What ankylosing spondylitis symptoms do you experience?

I experience quite a lot of pain in my back during the night and wake up from it. Sometimes it helps with a hot water bottle. And on days possible, I sleep in to make up for the lack of sleep during the night. I have found it helps me to get extra sleep.

Hi, 

I struggle with a very stiff neck and I see a physio therapist regularly to help ease my flexibility. Does anyone have other ideas to keep flexible? I am so worried it will get worse!

Aaliyah

Hi there one and all, I suffer from and have had Spondylolisthesis/Spina bifida occulta which I have had more or less since birth. I did not get diagnosed until 1977 when my daughter was born. It all began with pains in my left leg and lower back and has gone on to become worse over the years. you have something like 25 bones in your spinal make up and I have 5 missing those that are there sit out of line further up I have a small hole which forms the spina bifida part of the disability and just above that an old fracture which I never new was there till 1977.I was offered surgery back then to fuse the spine together which would have meant steel rod and screws to draw it all together so it could be fused. Plus having to have a plaster cast all over my back and front also to lay face down for 6 months then turned over for a further 6 months and no guarantee that it would do any good in fact I could well have been in a wheelchair after it as the operation was a 50/50 risk. Having 3 small children at the time and no guarantee that it would do any good I did not take up the offer. I was employed full time till I was medically retired in 2007, because by then the condition was so bad. I was told that it would get worse over time, which it has and now get around with 2 crutches and a load of painkillers and nerve blockers, pills for cramp and all that sort of thing. i suppose the depression started in 2007 when I was medically retired I had been a police support officer for over 18 years by then. How I hated life then to have spent from the age of 15 working and also having served in the Royal Navy for 8 years. I had my first period then of depression then, I was then put on the usual meds they stuff you with I stopped taking them and decided to try and get on with life such as it was.  Who would have thought 6 years on I would lose the love of my life to cancer, since then it has been an on and off thing with feeling depressed.  So that is basically me...

The reason I joined this group was to see how others with similar things such as me was doing and to exchange ideas and thoughts on both this condition and the depression so if anyone has any questions please feel free to ask me .......  

Like Paul Steve I also belief that a good old hot water bottle helps from time to time, I use one regularly myself. My late wife invested in one of these back massage chair aids which helps as well it has a heat setting as well but sometimes it can be a bit to hard to use as it sometimes makes things a little bit worse. Since then i have been given another one which is not as harsh on you and also has a heat setting. 

Hi Aaliyah,

              I to get neck pain but I have a neck collar brace thing to support it but you can not wear it when in bed, you might try one of those support memory foam pillows which sometimes help. I to used to have physiotherapy but I never found much benefit from it in fact it more often made it worse. The last experience with a physiotherapist was not a good one I found him to be one of the most arogant people I have ever meet at that time I was having both a problem with my neck and left knee which was causing me to fall over as it just gave way from underneath me and I was suffering also with muscle wastage in the leg. 

As for the management of this condition I try to be as active as I can be which is difficult at times because of the pain levels I experience throughout the day. I can not sit for long periods of time and standing also affects the pain levels. I will say that after attending a course of pain management at my local hospital I am finding things a little easier from time to time. I also never thought that meditation was a good thing my belief was that this belonged in the 60`s with the hippies...lol   Till I tried the method that they were on about you need to find a quiet place to be alone and then lay down and try and clear your mind of thoughts, next star at your feet and imagine that they are relaxed then do or have the same thoughts of your legs being relaxed, gradually working your way upwards to include all of your body fingers,arms,shoulders,neck,head, chest, and your breathing which you need to inhale slowly and let it out all the time telling yourself the body is relaxed and you have no pain. Some find that also doing all of this with music or sounds also helps. There is also the part I use which is to imagine being somewhere else or to focus on something and expand it as you go along the relaxation programme. I imagine at first a pebble then some sand around the pebble then a beach with a lagoon with the water gently lapping against the shore and afterwards you sometimes fall asleep for a short period when you awake you feel so relaxed it also helps manage your day to day living. I have also found that by doing this it is also an aid to falling asleep at night and letting you sleep for a longer period. It often helps when I begin to feel down and start to get depressed with life.  

This thread could interest some of the new members!

Don't hesitate to discuss your experience and support each other.

When I'm reading your stories it's as if I'm reading about myself! thank you so much now I know I'm not alone

I have painfule toes and sometimes they become swallen which is very uncomfortable!

I understand the symptoms are the same for everyone: back pain, muscle stiffness... are there any symptoms that may occur but are not common? Just to know what to be on the look out for. Thanks!