Unlearn your Pain

A sub-forum for those with pain, but no explanation for it. Vent, share, ask, and help others. That is what this little corner is all about!

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Re: Unlearn your Pain

Postby Alyssa » 30 Nov 2015, 15:26

Accepting the diagnosis (I have tms) has taken me so long to accept. It's was hard for me to understand that we could have pain in an area (more like different areas now) and not be something structurally wrong. Doctors don't know how to help us so we are all alone. Fear is the biggest thing for me to overcome.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
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Re: Unlearn your Pain

Postby JJJ » 16 Dec 2015, 01:02

Hi Alyssa,

I was wondering how you're going with your TMS work?
I guess it's strange for someone new to just pop up & ask you that, but I have followed much of your posting in amongst others over the last 12/18 months searching for my own answers.
My GP & CRS believe I once has a perianal hematoma &/or possibly an acute AF, but at the time it happened no-one examined me & it cleared up within 4 weeks (there was an obvious lump that I thought was an external hemorrhoid at the time). Anyway I was fine for 12 months until EXACTLY a year later (lots of similar stress around me) when the pain returned before I noticed a little lump in the same place - and then what felt like another bulge up higher, and both have been examined numerous times & are said to be 'tiny skin tags' & should not give me any discomfort or pain I'm told. I treated it for 12 months like hemorrhoids & nothing helped.

The thing is it's coming up to 2 years with this chronic anal pain & I've been down every path imaginable since the CRS told me it in no way was a hemorrhoid and just 'neuropathic pain'. I also came out with a diagnosis of pudendal neuralgia a year ago which to be honest doesn't seem to sit with me at all (& is so hard to diagnose).

The pain is variable & changes, though it's virtually always on the left, but can be anything from stingy & burny to achey & tight, & there's no clear physical triggers (besides any stool that's a bit dry or a bit loose, but even then I can still have a lot of pain on a perfect stool day).

I'm sorry for the long explanation, but I've been trying to come to terms with the idea of TMS for the last 6 months & I am doing a lot of work around it (by the way I have developed intermittent urethral pain too after a bout of cystitis last February. That is pretty awful though at least some days it's not there at all. Also one pain always tends to overtake the other). I also know how stress & anxiety affect it, plus I am doing a lot of work psychologically & trying to feel all my emotions - it's just hard!

I still feel the need to be looking after myself physically (I'm in such a state now & dealing with chronic fatigue symptoms too - there's a lot physically that is depleted in my body it seems & besides the pain I haven't been very 'well' for a few years). Not to mention the awful anxiety & depression that accompanies this kind of chronic pain - as I'm sure you understand.

I'm 36 and my life is at a standstill. My boyfriend is incredibly understanding but we in no way have a normal relationship (intimacy is very hard for me these days let alone discussing the future). So, after almost 2 years of reading bits & pieces on & off all sorts of forums this is the first time I have ever written on one - & it was to connect with you to see how you're doing now you believe your pain is TMS.

Apologies again for the length of this, & I understand if you're past forums & talking to new people, but something in me felt I needed to reach out. I keep having moments where I think I can beat it & things are working & then the fear of everything I've already endured never going way just returns along with the anxiety. It's so hard to get past, particularly when the pain is bad. But I so want to get there...as I'm sure you do too.

JJJ
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Re: Unlearn your Pain

Postby Alyssa » 16 Dec 2015, 10:57

JJJ,

I hope my story resonates with other people so we could help each other. I have read about people who read a book called healing back pain by John sarno who immediately heal their pain; unfortunately I am not one if those. I thought tms healing was going to be a piece of cake but it is not. When we have chronic pain, we are dealing with a hyper alert central nervous system and we have to do different techniques to calm our brain and tell it is okay and there is no danger. When the pain increases it is hard to calm myself down! There is so much information on a Facebook group called chronic pelvic pain the mind body connection; there is a gentleman that healed completely from pudendal neuralgia it took him about a year. Let me know if you have any further questions, Im here to help.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Posts: 735
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Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
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Re: Unlearn your Pain

Postby Alyssa » 16 Dec 2015, 11:02

Here us a story that was posted on the forum recently;
Elsa posted in Chronic Pelvic Pain - The Mind/Body Connection.
December 15 at 1:11pm

I've posted my story before, but here it is again for those who have missed it!
In the last 8-9 months, I've decreased my pain by about 70%. How? Through education, calming my anxiety, and relaxing my nervous system.

