@jmmb! Hello!! Good to hear from you. How were your holidays? How are you feeling? I am sorry to hear about your meds. I am doing good. I have not been on much, my current class is wrapping up now... so I will be on Mayo Connect a lot more in upcoming weeks. Thank you for thinking of me. The pharmacology testing can be done through Mayo Clinic, it also can be done by asking your doctor to do it through this website: https://oneome.com (The website has a lot of helpful information. This is the same company that Mayo used for my testing. I also I believe they are affiliate in some way to Mayo) The pharmacological testing can tell you how you metabolize many medication, but not all. The information you get from the testing helps doctors determine what meds are best for you. If you have been on a particular medicine for an extended period of time your body can build up a tolerance to them and they are not as effective. What has helped me in the past when this has happened is to take a medication holiday, so I would stop under the guidance of my physician and resume them after several months. This is something you should talk to your doctor about, you may need a different class of medication during the "med holiday". Also some meds cannot be stopped abruptly. This is Mayo Clinic's link on testing: http://mayoresearch.mayo.edu/center-for-individualized-medicine/drug-gene-testing.asp It is difficult when meds stop working effectively!!

Hi Kari, I'm doing a little bit better. ( That means the pain and bloating are less severe and I can sleep at night.) I've been taking Lyrica 50 mg. capsules, 3 X's a day along with 2 caps of Tylenol, 500mg each, 3 X's a day. Lyrica is for diabetic nerve pain and it has made a difference in how I'm feeling. I'm sorry to hear your meds are not working. New Mexico has legalized medical cannabis and I'm in the process of getting approval from the state authorization office. I'll keep you posted on this. As far as pharmacology testing goes, I'm not sure what you mean. I have however gotten blood tests to check my mineral and vitamin levels given all the drugs I take and being cautious about depleting my system. This I've gotten with my doctor's referrals to Tricore Testing. I would like to recommend the Cleveland Clinic in Ohio. Their Vascular Institute has been very involved in treating MALS patients for quite some time now. I plan to go up there in March to see Dr Rodriquez. There are no doctors or surgeons here in NM who know how to treat MALS patients. I need a treatment plan. I need to know what else can be done. Thank you Kari for your kindness and caring in keeping up with our community.
Lou D'Amico

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!!!

@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....