Achalasia: Ongoing issues with pressure, pain and spasms, any ideas?

Posted by ed32 @ed32, Aug 10, 2022

I have been diagnosed at Mayo with achalasia and had several Surgeries. Thy can not come up with a plan to address extreme pressure and pain in my abdomen and spasms in esophagus and diaphragm. O throw up every tome I bend at the waist and my diaphragm vontracts. My quality of life I'd not good and unpredictable when I will have attacks. Can't work, many of our plans for activities ,trips etc. Have to be canceled. Very frustrated. Extreme bloating in GI system too. Any ideas?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Colleen Young, Connect Director | @colleenyoung | Aug 14, 2022

@ed32, I added your question to the Digestive Health group (https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/) where you find additional discussions about achalasia like these:

– Achalasia: https://connect.mayoclinic.org/discussion/achalasia/
– Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
– POEM Surgery for Achalasia: https://connect.mayoclinic.org/discussion/two-months-after-poem-surgery-for-achalasia/
- Achalasia: What's your experience with a Heller myotomy?: https://connect.mayoclinic.org/discussion/achalasia-2/

Ed, while reviewing the other related discussions about achalasia, I noticed that you started posting about your pain and struggles with symptoms back in 2017 here:
– Achalasia Chronic pain: https://connect.mayoclinic.org/discussion/achalesia-chronic-pain/

I'm so sorry to hear that surgeries have not been successful and that you and your GI remain confounded.
I'm tagging @fourof5zs @hopeful33250 @rwinney and @dandl48 to bring them into this discussion. Like you, they have persisted in finding answers for perplexing pain and symptoms that are ellusive. Sharing their experiences with Mayo Clinic, Pain Rehab, GI and other avenues they've pursued may bring some new options for you to consider.

Ed, did anyone at Mayo tell you about the Pain Rehab program of mention central sensitization?

kat93sl | @kat93sl | Aug 15, 2022

@ed32, I was diagnosed with Achalasia 25 years ago. It started with intense chest pains then 3 months later I had trouble swallowing food. I had dilation done which helped with the swallowing but the esophageal spasms continued and they would come at unexpected times, nothing consistent that I was doing seemed to give me any clues as to what to do. I was prescribed low dose alprazolam and seemed to help on days when I was having multiple spasms. Through a friend of a friend she suggested I drink sips of water. I found that as soon I felt the pain coming on I would drink room temperature water and keep swallowing until the pain subsided. It has worked! Sometimes the chest pain is mild and sometimes it is extreme but as long as I keep drinking the water the pain subsides. Hope this helps.

Rachel, Volunteer Mentor | @rwinney | Aug 17, 2022

Hey there @ed32, I'm so sorry to read of your struggles. I hope today finds you maintaining pretty well. When quality of life is being affected, that's a game changer and I feel your frustration. It's great to hear you've been in the good hands of Mayo, but when doctors (even the best) scratch their heads and can't come up with a plan, that typically means they are out of ideas because your case may have turned from acute to chronic and they are not trained to help patients move through the stages of chronic self-management.

Understandably, doctors have their respective lanes and do their best with what they know. It may be possible that your pressure, pain and spasms are from your body overreacting and being in a stage of hypersensitivity. This stage is called central sensitization which @colleenyoung mentioned in her reply to you prior.

I am hoping you will watch this video from Mayo's Dr. Sletten who presents on Central Sensitization Syndrome (CSS). He just may help to explain some of your unexplainable:

Although I am not familiar with Achalasia specifically, I am familiar with chronic, disruptive pain and sensory flares/attacks that impact my life and entire body daily. I have CSS and it has prevented me from working, making "normal" plans and vacations as well. I am now unpredictable given my circumstances, but there is hope.

I graduated Mayo PRC almost 2 years ago. There I learned how to self-manage and was provided tools and a comprehensive plan to better my path forward. PRC gave me hope to know that I can still have life quality even if it looks a little different than it used to. Here's more information about the program in case you're interested:

https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691

I'm not too sure where your head is at currently, but I sincerely hope I have helped in any small way. Do you mind getting back to me with your thoughts on the ideas I've thrown out to you? I'm wondering... how have the past 6 days gone for you since you posted your question?