Living with ACNES - Episode 2 - Living with Blank Podcast

[@tammyo8922]

OMG - hallelujah!!!!!!!!! 🙌 Thank you so much for sharing your story - it's EXACTLY what I'm going through! 🙏🙏🙏 I couldn't describe it as well as you did & I can't get any doctors to believe me. Prayers answered. ♥️ I wish you well in your health journey.

[@chrisihouck8393]

Thank you for this! I just went through the whole GI workup..again..this happened 2 others times and a GI first mentioned the nerve issue in 2021. Now today, same thing..everything seems normal, possibly a nerve..will be moving forward with THIS possibility! Almost the exact same story for me! I’m 54, 2 c-sections and an abdominal hernia repair, GI issues, UCTD/arthritis…they all run together. It makes sense that I’ve flared the worst after extreme workouts (it’s a daily part of life for me) cervical and thoracic issues..can’t thank you enough!

[@jayzed4099]

Thank you, this explains a lot! My pain was 100 out of 10, thought it was a gal bladder attack. As a healthy active 54 y.o female RMT- I know my body, I was bawling in agony for days. My relief- I have an athletic PT doing IASTM (Graston) deep tissue, abdominal facial release, lat, intercostals, back therapeutic massage, abdominal low intensity laser (BioFlex laser) cupping my abdomen, stretches, foam roll core, Advil, ginger turmeric tea, yoga - self employed so I have to keep strong.

[@debrathomas3989]

Thank you these are the symptoms that I’m having, it hurts to sit, bend, and drive. But lying down it’s better

[@arlettasloan6453]

I no longer remember how I ended up reading about ACNES but before that I had lots of "diagnosed" problems like H Pylori, endometriosis, Fibromyalgia, allergies, IBS, etc. Now, I legitimately have or have had some of those problems, as a certainty. But, in what, this doctor wrote that this is one of the first things that should be checked for if any severe-pain-causing syndrome or bowel condition is suspected because it might be part of the problem and, sometimes, it is the only problem; but, unfortunately, many people do not learn that until after part of their bowel is removed or they've gone through several other surgeries. He said how to treat it BEFORE injection by simply probing with a finger to find the swollen nerve spot(s) and the hollow there, then gently rubbing in the hollow. Oh, and now I just remembered how I found it. It was about my knee pain, which developed without there being any possible injury to the knee and which was made worse if I had gas. Weird! He said the pain from ACNES can radiate outward to cause knee pain, shoulder pain, lower back pain, etc. That sounded like my kind of problem so I did the abdominal probing, found the lumps as he mentioned, found the hollow and rubbed, felt better some and could finally go to the bathroom. Some of my symptoms that seem to be caused by it are radiating pain that makes it near impossible to walk well because of pain shooting into the lower back, down both legs but especially affecting the knees, and into the arms affecting my ability to type and really hurting my wrists and quite a bit of the tender spots associated with Fibromyalgia seem to clear up. Now, this doctor said one of the things that can cause this nerve entrapment is having inflammatory bowel conditions, including allergic reactions, because, the pressure can come from outside pressure, inside pressure or both. He also said the pain can be in a multitude of places in the abdominal area. I have found everything he said to be true. My pain is still very real and still gets way worse when my gut is having its issues but I do feel a little better, a little more often, as I test thing out and do some massage of some of the hollows near the inflamed nerves. I know I need to sort out my gut health the remove the pressure, too. That's always been the hard part.

[@rodmeisterful]

Really helpful to those of us on the journey, thanks!

[@ampman2011]

just got a pain near my belly button ride side, gets worse as the day goes on. Sometimes tingles and itches. Been going on for over a month, also burns later in the day. Came on a couple of days after doing torso rotations a few months ago, went away and now back for over a month. sometimes it feels like a pin prick in areas nearby. I have no other gastro symptoms, still cycle 100km most weekends and it feels great then!

[@marinachristodoulides3914]

treatment?

