Hi @plucky I am so sorry and welcome to the group discussion. You have a lot of similar symptoms as I do. I also have CFS. I wonder which is worse, MALS, or CFS or the combination, what do I focus on since no dr is helping.....you know. Well first off about MALS, I did not have the 'traditional' symptoms either. My surgeon said he would not have thought of that right off since I was not loosing weight or vomiting. Mine was caught by accident. I had severe pain and went to the er to hopefully get some pain meds. I assumed like I had been told, ulcer or IBS, you know. They insisted to do ct scan and good thing they came back and said do you know your arteries are narrowed???? So you don't have to have traditional symptoms. Mine was also different in that it was more complicated then they realized. When they went in the SMA was also involved and things were encased in things and so on.....It was a 7 hour surgery.
Had relief and again they started narrowing again. I never vomited, I actually gained weight, but that was due to tremendous horrible amount of stress with family. I could eat, but it hurt so much worse after eating and bloating. I was told for 3 years I had SIBO as well, had lab tests also that were positive, but was referred to Mayo for that, and they did a test here, different protocol then I believe should be and ever had done. SAid negative and dr said, just ibs and you've had pain so long, you are sensitive...., can't help you.Still dealing with that. A whole other issue, but my point is find a dr. that listens to you and wants to help you. Whoever says they wont treat you because of certain things, even though you clearly have MALS is ridiculous...LIke you, my debilitating symptoms are constipation, mental fog/sluggishness, constant gut pain, exhaustion and so on. Who knows what to separate from what, but anything to help should be done. MALS is not okay. Do you know if you have compression. That definitely needs to be addressed because of blood flow issues. I am so tired of certain drs. thinking they know everything. Plus every person is unique and should be treated that way. Good luck to you and if you have any questions don't hesitate to ask, don't know if I'll have any answers....Kari is wonderful she usually does......
Jill

@pluckyn welcome to the group!! Mals... well it is a significant surgery and one that is even more complex when you have multiple diagnosis. Trying to weed through what symptoms are causing what is difficult, and in the end I believe all diagnosis contribute to a patients overall well-being, The bowel problems with MALS can get better controlled after the surgery, for me it was over a year before these symptoms stabilized and that is with continued use of medications. May I ask how is your nutritional intake? It does not matter if you are losing weight if you are not getting the proper nutrition, My second surgery I was able to maintain a stable weight by eating m&m's .... A LOT... they were the only thing thing I could tolerate, however I was malnourished, weak and spent most days in bed due to fatigue. Mals contributes to a lot of symptoms but so does ME/CFS. Hard to get both under control, but it is possible.

Hi Kari, I'm just catching up. My life is pretty quiet except just had a crazy week of crisis management for two random events that fell out of the sky. Now that those are dealt with, back to MALS!
I was focusing on ME/CFS because that has been my only diagnosis from Canada. But they also knew I had MALS and told me it was not treatable, that fixing it was only a cosmetic surgery and therefore not covered by public healthcare, that I look fine, that it's not a real illness, etc. I was left to manage my ME/CFS symptoms on my own since there is a 2 year wait to get into the Provinicial Chronic Illness Management Program in Vancouver.
I take digestive enzymes with most meals especially if there are vegetables, and lactase if there is dairy. I also have a protocol for gut repair with glutamine and probiotics after having a bout of bad bowel symptoms such as gas++ diarrhea pain. Potato chips are my fallback food when bowel symptoms are too extreme. After my appendectomy I had diarrhea for 10 months and saw dieticians and was very weak and malnourished. They had me mostly on a BRAT diet, then gradually added canned vegetables and now eat very small frequent meals that are nutritionally good.

Thanks for your info Jill! I appreciate your sharing how much went into your lengthy run of diagnostics, long surgery, complicated family situation. I'm sorry you had so much stress and hope things are better. My own lengthy illness with no explanation experience was stressful too: not tolerated by my 'fair weather' family and friends. The dynamics were so intractable and increased my ill health so much that I finally left them behind to find healthier environments and relationships.
I am in SoCal now and have a good PCP doctor and my current dilemma is which specialists to work with. He also said the journey of diagnostics is just beginning, so hold onto my hat for a ride, so don't know about compression or others stats yet.
The Gastro I met last week was awesome; saw that my weight is not an issue and took the time to look at lists of symptoms on his computer as we sat, and also noted my own symptoms and personal challenges. He was agreeable to do the surgery, and we're waiting for the vascular surgeon who ordered my CTA and whom I've never met in person to decide. I've heard good things about this vascular surgeon and My PCP is going to consult with him again but I'm a bit concerned at how he hasn't met me in person yet.
History: When I was pregnant in Canada 35 years ago, my GP told me he heard a funny bruit in my abdomen and told me I might have an aneurism, but since I was pregnant he wasn't going to do anything about it. I didn't understand the implications then and there was no follow up since the birth. I've had lots of symptoms with fatigue, food intolerances, allergies, ME/CFS etc. ever since.
Your comment about SIBO is interesting. I just looked that up and see that I've been eating as if on those diets for the past several years mainly because my symptoms ease when I do. How do those diets work for you?
I have had low level anemia for years and will see a hematologist tomorrow, as there is a family history of CLL leukemia, or this may be due to MALS. Same with low thyroid, could be MALS...are these symptoms you know about? Best...Susan

