Hi again
Has anyone got attacks around the cervical area of the spine between shoulder blades and the base of the skull?? They feel like a wall of bricks is sitting on that area or plain pain. Is there a test to diagnose this symtom? What medication are you taking for this?
Thank you so much for any input.
Lara
Hi Lara,
I was beginning to think it was only me !
I have had severe pain in this area for over 4 weeks now constantly and I don't know what to do with myself.
I can't sit comfortably, I can't lay comfortably and I can stand but only for a couple of minutes maximum due to leg joint weakness and pain and I usually use a wheelchair.
I am taking Tramadol and dihydrocodiene for the pain which is my standard favourite cocktail as I get an awful lot of pain and this concoction seems to work best for me.
I don't know what is causing it but assumed it was inflammation of the spine and surrounding tissues as I haven't done anything to cause an injury in this area, it just came suddenly one night and has been there ever since.
I am going to speak to my consultant next time I see him unless it really gets out of hand beforehand and I may well speak to my GP in the meantime.
Sorry I can't offer much comfort by the way of information on the cause and what to do about it. I am just treating it as yet another pain that will hopefully shift off when the inflammation goes down again.
All I have to offer is big hugs and buckets full of sympathies and hope you get rid of yours before I do. LOL.
xxx
I am so sorry to hear about what you are going through.. I don't know what to do about it either for the time being. I've been taking arcoxia and resting and it seems to be somewhat under control. I was starting to think that I may be developing MS.. I am still not excluding that possibility. I am getting an MRI in a few weeks.
Take care,
Lara
I get it too, its a real huge problem for me lately.
I wrote a pain blog a few days ago with that pain in mind....I was recently took off diclofenac as long term use of it is not good. I'm eating co-codomol like sweets and hoping to get a better option after going to the pain clinic tomorrow.
its quite blinding when I wake up.
As far as I know there is no test as such, my arthralgias don't cause swelling just intense pain.
At least you know you're in good company
Hi good life
Just wondering how long were you on diclofenac before discontinuing it? I have been taking it for 3 weeks almost every day (sometimes when the side effects get too bad I take a break from it for a couple of days). Do you know what the risks are with long term use? Thanks!
Hi Lara, I know what mine is and I have suffered for 7 years now. I have sever Spondyliitis of the spine. Some days I can't sit, lie, read a book, hold things and the pain is unbeleivable. Iam on high doses of Gabapentin, Cocodamol and steroid injections. I don't know how old you or the ladies are but mine started when I was 54 and I got a diagnosis about 4 years later. I was told this happens to everybody from the age of about 45 yrs, some people don't even know they have it, just little twinges now and again. Others need meds to control it. In my case it is degenerative and progressing quickly. I sometimes wonder if it because of the BD. my body can't fight things off as it used to, plus my age. You need to get a spinal scan to confirm if you can persuade your doctor. Mine told me it was stress, and all in my head. I had to stop work ....teaching primary with intense pain and dizziness was impossible. I only got the diagnosis by fluke. My husband took me for 3 months break to Spain hoping the heat and relaxation would help. It didn't I finished up passing out and was rushed into hospital. They were absolutely brilliant and asked me questions, did the scan and hey presto....a diagnosis and meds. When we got home I changed doctors and put in a complaint.
Anyway that's all I can tell you but do t be like me, don't wait get it checked out NOW.
Let me know how you get on.
Hugs and Smiles
Billi
Oh Billi that's called “confronting the brutal reality”... I kind of wondered about that myself but just can't bear the thought of being told something else is breaking or falling apart...does that make sense Lara and xandii?
It seems like one thing after another.
Billi? Does the warm weather help it?
I am sure mine got worse when the damp, monsoon weather hit.
Thank goodness for you old timers.
Is there anything they can do for it other than pain relief?
Jill x
Yes hun .... it really makes sense to me !
