Hi, I have Ankylosing Spondylitis and Lupus.
Does anyone else suffer with the name in the title? In my sleep I get woken with really tight spasms in my anus, it's like someone is blowing up a balloon really big in there! Only happens in my sleep but is so uncomfortable and painful.
Thanks.
Hi. I have psoriatic arthritis / axial spondyloarthritis. I believe I have proctalgia fugax / levator ani. It really started a few years ago and comes and goes.
When it started I thought it was haemorrhoids (which I've had before) so I tried all kinds of piles treatments that didn't work. After some further research I realised it was more likely proctalgia fugax/levator ani syndrome.
I have tried to find information about links with AS. There isn't much info out there but there does seem to be a link - which makes sense. I do find mine is related to how bad the AxSpa is.
You have my full sympathy - I find it absolutely unbearable when it wakes me at night.
They say using a salbultamol inhaler can help when you're having an attack. I have asthma so I've been able to try this and must admit it seems to help a little but as I never know when an attack will end anyway, it's difficult to say how much it's helping.
Have you spoken to a doctor? Mine started during first lockdown so I didn't turn to GP as there was no way I was doing that over the phone. I must admit I'm scared of any examinations that would be involved if I went to the doctor.
Hi, thank you for the reply.I'm struggling to find info that links it to AS too. Not spoken to the doc but I've got a rheumatology appointment at the end of the month.
It has never happened in the day and whilst sitting or standing. It's really strange. I think I have problems with inflammation and all the nerves around that area, including the pudental nerve, which explains it.
I might look into the salbutamol, thank you. X
Same. Would be interested to know if your rheumatologist knows anything about it.
I will let you know X
Although, saying that the rheumy nurse had never heard of rib pain being a feature!
Yeah I find they're not very good on stuff like this. I go to my GP for that kind of thing even if it's related - like I get Achilles tendinitis related to the AxSpa - and they at least know what treatment to send me for. Rheumatology tend to just shrug or send me for a scan and then do nothing with it.
I get it in patches, happens a few times over a week or two then nothing for ages - like an excruciating pain that nothing can ease. I hadn’t even considered it could be linked to my AS though!
I have AS, and get similar spasms, but mine is usually sitting quietly in the evening. It feels like a hit poker has been inserted in my anus, and everything goes in to a painful spasm. Usually continues for 10 mins or so, then subsides. I’ve never enquired about it though. It is excruciating when it happens 🤗
Hi,I have it too and I agree it is excruciating. I suffer from fibromyalgia but don't know if there's any connection. I read that if you get into a squatting position it helps so I usually sit on the loo as soon as it starts and I find this can help. A word of warning though, the pain was once so bad I actually passed out and fell face down onto the bathroom floor breaking two teeth!
There's a reasonable summary of the condition here: medicalnewstoday.com/articl...
It seems logical that if the nerves that supply that area are affected in your back that it would be more likely to occur.
I remember having it when I was younger - but I think before I developed Rheumatoid Arthritis (age 37) and, for me, it was definitely associated with stress.
I have experienced this for many years (have also had scoliosis since a child) usually during the day and often when I was in a rush to go out so probably a bit stressed. The only way I could get some relief from the awful pain was to lie down and even then it took about 20 mins to ease. I now get it less often, usually at night. Have now been diagnosed with spinal stenosis and I am wondering if there is a link.
I have spinal stenosis too now...I wonder?
Might be worth us doing some research!
that sounds like a rude word. Sorry can’t help but someone on here might🤞
Im so glad you mentioned this I too get this from time to time and it's always during the night sometimes it lasts for hours and other times it's over within 30 minutes It really drains me as I also feel so unwell during it, but when it clears it's like it never happened
I’m finding this interesting as hubby has had this problem for many years. Always whilst in bed at night sometimes lasts longer than others but obviously keeps him awake. I’m not sure if he went to his GP years ago. It certainly hasn’t been diagnosed. He dosnt have AS but does have Spondylolysthesis so this is interesting. He says the pain is dreadful. I hope you get some help & ideas for coping. Thanks for posting.
yes! I get this and have found a couple of things that help. I have psoriatic arthritis. I find that if I can keep things moving and don’t get constipation that helps to keep the episodes from happening. My doctor gave me a pill that relaxes the muscles in my body that I keep by my bed and sometimes take, however, it is usually gone in about 20-30 minutes. But what a painful time that is! I have been told that by placing a firm rubber ball in the area in front of the anus and sitting on it helps to relax the spasm. I’ve tried that as well, and it’s been somewhat helpful. I also find that I get some relief by going to the bathroom and bearing down trying to make poo. I’ve also been to the pelvic floor physical therapist and she’s taught me to relax the muscles that are spasming. The thing I keep in my mind is that it will pass with time. Good luck to you!
I also suffer from this and it’s horrendous! I have RA ,IBS, endometriosis and sphincter of oddi dysfunction. Initially I thought it was my endometriosis acting up when I’d get that awful pain in the middle of the night but I discovered that buscopan and a heating pad really helped. I had tried everything under the sun before and nothing really worked so I now keep buscopan beside my bed and have a heat pack that I can put in the microwave. It really does bring good relief whilst you’re waiting for buscopan to kick in. My pain could go on for 10mins or up to 2 hours , it was so bad at times I thought I was going to faint. This coming from someone who had zero pain relief with my 3 labours !
Thank you for all the replies. It does seem like there could be a connection.
Hi, glad yours in better. That's interesting - I'm convinced it's an inflamed nerve thing.
Cold and pain go hand in hand
RA severely effected by lack of sleep? 
Pain in the neck!and shoulders..
How do people find Amytriptyline?
a update on returning to work.
