Has anyone been diagnosed with Abdominal Wall Pain

Posted by rufus444 @smiles444, Dec 15, 2017

Starting on May 1, 2017, I began having abdominal pain that wraps around to my left back. The first time it happened, I went to the emergency room because I thought I might have an apendicitis. The hospital did a CT scan of my abdomen, everything looked okay. I went to the emergency room several times over the summer with excruciating abdominal and back pain. I had a hida scan done, a colonoscopy and an endoscopy and CT and ultrasound scans of my abdomen. Everything looked normal. In September of this year, a doctor at Mayo felt the area on my abdomen and did a Carnett’s test. He suggested it could be abdominal wall pain. I have had two steroid injections and I am still having pain in the same area. Has anyone out there had this type of diagnosis and still having pain?

Liked by graceandpeace

How are you feeling? I’ve been living with most of your symptoms and have done all those test with no answers. I’m not sure where to go from here.

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Is it pelvic pain, stomach or intestinal pain? I wake up every three hours in bed and have to get up and to bathroom or walk around to get relief. Mayo couldn't figure it out and it's been like this for over two years as wake up every three hours. They say no GI problem.

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@christie6453

Hello. I have been diagnosed with this as well. My question is, what type of Dr. Does the ultrasound guided steroid injection or nerve block. I have been referred to an ob/ gyn who had never heard of such a thing and laughed in my face. I just want this pain to go away but don't know where to go. My Dr doesn't seem to know either.

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One doctor at the Mayo said I have restless back syndrome because I wake up every 3 hours. No such thing!

Liked by lioness

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@lasirvent

Yes, I’ve had every tests they can think of and they can’t find anything wrong. So now I had a RFA and nerve block on my Splanick nerve. It helped and gave me relief for almost a year. Now, im back and had both left and right sides done. Waiting for nerves to die off. Also, checking into vascular problems, NMALS? Desperate!

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My feels like an ache from one hip to the other and my abdominal area. Only happens at night I'm trying to sleep as it wakes me up every 3 hours and it feels like I need a bowel movement but I don't and we can't find out what's causing it. It's not a sharp pain it's just a steady increasing ache and it goes up to level six.

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@cindyrog

Hi – I’ve been dealing with this for a year. Abdominal and upper thoracic neck clavicle area. . thoracic outlet syndrome. ( not diagnosed) i can’t lift , push, pull my arms above chest level with pain in clavicle strain. on stomach. This pain all started with with working out. I think it has to to be a nerve issue/ stomach lining. So painful Any movement pushing up through my stomach. I use to be a trainer I had to let my 73 year old client go. because I can’t even pick up things. She shouldn’t be able to do more than me. I haven't exercised since July. I’ve been to emergency twice. Fo 6 days in the hospital the came up with nothing. Now saying it’s in my head go to CBT therapy. I’ve lost about 15 pounds instantly in July. I’ve been the internist GI, endocrinologist and neurological surgeon she’s ran test I go back to see her next.
I’m desperate to get well. I’d appreciate any information you give me. I don’t know where to go from here.

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Hi @cindyrog. I'm so sorry to hear your story. I feel the same way, as you mention what you can't do and others older than you can. It is a bear of unacceptable for me. My muscles have weakened along with nerves dying off and I have lost a ton of independence. It is not easy to accept for anyone but I feel its even more difficult for ages that are younger. Simply put…we are NOT supposed to be here yet! My relatives, all in their 70's, for the most part are doing better than I , therefore I am blessed to have their support to drive me around to my appointments and shop for me etc… boy oh boy, does it piss me off, in all honesty.

So, now that I'm working real hard on acceptance…I'm finding the positive. What a great opportunity it had been to learn more about my 74 year old Uncle who survived Vietnam, as he carts me the therapy. Hey – otherwise the opportunity would not have presented. I know it's a sucky way to learn but, it is what it is and the harder I fight it, the worse my pain becomes.

I hope you keep fighting and working real hard to narrow down your diagnosis, treatment and acceptance.

All the best to you in your journey.
Be well – Rachel

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@rwinney I didn't realize the toll this has taken on you . Im so sorry for you condition. I use a walker and cant shop so I order my groceries and am looking at meds also. I am going to ask Dr. for some therapy on my back I think it will help a lot . Im 78 rely on public transportation that is door to door . We have a 90 and 95 year old who still work. He is a crossing guard and 95 , there,s a 98 who still drives . Can you believe this . She still has her mind and helps where she can. Look to those blessed ones who can and willingly help you . God be with you Rache Linda l

