PROCTALGIA FUGAX FOR A WHOLE HOUR NOW

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birdinpain
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Date Joined Jan 2010
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   Posted 1/5/2010 11:27 AM (GMT -6)   
is this normal to have it for such a long time? i have read everyones posts but the general concensus is that it lasts a matter of minutes. i'm still going. no BM it hurts too much.
is there anyone out there to help me?

Sherrine
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Date Joined Apr 2005
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   Posted 1/5/2010 2:06 PM (GMT -6)   

I'm so sorry you are having to deal with this.  You should call your doctor and let them know what is going on.  We are not doctors here.  You say you "think" this is what is going on.  You really need to be sure and not assume anything.  

I did delete your first post on this subject because that is duplicate posting and is against forum rules. 

I hope you feel better soon.  

Sherrine 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
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God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


birdinpain
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Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 3:13 PM (GMT -6)   
sorry about that, i wasn't sure i had done it right. new an all.
though the pain has subsided i still feel the pain and a bloated fragile feeling. but less pressure. was hoping to hear from someone that had this pain for longer than 20mins. I hae been diagnosed with IBS and have had ulcerative colitis in the past.think it might be time to visit a gastroentologist again.
thanks sherrine.

fruitgirl
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Date Joined Feb 2009
Total Posts : 6777
   Posted 1/5/2010 3:18 PM (GMT -6)   
I'm curious what you mean by "have had ulcerative colitis in the past." UC is a chronic disease that cannot be cured, except if you've had a colectomy. Do you perhaps have a j-pouch?
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


birdinpain
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Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 3:50 PM (GMT -6)   
i had a mild form of ulcerative colitis and was put on steroids for a few months which cleared up the pain. are u saying its a reoccurring disease..? i am so lost right now. all i know is that i'm in my 20's and in pain and its all very overwhelming.

do u know anything about the proctalgia fugax lasting for hours at a time?

birdinpain
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Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 3:55 PM (GMT -6)   
my mistake- i didnt have ulcerative colitis- i had "colitis" so just the inflammation of the intestine part. and i have ibs. but i have never had pain like this (which i am so sure is PF- all the symptoms are there)

fruitgirl
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Date Joined Feb 2009
Total Posts : 6777
   Posted 1/5/2010 4:06 PM (GMT -6)   
That makes more sense. "Colitis" is just a very generic term for inflammation of the colon....I'm sure that when you get a tummy bug (vomiting, diarrhea, etc), you'd have colitis. Ulcerative colitis is an inflammatory bowel disease, which, as I said, is chronic and cannot be cured.

Like Sherrine said, you really need to call your doctor about the pain you're having. We really can't help you!
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


birdinpain
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Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 4:09 PM (GMT -6)   
got the appointment- just wondered if it was unheard of to have a PF attack for such a long time?

pinotgrigio
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Date Joined Feb 2010
Total Posts : 1
   Posted 2/6/2010 1:25 AM (GMT -6)   
I guess I have Proctalgia fugax. I did not know what it was for years until tonight. Mine always lasts 30-60 mins or a little longer sometimes. Ihave only had it once during the day. It always comes on at night. I never took notice as to whether it happened on a night I had sex but tonight I did and sure enough an hour or so later I was awakened with the pain. I hate this so much. It is annoying as hell.

Alejandro
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Date Joined Mar 2010
Total Posts : 1
   Posted 3/2/2010 5:41 PM (GMT -6)   
I have suffered from Proctalgia Fugax for about 35 years.
I am stricken with it about 10 times per year at most anytime day or night and for no apparent reason.
The pain can get so bad I could almost pass out if not dealt with.
The only way I've found to deal with it is by sitting with my knees up and my arms wrapped around my knees. Do not lean back against the wall. I then must meditate and visualize the pain dissipating down through my thighs, calves, and then to my feet from where it dissipates out my body. This may sound strange but it is the only way for me to elminate the pain. If I don't meditate in this manner, the pain will remain indefinitely. I think the longest I had to deal with it was about an hour. I have become very adept at meditating/visualizing the pain away and can usually do so now within minutes if I am left undistrubed. My biggest fear is being hit with the pain when in a public situation from which I cant escape. I recently experieinced it when in line for a chairlift while skiing. I couldn't get out of line fast enough and ended up riding the lift to the top of the mountain. I had to endure the pain for the ten minute ride before I could get off, strip off my skis and sit in the snow for about 20 minutes while my son waited for dad to do his ZEN like thing. This meditation is the only thing that will make the pain go away.
Give it a a try. Good luck

