Has anyone been diagnosed with Abdominal Wall Pain

@undiagnosed2016

What type of injections did you have? I am stumped a had it, I just can't see living in this much pain. My pain keeps getting worse so now its 8-9 all the time except for sleeping. I have had many injections and I finally did get a celiac plexus block down through radiology dept at our big research hospital. Gosh I thought this has to be it and it did nothing. I had a special doppler ultrasound to test for MALS and the surgeon who does do surgery said my flow numbers were fine. The strange think is I do have the J Hook that is usually the cause for MALS.

I am down to now PT and seeing a new councilor to try and relieve stress and anxiety. This pain has been going on now for over 3 years, started when nortriptyline stopped working for my mild gut ache. When I would stop taking it to see if I could go w/o pain came in a day. Took it for 17 years and then just slowly stopped working. Pain started as a daily 4 and has been over 8 since 10/1/20. I did have a high ejection fraction number of 94 so I took the chance and had the gallbladder taken out. That only helped my eating issue, I love to eat but slowly lost my appetite over a years times and lost 45 lbs from not enough calories. I now have been eating more since it was taken out and it was diseased they said but still have the same constant pain down the middle from xiphoid (seems like pressure pushing under/below it down to lower pelvis. It moves up and down as I call it the highway, always there but one will sometimes be more painful area than the other. it can fan out under the sternum/xiphoid area to the sides and same at waistband area.

I have consulted with Mayo GI and all they now can offer is drive from St Louis to Rochester. Thats a huge undertaking and honestly I dont think my pain level will allow me to do that trip. What kills me too is its Undiagnosed, best guess is neuromuscular disorder. I dont know how someone can live with this level of pain. At least with awful cancer you know what you have and can research it and fight it the best you can. I can't find anything to take the edge off.

One thing I read was about CYP450 or Cytochrome P450, its a genetics test to find out what pain meds or drugs wont work because your body wont metabolize them correctly. Has anyone ever heard of this? This could tell the doctor that higher doses of certain meds or finding something else to help. I just want some relief sometimes, to be able to get away from a level 8-9 all the time Its terrible that my body wont respond to Hydro, Oxi, morphine, Tramadol worked one time and got it to a 6.5 then I couldn't repeat it the next day. The hospital also tried dilaudid, nothing helps. I also had as I call it a One Hit Wonder with buprenorphine at a worked up to high level in a day and it moved the pain down the next morning to a 5, took most ot the lower pain away and a fair amount of the upper. It didn't help my appetite. It lasted about 36 hrs then I vomited and tried again during the week and couldn't repeat it. Other than that one injection helped me two years ago and it was the pain mgt dept at the hospital injected a lot of steroids' into they say my ilioinguinal and Hypogastric nerves, the areas they did this at was on each far side of my abdomen about lined up with the navel. I just remember them far apart on each side. That was in the first 16 months of this and I didn't know to press them to find out why. They did various other ones over the next year with no success like thoracic and intercostal.

I am at a loss, this pain is so bad. Other than reading a lot on this forum I don't know anyone who has ever had something like this that just starts out of blue and progressively gets worse each month. I heard good things about the Cleveland Clinic but doesnt sound like they figured out your pain issue. I keep adding more issues, after 3 years so around March of this year I started rubbing my foot back and forth on the floor. When my pain goes to 8.5-9 I shake it all the time, wearing holes in my socks. Best I can figure is this my body saying I need an outlet. It can be either foot but mainly do it with the left. Sometimes now and never happened before I have a delayed start to urinating, I know I need to go but seems to have to push/clinch to get going. Mornings are the worse, I can sleep for 4-5 hrs, get up and pee and get right back in bed I can go back to sleep. Though around 730-8am I wake up to go again and I can sit laying there not moving and the pain hasnt fully turned on like a light switch does, though when I get up and go to use the bathroom and come back to bed the pain is cooking full steam. This morning afterwards my pelvic pain turned on so bad it was a 9. Doesnt hurt to go its after, like my body will turn it off when I go to sleep and turns on when you awake and make your first move. I havent tried laying there not moving not more than a few minutes as I gotta go, Im figuring it would sooner or later turn fully on. Oh and occasionaly I get numbness in hands and feet, if I start moving them it will go away.

