Spending all day in bed & it's just getting worse

[crunchy_mommy]

I'm giving up on my doctor -- at least for now -- and trying to figure out what my next step could be. I can't afford more medical tests & can't stand to be told 'everything's normal' even one more time when I feel so horrendous.

I'm tired all the time. Not sleepy (in fact, I only need about 6-8 hours of sleep a day). It's my body, it's just not functioning, it's hard to move and hard to sustain activity, I constantly need to sit or lay down, and most days I spend close to 20 hours in bed (reading or watching TV or laptop, often while nursing). I cannot do any of the things I used to enjoy, I used to be very active & loved working out daily etc. The fatigue has been getting progressively worse over the last 4 years and now even more rapidly.

I've had tons & tons of bloodwork & nothing is outrageously off. My Vit. D & magnesium were pretty low, iron & B12 borderline low, so I'm taking supplements for all of those, as well as some diet/herbal stuff to improve thyroid & adrenal function as those were both borderline abnormal as well. I'd like to quit taking the herbal since it's not helping anyway. No lyme, normal RBC etc., somewhat high WBC, normal everything else... The supplements don't seem to be helping one bit, it's only been a month or two but if anything I'm just getting worse by the day.

Other symptoms:
-frequent headaches (not quite full-blown migraines but many similar features, when I get full migraines once every year or two I lose most of my vision & go numb on one side of my body)
-wandering pains, often in my lower back or stomach but sometimes just random, and wandering numbness/tingling
-nausea
-wake up feeling like I've been hit by a truck (headache & every bone & joint hurts)
-fast, erratic heart beat, and loud heart murmur
-dizziness/vision loss on standing, though this has actually subsided lately
-becoming increasingly allergic to more & more foods
-been hypoglycemic my whole life, seems a little worse lately but probably due to not eating often enough 'cause of DS...

I'm considering a total elimination diet to rule out any food issues, but I'm reluctant since I'm always starving (plus still nursing my 17mo). But if I go this route, I'd eat only rice for 2-3 days and see if I feel better, then slowly add in more foods.

Other option is to eliminate gluten completely. I did this once with great results (before getting preg with DS) & once again after DS was born with no results at all. Plus same issue as above, I'm always starving...

I feel like diet is the only thing I can control on my own (no doctor's help) but if anyone can think of anything else or has an idea what's going on with me or which direction I should go in, I seriously could use all the insight I can get... 4 years of utter exhaustion & constant pain with no diagnosis & no adequate treatment is really wearing on every lest bit of hope I have & I'm feeling increasingly depressed due to my inability to function.

[A&A]

I'm so sorry, mama. I see that you're vegan...........are you getting enough protein?

And a somewhat high WBC could indicate an infection.

[leafwood]

so sorry you are dealing with this, but wanted to add that in my experience, even 'borderline' thyroid lab results may indicate a problem and may warrant attention.

[KMK_Mama]

I have almost all of your symptoms, plus more (except my headache has been constant for 4 years) and have been diagnosed with a ton of stuff but nothing seems to help everything. I had low vit. D, low B 12, low iron, high estrogens, low progesterone, borderline hypothyroid, severely allergic to milk...and I have been told I might have fibromyalgia.

I was told about Chiari Malformation from another MDC mom and all my symptoms fit. I need to go back to the neuro.

Your symptoms could be a LOT of things. I was going to tell you to start on the paleo diet for your allergies but then I noticed you are vegan so that won't work.

I wonder why your WBC are high....

[crunchy_mommy]

Thanks for the support, I'm feeling so frustrated!!!!

Originally Posted by A&A

I'm so sorry, mama. I see that you're vegan...........are you getting enough protein?

Yeah I have always made a conscious effort to get a good amount of protein to keep my blood sugar in check.

Originally Posted by leafwood

so sorry you are dealing with this, but wanted to add that in my experience, even 'borderline' thyroid lab results may indicate a problem and may warrant attention.

My doctor has me eating 'thyroid foods' -- which of course ended up being almost exactly what I was eating previously, with the addition of a source of selenium. I think the one thing I've neglected is iodine (I use sea salt not iodized salt) & I've been reading that would affect thyroid so I'm wondering if I should add an iodide supplement?

Originally Posted by KMK_Mama

I have almost all of your symptoms, plus more (except my headache has been constant for 4 years) and have been diagnosed with a ton of stuff but nothing seems to help everything. I had low vit. D, low B 12, low iron, high estrogens, low progesterone, borderline hypothyroid, severely allergic to milk...and I have been told I might have fibromyalgia.