Liked by rwinney

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@lioness

@rwinney I didn't realize the toll this has taken on you . Im so sorry for you condition. I use a walker and cant shop so I order my groceries and am looking at meds also. I am going to ask Dr. for some therapy on my back I think it will help a lot . Im 78 rely on public transportation that is door to door . We have a 90 and 95 year old who still work. He is a crossing guard and 95 , there,s a 98 who still drives . Can you believe this . She still has her mind and helps where she can. Look to those blessed ones who can and willingly help you . God be with you Rache Linda l

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You are so very kind Linda and I greatly appreciate your words of wisdom. Sometimes it's all we got. I hope therapy brings your back some needed relief. Have a nice day. 🌺

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@rwinney

You are so very kind Linda and I greatly appreciate your words of wisdom. Sometimes it's all we got. I hope therapy brings your back some needed relief. Have a nice day. 🌺

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@rwinney Ah thanks to you also . You are very upbeat with all you have. You are a poster child for this disease . Glad to know you friend. You also have a good day . Keep smiling you have a beautiful smile . Linda

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@lioness

@rwinney Ah thanks to you also . You are very upbeat with all you have. You are a poster child for this disease . Glad to know you friend. You also have a good day . Keep smiling you have a beautiful smile . Linda

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💕Thank you

Liked by lioness

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That is very interesting, albeit, not so for someone feeling your pain for so long. Interesting to to me since my daughter has been experiencing that type of pain for quite a few years. She has had a complete hysterectomy, gall bladder removal, and appendix removed…so nothing left to 'remove' but the pain goes on. She is a single woman that has to support herself, so it gets quite difficult at times. She has had all types of scans, even a 'camera' type into her abdomen. It has become such an 'issue' that she goes into depression at times when it really peaks. Wondering if anyone has experienced this?

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@rwinney

Hi @cindyrog. I'm so sorry to hear your story. I feel the same way, as you mention what you can't do and others older than you can. It is a bear of unacceptable for me. My muscles have weakened along with nerves dying off and I have lost a ton of independence. It is not easy to accept for anyone but I feel its even more difficult for ages that are younger. Simply put…we are NOT supposed to be here yet! My relatives, all in their 70's, for the most part are doing better than I , therefore I am blessed to have their support to drive me around to my appointments and shop for me etc… boy oh boy, does it piss me off, in all honesty.

So, now that I'm working real hard on acceptance…I'm finding the positive. What a great opportunity it had been to learn more about my 74 year old Uncle who survived Vietnam, as he carts me the therapy. Hey – otherwise the opportunity would not have presented. I know it's a sucky way to learn but, it is what it is and the harder I fight it, the worse my pain becomes.

I hope you keep fighting and working real hard to narrow down your diagnosis, treatment and acceptance.

All the best to you in your journey.
Be well – Rachel

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@cindyrog….could your last name be Rogers? That is my before I married . Anyway…..I love your attitude. Like you, I have to have someone to drive me to appointments and order my groceries (gets quite expensive) but I have met so many awesome people because of this dependence. As you say, "it is what it is"! Keep up
the great attitude!!!

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@donfeld

My feels like an ache from one hip to the other and my abdominal area. Only happens at night I'm trying to sleep as it wakes me up every 3 hours and it feels like I need a bowel movement but I don't and we can't find out what's causing it. It's not a sharp pain it's just a steady increasing ache and it goes up to level six.

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@donfeld have you tried thorough stretching for hip flexors and psoas, etc.? Doing stretches like an inverted handstand while lying over a large yoga ball with very deep inspiration. I once had a lot of stiffness in these areas myself and it can clamp on nerves and cause pain. Stretching and exercise can help a lot.

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@meme2eight

That is very interesting, albeit, not so for someone feeling your pain for so long. Interesting to to me since my daughter has been experiencing that type of pain for quite a few years. She has had a complete hysterectomy, gall bladder removal, and appendix removed…so nothing left to 'remove' but the pain goes on. She is a single woman that has to support herself, so it gets quite difficult at times. She has had all types of scans, even a 'camera' type into her abdomen. It has become such an 'issue' that she goes into depression at times when it really peaks. Wondering if anyone has experienced this?

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Maybe the pain is adhesion's coming from prior surgeries. I am going through the same thing & I know for sure my pain is from adhesions & neuropathy. Best of luck to you & I hope she gets answers.

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@tigreyes2004

Maybe the pain is adhesion's coming from prior surgeries. I am going through the same thing & I know for sure my pain is from adhesions & neuropathy. Best of luck to you & I hope she gets answers.

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Hi rufus444. The Mayo Clinic Proceedings Feb 2019 posted on A.C.N.E.S. It's amazing that physicians in the U.S. don't get this, because (as you have already found out) the condition has resulted in an enormous waste of medical resources and caused much suffering to many patients, including many others posting on this site in the past. One obvious problem is that gastroenterology is the wrong speciality, hence we're all left in limbo when gastroenterologists give up on us.

