Thick Fog and Sore Hands

[Macsimum_de]

Why is it so hard to focus? It’s not that I have blurry vision but I feel like I have to blink twice to see what I’m really looking at. My brain is mush and I can’t figure out why my hands are this lovely shade of painful red!

[Barnclown]

Looks like my hands. In my case this is diagnosed as erythromelalgia. I think this is the best source of official info on this miserable condition (its diagnosis, treatment & self help):

rarediseases.org/rare-disea...

Here is what the SRUK (scleroderma & raynauds UK) website says about erythromelalgia:

sruk.co.uk/scleroderma/eryt...

In my case this manifests as a complex combination of simultaneous feezing from raynauds (RP) and burning from erythromelalgia (EM) all year round in a 24/7 cycle. Some people just have hands affected, others just feet...in my case it’s hands, feet & head.

There are several others on this forum managing RP&EM secondary to lupus. Also there are more sufferers on the HealthUnlocked SRUK forum:

healthunlocked.com/sruk/pos....

Your brain fog & blurry vision are also something i can relate too...my version of this is worse when my autoimmune conditions are flaring because i’m either over doing things & not pacing myself slowly enough, or/and i’m under-medicated

Have you ever been told you’re on the Hypermobility Spectrum? I ask because your hand shape is similar to mine: relatively long thin fingers (my feet & toes are also extra long & thin). When rheumatology saw my version of this, i was diagnosed with Arachnodactyly, which is chracteristic of certain types of hypermobility syndrome (in my case Hypermobile Ehlers Danlos Syndrome aka hEDS):

en.m.wikipedia.org/wiki/Ara...

My impression is that hypermobility seem to go along with simultaneous RP&EM relatively often...also, i think EM occurs much more frequently, overlapping with just about every autoimmune condition...but medics never know enough to recognise EM signs & symptoms for what they are...so EM is seldom diagnosed and remains a rare condition, when actually it’s relatively common place

🍀🍀🍀🍀 coco

[Macsimum_de in reply to Barnclown]

My feet also turn bright red. It doesn’t matter if I’ve been off them for hours or not. It’s been a long two years trying to figure out what was going on. Finally got diagnosed with lupus and fibromyalgia but they haven’t figured out the feet/hand problem yet. She put me on 200mg hydroxychloroquine and now recently 30mg duloxetine. About a week ago I broke out in some freakish rash on my chest, stomach, back of arms and legs and had huge bruises all over my legs. Went in for a biopsy but she said it didn’t look like an allergic reaction to the meds so now it’s a waiting game for the results on that along with the blood work. I do feel that both meds need to be upped as I don’t have much relief from pain unless I’m on prednisone and that is a whole other issue.

I am definitely going to look into what you shared in your post. I have never heard of that so thank you for the info. Some people think it’s in my head but the pictures don’t lie and my lovely rash doesn’t wipe off!

Had a lady the other day say “don’t you think you put a little too much blush on?” It’s depressing 😢

[Barnclown in reply to Macsimum_de]

It’s good your medics are looking hard at your signs & symptoms. This sort of redness can be due to other problems, but why not ask your medics if you could have EM?

Likewise, bruising can be due to many problems, but in my case frequent bruising is caused mainly by my hEDS and is referred to as “paroxysmal haematomas” which are not caused by trauma/pressure injury (the bruising just “happens” to me spontaneously with out bumping into something)

My extremities (feet, hands, head) are also affected by early onset persistent progressive peripheral neuropathy numbness

I also live with various allergic reactions & rashes...no picnic

Yes, this is depressing. I hope something in my replies helps you feel ready to fight for convincing diagnosis & effective treatment....meanwhile you can try the self help tips in those links, above: once you figure out what helps you most, things do seem that important bit more cheerful

Take care, Courage 🍀😘🍀😘🍀😘

[Barnclown in reply to Macsimum_de]

PS this is a link to the official hypermobility.org website’s info on hypermobility & hEDS:

hypermobility.org/professio...

[Lisalou19]

My hands keep changing to a nice shade of pink, the skin gets very dry and inside my hands hurts

I’ve no idea what is causing this!!!! But I can sure see my hands are trying to tell me something

[Lisafaye in reply to Lisalou19]

I had this before I was diagnosed with MS, I still get it but more numbness now just pain everywhere else.

[Hidden]

I get this too but mainly in my finger pads/ tips - usually during warmer months. In my case I believe it is related to small fibre neuropathy.

[ush1401]

I have been suffering with my hands for some time now. They get hot (like hot blood pumping in tips of fingers) swollen and very sore. I have had dermatologist checks and lupus clinics regarding my hands but no diagnose. Kind of fed up now as feet have started playing up aswel. This week prof at hospital advised of a brain scan.