Losing Hope

[nomorepain]

Hello,
I am hoping perhaps someone out there can help me.
I have been suffering for almost a year with unrelenting stabbing piercing pain in the metacarpal joints of my hands and feet. I do not have pain anywhere else. I was referred to a rheumatologist because the symptoms pointed to rheumatoid arthritis. Initially, while I waited to see specialist my GP did blood work. All of my blood work was fine except my Vitamin D was 11, very deficient. Got those numbers back to normal within months. Saw specialist and again the thought was RA due to symptoms. Blood work all came back totally normal. X-rays were normal. No inflammation. Doc thought it was sero-neg RA. Started prednisone which helped a bit. Then I started taking methotrexate which didn't help much and now Humira. The pain is barely any better. This has been going on almost a year and I have been on the RA drugs for about 6 months. The pain is absolutely unrelenting. Also a few months ago I started having pain in eye and flashes and floaters. I am now being treated with prednisone eye drops due to intermediate uveitis in both eyes. RA doc says it is probably not from RA because my blood work is fine. Now doc is saying if the meds don't kick in and make things significantly better he is sending me to a neurologist. The only other symptom I have is brain-fog, but that may be the RA drugs. I am currently taking methotrexate and Humira. Has anyone out there experienced anything close to what I describe? I am seriously losing my mind. My life is a shell of what it is due to this chronic pain. I literally spend hours crying some days. And like i said the pain is only in the metacarpal joints of my hands and feet. I feel like nobody believes me. Before the pain started, I was active and normal and never sick. I am in my late 40's and I can't imagine the rest of my life this way.

[jimmylegs]

hey there, if your d3 (what units, btw?) was low in part due to low magnesium (which is very common), then correcting the issue by only adding vit d3 could actually make the underlying magnesium problem worse (bc d3 needs mag to live and it will suck it out of your tissue if it has to). did they do serum magnesium and do you have those numbers on file? because that one could easily have slid under the 'normal' radar. generally you want to ensure that your levels are in the upper half of the so-called 'normal' range. it has been established that deficiency can in the bottom half of the serum mag range. it's not a problem with the serum mag test per se, it's an issue with how 'normal' is defined and interpreted.
i am a poster child for screwing up already low mag by adding only vit d3 to a low vit d situation. in my case i had horrible dysphagia not joint pain, but with a few hundred jobs for mag to do in the human body, plus a whole bunch of other factors your system is working into its internal triage, it's possible the issue manifested as joint pain for you.
on magnesium and pain:
http://www.jpsmjournal.com/article/S088 ... ract?cc=y=

fyi my worst brain fog turned out to be from zinc deficiency. this essential nutrient also does hundreds of things in the body, including working with d3 specifically in the development of bone. sorry rat study only on this one, to date not getting a ton of follow-up attention in human studies http://www.eje-online.org/content/111/2/285.short
did the docs run a zinc level and if so, do you have that one handy? it's another one with unfortunate normal range issues, and lots of variation in the definition of normal from one lab to the next.

the whole time i was growing up i experienced random intermittent stabbing pains and a variety of weird other signs and symptoms that i thought were just things that happened sometimes, so be it. since really starting to work on nutrition hard, a whole raft of things i never considered 'fixable' are no longer an issue. those stabbing pains are one of the things that delightfully reside only in the past for me yippee!!

hope there's something useful in all that

[ElliotB]

Sorry to hear you are not feeling well. I am also dealing with a lot of pain although lately I am doing better. Can I ask what kind of diet you are following? Do you exercise regularly? Do you take any supplements?

[Scott1]

Hi,

Can you check your tests and see if you were checked for mycoplasma and bartonella? Can you also check if your uric acid level was tested?

Regards,

[jimmylegs]

failing that at least if the zinc is in line it *should* be making conditions less favourable for pathogens AND keeping the krebs cycle working and hence keeping uric acid status where it should be man opportunistic infections and low uric acid ticked me off for so many yrs. glad both are a non issue now.

interesting:

Zinc-Altered Immune Function and Cytokine Production
jn.nutrition.org/content/130/5/1407S.full.pdf
"Zinc inhibits only superantigens binding to the MHC class-II b-chain, like Staphylococcus aureus enterotoxins (SE) A, D and E and the Mycoplasma arthritidis superantigen (Bernatchez et al. 1997, Fraser et al. 1992, Kim et al. 1994, Sundstro ̈ m et al. 1997). The interaction between these superantigens and the MHC-II b-chain is mediated by a zinc cluster involving amino acids from the superantigen and histidine-81 of the MHC-II b-chain. High-dose zinc might saturate both sites independently, thus preventing complex formation. The absence of a zinc-binding motif in superantigens that bind only to the MHC-II a-chain explains the lack of inhibition by excess zinc."

