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!
As for marriage... I was married 2-3 years when I bought my copy of "Marriage for Dummies". Still own it, still use it. Been with my hubby since I was 20, known him since I was 18, and afte 25-plus years, still got no idea how to deal with marriage some days. Throw in illness vs health, and I want to chew brick and spit nails (to use my late gramps's phrase). He just takes stuff for granted till I wanna scream, "I can't, okay? I want to but my body said no! Mind over matter only goes so far, and then my mind wants the pain to freaking stop!" Got no advice on that one except letting you know you're not alone.
Don't despair, and as for resentment... Tell your wife flat out that she'd resnet *you* for ruinign her beach vacation, and she can see this as special mother-daughter time. (Don't ask me which chpater of Marriage for Dummies that one is, but somewhere in the section on communication there's "rephrasing" lessons.)
Gentle puma hugs,
Leo
For my gastro issues, why would juicing make me less nauseous than eating the foods in normal form? Before this all came on me, I used to drink a carrot juice and it is 100% carrot juice, no preservatives or anything. When my unknown nausea hit, the juice increased nausea and I also lost all desire for it. That was last summer. I could try it again, but I still have no appetite for it. I used to crave it and it was my treat for going grocery shopping. That's why I'm not sure juicing would help nausea.
But, maybe if I watered it down? Hmmm that might work. Tomatoes seem the worst. My stomach and lower feels like a bed of coals, low burning I guess in much of my digestive tract. That was watered down campbells vege soup. Watering down tomatoes won't work.
Thanks for your responses.
As for no energy and feeling left out. I get it. I don't have a whole lot either, but do what I can, when I can. On family vacation I tend to keep a day or 2 a week to just lie around and recoop. However, if you can't eat out that may be an issue without a kitchen.
I hope you get feeling better.
Susan
I've cut probably 90% wheat and all oats out already, wondering if wheat could be affecting me. If I said bread in my diet then I wasn't thinking because that would be rare. Corn cereal is mainly what I'm eating, but it is still processed. I've thought about going all unprocessed food, and maybe that's what I do need to do.
The gastroenterologist I saw acted like anything that could be wrong would be seen on the scope they did. I know that isn't right. I just hate going back to someone who, to me, clearly thinks this is all in my head. All my doctors work for the same hospital, or parent company and see all my records. It's like my records say "don't waste too much time, it's likely in his head". Maybe not, but it does seem that way. He would probably take me more serious if I were vomiting and losing weight. I'm not on either count. Since I'm not losing weight, I must be healthy right?
Juice will probably make you feel worse and more nauseous because it can be acidic. Plus with juice you are just ingesting sugar and all the fiber that helps to move it through your system is lost in the juicing process.
I have started doing meal replacement shakes for breakfast and that seems to set my system up for a better day of eating later. Just make sure you get a decent quality one, the super processed stuff will make you feel worse. I use the Garden of Life Raw Organic Meal and mix it with almond milk. The texture and taste aren't too bad either :) You can find it at most natural grocers or maybe even online somewhere.
Hope you find some relief soon! Take care!
Before I was Dx with fibro, one of the 1st symptoms that manifested was GI problems (then TMJ, then migraines and you know the rest). And I had gastroperesis from 2013-2015, man it was h*ll. I see my PCP today for some on going GI problems that have been making life miserable for me. I have complained to him 2x already before it got this bad and all he ever did was dish out probiotics for me as if that's the problem. It's not like I don't have a history of an effed up gut or anything. So I know what you mean about doctors not believing you :(.
About your possible food sensitivities.... perhaps you can ask your docs to run some food allergy tests on you like for gluten, etc. And I agree about asking for a ph test too. One thing I used to drink years ago was those ensure drinks. It didn't taste great, but it had some vits and protein. Maybe you can find something similar that suits you.
About walking... try only walking 5-10 minutes each time and not 30. My husband likes to invite me too, only to walk on ahead of me (what's the point?). I know exactly how you feel about choosing to stay home and feeling left out. Also when she says you don't "want to" go. My husband and I get into these arguments all the time because he accuses me of that. They really don't know how bad we want to do many things, but our body just isn't up to it. Next time she has the flu or a sprained ankle, ask her to go camping. When she says no, say why don't you want to? lol. Do you ever take your wife to your appts? Perhaps that could be some help. I also like Bobbii's idea.
I hope you get to the bottom of it and things start looking up for you soon. Hang in there!
It's terrible that we are all having such GI problems.
Susan
Susan
I am weird in that my mom let me be a vegetarian from age 3-4, and she awes always nutrition-conscious (as a nurse), so we avoided processed foods, canned foods, even frozen unless we froze it, that kinda thing. Seeds, nuts, rice, bulgur wheat (cracked) (Slavs eat it like oatmeal), fresh veg/fruit, herbs, but *not* "Ricearoni" or similar. Bread was homemade, etc., real old-fashioned. And I still got GI issues ---- for whcih thank bad DNA and my epilepsy meds ---- but the point is, don't be afraid to experiment, to ask, and to keep on hand whatever helps the symptoms. I'm fond of deglycerrhizinated licorice (sp), or DGL, tablets. They're horrible tasting. You have to chew them, but with regular use, they are shown to help heal inflamed stomach linings (Germany), and in Europe, some nations prescribe that instead of, say, Nexium.
Anyway, good luck:-)