My heart goes out to you in trying to manage multiple diseases! I am right there with you. I do believe we need to create more awareness in MALS, having patients define the symptoms, and collaborating with healthcare providers on how to manage these symptoms so that our quality of life is not such a struggle. It gets very tiring fighting for yourself and getting validation that what you are going through is real. I am so happy we have groups such as this to make life a little more bearable. When random events fall from the sky, such as you have described above the set back and where to go next can be OVERWHELMING to say the least. I am have discovered being in a state of fight or flight is a constant for us MALS people. It causes great stress and anxiety daily, even when we do everything in our power to manage symptoms appropriately. I have done meditation, acupuncture, psychological therapy, nutrition therapy, visualization, massage therapy... you name it I have tried and continue to use the methods that have worked best for me.... however with all the best intentions and dedication to get a handle on MALS it is a daily challenge. When I have my symptoms under control through the use of medication for pain management my quality of life is considerable improved. I feel frustrated at the simple fact that many of us have a chronic disease and even when we accept that and do our best to manage it, we have a fear of not be treated. Interesting that potato chips are your fall back food, I get that!! The sodium.... I bet your body is craving the sodium. Are you able to take in fluids? When my pain is at the greatest fluids can also be difficult.

Hi Kari, I'm so glad you asked about fluids. I know that keeping my fluid intake high is important and find electrolyte tabs like Nuun and Gu very helpful. I'm on a high salt diet and I think the potato chip fat calms my gut and the simple carbs give calories. My dietician was very excited with the novelty of telling someone to have more salt in their diet!
But I also have made the mistake of convincing myself that fluids will be easier to pass than solids. It's often not true: right now my stomach feels like a sloshy water balloon from drinking a lot of water today. I have learned not to have more than sips of fluids with meals or I will have reflux.
I was taking Tylenol for abdominal pain but found out I also have some NAFLD and decided to avoid things that are hard on the liver.
Wouldn't it be great if we could meditate the MALS away? Having peers to connect with is wonderful, thank you and everyone here for this group!

@plucky you sure have had your share as well. Good for you to get out of a negative environment. My parents were supportive, problem was after my first surgery my dad suddenly passed, of course I was devastated and my mom had beginning signs of Alzheimer's. My 2 sisters were like, well your off you take her.....yea off because I just had an open surgery and was just using a walker to get around...plus they decided to say I was taking money, they were not happy my dad left me POA and all....well that may be why my dad did that....anyway, then my mom passed from a stroke, I think she was heartbroken without my dad, and my sisters pissed her off....my mom was a crackup....so I had to get out of there. to many horrible memories. I have two wonderful children who have been so helpful, and my husband. Of course all that stress didn't help that situation...oh boy sorry, I am going on. I get so angry cause I wonder how my health would be if it wasn't for all that, 3 years of hell. That has a huge toll on the body. But I am trying....I know it is so hard to know what symptoms are from what. So many overlap. I did try all the diets, none really worked, but then again could have been because of the MALS. Also you can blame so much on the CFS....I just keep researching. The more knowledge you know the better. If you find a dr. that dismisses you and that knowledge, you need to go somewhere else. Unfortunately I have had that and I am sure almost all of us have, but don't let them win. You know your body. I was up and down with the anemia. I took supplements though and now ok. A lot of my blood work comes at like the highest or lowest range number so its not flagged so they say it's ok, so I don't know. I don't think that is ok. If a number is that close and your symptoms go with that, there is probably something wrong/off. Everyone is not the same and fit in a box. A lot of the naturalpathic drs. believe that but the problem is insurance doesn't cover them a lot of the time. I did go to one for awhile, but had to stop due to money issues. So I know you are in Canada so I don't know how that would work there. I don't know if I answered your questions. A lot of people have different symptoms for MALS, but most common are the pain after eating, bloating. Some people don't have compression, but the nerves are being pushed on by the diaphragm. If you go onto MALS PALS you can get a lot of information there. I am trying to also find a online support group for ME/CFS. If you know one let me know. Hang in there. It is a long process, just try to stay positive and when you find it to hard reach out to someone on here, I am on a lot or just message me . I know it is hard and sometimes you just want to say I give up, but you can't!!!
Jill

Sometimes I find even water to be so difficult. When I have really bad pain, like my chest pain, I drink some water and makes it so much worse!!! Strange things we have...