Nerve pain when skin is touched!

[Shann07]

Hi everyone

I have sle lupus among other overlap conditions. I recently have been diagnosed with fibro. My symptoms are that I have severe pain in and around my shoulder, upper back, neck and chest wall. So basically if I run a finger tip along my skin on these areas I literally explode in a weird sensation pain, if I could see it visually I would describe it like electricity travelling. The slightest stroke on my back or shoulder sends this crazy pain through my chest wall, upper back, neck, shoulders! Is this a fibro thing? The pain is now there all the time, I can hardly lie down with the pain in my shoulder, its defo like nerve pain I think. Im due to see my lupus Rheumatologist soon and they have just ordered all my blood work, but I spoke to my Consultant last week on the phone and she thinks it all points to fibro. Ive had lupus with lots of serious complications over the years, but i can honestly say this pain is the worst Ive ever endured. Im only taking paracetamol every 4-6 hours which does nothing for it really. Im using a heat bean bag and hot water bottle all day which helps. Can anyone tell me if you have ever experienced anything similiar and also what meds are best for fibro?

my heart goes out to fibro sufferers now, I really thought lupus was horrendous, but this feels even worse! I feel so down and exhausted with it, I really just want some relief, chronic pain is the worst, noone truly understands 🥺

[ChristineW18]

I have lupus and was diagnosed with fibromyalgia last year. The pain you are describing sounds similar to my experience. I am under the care of the renal physicians and don't see a rheumatologist. I have an appointment with the Pain Clinic management team in a couple of weeks so hoping they can help. Hopefully your rheumatologist can give you a diagnosis and some options for pain relief.

[Shann07 in reply to ChristineW18]

Hello fellow lupie! Thanks for your reply 😌 Im hoping my Rheummy can offer some advice when I see her, it really feels so painful & intense and I feel so alone with this as its such a weird kind of sensation. Its like all the wee fibres and tissues that connect under the skin are going crazy with pain. Good luck with the pain management appt I would defo welcome an appt with them xx

[Alb2]

Lupus can affect the peripheral nervous system which can cause allodynia, the pain I think you are describing. I have experienced it with Sjorgrens when I’ve had a flare up. Don’t ask me why but a really hot bath helps. Apparently autoimmune disorders can also lead to fibromyalgia developing, which I’ve also been diagnosed with. I will say that the allodynia disappears for me once the flare up subsides do hopefully yours will over 🤞I agree it’s horrid - even clothes hurt!

[Shann07 in reply to Alb2]

Hi Alb2 I goggled Allodynia and this sounds very like what Im experiencing. I’ve had these symptoms before and did mention it to my Cons who didnt really comment as they were mainly concerned about how my lupus is behaving. But now this pain sensation is so bad its worse than the lupus, which i told my Cons last wk over the phone. She mentioned possible neuro exam. Like you I love a really hot shower as this seems to calm the pain, although even the sensation of the shower water causes a weird pain feeling - but its a nice pain if that makes sense 🤪. I have so many auto immune overlap disorders is this yet another one to add to my list 🙈 x

[Alb2 in reply to Shann07]

I know, it’s like the whole system overloads sometimes. I find the bath better than shower but I know what you mean about the shower causing a sort of ‘grateful’ pain. I don’t use any prescribed analgesia now but do use CBD oil which both my consultants know about and it does work for me. My neurologist told me he has many patients who find it helps and wishes he could prescribe it on the NHS😊

[deb26bie]

Hi.....I can totally understand i have exactly the same pain in between shoulderblades neck over the shoulders into the chest wall and down my arm ...the pain is unbearable I have had a chest xray this morning ...had ecg which was normal but the pain makes me feel sick angry anxious and depresses me. I am on Gabapentin Amitriptiline and Sertraline as well as Ibuprofen but nothing takes the pain away or makes me feel better. I have been signed off work for the last 6 weeks due back in tomorrow but am nowhere near ready so GP is calling me in the morning as he can't give me another sicknote without speaking to me. Don't feel alone coz your not Fybro is horrendous and the only people that understand are the ones that have it. Take care x

[Shann07 in reply to deb26bie]

Hi deb26bie, Im sorry to hear your suffering so much. What you describe is exactly what I am experiencing. About 2 months ago the pain started in between my shoulder blades, into my chest wall, I thought it was a clot the pain was so bad. After about 8 wks of no sleep and hardly able to move the pain eased. Then I immediately developed this awful same pain sensation in my left shoulder, chest wall, neck and upper back. Ive had bloods done and no results back yet, Consultant thinks fibro related but Ive had a clot in my lung before and the pain would be of equal measure. I get so depressed as well as I cant see an end to this pain, drs are baffled what’s causing it. As Im replying to you I have a hot water bottle on my back! Im so glad to hear Im not alone with this. Im due to see my Cons very soon so I will update what they say. They mention possible neuro exam, I think its more like an intense nerve pain/ache. Sorry to hear your suffering too, surely your GP will support your absence from work. Im working from home at the mo, I definately couldnt make it out the door. Good luck for your dr’s appt keep pushing for answers x