Median Arcuate Ligament Syndrome (MALS)

I have not noticed any side effects from the Lyrica. I have in fact gained weight. At 6 foot one, I'm now at 120 pounds. I was down to 108 pounds in July after my surgery. My appetite has pushed me to eat more, but I still struggle with weakness and exhaustion. I will keep you posted. Lou

Hi @kariulrich , I'm glad to hear back from you!! You have been so helpful to me and I am sure many others with great information. I was worried maybe you had a procedure or something done or just feeling lousy. I know I have times that get really bad, I am lucky to get out of bed. My holidays were quiet, my kids and us, but really nice. How were yours?
Well thanks for the info again. I am going to my primary next week so I wanted to let her know about the pharmacological testing. I look forward to reading and exploring those links as well.
Sorry that the Cymbalta isn't helping with the pain, but I know with me they started a low dose and then increased so hopefully that will help you.
Congratulations on your BSN! That is great. I really miss working (being with the kids, I was a teacher for special ed). I wonder if I will ever be able to go back to it. I did renew my certification last year to try and stay positive. As far as the SSD, you should try again. They always turn you down the first time. I was lucky, my long term disability with my employer had this group called the Advocator. They helped with everything. All the papers, any questions and right before my hearing they got me a lawyer. I was turned down twice and at the hearing they approved me right then and there. I then got medicare, but it isn't as good as I thought. For some crazy reason the state of Arizona and I think maybe 2 or 3 other states, don't let you get a supplement plan if you are on social security disability. Kind of the stupidest thing. Your sick, you can't work obviously and you need medical attention......how are you suppose to pay for it. Crazy. Anyway I digress....I don't know your exact situation and all but I would encourage you to apply again. If you need any help and I can help you in anyway, please let me know.
Always great to hear from you. Good luck with the meds and thanks again for the info!!!

@ruudolpho what is so funny about MALS for me, I do have bouts of nausea at times, but what is difficult is that I get so hungry!!! The food adversion is the only way to completely stop the pain. For me taking Tramadol has worked to prevent and limit the pain to some degree. The malnutrition is not easy to bounce back from... hopefully as your nutrition improves so will the weakness and exhaustion. I do believe it takes a full year to reach recovery, and maybe longer to get back your strength. You are in my thoughts. Always good to hear from you Lou!

@jmmb Thank you always for your words of encouragement, they mean so much to me. If you can keep up your certification.... you never know. Even if you never use it again, it can give you a source of hope. That is why I have kept up my nursing license. I thought if I gave it I would give up hope of feeling better. I don’t know if that makes sense to you? I did not know that supplements were not available in several states, that is so disappointing. It is no surprise to me you are a special ed teacher, you are a nurturing and caring individual. ❤️

@kariulrich I know exactly what you mean!! You have to hold on to some sort of hope that there will be some part of your old life coming back. It seems like it was a whole different life. Thank you so much for your kind words. Talking with you gives me hope. I did talk with my primary dr. and she is ordering the pharmacology testing. That will be interesting. They do most of my meds. She also agrees that I should see a cardiologist, so she sent in the referral to mayo. I'll see what happens there. Yesterday I was in the ER all day. I have back issues but I was up all night with such pain, I couldn't lay down, sit or stand. My back hip and legs hurt so bad , almost like a piano fell on my lower back and smashed it. I don't even know how to explain it. My fingers were and still are tingly. I went to a Banner hospital er 10 min from my house. They wanted to make sure I didn't have the flu so they did chest xray, nasal swab and some labs. I am like ok but what about my legs hip and back.....They gave me pain meds and sent me home. Pain meds worked, but why did that happen I wonder. To me with all that is going on, that is kind of scary. Maybe cardiologist will know, or I have a follow up with my vascular surgeon on the 31st. It is just so frustrating, like we all know, I feel like no one really listens to what I am saying, or they don't talk to each other at Mayo. That was my biggest disappointment. I need to address that again when I am at my next appointment. I love my surgeon, it is my GI dr I am not pleased with, but hoping if they communicated that would help. I will see what happens once cardiologist gets involved. I am just really getting tired of it all.
After my surgeon visit I am thinking of switching out my Cymbalta with the savella, same class and used for fatigue and fibromyalgia. maybe that will help. How are you doing with the increase in the Cymbalta? I think I have been on it just to long. 20 years probably for me I think.
Well thank you so much again. I hope you see how much you have helped and continue to help me in this "journey" and the many others I read here as well....

I have a question about the Tramadol. I think when I was in er yesterday, they gave me Tramadol but it was muscle relaxer type pain reliever. Is that correct? I could have heard the name wrong. It sounded familiar to me and when I just read this I thought it could be this????

Tramadol is for moderate to severe pain. Also called Ultram. There are many muscle relaxants out there and one with a T (Tabradol). Not an anti-depressant like used in chronic pain but can act chemically like one and help with the pain and spasms. I would ask and find out. Tramadol is used in the ER but is a pain medicine not muscle relaxant. They could have given it to you if you had pain but I would ask, even your family doctor as I would hope he gets your records.

Interesting, thank you for your input. I will ask.

jmmb I found a Dr that I have occasionally watched. Last night he spoke on fibromyalgia (I have but not bad anymore). If you pull up his YouTube video Dr Dan Claw the head of Chronic Pain Fatigue Center of the University of Michigan, he addressed medication and brain chemicals.He is very informative but "never" felt any pain in his life and I am not 100% agreeable about what he states. Anyway, Tramadol is like I stated but he said, he dislikes opioids but uses Tramadol in the fact it acts as a weak anti-depressant like Savella/Cymbalta? He also stated it works on gamma hydroxybutyrate receptors (?) and the other ones work on serotonin and norepinephrine. A few years ago the FDA was going to take synthetic Tramadol off market because it was addicting and has side effects. It still is but you should research it. I don't know when they decided to use as an anti-depressant but as I stated he is against opioids but not Tramadol??? Strange. A friend of mine took it for pain at that time and had relief (I never did) and was also told non- addicting but IS. Was afraid when was going to be taken off market but wasn't, then her dosage had to be lowered. It is the side-effects of opioids he does not like and not effective in "brain" pain. That is why research is so important. Hope you are getting the assistance you need and are feeling much better. I still would question your doctor what they used. Don't know any doctors using it around my area or any medical associates I know

@jlfisher56 thank you so much for this information. I am going to definitely look into this. I am taking Cymbalta, but have been for 20 years and think I have become 'immune' to it. I was thinking of switching to savella. I just get overwhelmed because I feel I have so many things going on, what is related to what and don't know what dr to ask about what. My primary is great, but she can only do so much. I have an appointment with my vascular surgeon on the 31st. I guess I can start there. I am going to watch the video you suggested. Thanks again for your help. This site has been wonderful for me because of people like you and @kariulrich and others, so thank you all.