Anklosing Spondylitus getting worse

justinbarrow

Hi - I am 32 years old and i have had anklosing spondylitus for 12 years but trying to sleep is becoming unbearable as my neck is so painfull sometimes i wake in the night not being able to move my neck and have to slowly move it side to side.

One thing i have noticed when it is very bad is that both my arms twitch and shake and this subsides. I am now finding myself sleeping upright as i cant bear laying down (turning over always wakes me up) because of either neck and back pain.

I had my usual follow up with my specialist and broke down in tears :oops: and told him that i cant sleep and that i ache all over and felt like why is this happening to me as one day i just woke up with swollen joints and couldnt move but prior to this was fine i was even in the running team at school and have medals and certificates only to be laid up with this condition (sorry if i am sounding all gloomy) i know everyone has their conditions but just sometimes it just gets me down at night anyhow my specialist then explained he that i have another thing called Fibromyalgia in addition to my A.S.
I am feeling very low at the moment due to this and am suffering extreme tiredness all the time.

I am currently taking amitriptiline at night along with Diclofenac and am taking embrel/entanercept injections but still cant get to sleep.

Sorry if this is a long post but i just wanted to know about the thing with my neck pain at night making my arms twitch they do this more so if i try and lift my arms its horrible.

Hope everyone is feeling ok sometimes i just wish i could flick a switch for an hour just to be pain free :roll:

elnafinn

Hi Justin

First of all welcome to the site, I do hope you find it of benefit to you. I certainly have.

I am very sorry that you are in such pain and now have been diagnosed with fibro as well. Unfortunately one of the side effects of fibro is tiredness.

I see that there is a National Ankylosing Spondylitis Society (NASS) which is the only registered charity in the UK working for people with AS and their families. You may already belong to this but I wanted to mention it just in case you were not aware. You do have to be a member though to partake in the forum and to get help on the site generally. I note that they do emphasise that daily exercises are very important and show these. You do not need to be a member to view them.

I do not know if any of the special pillows on the market would make you have a better night's sleep. I know a little what it is like not to sleep well and it does make all the difference to my wellbeing if I have a good nights sleep. Everything seems worse at night too when you are lying there and all you wish to do it sleep. :roll:

I wonder if the unpleasant sensation when your arms twitch and shake is because of the nerve endings in your neck being restricted at times.

I too wish I could flick a switch for you to give you some pain free time.

Sorry I cannot be of much help but you certainly have my sympathy. Just calling in here and reading others threads, posting often makes you feel marginally better.

Look after yourself,

Elna x

woodbon

Hello, Welcome to the forum! I hope you find it useful and helpful. It sounds as if you've go a lot to go on with and I'm not surprised you'r finding it so hard. I don't think theirs anything at all wrong in showing your emotions, and sometimes its really good as the medics can see just how you feel about things and you are having problems coping. If all they see is someone who looks as if they are coping well and have got their life together, you will not be getting the true picture and maybe won't offer the right help you need. Also its good to remember we do all feel like this at times, you're not alone. Thats where this site is so very good. People on here can show their emotions and let go. I hope you soon start to feel a little better, Love Sue

justinbarrow

Thanks for the messages i didnt realise how many people can be going through a tough time with arthritis conditions.

I have been advised to try and lose some weight as because i have put on weight due to mobility problems its such a vicious circle you do to much and you end up laid up for a few days in agony and then you cant do the things most people can do to lose weight.

Sometimes when its bad at night the pain sometimes goes down the back of my legs.

I always feel that there are people a lot worse off than me and try and cope the best i can and with these forums feel i can share some experiances and share things with other people with similar problems.

Thanks

elnafinn

Hi again Justin

Losing weight always helps but it is often a vicious circle I appreciate that very much.

I can sympathise as I too get pains down one leg, pins and needles, burning sensation down the outside of my leg and a pain in the butt to add to it as well - it has been diagnosed as sciatica but all stems from the back. Physio has done no good so am waiting for an appt to see a spine specialist to see what he suggests. Thank goodness I am not in pain all the time but when it is there it is not good at all.

Yep, there are loads of us on here with all kinds of arthritis and we all try to help each other and raise morale when peeps are down.

Has your gp mentioned a course of acupuncture, physio for you or an appointment to start attending a pain clinic.

Chin up,

Elna x

justinbarrow

thanks again, I am awaiting a course of physio and some hydrotherapy which got me a bit more flexable the last time i had it

I am also using my heat pad a lot aswell for my back and really watching my posture when sat at the PC.

getting upstairs and getting in and out of a car is quite a task at the moment i am finding people looking at me in car parks because i look ok and then grabbing onto the door to support myself to get out of the car (if only they understood)

thanks again everyone for a warm welcome to the site.