And I'm Back - Some New Symptoms : (

[margiebee]

I posted months ago saying that it seemed that my tachycardia had gone away and that I had gotten some promising test results back.

Well unfortunately things seemingly have started to go downhill again. About a month ago, I was struck pretty suddenly with an overwhelming bout of fatigue that still has not quite lifted. I was tested for anemia, mono, thyroid, etc, as fatigue was never really part of my POTS symptoms before.

Well the only test that came back as abnormal was a pretty severely low vitamin D level, the number was around 20 and I had already been taking supplements for it sporadically at my mother's suggestion. My PCP said this could be the culprit, so I've started taking a supplement daily, although I'm still waiting to see if this helps at all. But he also has been throwing around the idea of CFS/fibro being part of my problem. I definitely fit the bill for either of these things, but I've never given them much thought as they seem like even more of a "dead end" treatment-wise than POTS has been. But with this new fatigue issue, I'm basically looking for any answer as to why I'm feeling like I need to sleep 24/7. And I know that both of these things seem to have some ties to what I'm already diagnosed with (POTS). Has anyone else here dealt with a vitamin D issue (or Chronic Fatigue or Fibro)? Its so confusing trying to navigate all of this.

Also, on a more positive note I have successfully stopped taking the benzo med I was on, so that's a good thing and I know there were others attempting to do the same. It is possible!

[kayjay]

Yes yes yes (vitamin D, CFS and Fibro).

I was surprised when I had low d this past spring. I've never been one to avoid sunshine but I'm indoors almost all winter and I was using a lotion with sunscreen.

I am trying to get D as much as I can from the sun. Did he recommend a type of D supplement? They aren't all the same and I'm using a D3 gelcap.

It may take a few months but the D should make a big difference. My d levels were normal last time I had them checked and my pain is greatly reduced. I take also take provigil with some success. Hopefully d is the primary issue and you will notice a difference in a month or so. CFS has been a ongoing issue for me for the last several years.

[margiebee]

He has me taking a 2,000 IU D3 gelcap and we will retest in a couple of months. I'm trying to soak up sun as I can but Ohio is already going full speed into fall so there's not much opportunity now, haha. I was very surprised though, I had never heard of vitamin D being linked to fatigue, but afterwards my father came clean that he had the same issue a couple of years ago. So I am definitely hoping that's it. My POTS is also genetically linked on my father's side so I do wonder if its all connected in some way.

It seems that any time I get too comfortable I get a new symptom/issue that I've never had before, go figure.

[kayjay]

I have a friend with ms- and most ms patients get prescription D. I'm not sure why. I don't want you to loose hope that you will feel better with the D.

I am really careful about what I eat and the nutrients I get. Please be encouraged. I think a side effect of low D is a depressed mood. I'm a happy contented person by nature but I think I was more easily irritated when my D was low.

I think you are going to physically fell better and notice an improvement in mood also. It's hard to be optimistic when you are exhausted. Please just give yourself time to get your levels up. I think I was having some issues with fat soluble nutrients in general. I didn't notice that my skin was bad when my d was low, but I notice now my color is good and my skin feels really healthy.

[okiedokie123]

Yes, I also have Vitamin D deficiency. Mine was at 27 so I'm supplementing for that and going into the sun when I can. My doc put me at 10,000 IU a week lol

In regards to CFS, I think it is correlated to POTS because with POTS, there is cerebral hypoperfusion so you get brain fog, dizzy, tired, fatigued, want to go sleep (for some folks, you want to but you get insomnia instead), etc. If I'm not mistaken there's been studies about this so I really think it's all connected. My colleague was diagnosed with CFS, only to find out she had POTS instead so who knows.

[Guest Alex]

Hi Margiebee,

it's nice to hear from you, but I'm sorry you have reasons to revisit the forum

First of all congrats on weaning yourself off benzos. You may remember I had my own "battle" with klonopin and I can't believe it's been almost 9 months since I took one. So yes it's definitely possible!

The D vitamin deficiency has tons of consequences on someone's health - from fatigue to depression, muscle weakness and pain, headaches, BP issues, GI issues and so on. Some symptoms are more obvious than others though, so I'm glad to hear your doc caught it in time and is working with you towards fixing the problem. I was found deficient when I was diagnosed with POTS (my levels were in the 20's but I don't recall the exact numbers) and my doctor suggested 10,000 IU a day for several months. After talking about it and listening to my irrational fears of OD-ing we settled for 5,000 IU a day. I was on that dose for almost a year. Now I'm on a maintenance dose of 2,000 IU a day, but with winter approaching I usually up that to 3,000 IU a day.

Also, one thing I've learned is that it takes at least 3 months of supplementation for any vitamin/mineral deficiency to be corrected, and I'm not trying to give you any advice, but in my experience you might benefit from some higher daily intake.

Best of luck,

Alex

Edited September 30, 2013 by alex74alex

[Christy_D]

My son's vitamin D level, a couple of years ago, got down to 7. He could barely get out of bed. He takes a supplement daily(2000 IU) and he saw improvement quickly.

