Has anyone been diagnosed with Abdominal Wall Pain

@bebe6 please keep us posted and I will do the same. Sadly you are right that most doctors decide real quickly after coming in the room if it fits in their box of knowledge. What ticks me off is that they don't even think much about it and the pain you are in. Most dont even recommend someone or something. If a 51 (my age) neurologist, or plastic surgeon or primary doctor had our pain non stop for two years what would they do? Would they accept the lack of interest from a doctor appt. Who would they call or try, chronic pain all the time is not acceptable and sadly it seems that abdominal pain isnt a focus if its not cause by an organ or issue that shows up on a scan.

That’s so true! It’s hard to get doctors to think outside the box! After many doctors and a 3 day visit to Cleveland clinic, I diagnosed myself! I’ve had two injections with very little relief! My doctor wants me to see a pain psychologist. I do have other problems. I really believe I need either more injections or surgery, which he doesn’t seem interested in either one. What else can I do? It has really changed my life! The pain is all the time. I can’t breathe properly and I can barely scrub the bath tub or make the bed without getting winded and hurting in my lower groin area.

Welcome to Connect @undiagnosed2016, As you probably already know, we are not medically trained, we are just folks who have been there ourselves or have been a caregiver for a patient who reported similar symptoms.

When you say that you diagnosed yourself.....what did you mean? Did you administer and prescribe your own injections? Do you mind telling me what they were supposed to do for you?

Are your "other problems" things related to your abdominal pain? What can the pain psychologist do for you......verify your diagnosis or support your viewpoint and analysis.

The reason that I am asking is that I had what I called the abdominal firepit for about 6 months after being diagnosed with SFN, small fiber neuropathy. It reminded me of lighting one of those glass fireplaces....just roared across my abdomen every morning.

My SFN has moved on to some other notable nerve tragedy and I have not had any abdominal problems since then. I used medical cannabis tinctures. Did that help? I don't know.....the pain just stopped.

My very best wishes to you in your search for comfort and ease.
Chris

Thank you for the quick response! It’s nice to have a forum that I can find new possibilities and have someone that can relate to my issues. A doctor prescribed a lidocaine patch for the soreness under my left breast and it helped. So I researched the anatomy of the that area and ACNES kept coming up, so I went to a doctor and he has given me two injections. They helped a very small amount. He wants me to see a pain psychologist to help deal with chronic pain and strengthen my core muscles. I did have one meeting with her but he wants me to do more before he gives me more injections. When I made he appointment it was 22 months out. I asked for another injection to help while I wait for my appointment. He said no. I don’t breathe properly and I can’t wear my bra properly. There are many things I can’t do anymore. I am a rural carrier and I know that my job keeps me from healing quicker, but I can’t stop working. I have made many adjustments to remedy that but but every time I lean out the window I stretch my left side. I’ve had many tests and tried many different things with little relief. I’m glad that this isn’t fatal but being undiagnosed and getting the run around has been more than frustrating! I can’t exercise or even walk very far, so I’ve gained weight and I’m out of shape.

Thank you for posting. Very helpful

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.

I went through about 75 years of pain in that area before I found what was causing my pain. I also had pain on my right chest, but that turned out to be Gall Bladder inflammation. But the left side was the same pain, but there is no gall bladder there. So what is there? I still get the pain, but now I have learned that I have inflammation of the SPLEEN from my Gelsolin (Finnish Amyloidosis- GSN -AGel) The GSN rips the Actin web open and allows protein fibrils to invade the cells, or to grab and hold on to the cells, creating an enlarged spleen inflammation. Some honest signs of GSN are 1. 12-lead EKG showing low voltage in the ventricles (or just one), long QRT, ANY irregularity of the tracings. Your doc will have to magnify the tracing in order to see the tiny sawtooth pattern in one of the Ventricles, in just the upper left corner of the EKG picture. 2. Red, gray, black, purple splotches of varying size around your face, especially your eyes and forehead, also on toes. On the face, the best treatment is "Gold Bond Psoriasis cream with aspirin." 3. Brittle nails on toes and fingers. 4. These same colors of splotches anywhere the skin is disturbed. 5 years ago I went to Mayo. They took blood samples along a particular vein in my right arm. Now I have 6 1/8 inch gray splotches along that vein where they took the samples. I also have many other splotches on my body where I have had pimples, injections etc. in the last 20 years. 6. I have easy bruising, anywhere on my body. 7. I have a toothpaste-style dandruff in my hair if I leave it without washing for a few days. Grandpa's tar soap removes it easily. 8. My urinary sphincter is solid now. I can neither open nor close it. I have to use the stiffer catheter to urinate because the fibrils have turned the sphincter to leather. OK, If you want more, contact me privately.

I have the same area pain... feels like something under my left rib, hurts terribly. I’ve had abdominal ultrasound, chest X-ray and ct scan and there’s nothing out of place. I’ve been to the er twice and starting to feel like I’m going crazy. I hope you get some answers.

@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

Dear Julie, Just 2 days ago I had robotic laparoscopic surgery to cure my ACNES. I have 3 nerves severed. Although very sore from the cutting my ACNES surgery and all the symptoms are finally gone - Thank God and Thank Dr. Thomas Gillespie @ St Joe's in Phoenix, AZ. Wonderful team!!!