I think I could call this fibromyalgia

sandree

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I have been trying to recover from whatever happened to me about 15 years ago. Started with chronic hives and developed into various autoimmune type symptoms over the years, including pain that moves around my body, neurological symptoms like brain fog, anxiety and impaired handwriting when I flare up. I have not gotten a formal diagnosis though I have tried a few doctors without much help. I have done a lot more alternative stuff. Had to move out of our last house because of a mold problem but now that we are out of mold I still am flaring but not as badly.

Every once in a while I try something new. So I'm now seeing a nutritionist because I have a lot of food sensitivities. She did a LEAP/MRT test for food sensitivities and now I have to avoid 50 more foods (ugh). She also says I have bad bacteria in my gut, then prescribed a long list of supplements. I tried to follow instructions, but I seem to flare up (with inflammation) from most of the supplements, especially anything that is a binder or kills pathogens. The nutritionist says this is unusual, that her clients don't have that reaction or the neurological symptoms, so I'm feeling like I'm a bit crazy. But in pinned post on one of these forums, I saw a mention of reactions to herbs, supplements and medications listed.

I currently have a lot of pain in large joints, especially my hips. I can't walk for exercise at all. Tried again a few days ago, walking a tiny bit with my husband and flared up. I seem to flare up from everything - exercise, foods, stress, socializing.

Do you think it is worth pursuing a diagnosis or just continue to try to manage as I have been? My PCP knows I don't like prescription drugs (react badly to them), so she said going to a rheumatologist may not be helpful for me because they will prescribe medication. I am open to the idea of LDN though I just recently started reading about it and don't know where I would get that.

Anyway, it's nice to talk with some people who get what I've been going through for so many years. This current pain is really making it hard to function, so I need to find some way to manage this better.
 

sunkacola

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Hi there, and welcome. I am sorry you are having so much trouble. fibromyalgia is not something you should diagnose yourself, so while you think you could call it that, you really need to be fully tested for all the things it could be before deciding that it what it is.

In terms of managing it, if it is fibromyalgia, I have a post pinned at the top of the General forum that gives a lot of suggestions on that.

Getting some kind of exercise is imperative, even if it hurts. If walking is not your thing, try swimming or something else. The less you move your body the worse that will get, so don't let that happen.

I suspect that if you are avoiding 50 foods and you are still having bad issues, then you are avoiding a lot of them that really are not giving you any problems at all. You cannot tell what it a cause of something if you cut out 50 foods at once. The only way to tell if you are genuinely intolerant of a food is to cut only one out at a time and see if things improve. then go back to eating that one and cut out one other one. If you do a whole bunch of things at once how are you going to know which one is really helping? This is one thing I wrote about in my post. You have to be very methodical in your approach.

Just because one natural practitioner said you tested as being intolerant of all those foods doesn't mean you are. the only way to find out what works for you is to be your own scientist and your body your own laboratory and go at things slowly, and scientifically.

A rheumatologist may be helpful to you in terms of diagnosis. You don't have to take any medication you don't want to take just because some doctor wants you to. Medication is usually not the best way to manage fibromyalgia, if that is what you have. Have you been tested for ME, MS, Lupus, and all of the other diseases that cause symptoms similar to fibromyalgia? If not, this is something you will need to pursue.
 

sandree

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Thank you so much. I think I do need to pursue some kind of diagnosis and I have not been tested for any of those things. I agree that cutting out all of these foods and adding tons of supplements all at once is proving to be more harmful than helpful, as I can’t figure out which of these things is aggravating me.
 

sunkacola

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Let me know if you have any questions after you have read that post of mine. And let us know how it goes when you cut out all of those supplements and go back to eating a normal healthy diet. If that practitioner is the one who sold you all those supplements, I would be very suspicious of their motive in having you take them all!

Also, let us know how the testing goes.
 

JayCS

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I seem to flare up (with inflammation) from most of the supplements
Yup, same here: meds do IBS & skin, while herbs & supps do IBS. What do you mean by inflammation? Like sunkacola says: They're obviously not right for you. My first bouts of supps (vitamins, minerals, Q10) did nothing. Later ones caused IBS. Anything flaring I'd cut immediately. Maybe they are right in a minimal dose, just a speck, so you'd need them as powder. But that's advanced science.
I seem to flare up from everything - exercise, foods, stress, socializing.
Yup again. I need exercise & foods, so I keep stress & socializing down to a minimum, new exercise I start with very short stints.
avoid 50 more foods
I don't see a problem in avoiding most food altogether in the sense of an elimination diet for a time and then adding bit by bit to see what hurts. That's essentially what I did first to get my food triggers under control. And I do have to avoid something like 50 or more foods, which I found out myself, but supported by IBS-flaring experiences of others. But if you are avoiding them & it isn't even making a difference, then I agree with sunkacola. If I were avoiding anyway, then I'd just jump over to an elimination diet and if that doesn't make a difference after a week or two, I'd eat normally.
prescribed a long list of supplements
Oh dear...
her clients don't have that reaction or the neurological symptoms, so I'm feeling like I'm a bit crazy
She's obviously not the right therapist for you. You're right, she isn't.
Do you think it is worth pursuing a diagnosis or just continue to try to manage as I have been?
If your managing includes getting help here and elsewhere then that may do quite a bit, did for me. But I've been to 45+ docs & 15 physios to make sure it isn't anything else. They only helped a bit. But now I know (whether FM or not) it's down to my own symptom analysis, trigger & treatment hunt.
going to a rheumatologist may not be helpful for me because they will prescribe medication
I second sunkacola on that.
open to the idea of LDN
Might be yours some day, but I wouldn't start there, it's on the fringe.