1happymom
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Date Joined Apr 2009
Total Posts : 2
   Posted 3/3/2010 9:21 PM (GMT -6)   
For me it lasts alot longer than 20 min. and is so painful that I've actually heaved from the spasms. My Dr. prescribed a suppositiry that has a small amount of Opium in it and told me that this usually works immediately - no such luck - The one and only thing that stops it for me is an enema. Usually as soon as I deficate, I'm better, but this last episode spasmed lightly for about 20 min after the episode but it was alot less painful after the enema, almost a "residual spasm" if you will. It always awakens me when it happens with the exception of one time last summer when I was doing yardwork and it began. I had to run for the door. I am a 48 year old female. The last 2 episodes were only 4 days apart, I hope that this is not going to become a more frequent problem. I just read that a possible treatment is an injecton at the rectum, any thoughts on this?smhair

tobli
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Date Joined May 2010
Total Posts : 1
   Posted 5/8/2010 6:50 PM (GMT -6)   
I have suffered from these for about 10 years. the pain is so bad i tried everything and though it might seem wierd, if you had the pain i did you will try it. Two things work everytime. I take hot water from the spigot into a fleet enama disposable.. pain stops within 15 seconds of getting heat right to the spot. CAUTION you must determine how hot your water is ... im sure you could hurt yourself if your water is scalding... Another is the rubber butt plug you might get at an adult store. Heat for 12 to 15 seconds in micro. AGAIN be careful and test with your hand ... But guaranteed any way you can get heat right to the spont will STOP the spasm immediately. several times it has taken two times but Always works!

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 5/9/2010 11:17 AM (GMT -6)   
Just some new info on Levator Ani Syndrome-proctalgia fugax.


Gastroenterology


Biofeedback Is Superior to Electrogalvanic Stimulation and Massage for Treatment of Levator Ani Syndrome

http://www.gastrojournal.org/article/S0016-5085(09)02237-9/abstract


also just fyi, but an old name for IBS was spastic colitus.

You should see your doctor as mentioned.
I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.


bg52
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Date Joined May 2010
Total Posts : 1
   Posted 5/23/2010 11:42 AM (GMT -6)   
thanks folks - I have been suffering with this for years and episodes are 4-6 times a year. It is scary to have a pain that wakes you up and makes you crazy desperate for some relief. I had an episode 2 nights ago and had to seek some info here. It's a little comforting to know this is not some weird thing that is an early sign of something more serious. (I hope not - I have not read that yet ) Two nights ago was the worst I ever had. I came very close to passing out. My peripheral vision began to close in on me and I quickly laid down. Had I not done that, I think I would have hit the bathroom floor. My God, just thinking about this pain is awful. It is so bad it basically takes over your conscious thought. I often feel like I want to take a BM but found that it may make it worse if you push hard. That is what I did last night. (sorry about the graphic nature of the discussion - we are all adults here and we can relate)
 
Anyway- the only thing that has helped me get through it is knowing I'll get through it. The breathing techniques my wife learned years ago in Lamaze classes is something I employ. It calms me down and I wait it out knowing that it will subside. (mind over matter basically) If some other folks could chime in here with their situations (peronal and otherwise) we all may be able to arrive at some things that exacerbate this dibillitating condition. I'll start here - 1) I tend to be a little under stress; not all of the time, but when I am , it's intense. I think the episodes sometimes are around these stressful times. 2) I don't know for sure, its just a guess but everytime my wife makes one of her special Chinese dishes that use red-chili peppers, I have an episode; it may well be a coincidence, but I have traced it to my early dinner on 2 occassions. 3) my dad has had this for years too - genes? No science to any of this.

My final advice is to relax - I don't think we are going to die over this - that should take the load off the mind and then when you do get an episode - breathe.......deep breaths, slow release through the nose......... and know its going to be over soon.
 
Love to hear from others.

Post Edited (bg52) : 5/23/2010 11:30:04 AM (GMT-6)


Max23
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Date Joined Mar 2011
Total Posts : 1
   Posted 3/14/2011 11:22 AM (GMT -6)   
I've had Proctalgia Fugax for about 20 years now. It's always the same thing. It'll wake me up in the middle of the night. Once I'm awake, the pain seems to slowly get worse, eventually to the point where I break out in a sweat and breathe heavy, writhing on the ground, trying to find a position that feels good, but there never seems to be one. Usually it never lasts longer than 30 minutes.

