Fibromyalgia Support Group
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Been awhile since I've posted. I've been on and off regularly though. I do read some posts at times and think about posting, don't know why I don't...
ive struggled this past year with a couple additional issues than just fibro, which isn't that uncommon for most of you I guess. But for me this past year has been one of the biggest struggles of my life. Just about a year ago is when it all started. The additional issue with nausea on top of my food sensitivities has been the most difficult. My diet is so narrow, pretty much cereals and bread cottage cheese and yogurt. In the past few weeks I have added to my diet, I think I'm improving, then it comes back. I've had the scope (colonoscopy) done, been 10 years anyways, and "mild gastritis" is all they found. So why can't I eat? They then did the 4 hour nuclear test, following food through stomach and that was considered normal, and Doppler ultrasound and that was normal. So, they didn't say it, but I believe they think I'm seeking attention or it's all in my head. Don't know where to go with that.
My days anymore (past year) are simply sitting around the house, with a run to the store once in awhile. My wife wants me to go walk with her. I do that, and she wants to walk faster than my energy levels... I'm supposed to be the strong one (society stereotype of the man in the relationship) and I can't keep up. Then, every time, I flare the next day. Ultram at the doseage I'm at barely helps (although with out it I wouldn't have risked the walk at all). And I don't want more or a stronger Med either. If I flare, I did too much and I need to back off. So 30 minute walk at a slow pace and I flare, it's come to that. With my issues this past year I've lost stamina. Nausea every day on top of fibro, and fatigue so I've become very inactive. Although my issues that began a year ago have improved some I really struggle knowing how to regain stamina.
My wife is planning a week at the beach with her daughter since I don't want to leave the house. When I feel this way, as I have the past year, I don't want to ,eave home, or drive 8 hours to the beach and I can't eat out, so how would the week at th beach be anything but misery for me. If it were only me and my wife going,how would it be fun for her? I think I'm doing the right thing staying home, for me and her but I'm feeling very left out... She has accused me of not wanting to go, but that's not true. I want to go but for reasons already stated I'm sure I'd be a drag and make everyone miserable... how do I handle feeling as bad as I do and no show it, and act as if I'm fine.. I'm trying not to be resentful of her for daring to have fun while I'm miserable... After stating that, I feel guilty. How do I survive with these health issues and see her trying to live normal and have fun and not be jealous. I really have a mixture of emotions to navigate through. I really do want her to be happy. I just don't seem to have the tools to handle a lot of the experiences married life gives me.
Trying to not feel hopeless, and some days I succeed a bit, but most if the time, hopelessness wins. Thanks for reading my post.
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62F overcastYesterday Janice and have now spent a total of 15 hours cleaning out Mom's place, we called a junk removal company to pick up and they came in three hours.This is a hard lesson to learn. Dad always said life goes on and be careful what you leave behind. My sister and I will not leave behind for our family to deal with like we had to. Pictures without names, clothes no longer worn,...
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I swear, one more glitch in my life's matrix, I'm taking red pill and blue pilll and seeing what happens!
I guess I should feel "lucky" because my symptoms are not 365 days a year. In 2005 , it was for 8 months. Since then when it is triggered , it lasts about 2 months two to three times a year. I dont get much relief from the nausea meds often when my gastroparesis is active , but they do keep me from vomiting . I also get trapped in my house from the nausea and the weakness from not feeling well and from not being able to eat much .
I am currently in an active phase after being GI sick last weekend. Because eating food seems so unreachable the first several hours of a day , I drink a generic ensure . And until the active phase is over, the rest of my diet is yogurt. saltines, cottage cheese, toast, chicken noodle soup, and maybe a little turkey or plain noodles with a small amount of butter and Parmesan on a good day.
If you have not had a colonoscopy and an endoscopy in ten years , maybe you should consider having those done. Mild gastritis can feel much worse than mild. With an endoscopy they can take a biopsy and test for H Pylori among other things.
I agree with Leo or trying to see if you can get nutrients elsewhere besides the basic foods. I can't do gluten dairy or high doses of processed sugar which knocks out a lot of protein and fiber so I use a protein powder and eat a ton of apples. Going to try some juice soon although I share your acid issues as well so we'll see. OTC Zegrid has been a savior for me in that department. Idk if any of this will work for you but I hope something does. You're not alone in this and I'm so sorry you're going through it.
I ordered the licorice (long first name I can't remember) and it will be here tomorrow so will see if my sensitivities will let me use it. I'm hoping it will help. I do believe somehow my stomach and digestive track is damaged. I remember taking an aspirin with a Gatorade and no food last June. I had mild stomach issues prior to that. It seems, from my poor memory now, that that caused stomach burning, and it never went away.
Chronic stomach damage due to meds? Is that possible? Idk... on top of a number of other health issues with overlapping symptoms = chaos...
Again, thank you for taking the time to offer support and your experiences.
I always chew a DGL and rinse with just a mouthful of water. Enough to sort of "get it down".
Just talking about this on here, and having people taking me serious and validating my situation (unlike the highly paid gastroenterologist) has breathed hope back into me, where I wanted to just throw my hands up and quit... now I'm ready to begin to try again. Time will tell.
I'm going to spend a bit of time sorting through memory (dating back to 1983) of "low glowing coals smoldering" sensation.... Being a girl, I know mine is girl-related, but.... If any possibles come to mind, however bizarre, for you to throw at a doc, I'll holler!
Oh, and useful for you and your docs: Is that smoldering sensation .... (now point to a picture of a body with a belly button. Where is it relative to your belly button?) The navel is a huge "navigating" tool in diagnostics, Mom taught me, and it's true. Below or above? Left or right? Those and hipbones.
Healing hpoes to you!
That smoldering sensation comes and goes. Right now I have none at all. But by tonight, I will likely have experienced at least some. If I were to eat tomatoes, based on history, it would be there for days. All dependent on what I eat, as nearly as I can tell.
Ginger seems to help, so I bought some candied ginger a couple months ago. I ate quite a bit one evening (because I ac ually like it) and it appears that what helps in small amounts (ginger ale) harms in large doses. It took a week or so for that burn episode to go away.
It can be below belly button, or above. Or both. Not sure about left or right. I do get needle stab sensations at times and that can be in quite a range of places. Right of sternum, under lowest rib. There is about 2 places and it is the same place every time, it doesn't wander up and down. I've had it at my right side, and along a line running from belly button down towards right hip.
The problem is it is needle stabs sometimes approaching ice pick but not quite that bad. Since I'm not vomiting, and doubled over in pain, it must not be hat bad is how they seem to reason.
Eggs cause nausea. As opposed to tomatoes causing burn... I guess different foods cause different results. Seems I have learned more about myself than I realized
Looking back, I was at my very worst last fall. I'm probably 60% better than back then. So in reality I have made progress, quite a bit. But that last 40% that comes and goes, that I'm sill learning what triggers, still is quality of life ruining. Fear of what a food will do has kept me in that bland food mode, and who knows, bland food for months may be helping whatever is wrong, to heal. Idk...
My sister is an RN. She wants me to exaggerate to them. That's how you get it done she seems to think. I believe that's how I get labeled a hiprochondriac.