anyone feel more burning/numbness when sitting

Gee Aimee, forgive me for being outspoken but that is patently ridiculous! He needs to listen to YOU, as much as you need to listen to him, and if you have a concern regarding any sort of question, from the internet, a magazine or your next-door-neighbor, it's his job to listen and give you his BEST feedback, meaning he takes you seriously. Don't take me the wrong way, I do not know your doctor I certainly can't be his judge on your behalf, only you can do that for yourself. But you are dealing with enough already with this crazy hideous illness that has landed on you, that you should not have to deal with a doctor you have to walk on eggshells around. Forgive my speaking out like this Aimee, but as an interested bystander I do not care about him, and I do care about YOU. Now I will go chill out somewhere for a while. All my best kid, Hank

Thank you for your reply 🙂 x
I feel defeated. One moment things are tolerable and the next the pain in my left side has my pulse high and I just keep trying to push on for my kids. But it has changed me and my way of living. No answers makes it so hard. I cry a lot and wonder what happened to me? It was honestly a wake up in pain and never been the same. I don't know what to take for pain? I want to be gentle on my tummy (GI said I had inactive gastritis several months ago when testing started) so I'm not sure if these meds will flare it up?
I'm just lost and I hate saying that because I've always been strong, but this... this has stopped me dead in my tracks.
Aimee

brayimee @brayimee -- have you tried acupuncture? I mention this because my oncology team (which included a physician and his Phys. Asst., oncology nurses, oncology nutritionist and pharmacist who mixed my drugs) recommended several things to me, one of which was acupuncture. Although an acupuncturist was available thru the cancer clinic I went to, I have not tried it. My team indicated that for some people, it does bring relief, but they needed several sessions.

@brayimee Aimee, all of these symptoms hit you at once basically. So there is one unifying cause I am sure. It could be Guillain Barre, it could be something else. It sounds like you are at the point of desperation and I do not blame you for feeling that way. You are right, you are depressed and anxiety ridden for good reason, who wouldn't be?!!! I think if I were you I would contact Mayo and see what they say. You need a highly knowledgeable team working with you to figure this out. You need to understand what it is you are dealing with so you can stabilize at some kind of status quo, however good or bad it may be. Your husband and kids obviously love you very much and I am sure they want you to do whatever is the best option for you and them. Only you can decide what is best but from the limited information I have gleaned from you so far I believe it's time to call out the troops! I mean the Big Guns, aka the Mayo Clinic. My love and heart to you my dear, Hank

@jesfactsmon it started with severe left upper abdomen pain radiating to the back/flank and as time went on looking for answers, it was the entire left abdomen. It radiated to low back then down left leg and right glute. Occasionally, I feel the same burning in my right, flank/upper abdomen
Lots of odd pain and sensations with bowel/gas/urinary issues, but yes, it started out if no where. Somedays I can tolerate it, other days its maddening. The worst pain can be just along side the left navel, but images show aorta looks good. I'm just so speechless about it.
I gave my parents my medical log in Information to check blood work, urine and other tests. Hoping to get a colonoscopy, Gi work up too, but my Gi doctor has not been very kind.
My mom promises me it won't be forever as she too is just so dumbfounded and sad this has gone on so long. She has already said if I go to Mayo, her and my dad will take me.
Aimee x

Thank you for your reply 🙂 x
I feel defeated. One moment things are tolerable and the next the pain in my left side has my pulse high and I just keep trying to push on for my kids. But it has changed me and my way of living. No answers makes it so hard. I cry a lot and wonder what happened to me? It was honestly a wake up in pain and never been the same. I don't know what to take for pain? I want to be gentle on my tummy (GI said I had inactive gastritis several months ago when testing started) so I'm not sure if these meds will flare it up?
I'm just lost and I hate saying that because I've always been strong, but this... this has stopped me dead in my tracks.
Aimee

