has anyone with fibro ever been diagn... - Fibromyalgia Acti...

Fibromyalgia Action UK

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has anyone with fibro ever been diagnosised with Proctalgia fugax?

18 Replies

this is an extremely severe spasm pain in the bottom. episodes last come on mainly at night but can be during the day. it is the most painful 15/ 20 mins ever. you end up on all fours rocking. it is thought to be a disorder of the internal anal sphincter muscle that goes in to spasm. i suffer approx 6 episodes a year. it reduces you to tears. i have suffered this attacks since i was about 26 years old. i am now 49 years. as the pain passes by the time you reach a doctor it has long since stopped;. however whilst seeking diangnosis for what turned out to be fibromyalgia, i had the good fortune to meet a great bowel specialist and when i explained these epidsodes i had suffered for years (feel like you want to be put down during attack) after conducting tests which were clear he told me i also suffer from above?

i wonder if any other fibro peps also suffer this?

18 Replies
jayjay profile image
jayjay

Hi Happe, OMG !! i have suffered with this on 3 occations now, and i thought it was just down to the fibromyalgia, and so very severe spasms of pain and have lasted for about 20/30 mins each time, i also thought it was also to do with my IBS, and every time it has happened it has been at nite, thankyou for letting us no, as i have never heard of it before, thanks again

:-) jayjay

Wearyme profile image
Wearyme in reply tojayjay

Every once in a while randomly I get the worst anal spasms in the middle of the night. They last about 20 minutes and nothing seems to relieve it. I looked it up online and it doesn’t seem to be anything serious so I really haven’t talk to my doctor about it.

no the epidsodes pass before any medications can take effect, they are are infrequent and the only medical advice is to run a quick hot bath or to rock on a tennis ball. pain killers might help but as it takes 20 minutes for any real benefit the episode has passed by then. during one attack i managed to take my blood pressure and it was extremely low.

also the specialist said this condition has been recorded since roman times and hence its latin name. which means pain the bum. the specialist told me medical knowledge is low due to not being able to do studies of these infrequent episodes. he said there is no genetic link but all my brothers and sisters and a nephew suffer from it. they do not have fibro though. i was told by an allergist the sphincter muscle is very ph sensitive and she believes it is sign of allergy to yeast.

specialist told me lastly that they tend to disappear around 40 years of age but i am fifty this year and have suffered bouts of this since it began when i was 24 years old.

honeybug profile image
honeybug in reply to

Ohhh...my oh is 66 and still has them...sorry ☹️

😊🌸🌿🦋 🤗💕😘

omg i too have this, i thought it was down to trapped wind also, the pain is unbearable, and i usually sit on the loo for 15 20 mins rocking or massaging til it passes!!!

how many other side sypmtoms are we meant to endure

Sharon_J profile image
Sharon_J

I think this is what I get, there are no warnings and it can go awayin about 5 mins other times bit longer So painfull. My husband and son gets this as well, they don't have fibro but does suffer quite badly with IBS. So I think its more related to IBS than fibro.

xx

sharon see dr myhill site drmyhll.co.uk . she dtates the sphincter muscle which is going into spasm is highly PH sensitive. so i agree the ibs is triggering. ibs can happen due to food tolerances, ibs is also made worse by stress. at my most stressful time at work i was getting attacks for frequently even whilst driving or in the office. they are the most panful thing. the bowel specialist analogy for this was the pain associated with severe leg cramp known as cricketers leg. only so much worse because it is inside an already inflamed bowel. sometimes the pain is so intense it grips my whole stomach during episode. i am thinking of trying to get my husband to video an attack as there is nothing on web or u tube and most people never understand what they have s a diagnosed condition and it shows how little bowel specialists have been able to establish as it is near impossible to catch an episode. however dr myhill views again explain how diet and therefore genetic susceptibility explain why our families are suffering too.

i am so pleased i raised this sensitive subject. not easy discussing bowel issues over the years with gp's whom always fob me off with 'constipation cramp' only those who suffer them know it is not and not knowing what this hideous pain is was scary. xxxx

DocterB profile image
DocterB in reply to

Hi, it is told that astma-medication can help, like salbutamol inhalation. it works very fast, so with an attack during 10-15 min it could shorten this period of intense pain, I recommand to talk this over with your general practitionar,

check

henw.org/archief/volledig/i...

article in Dutch # use google translate.

Can anyone tell about influence of post-menopause effects: does it tend to get better/worse?

Wish you well!

jazher profile image
jazher

I think i get this too, I thought it was due to me having constant constipation, it is very painful and brings tears to my eyes.

thankyou for sharing that kel xxx

you are most welcome jazher xx

mandy48 profile image
mandy48

yes over the years i have had episodes of this, the pain is horrendous as you say happe, i dread having them, i would rather give birth!!!!!!

Waraglen profile image
Waraglen

I suffer from this occasionally, usually seems to be brought on by eating foods with ginger added, especially Chinese dishes. It can be extremely painfull if not treated. I use a a few puffs of a Salbutimol (eg Ventolin) inhaler as soon as I feel the pain starting, and it relieves it within a minute or two, sometimes before it really begins to cramp - a life-saver! I keep an inhaler in the bathroom and one in the car for emergencies.

honeybug profile image
honeybug in reply toWaraglen

Thank you for sharing.

😊🌸🌿🦋 🤗💕😘

honeybug profile image
honeybug

Hi Happe 😊🌸🌿🦋

I’m sooo sorry you suffer with this!!!! To my knowledge my oh doesn’t have FMS however you have described his experiences with these agonizing events exactly as he does. He is too embarrassed to ask the GI specialist about it but now you have given me a name for it. I’m certain if I write it down for him for his next colonoscopy test it will be easier to deal with then.

Thank you soooo much for helping us sweetie!!! 💗🌹

I’m sorry I can’t relieve your pain but be assured I will sing 🎶 your praises as much as I can. Blessings and take care

😊🌸🌿🦋 🤗💕😘

Greeneyes011866 profile image
Greeneyes011866

Omg it’s awful and usually wakes me up out of a sounds sleep I end up in tears and rock back and forth on all fours but I haven’t been diagnosed with it I do have fibromyalgia though

I also get muscle spasms in my vagina and they hurt really badly too

Lemonyblue profile image
Lemonyblue

Oh yes, I get this about 5 times a year. It really is the most painful attack and completely out of the blue. I was told it is just a muscle spasm but boy is it painful!

Take care everyone x

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