1) I educated myself about chronic pain in general. I stopped looking at all the potential physical problems that could occur i n the pelvis, and watched youtube videos by Dr. Howard Schubiner. He explains that when Drs struggle to find a problem in the tissues, the culprit is likely the brain/nervous system, which is not as visible as an infection or muscle knot. The nervous system can get "wound up" and continue sending pain signals long after a tissue problem has healed. Fear of this pain and attention on this pain creates a negative feedback loop that perpetuates the pain. To break this cycle? Calm your nervous system and re-train the pain signals. One you've educated yourself that you are OK and you dont need a Dr to finally discover the "true problem" you can let go of the "fight" and begin to take your life back, and heal. If you take this approach, you realize you are NOT helpless and you CAN take your life back. There is SO MUCH HOPE.

2) You cant just say "relax" - you need strategies. These were the strategies I developed for me:
A - Pain Mantras: When I notice bad pain, I tell myself:
"I'm OK"
"its just my nervous system"
"these pain signals dont mean I have a physical problem, they are false signals,"
"This pain is here for now, but soon I will be better" etc.
B - Mindfulness Meditation: Youtube has great body scans! I do these to calm my mind and focus on my body. I also use bits of these strategies throughout the day, for example, every time i notice tension in my body (usually jaw or pelvis) I take some deep breaths and let the tension go. When I notice pain, I take some deep breaths and focus on how certain non-painful body parts feel (ex: How do my feet feel on the floor?). Listening to meditative music (Ex a CD or youtube track of waves or birds is nice and soothing). I also took long hot showers, as I find them relaxing:)
C - Permission to Rest: I let go of my expectations for myself. While I'm healing, Its ok to take on much less. I work fewer hours, and allow myself to sleep a lot. I let go of stressful "healthy" eating plans and I dont do so many favors for friends. I can tackle non-urgent problems later. When I'm healed, I can take on more.
D - Cardiovascular Exercise: getting your heart rate up is a tried and true treatment for chronic pain! Releases endorphins! It is also empowering to prove to yourself that you CAN do these things! (but start slow of course, even if it is just a light walk a few times a week).

So basically, give yourself permission to be imperfect and take on less. I educated myself and began resting, meditating, exercising, and after about 3 weeks of completely letting go, I noticed about a 30% reduction in pain. So, I proved it to myself. I kept going, and the pain just kept reducing.

After the constant burning pain reduced, I could incorporate the next step:
3) Desensitization: After a year of wearing no underwear, I started to wear it again. The first day, for just 5 minutes. I'd use the mantras in step 2 ("i'm OK" "underwear isnt hurting me" "its just my nervous system"). After a few days of this, I'd wear them for 10 minutes a day, and so on. After just a few months, I can wear any underwear. I also use dilators to desensitize (they arent just for stretching the vaginal opening!), and now I can even have sex with minimal pain (before mind-body work, sex was agonizing and completely impossible).

So, please educate yourself with Dr Howard Schubiner's videos, and develop your own strategies to relax your nervous system. You can do it! I got my life back by watching those videos and teaching myself to relax and quit fighting the pain.

I spent a year yelling at Drs to figure it out, and believing Id be in pain forever. Now, I'm completely confidant I will be pain free soon.

RESOURCES:
Dr Schubiner's lecture on Chroic Pain:
http://www.unlearnyourpain.com/Online%20Video%20Lecture

Lorraine Faehndrich's blog:
http://radiantlifedesign.com/blog/

Julie O'Brien's blog:
http://julieobrienblog.blogspot.ca/
Blog - Radiant Life Design
radiantlifedesign.com
I am so excited to introduce you to my amazing former client Kelly Bradley, who has been both a priv...
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Posts: 735
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Re: Unlearn your Pain

