Rashes With ME/CFS

One of the symptoms listed for ME/CFS is rashes, but it is a symptom that we don’t hear much about and it was one that I didn’t think too much about until recently.  I have chatted on discussion boards with ME/CFS patients the past couple of days trying to find out more about the rashes and I’m surprised at how many people didn’t realize it was even a symptom. 

Occasionally over the years I would find myself developing little red splots, sort of like really tiny red freckles, on my skin from time to time but lately I have been having very noticable rash problems.  I have Rosacea on my face, which is like having a chronic rash, but these rashes are different than anything I have ever experienced before.

About a month ago, I discovered a very painful and itchy rash on the back side of my left knee.  At first, I thought it was another bad varicose vein because I had a similar feeling in my right leg when that large lump appeared but that was due to phlebitis.  The rash on my the back of my left leg was very red, large and it was very dry.  It hurt and burnt like crazy but after about a week or two it cleared up. 

Three days ago, I had this familiar burning on the underside of my upper left arm – the part that I always say is still waving after my hand is finished.  It feels and looks exactly like what I had on my leg – a brush burn type rash.  It started in one spot and now I have three spots of this mysterious rash. 

Either the rash is ME/CFS related or my body is trying to fight something else off (besides all of the chronic illnesses it already has to work on).  Now that I’m working I’m around germs all of the time and sick people coming through my line.  I am constantly using sanitizer wipes because of all of the germs but that doesn’t help completely.  I’m not using any new medications, laundry detergent or anything like that so nothing new as far as what I use has changed.  The rash doesn’t look like psoriasis, eczema or shingles. 

I was hoping that some of you readers could share if you have rashes due to your ME/CFS, what they look like, where you get them, and what your doctor has said about them. 

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  1. I was diagnosed with CFS/ME in 2007. Since that time I developed a skin rash which has been called disseminated granuloma annulare. Normally this disease is limited to a small localized area. I have a large red rash all over the backs of both thighs, which continues to spread down my leg. I also have it around my waist and upper arm. I’ve been to 2 different dermatologists and have had 3 biopsies. While small areas can be treated with injections of a steroid solution, there is no treatment for a rash as large as mine. While the rash doesn’t hurt or itch, it is distressing because it is disfiguring. I am very self conscious when I wear a bathing suit. I don’t know if there is a point in going to see another dermatologist but if I do, I will be sure that she is a female. I’m convinced that a male doctor can’t really appreciate just how uncomfortable I am with the appearance of my skin.

  2. I’ve been ill on-and-off since I was a young kid (I’m 18 now) but I developed CFS in early 2013 following recurring glandular fever. I first had a rash during one of my glandular fever ‘occurrences’ but it didn’t start up again or become a problem until a few months later. It began with small, red, heated patches of skin that later developed into a painful, itchy, burning rash that occurs all over my body. Along with the rash I get swollen areas a lot, usually my cheeks/chin/lips/eyelids/undereye/fingers/hands and although they aren’t painful, they itch and are a massive inconvenience (worst case was where my eyes were literally swollen shut at 2am the day of an A-level exam.) The rash comes up in a lot of different forms for me now. Sometimes small raised bumps, sometimes larger, swollen patches, sometimes just red, heated patches and every now and then I’m surprised with a different type. I have a ‘mild’ rash throughout the day which moves all over my body but tends to hang around my forearms. This mild rash isn’t painful and the itching is bearable but every single rash apart from this one is hellishly painful and the pain only goes with itching which makes it spread and worsen and has left me with self-harm injuries following scratching in my sleep or without taking notice. The rash sometimes wakes me up at night because of the pain but it’s more of a bother during the day where the rash has an effect on what I wear. Leg rashes mean skinny jeans are out of the question and rashes elsewhere mean I have to cover up more which has definitely affected how much I go out seeing as I’d rather stay in wearing a loose skirt and baggy t-shirt. There isn’t really a pattern for me seeing as some days it’s horrible, some days it doesn’t exist, most days it’s sorta bad, but I’ve noticed that hot water and hot clothing definitely worsen it.
    I did tell my consultant about the rash but she looked it up and couldn’t find anything she cared about so told me not to worry before discharging me completely. I’ve been trying homeopathy though and I’ve found that it helps but the problem is that my homeopath wants to concentrate on fixing my CFS as opposed to all of the symptoms meaning I’m left with just Bach remedies between treatments. Crabapple and Impatiens did help me to begin with but now I just use it to cool the skin (5 drops each in a small spray with water, mineral, not from the tap.)
    Honestly this rash is probably the worst thing for me because it’s painful and makes me self conscious whilst also managing to screw with me by sometimes making me unable to see, unable to eat, unable to use my hands and unable to dress. It has had more of an effect on my social life than the CFS because of not only the pain+swelling but things like being unable to wear certain shoes or clothes which probably sounds stupid but when you’re an 18 year old girl with a party/meal to go to and nothing but open shoes to match your outfit plus self-harm scars on your feet along with swollen red spots? It sucks.

