Behcet's Syndrome Society
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Feeling like pooh!!!

Hi all

Just on here for a whinge and moan again! I have done a lot of that lately. I am in a relatively average flare at the moment, ulcers on head, chest and legs, really tired and have had a sore head, neck and back all week. But today I woke up and my little finger and the one next to it are so painful to move. Really hurting as I am typing this (at work as usual, not getting much work done today). It hurts all through my hand. I usually get achy but not this much pain. I can now sympathise will people with severe arthritic pain. Not sure what I can do as this seems such a small thing but really painful for me.

Any ideas guys! Or is this the start of a new regular pain I just have to put up with!

Needing hugs today

Angela

x

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Hi Angela,

Sorry you are going through a flare. Whereabouts is your head pain? I had minor skin cut on scalp turn into two swollen tender lumps, one large one on top and one large one at base of skull. When I lay down to try and sleep at night my head throbbed & it felt painful in a diffuse kind of way. I did not even know I had an infection on my head that turned into cellulitis & lymphadenitis needing antibiotics. The large lumps were swollen infected lymph nodes.

Since then I am having a few more battles with Staph. Today I am fighting back with Diclocil (oral) prescribed by my GP. He also said many people use Bactroban in nose at same time...so I'm going to do that as well.

I also have the spine pain (neck & upper thoracic)...I wonder if it is from the Staph??? It will be interesting if some of that pain subsides. It is relieved temporarily by Paracetamol Osteo. but I don't like to take too much because of potential damage to my liver, which is already struggling.

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Hi Angela, its the odd thing about Behcet (and probably other weird illnesses) you never realise how much trouble one little problem can be.

It boggles me like you that a finger can cause such gyp... but hey it really can.

I couldnt sit still in a meeting the other day because my elbows hurt so much.............I would get laughed out the room I'm sure if I said anything about it.

I dont have anything helpful to say other than I try to do something that doesn't involve the offending body part.

I'm taking some steroids right now so feeling a bit more comfy but I know they are not a long term solution...........at least you are in work :-)

Well done I say!

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Hi,

Bless you hun. Behcets really is pooh. I have had a flare since beginning of March. Really suffering with headaches that build through the day and last between 2 and 4 days at a time. Ulcers bad too.

I know how functioning at work can be a struggle. I work 9-1 Mon-Fri and that is enough for me. Some days I don't even know how I manage that especially if my tummy is bad and I keep having to go to the loo. Got an abdo scan on Friday so I might find out what is going on there, well hopefully anyway.

Chronic fatigue and pain is really hard to fight through and most of the time I think I function on autopilot.

Sending you a big hug and hope you start to feel better soon. C x

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hugs to you!!!! and well done for making it to work and keeping the hairy side out! good on ya.

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Hi Angela and everyone

I'm a bit the same - I usually only ache in the hands but the ache has turned to real pain - and yes one little finger can let you know it's there!

Nothing much to say except take plenty of painkillers and rest.

Btw is anyone on indomethacin? I was, then was taken off it (because I am on so much medication) but was told I could take the odd one - works wonders!

Lesley

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