Here are some case histories and reports to consider. The Mayo report is last because when I asked Mayo's Dr. Sweetser for help, I was sent me a form letter of denial. (Dr. Boelens' report is the most comprehensive)
________________________________
Protracted diagnosis of ACNES: a costly exercise. S.J. Dancer, S.G. Macpherson, A.C. de Beaux. Journal of Surgical Case Reports, 2018;9, 1-3

Chronic abdominal wall pain–A diagnostic challenge for the surgeon. Rolv-Ole Lindsetmo, M.D., M.P.H., Jonah Stulberg, M.P.H. The American Journal of Surgery, (2009) 198, 129-134

A Double-Blind, Randomized, Controlled Trial on Surgery for Chronic Abdominal Pain Due to Anterior Cutaneous Nerve Entrapment Syndrome. Oliver B. Boelens, MD, Tijmen van Assen, MD, Saskia Houterman, Marc R. Scheltinga, MD, Rudi M. Roumen, MD. Annals of Surgery Vol 257, Number 5, May 2013 845-849

Difficult differentiation of a somatic symptom disorder from anterior cutaneous nerve entrapment syndrome (ACNES): A case report. Narifumi Yokoyama, Ryousuke Shiraki, Takashi Watanabe, Makiko Shiinoki, Michihiro Nin, Taro Shimizu, Norio Yasui-Furukori and Kazutaka Shimoda. PMC Psychiatry (2019)19:394

Abdominal Cutaneous Nerve Entrapment Syndrome. Sheila Clark FCAI, Saravanakumar Kanakarajan MD FCPS FRCA FFPMRCA. Continuing Education in Anaesthesia: Critical Care & Pain, Volume 15 Number 2 2015, 60-63.

Abdominal Wall Pain: A Common Clinical Problem. Seth Sweetser, MD. Mayo Clinic Proc, February 2019:94(2):347-355. https://doi.org/10.1016/jmayocp.2018.04.03
_________________
I check in here occasionally to see if Mayo has helped anyone yet. Sorry I (and many of us) are still suffering.

Liked by lasirvent

REPLY
@rritam

Hi rufus444. The Mayo Clinic Proceedings Feb 2019 posted on A.C.N.E.S. It's amazing that physicians in the U.S. don't get this, because (as you have already found out) the condition has resulted in an enormous waste of medical resources and caused much suffering to many patients, including many others posting on this site in the past. One obvious problem is that gastroenterology is the wrong speciality, hence we're all left in limbo when gastroenterologists give up on us.

Here are some case histories and reports to consider. The Mayo report is last because when I asked Mayo's Dr. Sweetser for help, I was sent me a form letter of denial. (Dr. Boelens' report is the most comprehensive)
________________________________
Protracted diagnosis of ACNES: a costly exercise. S.J. Dancer, S.G. Macpherson, A.C. de Beaux. Journal of Surgical Case Reports, 2018;9, 1-3

Chronic abdominal wall pain–A diagnostic challenge for the surgeon. Rolv-Ole Lindsetmo, M.D., M.P.H., Jonah Stulberg, M.P.H. The American Journal of Surgery, (2009) 198, 129-134

A Double-Blind, Randomized, Controlled Trial on Surgery for Chronic Abdominal Pain Due to Anterior Cutaneous Nerve Entrapment Syndrome. Oliver B. Boelens, MD, Tijmen van Assen, MD, Saskia Houterman, Marc R. Scheltinga, MD, Rudi M. Roumen, MD. Annals of Surgery Vol 257, Number 5, May 2013 845-849

Difficult differentiation of a somatic symptom disorder from anterior cutaneous nerve entrapment syndrome (ACNES): A case report. Narifumi Yokoyama, Ryousuke Shiraki, Takashi Watanabe, Makiko Shiinoki, Michihiro Nin, Taro Shimizu, Norio Yasui-Furukori and Kazutaka Shimoda. PMC Psychiatry (2019)19:394

Abdominal Cutaneous Nerve Entrapment Syndrome. Sheila Clark FCAI, Saravanakumar Kanakarajan MD FCPS FRCA FFPMRCA. Continuing Education in Anaesthesia: Critical Care & Pain, Volume 15 Number 2 2015, 60-63.

Abdominal Wall Pain: A Common Clinical Problem. Seth Sweetser, MD. Mayo Clinic Proc, February 2019:94(2):347-355. https://doi.org/10.1016/jmayocp.2018.04.03
_________________
I check in here occasionally to see if Mayo has helped anyone yet. Sorry I (and many of us) are still suffering.

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The link to Mayo Clinic Proceedings did not work, try
https://www.mayoclinicproceedings.org/article/S0025-6196(18)30671-2/fulltext

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