Lupus Pain

[Goinglong10]

Lupus Pain. What have others experienced?

[Spanielmadlady]

Plenty of it all over. Hands,feet,knees, elbows as well as headaches and chest pain .stomach pain due to ibs muscle cramp in arms and legs.painful eyes and lips due to sjorgens.pain flits about too x

[Goinglong10 in reply to Spanielmadlady]

Tjank you Spanielmadlady. I was touched to get the replies.

[Krazykat26]

Yes Goinglong 🤗plenty of pain..crops up anywhere at any time..can't actually remember a 'pain free' day!! It does vary though so a good day is with pain that's more manageable!! 🌈😽😽Xx

[Goinglong10 in reply to Krazykat26]

Thank you sooo much KrazyKat 26. It was very heartening to hear from everyone.

[Insomniacette]

Ankles and knees mostly - every month when I get my period they ache for a few days. On occasion it can spread beyond to any of the following areas: my hands/fingers, wrists, feet, hips, back, stomach and ribcage. Most of the time I'm lucky though and it's bearable.

On two occasions things got super bad though and I had pain in my face (which I know sounds weird) but I was in total agony. The pain was in my jaw, cheek bones, eye sockets, forehead, back of the head etc, basically my face and head just ached and throbbed like crazy and I was groaning/weeping my way through it head in hands in foetal position in bed. The first time the face pain happened was shortly after diagnosis and after I'd spent all day in the sun with my friend's children, the second time I got face pain was about 5 years later following a huge anxiety attack. So face pain is rare for me, but boy when it happens it's the absolute worst.

[Goinglong10 in reply to Insomniacette]

I am so grateful to have this forum with other like minds. Thank you.

[CecilyParsley]

Hi Goinglong10, I find it hard to distinguish what pain cones from which condition but I get gut pain, pain in my joints with swelling, burning from rashes, pain from mouth and genital ulceration, headaches, muscle pain and weakness, nerve pain which is often the worst. How about you? What types of pain do you get? Xx

[Goinglong10 in reply to CecilyParsley]

Hi Cecily Parsley, Thanks for posting, The kind or pain I get is arm, shoulder, numbness in my fingers and toes. Also neck pain. Burning of my skin to touch. Pain under my left breast . My pain seems to radiate all over. ulcers in mouth. I am a mess and afraid all o the time, that it is something else.. My partner is tired of hearing it. I can imagine it can be boring for a partner to hear about it constantly. Nevertheless. it is so real for me.

[CecilyParsley in reply to Goinglong10]

Harder for you to feel so bad though. I have to say I get sick of myself a lot of the time, if it is not one pain it’s another. I am so sorry that you are suffering. Have you got any local support or help apart from your partner? I get a carer nine hours a week which really helps both my husband and myself. This site is a lifesaver too, so many wonderful people with lots of insight and advice and a giggle along the way. Take care xx

[leentheexplorer]

Not officially diagnosed with lupus, but suspected - I have joint pain, neuropathy, ocasional chest pain, headaches, pain behind eyes, back pain and ocasional stomachache

[Londonlupie]

Hi Goinglong10, I get plenty of random pains, including aching kidneys, joint pain (hip, knees, toes, feet, ankles, fingers, wrists...), peripheral neuropathy, headaches, stomach cramps, and general malaise when fatigued. Every day is a new bag of symptoms!

[Lorelle09]

Headaches, stomach issues, joint pain, fatigue, hair loss, brain fog, lightheadedness, anxiety, rib cage pain, neck pain, facial pain, facial flushing, rashes, sun sensitivity, nausea, UTIs, low iron, it’s been a lot over the last 8 years.