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Median Arcuate Ligament Syndrome (MALS)

Digestive Health | Last Active: Oct 29 2:54pm | Replies (1225)

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@kariulrich

@ruudolpho I am so HAPPY you brought up the question about pain medication, this is a topic that weighs heavily on my mind as I too use pain medication to maintain a quality of life that is enjoyable. So, in my experience I have found pain medication has helped in several ways. I use Tramadol, the side effect of possible constipation helps control the horrific diarrhea that some of us MALS patients experience on daily basis. I believe both pain and malabsorption of food leads to our significant weight loss, so pain medication slows down the gut helping alleviate this problem. Also, I have found if I take my meds prior to eating the pain is substantially less and I am able to eat nutrient dense foods compared to eating a diet mainly of carbs. If I use it as pain rescue after I have eaten is does not work as well. I know each of us are different and metabolize medication differently, so my experience may not be the same as yours, however with the chronic MALS patient's I have spoke with we all have had success with pain meds. Here is the problem, with today's political climate on the perceived opioid crisis patients have to deal with shame, being stigmatized and made to feel like less of a human because of our pain. You obviously cannot afford to loose more weight, and I am happy to hear you have a reasonable physician that is addressing your pain. In my personal humble opinion, for you, like me, we are chronic MALS patients, I think it is reasonable and therapeutic to try pain medication and see if it works for you. For me, I have also lost a significant amount of weight, have become malnourished and have had exhaustion despite 2 successful surgeries (I say successful because the pain went away for 3 years, however like you the symptoms returned) During the the successful years my weight maintained at 155-160 I am 5'7 - I preferred the heavier weight as I had more energy and could eat normal meals (Still had bowel issues). My lowest weight was about a month ago at 116. I am currently struggling to maintain 120. For me my physicians have changed my medication from preventive to rescue on active ... so we will see how that works. There are few things you need to be aware of in chronic use of pain meds, there is a difference between addiction and tolerance. With long term use your body gets use to the dosage and people find they have to increase there dose for the medication to be effective, this is called tolerance and it is NOT addiction. There are things you can do to help with this if you work with your doctor closely. If you are fearful of addiction let your doctor know. I have been on meds for decades and have not had to increase my dosage, I have been fortunate, each person is different. I just want to say, I believe in some patients pain medication can significantly improve their quality of life, and I do believe it has many benefits for patients such as ourselves. There is a risk for addiction, but that is a risk for many medications, not just pain medication. May I ask, why you are uncomfortable taking pain medications? (I know this is a personal question, so do not feel obligated to respond). I have spoke with so many patients that this is a huge step, and when they find they are useful and improve their quality of life they become ashamed as if they were not strong enough to handle to daily pain that is dished out to them. As a nurse and as a patient I believe our medical community has done a disservice to many chronic pain patients.

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Replies to "@ruudolpho I am so HAPPY you brought up the question about pain medication, this is a..."

Hi Kari, Are you feeling okay? It seems like you are having issues again from the post. I hope you are doing okay.
Jill

Thank you Kari.
One concern I have is that patients on opioids could accidentally overdose. I take a low dose, one 5 mlg. tablet before a meal.
Another concern is the annoying side effects, feeling out-of-it, and dizzy. I guess I need to get used to it. I will be seeing my doctor this Friday and will discuss these issues.
Once again. Kari, we are all so lucky to have you as a mentor. You have so much compassion.

Hi Kari
Over here in the UK I was told by my pain specialist that they are actively trying to reduce the amount of morphine they are prescribing to patients. It is good and bad, good because I think morphine is over prescribed by consultants that don't look deeply enough into a patients illness. I mentioned in a post that I was once on 90mg of MST twice daily which in hindsight was far too higher dose. It got that way because like you said I became tolerant and had to move up a dose. Why I say bad is because before I was diagnosed with MALs a couple of months ago, my pain specialist said the final stage is to put me on a spinal cord stimulator. He really pushed for me to sign up to this. I did my research and talked to people who had it fitted. If I went ahead that would be the end of investigating what was causing the pain and there were certain scans I could not have if I had the stimulator fitted. I was adamant that I wasn't going to give up finding what was causing this horrific pain so declined the stimulator until I had exhausted all avenues. I'm glad I did otherwise I wouldn't have had the angiogram which showed up the MALs. I know the spinal cord stimulator has helped many people especially those with nerve pain. The problem I have over here in the UK is MALs is even less known, it's taken 2 months for me just to get a consultation with a vascular surgeon. I am hazarding a guess that he knows nothing about MALs. I see him in 2 weeks.

I asked Jill the same question if the consultant has looked at the Celiac Plexus. If like me you have pain when you breathe in and out then (and this is my hypothesis) maybe your suffering from the hammer anvil action. The celiac trunk is trapped in between the median acuate ligament and the celiac plexus. The ligament acting as the hammer when you breathe and the plexus acting as the anvil. I am thinking after a long period of time the celiac plexus becomes damaged too causing scaring/scar tissue on the plexus nerve bundle. Amongst the research they believe that if you get relief from a celiac plexus block then you would be a good candidate for surgery to remove the celiac plexus nerve bundle which may offer permanent pain relief. I believe that MALs sufferers get pain from different areas, pain after eating maybe from lack of blood supply because of compression. Pain on breathing as mention before from hammer anvil action. Constant deep pain could be from the stenosis of the artery itself. That's why I say pain relief should be tailored to the stage you are at. I will post about food too and what has helped me to eat again and not lose weight. There is something you could try yourself which may tell you if it is the nerve bundle. Try a tens machine, if you get some pain relief then you may need to talk to your primary about investigating your celiac plexus.