I just want to know where the self destruct button is and who decided to press it for me when I wasn't looking. 
What I really want to know is when are they gonna make co-codamol or tramadol in strawberry flavour to make them all much more palettable ?
xx
I'm going to be serious for a minute (gives Xandii time to get up from floor).
Ready?
I take some of my pills with fromage frais. They go down more easily with the thicker substance and the stronger the flavour of the ff the less after taste of yucky pills. I also undo capsules and sprinkle contents in and crush some of my pills. NOT ALL AT THE SAME TIME - I NEVER MIX THEM.
BUT this is on the advice of my Docs, so I am not recommending it, just suggesting it might help some peeps.
Oh and a little bonus is that I find the cheaper the fromage frais the stronger the flavour, as for example strawberry flavour contains concentrated strawberry flavouring, whereas more expensive brands may actually be flavoured with real strawberries - good grief, who'd have thought it?
Why on earth didn't I think of that one !!
I feel totally stupid now ..... what a brilliant idea to solve the horrid taste problem. Those kids ones that are in the tiny pots look nice as they often have real fruit juice in them don't they.
Thanks for the tip Tiger, your brilliance shines through as normal hun ... I will dispatch OH to the shops to get some in for just that reason. Mwah !
xxx
Brilliance eh?
So brilliant I went to my son's graduation with blue eyebrows.
I think that's one for a new thread ..'how was your day' or 'what did you do this week?' or somesuch.
mmmmm ........ nice !
* giggling furiously and crying with laughter
How very ....hmmmm........modern ?? .... and trendy !!
* te he he he he
Hi,
Yeah, it does make sense.. reality is freaking scary right now. I'm usually on its side but this condition is starting to make me wonder if sometimes it is not better not to know certain things. I've called a second degree cousin who I knew had had some auto immune issues to find out that she's been diagonsed with MS. She also told me about another relative whose son died a few years back from encephalitis after getting a vaccine. They said it was some sort of a cross-reaction but to me it sounds disturbingly similar to neuro behcet's. So it definitely runs in the family and it has a bad prognosis.
On the other hand I do tell myself that in the end it is better to fight and keep try to stay ahead of things. At least that way you can make more informed decisions and minimise the amount of physical pain on yourself and emotional pain you may cause to the people who love you. But it's damn hard. Every now and then I break down into tears and rage and I can feel it's starting to get to me and affect my work and my relationship. I'm not sure where to go from here.. but I know myself, I will figure something out eventually.
I'm not yet diagnosed with Behcet's, but I know the type of pain you're describing. I've had it on and off (more on than off) for almost a year. was told it had to do with the nerves that run past there and my usual cocktail, Ido like that phrase, is Tramadol and Gabapentin. It doesn;t take it away but it lets me function. Sorry I couldn't be more helpful.
Khidax
Hi Lara
I get this too but not contstant. In the last 12 months I have had 2 episodes which lasted about a month. The first time I got it I went to A&E because the pain was so bad I was throwing up. I was given Tramadol and Diazepam which helped. The second time I got it I got some more Tramadol from GP and this also helped. I had a lovely Dr in A&E that was really interested in the Behcets side of things and was really thorough. It was decided it was a flare of my Behcets that was causing the pain as it came on suddenly with no reason for it.
It is so miserable when you are in so much pain but fingers crossed you will get some meds that will work for you and ease your pain.
Hugs
Angela
xx
Hi everyone
I think I have been getting it for many months, except that I thought it was aches and pains caused by my bed or my pillow or something. Last week though I had a very bad attack, it basically put me to bed for an entire evening. It was much worse when I stood up so I lied down and took arcoxia which seems to dull it for a while. During the night though two of my fingers went numb and I had to keep moving them for a while to make it better. It went away eventually but I do get a tingling sensation in my fingers every now and then. Do you get those at all? maybe it's the medicine.. I don't know.. I'm so lost right now..