I've found that two things are helpful:

As SOON as you feel the pain, pop 5 ibuprofen.

Press a warm washcloth against the area.

It's a pain in the ass, I know.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 3/14/2011 1:40 PM (GMT -6)   
I would be careful with the "5 ibuprofen" especially if you also have IBS.
IBS Forum Moderator


I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.

cculross
New Member


Date Joined Mar 2011
Total Posts : 1
   Posted 3/18/2011 11:14 AM (GMT -6)   
I have been suffering with the same symptoms for the last few years.  Just went back to my gatro Dr. and he has daignosed with proctalgia fugax.  I do get woke up in the middle of the night with pain, usually if I go to the bathroom it subsides slighly but I continue to be in pain for hours!  I have been scheduled for a sigmoidoscopy for next week.  I have already had to colonoscopies in the last 5 yrs.  They told me I had a tortous colon which just means that it is all twisted and also said I have IBS.  I just got a perscription for the generic for librax, so I'm going to take them today to see how they work.  I've been in pain for about an hour so far!! Wish me luck!! Thanks for all the information on this site it really did help!  Glad to know I'm not the only one with this!!
 
Regards,
Cathy

AusSkyRider
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Date Joined Apr 2011
Total Posts : 1
   Posted 4/29/2011 3:28 AM (GMT -6)   
G'day,

I have been suffering this debilitating illness for some 11 years now and, thankfully, it strikes at infrequent intervals. When it does strike, it is 'hell'.
I would not wish this pain on my worst enemy.
My Doctor prescribed a Salbutamol Sulphate Inhaler, suggesting I use it whenever the pain hit me.
I'm not saying this will work for everyone, but it certainly helped me. I don't know how it works, but I am so thankful that it does.
In all the things that have happened to me over the years, there is nothing to compare with the pain of this insidious affliction.
I wish anyone who suffers this a safe and speedy form of comfortable pain relief.
Hang in there,
ASR

Hemmorhoid
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Date Joined Jul 2011
Total Posts : 1
   Posted 7/15/2011 8:25 AM (GMT -6)   
I had this problem for about 5 years. I'm 41 years old male and it like most woke me up in the middle of the night with this severe anal pain.
 
This first time it happened I thought I had a severe constipation problem or twisted bowel.
 
Been two 2 doctors about it. Have had prostate checked, colon checked and all is good. They don't know what to tell me.
 
With me it lasts for hours. I've never waited to see how long it would last, I tried once and wimped out after 2hours. I usually take 2 Tylenol 3's and pace the floor until the drugs kick in. Then I can go back to bed. That has been the only thing to give me relief. I don't like taking them but when you've got that kind of pain and nothing else works well...
 
I had another attack last night; woke me up at 1:30 am, tossed and turned in bed for half hour till the pain got me up. This time I took just 2 extra strength tylenol, they have worked in the past when I didn't have tylenol 3's on me. like on an overnight business trip once. The tylenol just took the edge off and after pacing for 2.5 hours I was able to get back to sleep. I'm wrecked today.
 
It has been interesting to see the different way people have delt with the pain. I'm a Christian and I also Pray to God through my Lord Jesus during this horrible experience. He gets me through it. PTL!
 
I think I'll go back to my new doctor; (other one retired) and mention the name Proctolgia Fugax. and mention the inhaler that has been prescribed.
 
Thanks to everyone for sharing.
 
God bless you all.

lilken
New Member


Date Joined Sep 2011
Total Posts : 4
   Posted 9/13/2011 8:19 PM (GMT -6)   
I've had PF for 30 years. Usually for 20 - 60 minutes.  I used to take 3 tylenol right when it hit, but now it usually is gone in 20 minutes, so I figure why bother. 
 
But here's my solution.  The only time it has NOT happened at night was during a soccer game (I was playing).  Which got me to thinking.  It's a butt cramp.  What else causes cramps?  Dehydration, right?  I can be almost guaranteed to get PF during the night if I am dehydrated (drank more than my usual coffee or alcohol, and not enough water).  Try it!  Try drinking more water and see if you get it less frequently, or if you notice the PF might be from being dehydrated. 
 