@brayimee Hello Aimee. I want to share with you that I also used to cry ALL the time when I didnt know what was wrong. For me it took a while of trouble shooting, wrong directions and head scratching. It is torture to ones soul. I understand and was where you are now. My husband sat beside me, one of those horrible painful days, and held me as I sobbed. This went on for months before he finally looked at me and said, "you need some help". Mentally speaking he meant. Me, the tough one, the one who held it all together for everyone, was failing to hold it together for myself. Never had I been faced with such defeat, frustration, fear and denial. I did 2 things for myself to help get through those difficult times. I began taking Cymbalta an antidepressant which is also used off label for nerve pain. I had refused it the year prior because I didnt believe in antidepressants. The next thing I did was seek help from a chronic pain psychologist. Again, something I never believed in, for myself, because I was always strong enough to handle what came my way. However, when we are faced with uncharted physical pain along side a full load of family responsibilities, a career, an active lifestyle and our lives come to a screeching halt...you'd best believe there will be denial, panic, frustration and unacceptance. The point is to please recognize that you may need help in the moment, be gentle on yourself and know that you deserve comfort. Perhaps pain medication, counseling, antidepressant. I tell you this because I did eventually get diagnosed and you will too. I was later able to get off the antidepressant. There may be mitigating factors for you. Maybe you haven't found the right Dr yet, the right team...it takes time. I firmly believe you are on the right path and will get to the bottom of it all. God, you remind me a lot of myself! Grass doesn't grow under feet like ours because we dont stand still long enough to let it. It is most hard to be stopped in your tracks and wake up one morning a changed person. My heart goes out to you and I wanted to remind you that you are not alone.
Well wishes for a peaceful day and evening.
Rachel

@brayimee Hello Aimee. I want to share with you that I also used to cry ALL the time when I didnt know what was wrong. For me it took a while of trouble shooting, wrong directions and head scratching. It is torture to ones soul. I understand and was where you are now. My husband sat beside me, one of those horrible painful days, and held me as I sobbed. This went on for months before he finally looked at me and said, "you need some help". Mentally speaking he meant. Me, the tough one, the one who held it all together for everyone, was failing to hold it together for myself. Never had I been faced with such defeat, frustration, fear and denial. I did 2 things for myself to help get through those difficult times. I began taking Cymbalta an antidepressant which is also used off label for nerve pain. I had refused it the year prior because I didnt believe in antidepressants. The next thing I did was seek help from a chronic pain psychologist. Again, something I never believed in, for myself, because I was always strong enough to handle what came my way. However, when we are faced with uncharted physical pain along side a full load of family responsibilities, a career, an active lifestyle and our lives come to a screeching halt...you'd best believe there will be denial, panic, frustration and unacceptance. The point is to please recognize that you may need help in the moment, be gentle on yourself and know that you deserve comfort. Perhaps pain medication, counseling, antidepressant. I tell you this because I did eventually get diagnosed and you will too. I was later able to get off the antidepressant. There may be mitigating factors for you. Maybe you haven't found the right Dr yet, the right team...it takes time. I firmly believe you are on the right path and will get to the bottom of it all. God, you remind me a lot of myself! Grass doesn't grow under feet like ours because we dont stand still long enough to let it. It is most hard to be stopped in your tracks and wake up one morning a changed person. My heart goes out to you and I wanted to remind you that you are not alone.
Well wishes for a peaceful day and evening.
Rachel

Okay, well you know my thoughts. Stay hopeful, there is no situation so desperate that there isn't hope. You know the old hackneyed expression "Its always darkest before the dawn"? Yeah, it is corny, but it's still so very true. I know from my own life when I was in my darkest moment of my life, a light appeared and a solution opened up in front of me. Do not get too down. Also, another thing I know to be true is that no matter how bad you feel in the here and now, you will get relief, it will come. Meanwhile, make a plan. Whatever it is, it's good to plan out what you are going to do and follow through. I am with you all the way, and everyone on Connect is with you Aimee. Stay in touch, we want to follow your journey with you, Hank