Does anyone who has Complex Regional Pain Syn... - Pain Concern

Pain Concern

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Does anyone who has Complex Regional Pain Syndrome had problems with the nerves cutting off feeling to the abdomen and surrounding organs?

asr227 profile image

I have recently had to literally fight against my own body to go to the toilet. I can't feel the need to go until it's at very last minute and it's utter agony!!

14 Replies

It must be awful, sorry to hear you are having a troubling time. I dont have CRPS, however, any issues with normal bodily function should be taken seriously. I would call your GP immediately, or call 111 NHS helpline, or failing those pop to A & E. As if it worsens it could be troublesome.

I really hope you find some releif for your pain and symptoms soon, take care.

I have crps but have never had any bowel/bladder problems with it are you constipated? I know a lot of pain killers come with that as a side effect.but I dont think you should suffer in silence get yourself to your GP

asr227 profile image
asr227 in reply to

To be honest fvee I'm not sure, I've been on Amitriptyline for years and have had occasional issues but nothing like this. I'm on day 4 without being able to go to the toilet. I'm on day off tomorrow so I'm gonna go to the doctors and kick up merry hell.

I have CRPS to the left hand side of my body, it started in my left foot after a minor injury ( I dropped a tv on my foot)

I have had this exact problem and ended up seeing a continence nurse as I only knew I was actually releasing urine when I heard it hitting the toilet. She did tests and said everything was fine, but she also gave me techniques to help including timing my visits to the bathroom and not going to often to try. Get in touch with your GP surgery and ask for a referal to a continence nurse, it will put your mind at rest and give you some ideas on how to manage the problem.

Most of all you are not alone so please remember we are out there and many of us understand what you are going through.


asr227 profile image
asr227 in reply to welshnut

Thanks welshnut it's nice to know someone knows what I'm going through. I'm beginning to lose sensation in my right hand, my CRPS comes on in 'fits' where my whole body shuts down and every fit I lose power somewhere or another. Suppose it doesn't help I work 42 hours a week but I refuse to let it stop me.

welshnut profile image
welshnut in reply to asr227

It is so hard when you have to concentrate on work and deal with the pain, I am self employed and some days I really do not know how I will make it to the end. The one positive is that I do get distracted by work and I do not spend my whole day worrying what the crps will effect next. Go with the flow and try not to worry to much.

NFDK profile image
NFDK in reply to asr227

asr227 , I used to work 40 hours a week with CRPS and it just made my pain and exhaustion intolerable. I had no life outside of work, where I was being very brave, with the same attitude as you. In my opinion, you need to take care of yourself more, please. With very best wishes, Wendy x

Definitely ask to see a continence advisor. They can be a really great help with dealing with bladder and bowel problems. Some areas allow you to self refer, though it may be faster if you get your GP to refer you. Also ask your doctor if they can do reflex tests, etc to see if there is anything neurological going on. Sounds strange, but testing things like knee and foot reflexes and skin sensation can give an indication if there is nerve damage that could be affecting your bowels.

I also have c.r.p.s and also have similar problems with the last minute need to run to loo,but I also get really bad constipation but I don't think it is c.r.p.s that causes this problem,I have been told it is the Fentanyl patches that I wear on my body,I got prescribed laxido which counteracts this problem,I hope you are coping well with this horrid demon we both have,all the best Steve.

asr227 profile image
asr227 in reply to Yorkshireste

I know my medication plays a part in it, but I keep saying to my doctor buy he doesn't understand! I say I want to keep working and he keeps putting me down, I'm in a forever downward spiral arghhh! Hope your well x

Sorry to hear of your pain, hope it subsides a little, I get similar like my insides jump all of a sudden as if I've been kicked from the insides out but it's just a bit of a shock when it happens but I know what you mean about that pain before you go, although mine is only mild ,sorry can't be more helpful best wishes

asr227 profile image
asr227 in reply to

Yeah that's exactly how it feels, I work with under 2s and I don't want to have to be like them and wear nappies! I'm only 20 and I have the body of a pensioner, how joyous!

NFDK profile image
NFDK in reply to

Do you mind me asking if you are on Duloxetine, as that feeling is a side effect of the med?

Nortripiline works wonders for gastroparesis along with diet which is common for CRPS which involves Vegas nerve also stomach muscle to digest to empty where Botox can also be used an eggs & toast test being radioactive if still in stomach after 4 hours on x/ray will confirm diagnosis any other test may cause CRPS spread such as procedures but recently Neridronate is showing something amazing possible cure RSD CRPS ~xoxo

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