I've read that this gets less painful as you get older, and I must say, while it's still painful, I no longer writhe on the floor. 
 
I have NEVER seen dehydration suggested, which is why I wanted to share.  It makes a lot of sense.  I avoid anything that might dehydrate me (hot tub, excess coffee, etc. . .), and try to drink more water. 

stmm
New Member


Date Joined Nov 2011
Total Posts : 1
   Posted 11/11/2011 8:34 PM (GMT -6)   
Glad I found this. I have been to the doctors on a few occasions and had everything checked out as I was convinced I had something serious. Never diagnosed as PF however these are 100% the symptoms I get and almost all the time is after ejaculation.

I think lilken has a valid point with dehydration! I have learned quite a bizarre method to relieving the pain which came about due to getting an erection during many an episode! The method believe it or not is to ********* ;-) Not to ejaculate (as I have found this difficult to achieve) however after a few minutes the pain starts to subside! I think the longest I have been in pain is around an hour and is was awful!

Not saying this works every time or will work for everyone, but it seems to help me whenever I get this and have a semi on!

dogneck
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Date Joined Dec 2011
Total Posts : 1
   Posted 12/17/2011 11:57 PM (GMT -6)   
I've had levator ani / proctalgia fugax for 10 years. The pain comes usually while asleep and is excruciating. I have gone into mild shock and also passed out once. The problem with taking any kind of pill is that by the time the pill starts to work, the pain has subsided. My doctor was very understanding and prescribed a nasal inhaler of stadol, an opiate that kicks in in 12 minutes and immediatly ends the episode. The downside is you are then drugged for the next 2 or 3 hours which is not all that bad unless you have to drive or work or something like that.You can get some relief of the onset pain by getting on your feet and walking around. This syndrome is horrible and I feel for anyone who is experiencing the pain. My symptoms before stadol lasted anywhere from 15 minutes to 1 1/2 hour. I believe that stress is a factor in these episodes. good luck!

Krumsmum
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Date Joined Oct 2012
Total Posts : 2
   Posted 10/17/2012 12:49 AM (GMT -6)   
I am 67 and have suffered with PF for 45 years. It began after delivery of 2nd child. Before I knew how to take care of it, the pain was almost unbearable. Over the years I have been prescribed oral medication as well as suppositories. Neither worked. Finally, it was suggested that I use my thumb vaginally to massage the posterier portion of my vagina. It reaches the exact spot and you can feel the "knot" caused by the cramping. That stimulates the cramping levator muscle. It generally always works for me altho occasionally it will take a little while. Mostly it is a night thing but if I have been on my feet for many hours and really tired, I will get it anytime, night or day. I hope this helps some of the ladies out there. But men?? Oh! also if my butt gets cold as sitting on bleachers or such, I am certain to get it.

Tinlou
Regular Member


Date Joined Jun 2010
Total Posts : 390
   Posted 10/19/2012 6:03 PM (GMT -6)   
Krumsmum, i often felt that this was just a woman thing since it often happened around my menstrual cycle or hormonal but once i came here that all went out the window since so many men go through this too. I will try your idea though the next time since i do get it at least once a month.

Nancy W.
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/10/2013 3:07 AM (GMT -6)   
I have been living with this problem since college. For me, it lasts anywhere from 30-90 minutes and usually happens in the middle of the night as well. Over the years, I have observed several triggers:

Black pepper
Raw or undercooked onions
Orgasms approximately 7-13 days prior to a menstrual cycle. (Yes, odd and embarrassing, but may have something to do with the muscles and hormones.)

The black pepper is a bummer because a lot of food is seasoned with it, and sometimes I don't realize until it's too late. I'm guessing that the episodes occur at night because it takes my body time to digest the offending food with those spices from dinner and make their way through, hence the correlation to IBS. I hate that there is no relief during the first 30 minutes. I too use the techniques about visualization and ibuprofen or acetaminophen. I haven't tried using a Ventolin inhaler, so I'll try during the next attack. I saw a snapshot of a video where someone pressed and held the inner web (the corner closest to the hand between fingers) between the thumb and pointer finger. It sort of worked toward the tail end of my pain. But not a scientific experiment

Post Edited (Nancy W.) : 9/10/2013 2:10:25 AM (GMT-6)

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