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LUPUS UK
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Rash used to just attack my face, now my hands, legs & feet!!!! Feels like I’m burning and crawling with insects

Woke up feeling so tired after a good nights sleep. Skin on face felt rough but I went to work trying my approach of keeping active. By 2pm my legs, feet and face felt like I was burning alive. Had to leave work. I’ve been told previously my symptoms could be in my head , does this photo really look like I’m making this all up 😢

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Oh..absolutely in your head..if your head is legs with an OBVIOUS rash!!! Good grief....My skin is a mess also right now....One time I had a dr tell me I was a nuisance to my family..turned out my stomach distress was H Pilori(nothing related to Lupus)....ARRGGgggg

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It’s so frustrating!!!!! I’ve got to the point now where I don’t care what my rash looks like, it’s how it makes me feel. I go from such a positive upbeat person

To feeling totally on another planet, my brain feels else where, and then the burning stinging starts and I cry, not because I’m depressed, but because my own skin feels like I’m burning alive!!!!!

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I totally understand...I am so fortunate that I was dx'd at age 62..Yes symptoms long before 62...anyhow My heart breaks for the younger ones and for all who are going through a painful flare...even worse, those who don't catch a break and feel awful every day.....I'm in a mild flair right now but not in pain as you describe it....although I felt the burn last summer.....I'm hoping that your burn will ease up quickly xo

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Lisalou19 I have lupus, Sjogren's, IBD, and Interstitial cystitis I also get this rash along with my many crazy symptoms. I've asked my rheumatologists about it and she has no idea (FANTASTIC). It's painful and itchy not to mention that it looks awful. If anybody has any idea of what it might be or is dealing with the same thing please share. Thanks

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I shall keep you posted kismetsoul

In January I was in such a bad way, desperate for help. I went to see a private doctor who physically saw my symptoms. He runs a rheumatology dermatologist clinic now, and has requested for my doctors to refer me there under the nhs. He was such a good doctor and out of all the places I searched to see, I ended up in front of my dads specialist for rheumatoid arthritis. Of course family history plays a big part in these illnesses.

I feel blessed that I am being referred under the nhs, just got to wait patiently. Could you tell me more about your Sjogrens? As another person mentioned her husband suffers this illness and the rash burns

X

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Could it be urticaria vascularise which causes burning, stinging rash

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Do you know much about this urticaria? I’m open to the fact this could be anything . Do you suffer from this at all??

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This happened to me big time last noverbearing big time dry itchy skin over entire body loowed and felt terrible. Went onto steroids early January and it has cleared a lot and had blood tests back recently with a Lupus diagnosis.

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Sorry about my spelling am in bed and my phone writes what ever it thinks it should. Yes widespread rash which would not clear last november on prednisolone waiting to see a specialist

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Yes - was told I had it, then not but I’ve had a rash from head to toe, come & go several times over 5/6 years. I’ve been given immunosuppressants/steroids/antihistamines/chemotherapy to suppress my immune system. Google urticaria vasculitis HUV. It’s inflammation of blood vessels. Itching drives you mad. It makes you v fatigued as well as lots of other things.

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Yes I am afraid it does. Apologies for my spelling earlier my phone just writes what it wants. The message should have said last november. Constant skin itching and sore and even down my spinal cord. Prednicotine 25 my soon helped but no doctors want you on it for long. Having a taper down now from 15 to 10 and strugglingerie but determined to do it. I am quite interested in a treatment plaquial and will ask doctor about this. It is easy to talk but rest if you can!! Best wishes and my heart really goes out to you. Anyone who has not had this disease have no idea how we feel and what it does to you either.