Your gallbladder is on your right side so I guess that can't be it. What is it that you think you have? SORRY for the long post but if anyone has any answers or thoughts please reply/post. I think I am going to try and have a hypogastric plexus block done to see what it would do for pain below navel. There really aren't anymore standard tests for me to have as I have had CT, MRI and ultrasounds. I have seen a urologist and they don't really know either, labs and scope of bladder were good. I will say it again I don't know anything worse than having a constant pain of 7 or higher all the time. Anyone who has this, and sounds like your about as miserable as me has my complete sympathy. I have one friend who had serious ear problems and was bad but not this bad and then my wife who is fully involved in this understand. Really no one can understand how bad this is, if your healthy you have no idea. It really destroys your life as your life is just about pain. When it gets so bad you can no longer distract yourself any time its misery.

Sincerely,
Rob

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Dear Rob, Sounds like you have ACNES (Abdominal Cutaneous Nerve Entrapment Syndrome). 2 days ago my surgeons through robotic laparoscopic surgery severed 3 nerves in my stomach and aside from being quite sore from the cutting I am finally CURED! Thanks God and Thank Dr. Thomas Gillespie at St Joe's Hospital in Phoenix AZ. Wonderful Doctor and Staff.

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@undiagnosed2016

What type of injections did you have? I am stumped a had it, I just can't see living in this much pain. My pain keeps getting worse so now its 8-9 all the time except for sleeping. I have had many injections and I finally did get a celiac plexus block down through radiology dept at our big research hospital. Gosh I thought this has to be it and it did nothing. I had a special doppler ultrasound to test for MALS and the surgeon who does do surgery said my flow numbers were fine. The strange think is I do have the J Hook that is usually the cause for MALS.

I am down to now PT and seeing a new councilor to try and relieve stress and anxiety. This pain has been going on now for over 3 years, started when nortriptyline stopped working for my mild gut ache. When I would stop taking it to see if I could go w/o pain came in a day. Took it for 17 years and then just slowly stopped working. Pain started as a daily 4 and has been over 8 since 10/1/20. I did have a high ejection fraction number of 94 so I took the chance and had the gallbladder taken out. That only helped my eating issue, I love to eat but slowly lost my appetite over a years times and lost 45 lbs from not enough calories. I now have been eating more since it was taken out and it was diseased they said but still have the same constant pain down the middle from xiphoid (seems like pressure pushing under/below it down to lower pelvis. It moves up and down as I call it the highway, always there but one will sometimes be more painful area than the other. it can fan out under the sternum/xiphoid area to the sides and same at waistband area.

I have consulted with Mayo GI and all they now can offer is drive from St Louis to Rochester. Thats a huge undertaking and honestly I dont think my pain level will allow me to do that trip. What kills me too is its Undiagnosed, best guess is neuromuscular disorder. I dont know how someone can live with this level of pain. At least with awful cancer you know what you have and can research it and fight it the best you can. I can't find anything to take the edge off.

One thing I read was about CYP450 or Cytochrome P450, its a genetics test to find out what pain meds or drugs wont work because your body wont metabolize them correctly. Has anyone ever heard of this? This could tell the doctor that higher doses of certain meds or finding something else to help. I just want some relief sometimes, to be able to get away from a level 8-9 all the time Its terrible that my body wont respond to Hydro, Oxi, morphine, Tramadol worked one time and got it to a 6.5 then I couldn't repeat it the next day. The hospital also tried dilaudid, nothing helps. I also had as I call it a One Hit Wonder with buprenorphine at a worked up to high level in a day and it moved the pain down the next morning to a 5, took most ot the lower pain away and a fair amount of the upper. It didn't help my appetite. It lasted about 36 hrs then I vomited and tried again during the week and couldn't repeat it. Other than that one injection helped me two years ago and it was the pain mgt dept at the hospital injected a lot of steroids' into they say my ilioinguinal and Hypogastric nerves, the areas they did this at was on each far side of my abdomen about lined up with the navel. I just remember them far apart on each side. That was in the first 16 months of this and I didn't know to press them to find out why. They did various other ones over the next year with no success like thoracic and intercostal.