Postby JJJ » 16 Dec 2015, 14:42

Thanks Alyssa, nice to hear from you.
Yes, I'm on that Facebook group too & have read The Great Pain Deception as well as Unlearn Your Pain. I too hoped I'd be one who by understanding it would be OK, but not to be (yet!) either.
I do meditation & Qi gong exercises to calm body & mind. And I'm doing a lot of therapy around feeling my emotions, discovering childhood beliefs & patterns through body awareness therapy (rather than talk therapy which I've done enough of) so I can release & reprogramme if you like my 'map', the way my brain links feelings & thoughts with pain. I have got a little way & certainly feel like the connections are there but it's hard when the physical symptoms aren't really changing - as you say when the pain increases its hard to stay calm.
I guess it's a long road - I find the blogs (I follow Julie o'brien, radiant life design & Abigail Steidly too) really helpful as I do that mind/body FB group, but I struggle sometimes because the anal/rectal pain is a bit different to the other pelvic pain sufferers & that's where I keep doubting there's not still a bit of a physical cause - because of the skin tags left. Still, I guess the original neural pathway is set up from the original trauma like TMS says, so no surprise it feels like the pain still comes from there. But I guess that's why I was so curious about you & tms & your pain as it's more similar to mine.
I find the fear of bowel movements is such a trigger for stress & anxiety - as well as worrying about what I eat (& the way it will come out) - they are two areas I'd like to be able to disconnect from the pain of you like, but it's so hard as it feels to be such a 'cause' of it. If you have any tips on reducing the anxiety around BMs I'd be pleased to hear. I am very regular to the point my body wakes me up unfortunately at 5am to go (anxiety), & I am doing all I can health wise to keep things as happy as possible down there (dealing with gut flora imbalance & leaky gut etc) but consistency is a big issue (hence the anxiety of not knowing what will happen). I don't take any type of laxative as if my stool is too loose it's as bad as too dry, plus I worry about being dependent etc. I'm also not on any medication as nothing agreed with me (& made my bowels worse!). I do take Chinese herbs (prescribed by my acupuncturist) to try & keep things in check, but that can be hard to manage as well. I have tried every fibre supplement etc & magnesiums - all the tricks - but nothing really helps. I guess I'm saying all this because of the anxiety around it - if I could feel a bit calmer about the process & function again I might stop making it worse with tms by falling into the trap thinking that it's a cause & increasing stress & tension down there & decreasing blood flow & oxygen to the area causing more 'pain'. I breathe deeply & I have different mantras I've tried - I also squat & have done so for a year to avoid extra straining - it's quite ridiculous really the lengths I've gone to!
Sorry this is so long! It's nice to be able to ask about this part of the body specifically...
Sometimes I have pain on BM, sometimes it's ok & pain comes on straight after, sometimes pain isn't too bad for a few hours & then it gets worse & vice versa, it can recede. Thing is there is always some form of discomfort/pain there, though I can generally sleep ok & when I wake for a few seconds there's often no pain, then as I realise I need a BM it starts to hurt - which feels like the pressure of it to me but of course I'm trying to tell myself it's just the fear / thought of it.
I do believe we'll get through this, just so hard in the midst of it some days hey. The bad days anyway.
If I can be of any help as well please let me know - it sounds like you're in the same circle of information as me & that's reassuring.
Thanks for reading, sorry about the length of this!
JJJ
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Re: Unlearn your Pain

Postby Alyssa » 16 Dec 2015, 23:24

JJJ,

I had the same anxiety around bowel movements; I was anticipating the pain right before the bm. I had Botox done to the pelvic floor muscles and that helped reduce my tension with bms because i no longer hurt. Have you tried physical therapy or Botox?
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
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Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
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Re: Unlearn your Pain

Postby JJJ » 16 Dec 2015, 23:59

Hi Alyssa,

I've done some physical therapy but only vaginally for the pelvic floor, seemed to help my urethral pain more. I am too scared to try anything anally given the sensitivity - did you try that?

I haven't tried botox, kind of scared of anything that seems invasive, plus none of my drs suggested it (but then what does that mean?!). I'm in Australia too & not sure it's as readily available? Did the botox last for you? Do you still have pain-free BMs? Any side-effects?

And do you get other pain now too, not just anal pain?
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Re: Unlearn your Pain

Postby Alyssa » 17 Dec 2015, 11:41

I had a great experience with Botox, I no longer have pain with bowel movements so I definitely recommend it. My friend pafen who is also in this forum lives in Australia and he just got Botox done about a week ago. I would say try it and see if it helps you. It is temporary, the only side effect is having an accident which I did not.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
VIP
 
Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female

Re: Unlearn your Pain

Postby Alyssa » 17 Dec 2015, 11:43

The anal muscles were in knots do when the stool passed it hurt like if I had fissures around my rectum which I did not; it was just the tight muscles! Crazy right? I would even bleed.
2/14 Fissure developed
3/14 Diagnosed w/ fissure given Nifedipine
4/14 Referred to Pelvic Floor Physical Therapy=Pelvic Floor Dysfunction
5/14 Fissure declared "healed"/chronic anal pain persists
9/5/14 Botox to pelvic floor
9/22 biofeedback
Alyssa
VIP
 
Posts: 735
Topics: 26
Joined: 29 Apr 2014, 11:24
Location: San Jose, CA
Has thanked: 136 times
Been thanked: 41 times
Gender: Female


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