How funny ! I get the exact same thing in my right hand. I have a damaged wrist so I was putting it down to that put I get tingling, pins and needles and sometimes complete numbness in my ring and pinky fingers. Other times they are just flipping painful as well.
Like you, I was convinced it was through sitting or laying in my bed and it feels like there is a brick between my shoulder blades which I constantly keep rearranging my pillows and fluffing them up to no avail.
It all sound too coincidental not to be the same thing caused by the dreaded BD doesn't it ? I reckon we have all got the same sort of problem caused by inflammation in the places where the nerves come from the spine, hence the hand/arm things that seem to go with it.
Good luck everyone, hope you all get sorted out really soon. As for me ...... another cocktail of painkillers with the newly suggested fromage frais !
Tootles all xx
I'm a bit befuddled by all the posts so forgive me if I have misunderstood -
Lara, are you saying you have been diagnosed with BD related arthritis in your C spine and want to know if anyone else has it and what they do about it?
I have similar experiences/symptoms to some of the posters above and could post some 'advice' here, but it could be completely off the mark if it's not relevant.
Hi Tigerfeet
I was wondering if these pains were arthritis of the spine. Do you know how this condition is diagnosed? I have a referral for an MRI. Are there other tests that you know of?
Thank you!
Lara
Hi, I don't have a definitive response to that but will post a general blog later about some of the symptoms mentioned on this and other threads.
Hi guys
I have been told by my GP last year that I probably have BD. And the treatment she offered was arcoxia. I took it for a while until I could not tolerate it any more. Then I stopped taking anything altogether which now I realize was not very smart. 2 weeks ago after a particularly stressful period at work I started getting these very painful spine attacks so I was wondering if they were arthritis and if anyone else gets them. I have specialist appointments coming up and an MRI so hopefully I will get some answers in the coming weeks.
It's a sort of a pressure coupled with to tingling and it keeps moving from the area between my shoulder blades and the base of my skull.
Hi guys
I have been told by my GP last year that I probably have BD. And the treatment she offered was arcoxia. I took it for a while until I could not tolerate it any more. Then I stopped taking anything altogether which now I realize was not very smart. 2 weeks ago after a particularly stressful period at work I started getting these very painful spine attacks so I was wondering if they were arthritis and if anyone else gets them. I have specialist appointments coming up and an MRI so hopefully I will get some answers in the coming weeks.
It's a sort of a pressure coupled with to tingling and it keeps moving from the area between my shoulder blades and the base of my skull.
Hi Everyone
Just writing to say that I did manage to get the pain and the nerve tingling under control after 2 weeks. I took Arcoxia for 1 week and now I am on Voltaren (diflucan) for the past 2 days - seems to work better as it has less side effects and seems to target arthritis pains quite well. It does give some funny mental things like a bit of dizziness and seems to make me see less well immediately after I take it. It also makes me want to sleep a lot but not with the kind of fatigue I had 2 weeks ago. I am hoping to be able to stay on it longer as it seems to agree with me. I also got some good sleep and rest and I am starting to feel like myself again.. Amazing feeling... But this was the strongest flare I have had so far. The drugs also seem to have help with my eye and kidney inflammation. I bet that when I see the rheumatologist in 2 weeks he will look at me like I am crazy .. Again.. I have no visible symptoms at this point - the mouth ulcers are gone, I have never had the genital type, my thrombophlebitis is very rare nowadays. What I still get is the cervical pain and the fatigue. I am hoping to get an MRI of the spine together with the brain. Just wished I had a clear diagnosis and knew where to go from here. Would you advise to go on taking NSAIDs even when symptoms go into remission?
Thanks for reading and just being there ...
Best of luck to all!
Hi everyone I have this pain for years and my doc gave me a steroid jab in my carpol tunnel and I had no pain for a few months it was great but its back again and I also find I can't sleep on my back my hands go numb and the pain is bad I take vimovo and panadol but no good
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