I am at a loss, this pain is so bad. Other than reading a lot on this forum I don't know anyone who has ever had something like this that just starts out of blue and progressively gets worse each month. I heard good things about the Cleveland Clinic but doesnt sound like they figured out your pain issue. I keep adding more issues, after 3 years so around March of this year I started rubbing my foot back and forth on the floor. When my pain goes to 8.5-9 I shake it all the time, wearing holes in my socks. Best I can figure is this my body saying I need an outlet. It can be either foot but mainly do it with the left. Sometimes now and never happened before I have a delayed start to urinating, I know I need to go but seems to have to push/clinch to get going. Mornings are the worse, I can sleep for 4-5 hrs, get up and pee and get right back in bed I can go back to sleep. Though around 730-8am I wake up to go again and I can sit laying there not moving and the pain hasnt fully turned on like a light switch does, though when I get up and go to use the bathroom and come back to bed the pain is cooking full steam. This morning afterwards my pelvic pain turned on so bad it was a 9. Doesnt hurt to go its after, like my body will turn it off when I go to sleep and turns on when you awake and make your first move. I havent tried laying there not moving not more than a few minutes as I gotta go, Im figuring it would sooner or later turn fully on. Oh and occasionaly I get numbness in hands and feet, if I start moving them it will go away.

Your gallbladder is on your right side so I guess that can't be it. What is it that you think you have? SORRY for the long post but if anyone has any answers or thoughts please reply/post. I think I am going to try and have a hypogastric plexus block done to see what it would do for pain below navel. There really aren't anymore standard tests for me to have as I have had CT, MRI and ultrasounds. I have seen a urologist and they don't really know either, labs and scope of bladder were good. I will say it again I don't know anything worse than having a constant pain of 7 or higher all the time. Anyone who has this, and sounds like your about as miserable as me has my complete sympathy. I have one friend who had serious ear problems and was bad but not this bad and then my wife who is fully involved in this understand. Really no one can understand how bad this is, if your healthy you have no idea. It really destroys your life as your life is just about pain. When it gets so bad you can no longer distract yourself any time its misery.

Sincerely,
Rob

Jump to this post

@undiagnosed2016

What type of injections did you have? I am stumped a had it, I just can't see living in this much pain. My pain keeps getting worse so now its 8-9 all the time except for sleeping. I have had many injections and I finally did get a celiac plexus block down through radiology dept at our big research hospital. Gosh I thought this has to be it and it did nothing. I had a special doppler ultrasound to test for MALS and the surgeon who does do surgery said my flow numbers were fine. The strange think is I do have the J Hook that is usually the cause for MALS.

I am down to now PT and seeing a new councilor to try and relieve stress and anxiety. This pain has been going on now for over 3 years, started when nortriptyline stopped working for my mild gut ache. When I would stop taking it to see if I could go w/o pain came in a day. Took it for 17 years and then just slowly stopped working. Pain started as a daily 4 and has been over 8 since 10/1/20. I did have a high ejection fraction number of 94 so I took the chance and had the gallbladder taken out. That only helped my eating issue, I love to eat but slowly lost my appetite over a years times and lost 45 lbs from not enough calories. I now have been eating more since it was taken out and it was diseased they said but still have the same constant pain down the middle from xiphoid (seems like pressure pushing under/below it down to lower pelvis. It moves up and down as I call it the highway, always there but one will sometimes be more painful area than the other. it can fan out under the sternum/xiphoid area to the sides and same at waistband area.

