Behcet's Syndrome Society
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Rant- in pain- eyes playing up n more

iv just had a good old cry, sob rather. im ulcer free this week but was ridden last week. this week its the headaches and arthritis, im literally hobbling along at a snails pace due tot he pain in every joint, n when i say every i mean every joint. im in agony. my bvody is on fire! the codien aint touching it. the pain in my head is soooo intense i wanna scream, feel like my heads about to pop off my neck, and im twitching all over with muscle spasms its madness. lost my vision in my right eye again before now its like a cloudy tunnel vision in it. hope it comes back but scared i may have lost some of my sight. i cant cope with the pain. mum keeps telling me to just go to bed n im beggin her to take me somewer for morphine. i cnt cope. keep stuttering when im talking, my arms keep throwing things im trying to hold. its so scary. dnt know wats going on with me tbh. the pressure in my neck is awful, cnt hold my head up without support. im in tears x

i cnt stop twitching

dunno wat to do sobs

i hate this disease sooo mcuh

Anyone have any advice on stopping the twitching at least. its like toothache through all my limbs. im so fed up. this is literally excrutiating trying to type with my fingers.

havn a really bad BD night.

I knew it as well, but the baby needed a bath he was covered, food in his hair n everything, n i was already suffering. n then the older two wanted a bath so i had to do them n their hair. cnt even blow dry my own let alone sum1 else just pushed meself too far, n now paying the price. i need sum proper pain meds. im just on pred n its doing nothing, fl so abadoned by the medical world tbh. y cnt they giv me sumthing proper xx

iv just phoned the behcets nurse at liverpool centre of excellence, left a message hope they get back to me.

iv got 15mg pred left so thats just 2mos dose. which clearly isnt working, been on it over 3 weeks now. since mid sept. Also on Asprin, Ametripteline and cocodomol- just not doing anything for the pain at all.

Im so fed up.....

I hate this body... this body hates me.....

got to ring drs first thing just in case the centre doesnt get back to me i cant cope with this at all.

the pressure in my neck n head is so intense, my eyes are so sore, my body is swollen stiff and aching.

hope the centre of excellence gets back in touch, im so tired now, its been like this constant in june just fl so abandoned by the medical world. my GP is crap but its a ring at 8.30 n see if we have any appointments rigmorole, i tried this mornin n they had all dun.

Anyway im so tired, im really sorry for banging on, but this is a blog i guess so i cn rant get it off me chest n no one has to listen/read if they dnt want to.

fingers crossed 2mo is a brighter day

11 Replies

Bang on and rant as much as you want to hun, there is always someone to listen to you.

Get down to your GP - take someone in with you if you need some support, but sit there and insist on better pain relief. Ask to be reffered to a Pain Specialist - that's one of the things to come out of the AGM, most trusts have them. You should not be in this amount of pain, there is no reason for it to happen. Ring your consultant again, you have obvious problems.

Its one thing ( only one?!) that really gets to me, is how I've had to argue my case for sometimes basic care with the medical profession over the years- and I am sure after reading posts on this site that its not just me. I find if I am reasonably OK, then I can stand my corner, but if I am feeling as you are then it is much more difficult to do.

Ask for an emergancy appointment at the GPs if there are'nt any on offer today, and if its still negative tell them you either will need to be seen by a GP or you will be going to AED.

If they dont make time to see you, get down to AED, You sound like you need to be checked over, wont be wasting anyones time, especially where your eyesight is concerned.

Hope it goes well for you, and you feel better soon x


Hi Lizzykarma

You sound just like me at the moment and it is pretty dreadful I know. I do hope the Centre of Excellence nurse gets back to you today. It feels impossible trying to sommons up the energy to contact Dr's to help.....especially with kids to look afte and no sleep....Is there anyone that can speak on your behalf to the Dr's etc, even if it's to get through and you speak after. I get my husband to do the phoning and then he passes it to me.

The painful twitching is a real humdinger as they say. I can't say I have found anything to touch it I am afraid. Someone else here may help you.

I tend to have regular hot baths with drops of lavender oil and epsom salts. Lay in the bath for a while and massage yourself while in it. This is a natural muscle relaxant and may help with the twitching and painful spasms and help you sleep better. If you haven't got any indoors I know that Tesco sell it, if you can someone to pick some up for you.

