Face Pain - can anyone advise?: I'm in limbo... - Behçet's UK

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Face Pain - can anyone advise?

goodlife
goodlife
11 Replies

I'm in limbo, with behcets suspected.

I'm having face pain, my face is sore to the touch and I feel crap to say the least.

I'm having a bit of a relapse, started with roof of mouth ulcer and increased joint pain.

Anyone have any experience of pain like this connected with Behcets?

Thank you Jill

11 Replies
oldestnewest
devonshiredumpling

Not my face Jill but my elbow! For a couple of months now just to the front of my right elbow is incredibly sore to the touch - it feels like the worst case of sunburn ever. It hurts when I move so that might signify joint involvement I suppose. I spoke to my consultant about it and he said that, although nerve pain is part of the syndrome, my pain isn't in the 'usual' place. He thinks it hypersensitivity of the skin - also a known BD condition.

I'm in the middle of quite a serious flare right now and said elbow kept me awake all night with pain so severe I was near to tears.

Having said all that, you MUST mention it to your consultant or GP whenever you next see them.

I'm taking Tramadol for pain relief, nothing else touches it.

Hope that helps

Di

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andreafm

Hi there Jill

It could be coming from the mouth ulcer as I get pain on the outside of the face when I get my ulcers particularly if they are deep. If you are having a flare it maybe that the inflammation in your mouth is radiating to the outside

You have lymphatic glands throughout the cheeks and face and they work hard to get rid of the inflammation and can become painful

Also I have big scar tissue lumpy areas in my mouth where the old ulcers have been and they still hurt and flare up with pain, even though there isn't an ulcer.

Like Di has said you need to let your Consultant or who ever looks after your Behcets know. It may well help to confirm your diagnosis.

Andrea

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Hidden
Hidden

It could also be Trigeminal neuralgia. My sister and I both get that a lot and we both have BD.

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Hidden
Hidden

And re skin sensitivity - sometimes if someone touches my skin I feel as if it is full of splinters. That is to do with nerve endings.

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goodlife

Thanks folks, some really interesting responses. I had hypersensitivity of the skin on my limbs when all this started 10 months ago.....I have managed to reduce down from a massive dose of Gabapentin, and feel much more lucid so am loathe to crank the dose up again. It makes sense that this new sensitivity has come along with a flare.

Tigerfeet...how unbelievable that your sister would also have BD. Part of me thinks it must be nice to go through it with someone else. (That sounds wrong but I hope you know what I mean)

Its also not something I would have thought of for the mouth ulcers to trigger nerve pain...and yet completely makes sense that they could.

I see a rheumatologist privately on 21st and I wonder should I have checked that he has experience of Behcets?

Comments very much appreciated so thank you,

Jill

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bailey23
bailey23
in reply to goodlife

Goodlife

I have the same problem with the side of my face, all around my ear and even my hair. I cannot touch it, it is so sensitive. I can only describe it as being slapped really hard on the side of the face and then it is too sore to touch! I actually asked this question when I first joined this site and like above I was reassured it is probably a side effect of the nerve system. However painful it is, it is nice to know you are not a freak and others understand this!

I have the pain at the moment and find Naproxen takes the edge off it. But cannot take Tramadol as I still work and I dont think falling asleep at my desk would look good!!!!

Angela

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Hidden
Hidden
in reply to goodlife

:-) It doesn't sound wrong at all! My sister was only diagosed a couple of years ago. We don't see each other often but had been discussing symptoms. Although we had a lot that were similar, we also had a lot that were different, so she was sticking with the Rheumy who diagnosed her with arthritis and waiting to see what he came up with.

Then she was admitted to hospital with emergency throat problems. I went to visit and noticed the sores on her arms and legs - rolled up my sleeves and trouser legs and said 'now tell me you don't have BD!' From there she was referred to the specialist who diagnosed me and had her diagnosis at the first appointment. Luckily her Rheumy is a nice guy and so she is sticking with him for treatment. I daresay he would have got round to the right diagnosis at some point.

So at the moment it's more of me advising her than anything, but she is always there to share, laugh and cry with when no-one else understands. Much as I am not glad she has it, I AM glad I have someone to share with and she doesn't have neuro so that's a mighty relief.

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goodlife

Thanks Angela, I lost count of the times I woke up last night. I almost feel like I have sinusitus, with pressure around my eyes, pain under my eyes but no phlegm. Owwww.....

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Charms1

Goodlife;

my head--- forhead, top of head, back of head are sore to the touch and also ache...with a flare really badly. & even with out a flare, it just is sore.... motrin helps me; naprosin hurt my stomach.

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goodlife

Thank you Charms, I've never heard of motrin..I shall research it so thank you

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goodlife

Tigerfeet....sorry I am still getting used to this site and missed your reply.

Yes, you have worded your response very well, yes how wonderful to have someone who truly understands and yet it is dreadful that your own sister should have such a rare condition. My husband does believe me when I start complaining about a new ailment of a body part, and yet I keep getting clinical confirmation of each new issue so I am getting less embarrassed to complain about something new.

I do find it scary though :-(

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