I can touch my thighs they hurt, arms legs head, everything hurts to touch! I can only explain it as it feels like bruising but without a bruise 🤷♀️
There are no visible marks. I have my daughters check my scalp as this is the most painful, maybe due to thinner skin but there’s nothing there . I do ignore it as much as possible but some days are worse than others .
X
Hi Lisalou
I think that’s our normal. I’ve noticed that when i feel sad, or angry or down, the next day, I’m always in pain and have that bruising feeling you described. Try not to worry about it too much. My doctor told me not to pay attention to every detail. At the time, I thought that was weird of him to say, even wrong, because shouldn’t I listen to what my body is telling me? I had this weird pain, like a tick on my cheek. I started panicking, thinking all sorts of horrible things my Lupus is doing to me. Then i got scared and anxious. And it got worse and worse. I managed to somehow calm myself down and ignore it. And it just went away on its own. It was then that I thought l I understood what my doctor meant when he said not to pay attention to every small detail. It is true that we, psychologically and physically are much more sensitive than other people, but don’t forget, not everything is connected to this disease and we are much more in charge than we tend to think when we are feeling down.
Xxx
I very much try a positive attitude when I can and brush off a lot of my symptoms. Of course some days my positive attitude is not existent and that’s when everything becomes troublesome!
I’ve had these pains for a while now and convinced myself it’s all in my head along with other symptoms
I thought I would see if others shared the same pains
X
Yes, I am having one of those days today.
I get pain literally everywhere. In agreement with my GP I have tried a daily dose of high dose aspirin and it seems to help but on only take it on these crisis days.
I seem to find that I get this type of pain at a certain time of cycle or when I am reducing pred.
You are not alone x
These pains certainly are in tune with my hormone spikes!
Very strange. I do take co cocodamal daily. Sorry about the spelling x
Well oestrogen fuels lupus in some so I know exactly when I'm going to feel floored. I have to take about 5 days where I need R&R just to survive the pain. I have EDS too so my joints go all slippy and can sub-lux or dislocate. Hormones have a lot to answer for!
I always thought I had progesterone dermatitis, as my symptoms were always through the roof on day 14 and day 21!!! I took hormone blockers for a while and actually got some respite from it all, but eventually they stopped working and the specialist I was under didn’t have enough knowledge on the usage of the drug so couldn’t recommend I use a higher dose. 😔x
I’ve noticed this too!! I’ve been keeping a diary this bruised feeling I get across my face/bridge of nose/cheek bones and across the tops of my legs. I also describe it in that way because that’s exactly what it feels like just without a bruise. Mine seems to have a pattern so I also think it’s hormone linked; however I had a hysterectomy when I was 27 so it’s difficult to tell. It’s very interesting also a pain but our bodies are so weird!! xx
Hi lisalou , i know how you are feeling, i have Sjögrens, before i was diagnosed i ached all over in my muscles and joints , and lymph nodes were all enlarged , I couldn’t stand anyone even touching me . Things have improved when I started taking lyrica and then I started on rituximab and it has made a big difference. I still have pain but I can cope with it . I did go through an episode of scalp pain with no marks , i couldn’t even put my head to the pillow, I got black seed oil and rubbed it on my scalp at night and it really improved.
I hope you find something that makes a difference , best wishes 🌸🌸
How was your Sjögrens diagnosed if you don’t mind me asking? X
I went through all kind of tests as initially the lymph nodes were a concern so i had several biopsies, scans of parotid gland, mri scan and eventually seen a rheumatologist who from these tests and blood results diagnosed Sjögrens . I initially started on plaquenil with minimal results, i was started on rituximab infusions quite quickly. I had been ill and barely functioning for several years before came to a head when lymph nodes became swollen, and things were taken seriously.
I do wonder if I a have an element of Sjögrens due to dry ears, nose, mouth (extremely dry) and dry feet and hands , but I know a lot of these illnesses mimic each other
X
Hey LisaLou
Had to reply when I saw you write 'bruising'. That is the EXACT description I use. I have fibromyalgia, hypothyroid and am going through process of diagnosis for lupus right now.
My partner moved me to one side the other day gently with his hands at the tops of my arms. He couldn't understand why I kept rubbing my arms afterwards, but I could still feel the outlines of his hands like he had bruised me! Some days it's like even my hair follicles are throbbing. Latley I'm spending lots of time in the bath (any excuse hahaha).
It really grinds on me and after a while starts to get inside my head. Like having never ending tooth ache. Makes he a little bit bonkers. Make sure to look after yourself.
Bubble x
Has anyone ever said this symptom is due to your fibromyalgia?
Sometimes I feel like a child when someone pushes me or taps me, I rub the area after and I’m like that really hurt! People look at me like what??? As it’s only gentle but hurts like mad x
I know! He jokingly poked me once and literally 10 minutes later I could still feel the shape of his finger on my arm. Makes me feel like such a cry baby so I always try and laugh off the little bumps like I'm fine, but the aching is awful.
It's never really been explained. When I was diagnosed with fibromyalgia everything started being attributed to that, and my achey painful muscles were a big part of that diagnosis. I think the query is now if that diagnosis was correct, or if it's always been lupus. Or both. Its definitely from one of them! What I can say is I had a massive remission in 2015 where all my symptoms completely disappeared including this, and then all came back at the same time, so my feeling has always been it's another symptom of whatever auto immune stuff I've got going on.
I was diagnosed with lupus and treated with plaquenil and immuran, but still had the pain you describe. Finromyalgia was added to my diagnosis. I tried Lyrica as treatment for the fibromyalgia, but my hands and feet swelled terribly, so I had to stop.
I suffered for years with these symptoms of intense achy muscles and pain upon being touched. Finally I changed rheumatologists and was offered gabapentin. It has made a huge difference. My understanding is that gabapentin “quiets the nerves” that are sending pain signals to the brain. Now I have much, much less muscle pain and can even stand a gentle punch in the arm from my kids! 
I wonder if gabapentin might be an option for you?
I hope that you will find relief. I know that living with constant pain really becomes a burden. Talking about it with people on this forum can be a big help.
Wishing you better days ahead!
Lorelei
I get this. My 11 year old bear of a son loves cuddles but it can be very painful when he touches me. Even walking is painful, especially in flat shoes. I call it Allodynia on steroids. Nothing seems to resolve this particular symptom - I am on pregabalin, naproxen, hydroxychloroquin and amitryptiline but they do help take the edge off. On occasion, I forget my evening dose and the morning after feels like death until the next dose kicks in. I am not the most social but if I suspect a hug may be coming, I stretch out my hand and nip it in the bud. Otherwise, I just grin and bear it.
Wishing you some relief x
Yes the thought of a massage sounds like torture. As people often says you should get a massage nice and relaxing. Mmmm don't think so.
It is a condition called aladonia, it is quite common with any of the autoimmune or chronic pain conditions. I get this frequently now and sometimes even my clothes hurt or a breeze in my hair. There is lots of literature available on the internets. Good luck.
Do you HAVE to take meds?
wanting to work when you have lupus
we all have days like this
new relationship...when do you tell them you have lupus?