I was told about Chiari Malformation from another MDC mom and all my symptoms fit. I need to go back to the neuro.

Your symptoms could be a LOT of things. I was going to tell you to start on the paleo diet for your allergies but then I noticed you are vegan so that won't work.

I wonder why your WBC are high....

I'm sorry you're dealing with similar issues... I can't imagine a 4-year headache, I had a 3-month one once and I didn't even realize it was so bad until it finally went away one day... Lately I've been noticing my headaches caused/worsened because I'm clenching my jaw all night long -- no clue how to stop that....

I don't think I have Chiari Malformation... but you know, I have never seen a neurologist (surprising given other problems I've had in the past...) The dr. did a neurological exam & I guess I was fine, though I wonder how accurate it was because I was trying to hold/comfort my screaming toddler at the same time.

I wonder about my WBC too but no one else seems to care or be concerned. I was hospitalized overnight when pg with DS because my WBC was so high (they thought I had appendicitis but couldn't see clearly on the MRI cause there was something in the way or something???) I guess I just have a chronically high WBC????

I really don't know what to do next, my doctor's out of town now for a month or two so I couldn't even see him if I wanted to but I feel he really isn't grasping how severely this is affecting me anyway. I'm truly terrified I'm going to end up in a wheelchair or 100% bedridden if things continue to progress at this pace...

[earthmama369]

The classic "profile" of someone with fibromyalgia (since that was mentioned up-thread) is:

-TMJ (jaw pain)
-frequent headaches
-unusual and persistent muscle aches (and sometimes joint pain)
-IBS (digestive issues)
-11+ of 18 possible trigger points (also called tender points)
-painful menstrual cycles
-inability to reach deepest level of restorative sleep on a regular basis, insomnia

Those seem to be the core symptoms. A notable mention is that in addition to those symptoms, just about everyone with fibromyalgia has *completely normal* test results, making diagnosis difficult and time consuming. People often go for years without getting a diagnosis because nothing shows up on the tests. Blood tests, MRIs, nerve conduction tests, etc., all come back without any red flags. In many people with fibromyalgia, there's an event or trauma that triggers the initial big flare -- a car accident, the flu, something like that.

I received a diagnosis of fibromyalgia just this week, after more than a decade of significant symptoms and three years after my first muscle flare (brought on by the flu). It's one of those things that you just never think to connect the dots on until the symptoms get severe enough to significantly impact your life, and even then, because it's a diagnosis of exclusion, it can take time to get an answer. Hang in there. As impacted as you are right now, this is worth looking into, whatever it turns out to be. PM me if the fibro description is ringing a bell and I can send you some links for more information.

[crunchy_mommy]

Wow earthmama I'm glad you finally got a diagnosis after so long!!

My illness does seem to resemble fibromyalgia in some ways...

-TMJ (jaw pain) -- yes I have jaw pain but I notice I am clenching my jaw when I sleep so I think that's why
-frequent headaches -- yes
-unusual and persistent muscle aches (and sometimes joint pain) -- not so much joint pain but lots of muscle pains!
-IBS (digestive issues) -- yes
-11+ of 18 possible trigger points (also called tender points) -- I don't know what the points are so I'm not sure
-painful menstrual cycles -- yes
-inability to reach deepest level of restorative sleep on a regular basis, insomnia -- yes

Also I didn't have a triggering even though 3 months before onset I was very ill with a flu-like thing when I visited a 3rd world country, and I started a new job around the same time the symptoms appeared (also graduated college & got married a couple months after the illness started so that whole time period was kinda stressful!

Is there treatment for fibro?

I just ordered a high-dose B12 supplement & I'm hoping that along with my current supplements will at least help a little...

[wallabi]

since you have had great results with taking out the gluten in the past, taking it out now seems like a very very good plan. a lot of the things you mention go along with celiac disease or gluten intolerance. the fact that the GF diet worked once, and then didn`t work the second time might mean that you were missing a hidden bit of gluten - cross contamination in your kitchen or supplements, maybe?

I hear you on the always starving thing, but actually, for me the constant hunger goes away when I am GF and comes back when I accidentally eat something gluteney (viscious circle, that!).

the full out elimination diet could be a good idea, too, and yield quicker results as it rumor has it that quite a lot of celiacs and gluten intolerant people have/develop other food intolerances b/c of the damage to their intestines, so taking out whatever else might be irritating your system may let you heal faster.

and, a final thought in support of taking out the gluten asap - iirc, fibromyalgia is one of the conditions that is often offered as a diagnosis to undiagnosed celiacs. my grandmother, who, in retrospect we can all see probably had celiac disease, had a fibro dx for a while. cutting out the gluten while you look into the possibility of fibro or other diseases couldn`t hurt.

hope you feel better soon!