Low zinc status: a new risk factor for pneumonia in the elderly?
http://nutritionreviews.oxfordjournals. ... 0.abstract

Table 1 Pneumonia, antibiotic use, and overall mortality by serum zinc concentration.
Outcome measures...........Serum zinc group*
.....................................>70mg/dL (n=310)........<70mg/dL(n=110)

Incidence of pneumonia
(no. per person-year)..........0.25.............................0.46

abx prescriptions for
pneumonia (#/p-y).............0.26.............................0.48

Overall deaths (#/p-y).........0.12............................0.19

wonder how that table would have looked if they'd put the serum zn cutoff at something other than 'all outright deficient' vs 'some outright deficient'. i'd also be interested in seeing the comparison in se zn levels for those who survived this study, and those who did not.
i already know i generally suggest folks aim for 120 mg/dl, but just to unpack the bottom end into familiar units.. conversion on 70 x 0.153 works out to 10.71 umol/L. range at the local hospital here is 11.5-18.5... by no means the worst range i have seen at a hospital, but as ppl know i am a much bigger fan of the upper end. once i personally got zinc into the upper teens, cognitive issues cleared, uric acid shot up by close to 100 umol/L ie into the healthy optimal zone, all good things)

ok well that was into the weeds a bit but hopefully the main point comes through - you can optimize your body's mechanisms (including how zinc factors into bone health among others!) with close attention to those pesky essential nutrients

[nomorepain]

First, I wanted to thank all of you that have posted replies. I so appreciate the hep and I will research what you have asked of me.
My diet is an anti-inflammatory diet. I do not eat meat of any kind. I exercise as often as I can, but the pain makes it difficult. But I have always been a healthy weight. 5 foot 3 and 115 pounds.
I take a muti-vitamin along with calcium supplement/mag supplements and vit d along with omega 3.

[jimmylegs]

no probs while you are checking into results etc may i ask if you can share product and dosing info for your supplements, and how you time the d3 in relation to the others each day?

[Scott1]

Hi,

As a suggestion, try dropping the calcium supplement and see what happens. Mag is fine. Also, definitely check your uric acid (not urea) level. If you are too high that can cause some of these issues. Not an MS issue, as a rule.

So often infection can be an issue but often nobody looks and its hard to convince someone to do it. This roadmap may help. http://www.aafp.org/afp/2003/0701/p83.html

Regards

[ElliotB]

Just a few short years ago, I was in a similar position as you are now. I am doing much, much better now and my comments which follow are truly meant to aid in assisting you. There are a couple of sayings I wish to share with you, "The harder you work, the luckier you get" and "If its meant to be, its up to me". I hope you understand their meaning and that it is going to take a lot of hard work on your part to change things. There is no magic pill!



"My diet is an anti-inflammatory diet"

And what kind of diet are you following?



"I do not eat meat of any kind."

Why not? Certain meats and fishes are very, very healthy for you.



"I exercise as often as I can"

And how often is that? And what kind of exercise are you doing and for how long?


I have discovered many supplements that are considered beneficial in addition to those you are already taking. And am happy to share them with you if you are interested.


Do you have a lot of stress in your life?

[jimmylegs]

i somehow missed that bit about no meat of any kind. have to watch out in that case for b12, zinc at a minimum, likely also iron, omega 3s and so on unless being *extremely* careful to maximize absorption from less bioavailable alternatives, and regular testing of key nutrients without any interference from supplements. i used to be vegan and ended up with a variety of related deficiencies which caused permanent neurological damage. i used to be worse off and a transition to nutrient dense omni diet did improve some issues but after 10 years i seem to be stuck with some irreversible losses.

"Vegetarians sometimes require as much as 50% more of the RDA for zinc than non-vegetarians"
https://ods.od.nih.gov/factsheets/Zinc- ... fessional/
even if i had encountered this kind of messaging regularly while reading up on vegan nutrition, i don't recall it being the case and even where i did know i was not meeting daily minimums, the consequences weren't immediate enough and didn't seem serious enough. i definitely did not give RDA the credit it needed. it's easy to write it all off when you still feel fine and then wheels haven't come off yet :S