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Sorry for my spelling earlier. My phone writes what it wants. It should have read last november. Constant skin itch and terrible rash and dry skin. 25 mg of prednisolone helped but all doctors say you should not be on it for long. I am now tapering down to 10mg and struggling but quite determined to stay with it. My heart goes out to you. People that have never had it have no idea how it makes you feel

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My Sjogren's is very severe and present as a dry eyes, nose, and mouth. Oral Decay is a big problem as well as mouth sores and my salivary glands are swollen most of the time, lately it has been affecting my taste buds. I am always nauseous and vomit often, I have severe constipation. The Interstitial cystitis which makes you feel like your bladder is on fire. Vaginal dryness is very distressing and my menstrual cycle has just disappeared(I do find that as a bonus). My joints are really sore and sometimes swollen mostly in my hips, shoulders, hands , and my legs always feel very cold. Concentrating and remembering what I was just talkin about can be impossible at times it gets very frustrating when trying to have a conversation and I cannot remember simple words. As far as my skin goes I do get rashes like the red one we spoke about earlier and and I also get something I call lizard skin. The only way I can really describe it is that it is not raised but it's red, painful, itchy and literally looks like lizard skin my doctor thinks that it is part of my vascular problem. So far have been lucky and sjogren's has not really affected my lungs. The doctor treats me with Plaquenil, prednisone, and immunosuppressants. I treat my dry mouth with Biotene and for my eyes I use use moisturizing drops. A lot of my symptoms also can be lupus related it's very difficult to differentiate. I hope this was helpful and I hope your friend's husband does not have Sjogren's. As with lupus sjogren's is presented very differently in each patient so he should definitely go to the doctor and get it checked out. I'm sorry you have not been feeling well sending you big hugs.

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Oh wow bless you , you don’t have it easy. I’ve never noticed sores in my mouth but I get reoccurring nose sores, for no reason. They get me down because I worry about what others view my nose sores as.

Sometimes my face doesn’t show a obvious rash, but it feels really tough so I can relate to the lizard skin. My hands look like I’m about 80, they get so dry and painful which is my most recent new symptoms.

You mentioned vascular, that word rings a bell with the private doctor I am waiting to see again. This has been such a long road for me, I need to keep it together a bit longer but I’m struggling. I don’t stay asleep, so I’m always sleep deprived which I’m sure is not helping in many areas. I’m trying this positive approach at the minute, which has kept me pretty active for a number of weeks. Yesterday was a bad day, it’s those days when I just can’t see myself living with this any longer. I currently have emergency steroids which are helping loads, only doctors will only give me 5 days supply at a time so I only take them if I get really desperate.

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Lisa Lou you look just like I do at the moment. This flare up started when I was given a course of Droxy for Bronchitus, so now I am on Prednisone for the flare up, its never ending. Three flare ups this month plus a dose of UTI and then Bronchitus. To add insult to injury I read somewhere that this terrible disease does not attack the over 60's.. ha ha do not believe it I am nearly 86 and only got diagnosed last September. What gets me down the most is the exhaustion that comes with it.

But I am still breathing, for the moment so keep you chin up love and treat yourself kindly.

Jean

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Hi Lisalou19,

Are you aware of anything that may have triggered this rash? For example, are you sat directly under any fluorescent lighting when you are at work? This artificial lighting emits a lot of UV which can trigger photosensitive rashes in people with lupus.

You can learn more about this and get tips on managing it in our blog article here - lupusuk.org.uk/coping-with-...

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Strangely enough , I always get a flare up in my hands when I am at college.

Not noticed it so much at work. This most recent flare has thrown me completely, normally I get raised symptoms during spikes in my hormones. I have had a rotten cold, which I seem to get all the time I’m wondering if my immune system is low at the moment.

It’s definitely not an allergy as I have had full allergy testing and allergy blood tests during a flare up, all negative.

I wish those around me could understand how poorly these flares are making me feel :-(

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I have the same thing except itching crawling of bugs on neck and scalp as well as my face. I've also seen eggs fly out of my neck and stick to my face and head and embed themselves in my skin. I finally have made my own hone remedie to cure myself. yestersay i have finally found my own remedy so I can stay in public longer. I should of taken a picture of the tub but I didn't but I feel a lot better but not perfect and I will not stop i until I found the right amount and ingredients to get all this weird feeling to gone completely.

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