It is worth a try...I do hope it helps a bit while you are waiting.



Just sending gentle hugs and healing thoughts darling - get yourself seen, kick up a fuss. It's the squeaky wheels that get the oil



Bless you hun, I know how the bad heads feel as was wiped out myself last week with really bad head. My G.P has given me Sumitripan which helps.

Feel for you and totally agree with other bloggers you need to get to see your G.P or a consultant.

Don't suffer anymore than you are already.

Sending hugs x x


went first thing this morning got seen, upped my ametripteline, back in a week and will then look at opiates if its not working. was a much more positive visit than i had worried tbh. last time was awful. but was the head gp this time. The letter from consultant sayin behcets was there tho, so he also gave me my pred script without battle. got to go have more bloods done today, sobs, and then bk next tues for review.

head is still killing tho, theres no immediate fix to the pain, like nothing to take today and i have work tonight. so tired of this battle. still waiting for the behcets nurse to get back in touch with me as well.

thanks for all your lovely comments.

liz x


Hello lizzykarma

Behcet's Disease in your life disposal. We understand that medical treatment. All your friends are hugging tight to live with this disease should not we be delivered. We are beloved of God's servants, God allows pain and suffering that our beloved servant trying our patience. There are always new hopes and discoveries about the treatment of the disease can be.

to discuss


Hi, we don't know if I have Bd yet but I get similiar symptoms (thankfully not the vision loss) due to another condition and know what it's like to be in pain there's no words for, bedbound and twitches/spasms/jerks. Normally I'm left to suffer but recently it happened when I was already in hospital and a mixture of diamorphine and medazalan helped. I had to fight for over10 years to get pain relief, you really need a pro active doctor.

I'm skipping going to the localBD doctor and going to go to one of the centre of excellences, could you be reffered there?

Gentle huge in the mean time


iv been trying hun.

Iv rang and left 5 messages for the behcets nurse at the liverpool centre of excellence. She tried to contact me once back last week and sadly i missed it, however hasnt attempted it yet again this week despite me leaving other messages and when i was at the conf i spoke to the opthalmologist specialist and nurse from the liverpool centre of excellence and they said they would try and hurry it through for me and would get her to ring me by tues as they could see how bad i was and that my vision was worrying. iv still heard nothing. its so frustrating isnt it.

my face is twitching as we speak lol which is very bizzare and my right arm still going.

having another bad bd day today and really fatigued. just gonna try go to bed.

the extra ametripteline is obvs gonna take a while to get into my system anyway. the other current meds aint worked so far. was hoping he would help me out with something stronger today tbh. Never mind.

Im sure my appointment for prof moots will arrive within the next yr lol.

hope ur ok and well-ish (as well as u cud ever be with all this crap)

I also have susp MS as well which they are taking their time finding out tbh.

Anyway catch you soon

thanks to everyone for ur responses. on a downer tonight so prob best if i just take myself off to bed.

speak to u all soon

sweet dreams xx


Lizzy, just a thought: I suffered from twitches and jerks for a while, cups flying out of my hand or slopping the contents, legs just jumping up in the air and all that sort of stuff.

It wasn't the BD at all, it was the result of combining some of my medicines, specifically the ones that affect your serotonin levels. The mixture of drugs that was causing my problem was Venlafaxine (antidepressant), Triptans (for migraine), and Tramadol (for pain).

Once I was aware of this I cut out the tramadol completely. The jerks and twitches disappeared almost immediately.

Apparently 85% of doctors do not know about this (sounds a bit familiar eh?).


hmm yeah i only re introduced tramadol yesterday though? as i hate the drug... i cant stand it makes my skin crawl.

im on ametripteline, omeprazole

asprin, and co-codomol.


My poor friend, I wish I could give you a hug, and give you a few days rest from the children. You may find that it will take while for the pain drugs to be right for you. I think we have all had to try different ones/doses to become the most effective. We all have to be patient patients and suck it and see.

I am on a variety of pain killers. Has anyone suggested that you would benefit from a trans-dermal drug like fentanyl?

All the very best. x


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