I have consulted with Mayo GI and all they now can offer is drive from St Louis to Rochester. Thats a huge undertaking and honestly I dont think my pain level will allow me to do that trip. What kills me too is its Undiagnosed, best guess is neuromuscular disorder. I dont know how someone can live with this level of pain. At least with awful cancer you know what you have and can research it and fight it the best you can. I can't find anything to take the edge off.

One thing I read was about CYP450 or Cytochrome P450, its a genetics test to find out what pain meds or drugs wont work because your body wont metabolize them correctly. Has anyone ever heard of this? This could tell the doctor that higher doses of certain meds or finding something else to help. I just want some relief sometimes, to be able to get away from a level 8-9 all the time Its terrible that my body wont respond to Hydro, Oxi, morphine, Tramadol worked one time and got it to a 6.5 then I couldn't repeat it the next day. The hospital also tried dilaudid, nothing helps. I also had as I call it a One Hit Wonder with buprenorphine at a worked up to high level in a day and it moved the pain down the next morning to a 5, took most ot the lower pain away and a fair amount of the upper. It didn't help my appetite. It lasted about 36 hrs then I vomited and tried again during the week and couldn't repeat it. Other than that one injection helped me two years ago and it was the pain mgt dept at the hospital injected a lot of steroids' into they say my ilioinguinal and Hypogastric nerves, the areas they did this at was on each far side of my abdomen about lined up with the navel. I just remember them far apart on each side. That was in the first 16 months of this and I didn't know to press them to find out why. They did various other ones over the next year with no success like thoracic and intercostal.

I am at a loss, this pain is so bad. Other than reading a lot on this forum I don't know anyone who has ever had something like this that just starts out of blue and progressively gets worse each month. I heard good things about the Cleveland Clinic but doesnt sound like they figured out your pain issue. I keep adding more issues, after 3 years so around March of this year I started rubbing my foot back and forth on the floor. When my pain goes to 8.5-9 I shake it all the time, wearing holes in my socks. Best I can figure is this my body saying I need an outlet. It can be either foot but mainly do it with the left. Sometimes now and never happened before I have a delayed start to urinating, I know I need to go but seems to have to push/clinch to get going. Mornings are the worse, I can sleep for 4-5 hrs, get up and pee and get right back in bed I can go back to sleep. Though around 730-8am I wake up to go again and I can sit laying there not moving and the pain hasnt fully turned on like a light switch does, though when I get up and go to use the bathroom and come back to bed the pain is cooking full steam. This morning afterwards my pelvic pain turned on so bad it was a 9. Doesnt hurt to go its after, like my body will turn it off when I go to sleep and turns on when you awake and make your first move. I havent tried laying there not moving not more than a few minutes as I gotta go, Im figuring it would sooner or later turn fully on. Oh and occasionaly I get numbness in hands and feet, if I start moving them it will go away.

Your gallbladder is on your right side so I guess that can't be it. What is it that you think you have? SORRY for the long post but if anyone has any answers or thoughts please reply/post. I think I am going to try and have a hypogastric plexus block done to see what it would do for pain below navel. There really aren't anymore standard tests for me to have as I have had CT, MRI and ultrasounds. I have seen a urologist and they don't really know either, labs and scope of bladder were good. I will say it again I don't know anything worse than having a constant pain of 7 or higher all the time. Anyone who has this, and sounds like your about as miserable as me has my complete sympathy. I have one friend who had serious ear problems and was bad but not this bad and then my wife who is fully involved in this understand. Really no one can understand how bad this is, if your healthy you have no idea. It really destroys your life as your life is just about pain. When it gets so bad you can no longer distract yourself any time its misery.

Sincerely,
Rob

Jump to this post

Although I don’t want anyone to have this problem, it’s good to find people who can relate to me. I’ve been dealing with abdominal cutaneous nerve entrapment syndrome for 5 years. Started out as IBS. I knew it couldn’t be that because I drank 8-10 glasses of lemon water daily, ate lots of fresh fruit and veggies and walked 4-5 days a week. I’ve had many tests and spent 3 days at Cleveland clinic and they told I had fibromyalgia 🤦🏻‍♀️ I have pain on my left side and it’s really bad under my left breast. I wear lidocaine patches and have had 2 injections that have hardly helped. The doctor doesn’t want to give me anymore. I when I bend over there’s a pressure that mildly cuts my air off. It’s hard to make my bed or do stairs. I can’t exercise or even walk anymore. So I’m having other health concerns because of not getting diagnosed and properly treated for so long.