[meg-momto2]

your symptoms are very similar to mine when i was horribly sick this winter. i finally made the connection to gluten intolrance after 6+ months of constant pain and fatigue. at my worst i was having a hard time getting up to brush my teeth. do the elimination diet. make sure you are truly gluten free and look for cross contamination. it only took about a week for me to feel much better and by 3 weeks i felt amazing.

[crunchy_mommy]

Ughhh I hate being gluten free

I am really dragging my feet on this, but I guess it may be my next step. I want to try out the B12 first since that is easier... Gluten-free is tough because I don't have the energy to even cook... and if I eat gluten I can have pitas & hummus, or a PB sandwich, or something similarly easy when I *can't* cook.

The first time I went gluten-free I also went soy-free. I did feel a lot better but I got pregnant around the same time & within a few weeks was feeling horrible again. So I was never sure if the gluten-free effect was just short-lived (placebo effect?) or if pregnancy symptoms made things worse regardless. Then I started eating gluten again partway through my pregnancy, and by my 3rd trimester I felt so good (even eating gluten & being 7 months pg) so then I was really confused. I think I was 3-4 mos post-partum when I tried gluten-free again (and I was eating no or minimal soy at that time) and I didn't feel any better, but I was also waking up 20x a night with DS. There were too many factors. I know I wasn't getting ANY gluten but when it didn't seem to work after a couple weeks I just started eating gluten again (not a ton, maybe once a day if that). I feel so starving on gluten-free diets, I'm not sure why...

[Pattyla]

You sound like you have Lyme. I know you got a neg test but with Lyme that doesn't mean much. Starting with a flu is a major red flag for Lyme. Lots of people are diagnosed with fibro who actually have Lyme.

You need a Western blot test done by Igenex. I was tested by Quest and told my result was neg. Well looking into it my result could only mean 3 illnesses. I easilly could eliminate two of them and the remaining one was Lyme. I am waiting on my Igenex test. Next step is to test my children. Bot have mysterious health issues that never pan out. Both are still nursing and Lyme passes in bm and crosses the placenta. I have been very ill since feb but many of my symptoms have been there for years.

I have cleaned up my diet to the extreme and feel worse than I have ever felt. I'm now trying to decide how to proceed

[zmom2010]

why not try chiro

If you've ruled out everything else, and you are obviously on top of your nutrition, is there a chance you might see a chiropractor near you?

Chronic pain and fatique is a very common complaint that comes into our offices. (Disclaimer: I am a chiropractor, so, yes, I'm a bit biased)


Whatever you decide, I hope you feel better!

[crunchy_mama]

Originally Posted by wallabi

since you have had great results with taking out the gluten in the past, taking it out now seems like a very very good plan. a lot of the things you mention go along with celiac disease or gluten intolerance. the fact that the GF diet worked once, and then didn`t work the second time might mean that you were missing a hidden bit of gluten - cross contamination in your kitchen or supplements, maybe?

I hear you on the always starving thing, but actually, for me the constant hunger goes away when I am GF and comes back when I accidentally eat something gluteney (viscious circle, that!).

the full out elimination diet could be a good idea, too, and yield quicker results as it rumor has it that quite a lot of celiacs and gluten intolerant people have/develop other food intolerances b/c of the damage to their intestines, so taking out whatever else might be irritating your system may let you heal faster.

and, a final thought in support of taking out the gluten asap - iirc, fibromyalgia is one of the conditions that is often offered as a diagnosis to undiagnosed celiacs. my grandmother, who, in retrospect we can all see probably had celiac disease, had a fibro dx for a while. cutting out the gluten while you look into the possibility of fibro or other diseases couldn`t hurt.

hope you feel better soon!

Originally Posted by meg-momto2

your symptoms are very similar to mine when i was horribly sick this winter. i finally made the connection to gluten intolrance after 6+ months of constant pain and fatigue. at my worst i was having a hard time getting up to brush my teeth. do the elimination diet. make sure you are truly gluten free and look for cross contamination. it only took about a week for me to feel much better and by 3 weeks i felt amazing.