[@breestafford8878]

Missdiagnosed for 20 yrs here, have just last week been offered the possibility of acnes. Gi appointment in a few days

[@virginiacooper1929]

I was misdiagnosed with pancreatitis and blamed it on my IBS. Finally found a Dr who asked me to raise my head and legs then pressed where my pain was and I screamed. He said you have ACNES probably from my gallbladder surgery. I was so relieved to have a diagnosis. Pain MGMT Dr will be doing a procedure Tuesday.

[@virginiacooper1929]

Trigger point injection Tuesday

[@vishalisen4242]

​@@virginiacooper1929 how did it go?

[@patsevigny5044]

This was so helpful. I went through all of this.i finally saw a dr in boston.and i am headed for pain shots.i hope it works.what is the best eay to sleep w/ this? Nighttime is awful.

[@KBradAdams]

Can anyone give us some PT exercises that might help? My surgeon gave me a prescription for PT but I feel like I can do it myself at home I just need some exercises and can't find any online or anywhere.

[@vileproductions8511]

i believe i have this from an abdominal injury i sustained doing crunches … does anyone else feel like they have to take really short breathes ? like it’s hard to breath when it flares up really bad…. the only way i can get through my day at work is wearing a a back brace that tightens up my abs as well.

[@АнастасияИванова-н7п]

The same :( how are you now ?

[@patsevigny5044]

This was so so helpful. Ty

[@virginiacooper1929]

I describe it as the same pain you get when you get a catch in your side when running but it's non-stop when sitting crunched up all day. Heating pad helps and lying down flat but that's no life. Gabapentin helps til I can have the trigger point procedure

[@virginiacooper1929]

Yes other Drs could press on my abdomen all day with no reaction but tensing up my abs and pressure right on that spot let him know that's what it was. It all started 4 years after my gallbladder surgery

[@marinachristodoulides3914]

same any treatment?

[@phoenixvilletabletennisclu3243]

Any chance we can get an update on the outcome of the injections or other treatments?

[@ampman2011]

I also lost 10kg in the last year, intentionally

[@jackdoubleu3251]

Ive been living with this for the past 10 years. I also have a hernia on my left side groin , so they keep suggestions surgery right now but my pain is on the right spot same spot. Im scared to get surgery dont think it will help with the pain . I started Google can the sciatic nerve causes abdominal pain and it all lead me here. What help relieve it is laying on my back folding my leg back , HEAT (i use a blow dryer on the spot where pain is) , and sometimes water . Ive been thinking i was crazy for years because the pain comes n goes , i was thinking am i over exaggerating with gas pain ? My whole life has stoped because of this pain. Im so happy today i found this. Cant wait to tell my doctor Monday morning!

[@staydisciplined6471]

@jackdoubleu3251 I too had an in-person appointment with two hernia specialists (two separate opinions)... I was put on the schedule for hernia surgery... but my wife suggested that I get more imaging done.... this was even though the surgeon was confident... he had "done thousands of surgeries" etc . he was a little resistant to the imaging but to my surprise I received a call 2 days later stating I do not have a hernia... he called it a "muscle imbalance"? ... and suggested physical therapy. summary: continue to do your due diligence and try the most conservative routes possible before you jump to any type of surgical procedure.

[@jackdoubleu3251]

@staydisciplined6471 thank you ! I just recently got a mri done and I get a ultrasound next week. Hopefully things go well because I really don't want surgery.

[@LizGumerman-sm1gb]

Does anyone have a doctor recommendation for Arizona who does trigger point injections?

[@dianer1529]

Has anyone tried the GRASTON technique to get relief?

[@KBradAdams]

What is the GRASTON technique ? I will try anything.

[@patsevigny5044]

Me too

[@JeffreyGroudan]

She is not correct about mainly middle age women getting ACNES. ALL ages male and female. Was discovered in 1894. Carnett test in 1924 so been around just not easily diagnosed.

[@jackdoubleu3251]

Yes because I'm a man and I've been suffering from it since I was 25 I'm 34 now

[@ca724]

I have the same thing but my bulges out