Skin pain driving me mad

[Carlettejaque]

Two years ago, following insect bites my immune system kicked off. It started suddenly with big red patches of sore skin all over my body. I was given strong steroid cream which didn't work. Then came agonising neuropathic skin pain which feels like every inch of my skin feels as if there are prickles, thorns, pins, holly leaves being pressed into every inch of my skin. Even up my nose, in my eyelids, lips and around my bottom. With the pain i couldnt sit down, lie down or wear clothes. Any pressure felt like all the prickles were being pressed further into my skin. It was absolutely awful. I had no medication for this for a month. Then i was put on strong steroids which helped relieve the pain by half and the redness faded. I was given huge doses of antihistamines which did nothing. After 3 months I came off steroids to have a skin biopsy done and the itchy rashes and hyper sensitivity of my skin started. I went on to take Gabapentin for the skin pain and back on steroids for the rashes. Gabapentin worked beautifully at a high dose. All of this started 2 years ago. I'm still on steroids at 9mg daily. The Consultant Dermatologist kept changing his diagnosis but now says it's Eczema??? I have no typical eczema patches of skin. And is trying to find a medication to get me off steroids. But I have severe IBS and Cyclosporin made that terribly worse. Everything rescts with my bowel. Ive had IBS for many years and it's ruined my life. But this is worse. Since having the flu jab everything has flared up. Hypersensitivity is awful on my legs. Feels like i am covered in sand and grit. I think I need to see a neurologist not a dermatologist. Any ideas out there please. I am 70 and i am going mad with this.

[Hidden]

Hello gosh I'm so sorry you're going through this. I've experienced prickles across my feet from time to time so I can understand the sensation you're describing exactly. I also have a troublesome immune system hence why I don't ever have the flu jab etc and am careful about taking new meds etc. I think very definitely you need a neurologist because I personally don't think your problem is a skin problem per se, rather one of the symptoms is manifested into your skin which isn't unusual considering everything is shown on the skin to some degree - I think you're right, what you have is nerve pain. I have a friend who was experiencing similar issues and he found out after seeing an osteopath, that it was due to a compression in his spine which was causing pain to flair up over his body. He said sometimes it was like a fizzy, spidery sensation on his skin all over and often painful. If I were you I'd make an appointment with an osteopath or someone who has experience with muscularskelletal problems and see if they can shed any light on it. I'd also be very firm with my GP about being referred to a neurology department, it's not fair on you to have to cope with this problem which is effecting your life so badly when they are people who can definitely help. Good luck with it all.

[Carlettejaque in reply to Hidden]

Thank you for your support and suggestions. I have seen an osteopath but the skin pain is not a pinched nerve. It started afyer using stetoid cream for the initial red sore skin patches. I think my immune system attacked my skin and has caused neuropathic nerve damage. I really do need to see a neurologist. The dermatologist might be able to help get me off the steroids with other immune suppressing meds but he said himself they are all pretty toxic and i doubt my IBS will cope with them. Oh well, i can try. Thanks again for your support

[Hidden in reply to Carlettejaque]

I think you're right, your immune system went into overdrive and attacks you! I wish there was more research I to these types of issues so we all felt less armed and lonely with it when it occurred. Its both frustrating and lonely when your in such discomfort. Please share your outcome with is if you get one. Take care.

[Carlettejaque in reply to Hidden]

Thank you❤

[lovesradio]

I am absolutely backing what Vixrimes is saying up to the hilt. Referral to neurologist and possibly a physio who is up to speed on neurological conditions.

[Carlettejaque in reply to lovesradio]

Thank you for your reply and support. I have replied to vixrimes. I definitely need to see a neurologist. Its just difficult getting doctors to agree to what you want.

[ahhh453]

Hello I’ve seen online various medications and injections to stop the immune system mainly people with severe psoriasis have this medication. It maybe worth researching the uk top dermatologists and pay privately to see one of them for a consultation. Most are in London but they generally do offer great advise and if they don’t have the answer they have access to colleagues who do know the answer.

[Carlettejaque in reply to ahhh453]

Thank you for your reply. I am under the care (if you can call it that) of a hospital consultant dermatologist. I have no faith in him. I don't have the finances for private consults. I really need a neurologist i think. I feel part of the problem is skin nerve damage or perhaps my immune system is attacking my skin. Also, my IBS stops me from travelling anywhere and I'm a long way from London.

[ahhh453 in reply to Carlettejaque]

I’m in Norfolk but had a skin issue I consulted with a dermatologist in London. This can be done over the phone if your too far away. Call your gp tomorrow and ask to be referred to a neurologist??

[Carlettejaque in reply to ahhh453]

Thank you for your support👍