I would say you have been drawn to gf for a reason. I have been gluten free for almost 2 yrs now finally spurred to do it after a full on summer of gluten in which I was on the coach the whole summer- laying there in a state of haze and depression the whole time. It is a vicious cycle that you don't have the energy to cook but eating the gluten keeps the energy away. At first I say invest in whatever food you need around to get over the hump. I had blood sugar issues as well but going gf and lc has fixed that. All those auto-immune issues are interrelated as pp's stated. With all those deficiencies something is keeping you from absorbing nutrients. I certainly won't hurt you to avoid it and your health it is worth a try.

[lastrid]

What adrenal and thyroid tests did you get? If you showed up as "borderline" on conventional tests you have at least part of your answer right there. Those tests don't show anything until the person is in a severe disease state. There is a large area of gray between optimal function of the adrenals and thyroid and non-function. Your symptoms scream adrenals to me which would in turn affect your thyroid function and cause increasing food allergies. I probably would have been diagnosed with fibro had I gone to a doctor who diagnosed that instead of looking for genuine adrenal and thyroid malfunction. My muscle and joint pain drastically decreased and I can actually lie down on a hard surface since I started treatment. The fatigue has lifted considerably too. unless I forget to take my supps.

[JaneS]

Have you had full thyroid testing done or just tsh?

[crunchy_mommy]

Wow thanks for all the responses. I had multiple thyroid & adrenal tests (T3, T3 Free, T4, cortisol, etc. I don't know all the correct names but they were all blood draws). I have considered lyme despite the negative test but I've never gotten a tick bite, never mind the red rash... I do think going GF again could help if I can get just enough energy/motivation to stick to it for a good week or two. I just got my B12 supplement & I've taken it for 3 days. I think I'd like to give the B12 a few more days & if it doesn't seem to be working I think GF will be the next step... though I'm still wondering if a total elimination diet might be a faster route to ruling out things.

Chiropractor is another thing I was considering, zmom is that something any chiropractor could work with or would I need to find someone with particular experience/expertise? I also have to check if my insurance will cover it, money is starting to be an issue with all the diagnostic tests & supplements etc... My doctor is on vacation for a month or so and I'm kind of fed up with all the tests with no results. I guess I want to focus more on treatment than diagnostics now.

[A&A]

http://www.nytimes.com/2010/07/14/he...rovirus&st=cse

"According to the C.D.C., at least one million Americans are believed to have chronic fatigue syndrome, marked by disordered sleep, cognitive problems, headaches, joint pain and profound exhaustion."

[crunchy_mommy]

I had read a lot about XMRV a year or two ago... that's crazy that the study is being surpressed. I refuse to believe in "chronic fatigue syndrome" as an independent diagnosis -- if it truly does exist, I'm convinced it has a medical cause and possibly a specific treatment. It drives me crazy that doctors are now using CFS as their wastebasket diagnosis and grouping together people who are stressed & a little run-down with others who are severely limited in daily functioning or complelety disabled.

[ASusan]

pitas & hummus,

*Corn chips and hummus*

or a PB sandwich,

*PB on a rice cake*

I've been gluten-free for just over 2 years. I hear you. Last night I had the most vivid dream about eating chocolate and raspberry filled croissants.
(Perhaps because I recite Dr. Seuss' ABCs to DS to help him sleep: "Big D, Little D. What begins with D? David Donald Doo dreamed a dozen donuts and a duck-dog, too!")

Can you try acupuncture? I had a dx of lupus, took Western meds, still had lots of random symptoms, but all the blood and urine tests were normal (save the lupus factor in the blood), AND I had side effects from the meds. Acupuncture (and Chinese herbs) cleared up all the random symptoms. (which, from a TCM perspective, weren't random at all - they were all related to ...???...kidney yang deficiency?) Anyway, after 6 mos of weekly treatment, ALL the symptoms were gone, I had gotten pregnant twice, AND my bloodwork was totally normal (i.e., no evidence of lupus).

[JaneS]

Originally Posted by crunchy_mommy

I had read a lot about XMRV a year or two ago... that's crazy that the study is being surpressed. I refuse to believe in "chronic fatigue syndrome" as an independent diagnosis -- if it truly does exist, I'm convinced it has a medical cause and possibly a specific treatment. It drives me crazy that doctors are now using CFS as their wastebasket diagnosis and grouping together people who are stressed & a little run-down with others who are severely limited in daily functioning or complelety disabled.

Exactly!! Vitamin D, B12 and magnesium deficiencies can all cause fatigue. Also food allergies, Lyme, etc. I think there is always an underlying cause.

Just like an IBS dx which is also meaningless ... mainstream medicine refuses to acknowledge food allergies/intolerances and gut flora imbalance.