun-related that it will stop exactly at the line where my clothing starts.

    I was tested for lupus about 2 years into my illness. My PCP declined to retest when the sun rashes started. I think he was afraid of encouraging my "false illness beliefs". ;) And, yes, he's not my PCP any more.
  13. SaraM

    SaraM Senior Member

    Messages:
    501
    Likes:
    17
    I get rashes after eating some certain foods like eggplant, potato and so on. Diet is a huge factor in my case.
  14. SOC

    SOC Moderator and Senior Member

    Messages:
    4,887
    Likes:
    5,348
    USA
    I know it does during first infections in infants. It's called roseola, I believe. But does anyone know if adults with first infections (extremely rare) or with reactivations also get rashes routinely?

See more popular forum discussions.

Share This Page