  3. Brieanah Moncrieff says:

    I have recently been diagnosed with CFS and Fibro by a naturopath after months and months of no answers at various doctor clinics. The rash is new, maybe 2 months that it’s been badly spreading and itching. It’s mostly on my thighs, behind my knees and the inside of my upper arms. I’ve tried various creams and anti fungal ointments to no avail. Reading here that the other CFS sufferers have this bizarre rash makes me feel both empathetic for you and very annoyed with this condition that it keeps finding ways to effect me. The rash itself is presenting as almost raised hair follicles in round spots that then slowly become bigger and red with itching.

    • Gail Robinson says:

      Ive Suffered Like That for Years Only To discover Now That its a type Of Psirosis Egzma. I also Have Just been diagnosed With ME N MS.

  4. thankyou for your feeback onhits,,, i had CFS about 20 yearws ago and got myself well using sepcialsed supplements, very well, actually, but i had to go onto med for depression, life still goes on it seems, … aobut 3 years ago, and then devleoped granuloma annulare .i had it biospsed.. it is on my body, arms hands, bak of legs front of legs, … i supect the anti depressants /meds caused it, never thoght aoubt CFS, so thank you for all this above as it has given my food for throught, wishng you all good health, jill

  5. Came here looking for info about this rash. I was diagnosed with CFS in 1996 at 28 years old. I have never had the rash until a couple of weeks ago. It’s starting to go away now. I looked up pictures online and read all about the different known rashes out there and none of them really look like mine. It’s on the front of my thighs, behind my knees, inside my elbows, and on my neck. Itches like crazy. At first they kinda looked like bites. I went to the pharmacy to get some cream for it and the pharmacist was like, “unless you got swarmed my a million mosquitos, those aren’t bites.” He thought it was hives. I’ve never had hives and they don’t really look like the pictures I’ve seen of hives. There will be a big bump that looks kinda like a mosquito bite then a bunch of little red bumps.

  6. I’ve recently been diagnosed with CFS…I have had adverse reactions to nearly ever medicine for two + yrs… I’ve had an unexplained rash on my arms every year except two for 10 yrs. Skin looks fine…then insane itching starts…usually when I’m asleep…I wake up bloody..then it festers and won’t heal…only an ice pack stops the intense itching…or a dose of prednezone.
    I’ve thought it was allergic reaction… Or now wondering if its a side effect of medicines.. When I stopped taking two if those it stopped itching and healed….Then I had to take amoxicillin…and it came back on the other arm…

  7. I have been diagnosed with CFS when I was a teenager. I have had it for about 50yrs. I have acne/rash on my head and face only. It appears every 6 to 12 mos. It looks like a regular pimple with a white head, they are very itchy. They are treated with Keflex for 2 wks and they go away until the next flare up.

    • I have that! White, pimple-like thing in my neck. Very itchy and sore. Not a pimple. Surrounding area is very inflamed.

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