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Good Day,

When I found this forum post, I got excited that the posts were recent. Over the last year I have had abdominal pain and it has been a journey to say the least. I have just started down the abdominal wall pain journey a few months back. But here is my story:

I am a 32 year old male. I started noticing I had random abdominal pain about a year ago today. It was more of a nuisance at the time and I assumed it was muscle strain. Over the next six months it slowly got worse and worse. I would have one bad day and schedule an appt with my PCP then I would not have the pain weeks later at the appt. The pain continued to grow. I started having more and more bad days and the pain started to linger longer. So I thought okay something isn't right. [I also had this weird hernia like muscle spasm pain thing that would bulge out (right below my naval) every now and then. It would also hurt to my urethra, if I pee'd while it flared up it hurt like hell (oddly, ejaculating made it better). This started to become more frequent, from 4/year to 4/month (steadyhealth(dot)com/topics/abdominal-pain-that-is-felt-from-the-belly-button-through-the-peni) in that 20 page post people describe in detail what I had.] So I went to a hernia dr. He said I don't know what the hell is causing your pain but you have an umbilical hernia lets fix it.

He fixed it and also did a larascopy to check for any causes to the pain. This was Sept 2017. To date I have not had the bulge but sometimes when the muscles spasm I feel it in my urethra but it is very mild so I considered that aspect of the surgery a success.

However, immediately after the surgery I had a huge pain in my left side (a 4-6 inches from the naval). I assumed it was just from the surgery, but it was in between the two incisions. A few weeks later, surgery pain was gone but the original pain was now greater. At the time, it really only hurt in that one spot. So I thought the next logical place to go was the GI.

The GI did a scope of my stomach and a colonoscopy. Both came back normal and all blood work looked great. During this time the pain started to jump but the same original place hurt the most and most frequent. It was all only on the left side at this time as well. I met with my PCP and he was convinced it was chrohns disease. I felt defeated. A few days later it hurt so bad at work I said screw it and went to the ER. They did a cat scan of my organs and saw inflammation in my small intestine. So I went back to the GI and did the pill cam. Results came back normal again.

PCP still convinced it was chrons but also thought it might be my spine so I went and had MRI's with/without contrast of my brain, neck, and spine. There was some "stuff" with the lower spine but no trapped nerves they said.

At this point the pain had started happening on the right side as well. My PCP was still convinced I had chrohns and the GI was wrong. All labs and diagnostics said I was a very healthy individual except this pain. So I went to a pain clinic. It took two months before I got injections because they had to cancel the day before my injections and it was holiday time. I went and saw my PCP in this time and he did a test and said it was my abdominal wall he believed.

Then, three weeks ago I had my first injections, they were two nerve blocks lateral to my naval and some other injections for pain all over. After I left I had no pain. This lasted a week. My pain killer consumption was only for the first few days due to sore injections and after that no pills. The second week it slowly came back until it was fully back. During this time I started taking 1 pill a day. After 3 weeks, I was back to two a day. (I take 50 mg tramadol twice a day, among a long list of others) It also increased and started to linger much longer. It would feel like the weird feeling you get after someone punches you in the stomach. Plus burning, stabbing, throbbing pain. When I think I have a handle on it, it moves. But it has stayed in the same area for some time now. Essentially if you cup your hand around the naval, you touch most of the pain areas.

The called the mayo clinic and they said they could do nothing for me. I found this doctor forum below and today I asked if they used ultrasound on my injections. I was told "no that costs extra and most insurances don't cover it. We do use like an x ray thing but most of the doctors are so god they don't need that."

