Don't beat yourself up over it. You don't deserve it. These illnesses are a huge challenge. Accepting where you're at and going from there and trying to make the best of the situation is about all you can do. It's about the hardest but one of the most critical things you can do to take care of yourself.
Your circumstances are not what they once were. Your new job now is to learn as many new techniques and tools for coping as you possibly can and put together a new set of tools. You want your toolbox to be as full as possible so that, at any given time, you can pull out the right tool for the current situation. It's a big challenge but there are lots of things out there that might help. We just have to find the right one for any given situation.
And we have to know that sometimes, the right tool is just staying in bed. Maybe it's doing stretches in bed or your favorite chair, sofa or recliner. Tools aren't always a hands-on item. Sometimes it's something as "simple" as splitting up your meals so it doesn't take (literally) so much energy to eat and also to keep your metabolism up. Whatever. Just gotta find what works for YOU.
I'd be hard-pressed to say what symptom was worse if I "had" to. The fatigue is just bone-deep; it's so thorough and reaches every cell of your body. It's like this bottomless pit. It invades your entire being. Very difficult to describe adequately and make others understand. And it does feel like part of you is missing somehow. At least to me. Sometimes the fatigue is such that the "simple" act of eating is too much. The physical act of eating will just feel like more than I could hope to DO; like I just don't have the energy to do it. To lift the fork or spoon to my mouth? Too much.
Sometimes it'll feel like simply rolling over in bed is the most difficult thing I could possibly do. It's this incredible act of sheer willpower that gets you to move. And then there's just not much left. And sometimes? Sometimes even sheer willpower isn't enough. Sometimes it'll feel like just getting more water from the kitchen is too much so I'll sit for hours with the same old water that gets hotter & hotter (I hate hot water) & yuckier & yuckier ... because it's just physically too much to move.
Or I'll just get starving-ass hungry ... for the same reason. It's too difficult to move. And yes. I am overweight but it isn't about that. The feeling hasn't increased or decreased according to my weight. It's the illness at work in my system.
NOT a good thing about the not eating thing. I try to keep some sort of food within reach because if I don't then my blood sugar gets screwed up & it gets worse. A spiraling mess. ugh. Thankfully it doesn't get that bad for me nearly as much as it used to because I've adapted. I've learned to work with it somewhat.
The fatigue is just very weird and the word "fatigue" is not really the right word to describe it but I know of no other word in the English or any other language that comes close. Very difficult to deal with. But ... here's the bottom line:
---> it is what it is.
---> You've just gotta go from here and know that things do NOT stay the same.
Two supplements that are supposed to help with fatigue:
- NADH
- Acetyl-L-Carnitine
Whatever kind you take, make sure it's a really good one; that you can tell a difference when you're using it and that it's as complete as possible (vitamins, minerals, amino acids, bioflavinoids, herbs, efas, etc.). My mom & dad take some sort of multi they get at Walmart; it's not as complete but they can tell some sort of difference when they take it. Of course, my mom takes 2x as much as it says to, soo... whatever I guess. I wouldn't necessarily recommend that because some vitamins/nutrients/etc. remain in the body and others are waste (water soluble). But... each to his own.
There's also a supplement called Gookinaid -- Hydralyte is it's name now I think -- that helps your body absorb nutrients properly (since our bodies are malfunctioning at a base level). It's an electrolyte mix you add to water; tastes good to me! It's supposedly the same makeup -- chemically -- as our bodies and that's what helps make the nutrients absorb into your system easier. You can get it at gookinaid.com or there's a mix you can put together yourself if you prefer. Other mixes are out there too. The key is to find one that works for you and replaces the electrolytes.
The Gookinaid does seem to help overall. It helps also when I feel like I'm gonna puke or for/during digestive... issues. It's more subtle than the other two supplements. However, if you consider how our bodies are malfunctioning and try to work with them on a cellular level, in terms of supplements/nutrients/etc. that you put in your body, it makes sense it'd help you (anyone; not just you!) feel better overall.
Another thing that really seems to help a lot of people is whey protein isolates such as ImuPlus. Strictly speaking, it's not really the same as the stuff bodybuilders use. It's whey protein but for us, the way you take them makes a big difference in how bioavailable they are to your body so it's kinda ticky. I've got a box of the stuff -- comes in little packets that you add to water -- and can't stand it. Even tried just adding the tiniest bit of water and chewing it up as I'd talked to some people and that's how they get it down. OY!
But, fwiw, time & again, for several years now, I've heard people tell of how it would be the number one thing they'd take if they could only take one supplement. Several top doctors recommend some form of it (Paul Cheney, maybe Teitelbaum; can't remember who all now).
I'm dx'd with both FM & CFS. Varying opinions/thoughts/etc. on whether they're different or the same or variations of each other. I believe they're different but only time will tell. That's a whole separate issue so I won't go into it here!
For me, the exercise intolerance is a major issue and it's not so straight-forward as ONLY exercise intolerance. It's more of a movement-intolerance issue. That is, when I move, my blood pressure, temps, pulse all go up and it's not long at all before I feel really, really bad. Various theories about why that happens in PWCs. How do you explain that to someone?
In the research, I haven't heard of the exercise-intolerance related specifically to FM yet but I do know that pacing yourself and being exceedingly careful about how you exercise (when, type, amount, etc., etc. - all those little details) if you have FM is an important point. I do know some people who have Fibromyaliga (only) have said there's exercise intolerance for them and I do believe them. I don't think it's the same though. I suspect it possibly has more to do with pacing and exercise strategy or their individual illness.. "experience." Our bodies are all different and we just have to learn what works for us and our own bodies.
But... I'm not a medical person so what the heck. I wouldn't begin to claim to know everything. Just tiny bits here & there. YMMV!!! The overlap between the illnesses is ... interesting ... anyway. And it HAS been really mucked up over the last 10 to 15 years or so.
Things change as they learn more. Never used to hear about pain related to CFS either but the last 2-5 years or so I do hear about pain in PWCs (persons with CFS/ME). Regardless, the level of fatigue is just tremendous. Makes just moving a real challenge. It can really feel like it's just more than we can bear. Because of what's going on in our bodies, from a base level, it's truly critical to listen to the symptoms.
Hang in there. I'm sure, like everything, it'll ebb & flow and if you have any doubt of that, keeping track of it (on paper) will prove to you what is going on in your body. You may not get better but if you're attentive you will get better & better at dealing with it.
What you'll find over time is that you CAN do it; you CAN bear it no matter what your head is telling you. You will know this because you will prove to yourself time and again that you can get through it. You just have to do what you can (in terms of using your tools) and hang on for the ride! LOL
Gentle hugs.
Lori