Exact symptom pinpointing, analysis, tracking, description on our side can help good docs find or exclude everything they can "see", appts. all over the place, maybe 2nd opinions, if feasible. Minimizing triggers first, whether gut or body pain etc., i.e. a general elimination "diet" as regards stress/socializing could accelerate that.... Not all possible at the same time, so we need to prioritize, focus and continually adapt.... Hope you find good decisions about where to go and how to go about it...
 

sandree

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Thank you so much for taking the time to share your experience. I did make a break from the nutritionist and cut back on any supplements that I felt were aggravating. I don’t feel as flared up so it is clear they were not good for me. Digestive enzymes with HCl in particular as I started getting reflux which I never have. It is interesting that others may have similar reactions to supplements. I’m sticking to the food plan but slowly adding one food back in at a time, keeping track of reactions. I think that part of the treatment did have some positives for me. I’m starting to think that CFS may be my main issue with pain as second because post exertional malaise is my strongest and most consistent symptom. I will keep exploring. Thank you for helping me to sort out the nutritional treatment.
 

JayCS

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DX FIBRO
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02/2020
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... break from the nutritionist and cut back on any supplements that I felt were aggravating. I don’t feel as flared up so it is clear they were not good for me. Digestive enzymes with HCl in particular as I started getting reflux which I never have.... sticking to the food plan but slowly adding one food back in at a time, keeping track of reactions. I think that part of the treatment did have some positives for me. I’m starting to think that CFS may be my main issue with pain as second because post exertional malaise is my strongest and most consistent symptom. I will keep exploring. Thank you for helping me to sort out the nutritional treatment.
That all sounds like you're on a good path!

CFS vs. FM: Due to having gotten or being able to get most of my single pains down pretty much, and stiffness and more with GABA, I've been concentrating on sleep, doubling passiflora to 4x289mg seems to be helping. But what disables me most now (and all along too) is I spose also post-exertional malaise PEM, something like this is what limits me to about best 2x1h of "activity" per day or causes me to need a long rest afterwards if I do more without breaks. verywellhealth describes PEM as "extra fatigue, achiness, and cognitive dysfunction. In a severe case, PEM can bring on intense flu-like symptoms on top of extreme fatigue, pain, and brain fog strong enough that it's hard to even form a sentence". I'm not sure: my Ache is the worst part, I'd have energy if not for that, a few pains may develop due to it, and I do sometimes struggle more with sentences, but not that bad. "Flu-like" I used to characterize most by a feverish-feeling until I realized that this is caused by tiredness, so I need to sleep (or if nec. blend it over with cold shower/washing). But I spose "flu-like" apart from the ache is also a shaky "unwell" feeling - on my blog I track this overall feeling with usually 90%/1 meaning I usually feel 90% well (my wife roughly halves my numbers, i.e. that'd be 50% for others) and a pain of 1 ("of 7", because 7 means having to cry or moan loudly, my wife roughly doubles my numbers there). My wife sees it in my face (I don't) and says I sugercoat it - which is OK for me, that's my new normal. First thing I'd have to change if it weren't is not working the 10h/wk I manage at the moment any more...
CFS or FM? Gladly open to discussion. Interesting. But I don't actually care, since I've been successful focusing on single symptoms anyway.... But it does open up the focus more to things which have sometimes helped CFS, like NADH/NAD+...

I actually am considering the B3-coenzyme NADH (or NAD+) at the moment (aside of dose adjustments and 5-6 other old or new things), which has been found to help with the PEM of CFS - 2 small studies and anecdotal evidence... - that'd be enough for me, but it's not an easy one: It seems to prevent sfx if you start with 2,5mg of enteric-coated capsules (even tho some CFSers take 15-20mg), but these don't seem easy to get. You haven't done NADH by any chance? Of course if you've taken so many together, you probably won't know what's doing what....?
 

sandree

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Aug 22, 2021
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I have probably had NADH in some other combination supplement but have not tried it on its own. I’m mostly trying pacing my activities now along with very basic supplements. Also trying CBD oil very cautiously. I think it may help with sleep sometimes. I also have celiac and when I get glutened (which seems to happen when I eat out no matter how cautious I am), then the CBD doesn’t help with sleep. I try to parse out what is causing each symptom and for some reason that helps me psychologically but it gets confusing. Couldn’t get to sleep last night and had not overdone it with activity during the day and didn’t have a lot of pain. I finally decided it was linked to eating out on Saturday for my brother’s birthday. One thing that helps with that is Pepto Bismol. Took that and got to sleep so in that case gluten was probably the cause.
 

JayCS

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DX FIBRO
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I try to parse out what is causing each symptom and for some reason that helps me psychologically but it gets confusing.
Sounds you're way upfront there! :cool: And of course it's confusing. I've pinpointed 8 triggers for my left jaw pain, 30+ for sleeplessness....

The psychological help is I think self-efficacy, which gives self-confidence / self-assurance /self-esteem, then self-respect and self-assurance, leads to self-advocacy when we deal with others, is part of self-care, the self-love which we often forget when we love "our neighbours" and end up in self-sacrifice and self-neglect...
Ah @Badger's just pointed me to @sunkacola's self-encouragement... not sure how that fits here, but I am sure there's more selfs to add...
 
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