Today they told me they will try the injections a second time and to change to an alkali diet. I am not a fan of psuedo-science so the alkali diet thing pissed me off but to be honest, I am open to anything and have tried everything they suggest.

forums(dot) studentdoctor(dot)net/threads/abdominal-wall-pain.894846/

Do any of you know any doctors who specialize in abdominal wall pain?

I emailed the RN with the mayo clinical study about abdominal wall pain. At my injections appointment I am going to ask why they don't use ultrasound and if they don't, I will try to find a doctor who knows more about abdominal wall pain.

It is interesting about the shoes. I have felt like this might be the result of a posture thing. I also always catch myself yawning because I am always holding my breath and flexing my muscles. This is what my body does. I have been trying to make that not happen as much to see if that helps.

Sorry it would not let me post links cause I'm new. But those are important to my post.

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@sawah3 I have chronic abdominal wall pain at a level 8 and 18 hrs per day. Have had the same pain over two years now and was avg level 7 last year. Like your daughter and more I have had the MRI, CT Scans, blood work, gall bladder tested, bladder checked and had many different injections. My pain is now pelvis to xiphoid. Hurts to walk, driver over bumps, do steps etc because of the ab wall moving. Mine is 8 inches wide or so down the middle. When I wake up early due to pain and urinate right after I am back to 8 to 8.5 even. Pain more above navel and hurts to bad to lay back down, cant fall back asleep. I dont throw up but some light headed and stomach nausea do I sit up in bed for hours. Pain meds and antidepressants dont work for my pain. I am trying to line up a celiac plexus block with a pain mgt doctor. My pain doctor from last year doesnt do those, the thoracic and intercostal didnt help. Trigger pt didnt help. The second block they tried over a year ago in the ilioinguinal and iliohypogastric with steroids helped after a few days and then last for a few days and quit. I think I need nerve ablation. I dont though have any previous injury or surgery to attribute to. Your daughter should look into those lower nerves being pinched, trapped or injured and maybe just needs released. I am at wits end on pain, just even getting a 25% reduction for 4 hours would per day would be OK until better arrived. Its very hard to find a doctor that is familiar with abdominal nerve pain and how to investigate and treat it. Not every pain is a gall bladder or appendix. I saw a plastic surgeon and he didnt think my diastasis from navel to xiphoid had anything to do with it. Scans are clear so you are left with the nerves that mess with the muscles. I can't get my nerves to shut off. What about Ketamine infusions or other IV infusions for pain, not one doctor of mine has brought this up. Oxy and Hydro did nothing for me at the 15-20mg level. I'm not sure nerve pain in the abdomen responds to pain killers or antidepressants. We both need a lot of help because your daughter will have or has depression as its so hard for kids to deal with this. I finally cracked some mentally as I dont want to talk on the phone with many or see many at all. My biggest issue besides pain is now for the last 3 months loss of appetite. I have lost 11% of my total from June. I am not under weight but having a hard time wanting to eat 1500 calories per day. Medical Cannabis so far wont cut it for me or doesnt help much anymore. Kids can't do cannabis or even certain adult drugs so keeping them going emotionally is key, hope you can find a good pain mgt doctor in your area. I have about exhausted my town of St Louis/2mm people. I have a Mayo appt 2nd week Feb in MN but will be hard to survive till then. Chronic pain needs hope or something else to try next to keep you going.

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I had Robotic Laparoscopic surgery on 9/2/21 at St Joe’s in Phoenix. 3 of my abdominal nerves were cut. I am finally ACNES Free! Thank God for Dr Gillespie and his team!

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@rritam You seem to have some knowledge of ACNES. My 10 year old daughter was recently given this diagnosis after ruling out appendicitis and any GI issues. However, the ultrasound-guided injection meant to block the nerve did nothing for her. Her pain is in the right lower quadrant of her belly and it's constant, but worse when she laughs, stands up from sitting, bends down or if we're driving over bumps. We've taken her to physical therapists and at least one of them is not convinced she has the correct diagnosis. I'm curious what your symptoms were and what your results were with the injections.

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