[YolaInBlue]

I am vit.D deficient (level is at 20 now, was at 17) and today my primary doctor prescribed 5,000 IU a day. I was on 3,000 IU for several months, but apparently it's not enough. During the summer I could only go out in the evening, because of heat intolerance. I live in Florida. If you have some sun exposure you might need less.

[margiebee]

Well I suppose its good/bad to hear that this is an equally common thing here as it is in the general population. I also went back to wearing my compression socks and that has helped slightly with the daytime fatigue, so I think it is a combination of factors going on, as usual

[Chaos]

There is a very big overlap between people with POTS and people with ME/CFS. I believe Vanderbilt did a study between their POTS patients and their POTS/CFS patients and basically found that most all of their patients fit CFS criteria as well. They said that maybe it was because they were a "tertiary care facility", meaning they only see the sickest patients but it was still an interesting study.

http://www.cfids-cab.org/MESA/ccpccd.pdf is a link to the current consensus diagnostic tool for getting a diagnosis of ME/CFS. There actually is a lot of exciting research going on in the field right now, so it's not quite the dead end diagnosis that everyone seems to think it is, and has been historically. While it's still all trial and error treatment, just like POTS, some people are making significant improvements or at least able to handle their disease better thru knowledge.

Ironically, if you have ME/CFS and POTS, and not just POTS, you may have to modify your activity more than with POTS as they are finding that increased exercise causes increased inflammatory cytokine release in ME/CFS patients which seems to be the cause of the post-exertional malaise they experience. So, if you exercise with ME/CFS, you may find that rather than feeling better, you'll be wiped out for several days. The gene expressions studies they are doing now with ME/CFS patients is fascinating.

[kayjay]

There is a very big overlap between people with POTS and people with ME/CFS. I believe Vanderbilt did a study between their POTS patients and their POTS/CFS patients and basically found that most all of their patients fit CFS criteria as well. They said that maybe it was because they were a "tertiary care facility", meaning they only see the sickest patients but it was still an interesting study.

http://www.cfids-cab.org/MESA/ccpccd.pdf is a link to the current consensus diagnostic tool for getting a diagnosis of ME/CFS. There actually is a lot of exciting research going on in the field right now, so it's not quite the dead end diagnosis that everyone seems to think it is, and has been historically. While it's still all trial and error treatment, just like POTS, some people are making significant improvements or at least able to handle their disease better thru knowledge.

Ironically, if you have ME/CFS and POTS, and not just POTS, you may have to modify your activity more than with POTS as they are finding that increased exercise causes increased inflammatory cytokine release in ME/CFS patients which seems to be the cause of the post-exertional malaise they experience. So, if you exercise with ME/CFS, you may find that rather than feeling better, you'll be wiped out for several days. The gene expressions studies they are doing now with ME/CFS patients is fascinating.

I have both but absolutly had POTS first. I'm curious if other have a similar experience? I believe that my CFS is a result of "pushing through" and not having a diagnosis. Perhaps those who are diagnosed with and treating their pots can avoid the CFS.

+1 on the exercise component. I do well with exercise if I keep it in check. Exercise is one area that I've learned "less" is more.

I highly recommend swimming for those who can. Initially I gave away my rollerblades, tennis gear and started restorative yoga.

Consistent exercise helps a bit with fatigue. Intense exercise is a no-no for me.

[spinner]

Its important that vitamin D, B complexes, magnesium and DHEA is mentioned here so people can check their levels. This seems to be a universal problem.

Ive been experimenting with DHEA for heat.

But in reading the literature many people are deficient in those two areas.

Sorry about your flare. Did anything outside your normal routine set it off?

Myself, i have to be very wary of diet, gluten, and MSG. They can set me off fast.

[spinner]

My son's vitamin D level, a couple of years ago, got down to 7. He could barely get out of bed. He takes a supplement daily(2000 IU) and he saw improvement quickly.

my ex mother in law was down to 6 one time.

I had asked her about it before i knew that number.

She was quite stubborn, but i tried to help her get on oxygen, but she refused.

[margiebee]

Actually Spinner I think one of my worst episodes recently was triggered by MSG. I've found that nutritional levels play a big role for me, and on the flip side so do dietary intolerances. I am in the process of switching to a vegan diet (and not junk-food vegan this time) to see if that helps my body heal quicker now.

I also have the typical CFS reaction to exercise, consistant but relatively light exercise is FANTASTIC for me, seems to have contributed to my success actually, but the "tough" workouts that others my age do are a no no. I'll be in bed with dizziness days after a workout if I push too hard, especially on cardio. I'd say this is my last remaining "big" issue actually, I can go most of the time feeling relatively normal but if I really over-exert myself, I'm back to not being able to walk.

[CarrieJessica]

They added a multivitamin to my IV therapy, everything was on the low end of average or low, my D was 23. I just added fibro to the list as was told if my VIT levels come up to the middle range of normal I may feel some relief from CFS and Fibro.

Fingers crossed

I am also not walking except for around the house, I use a power wheelchair for most things. I do feel better after 30 minutes of pedaling on my recumbent bike that I have in my bedroom, the motivation to start is just so hard :/

Carrie

[margiebee]

It seems promising that vitamin D will help for CFS and Fibro symptoms, at least I'm pretty hopeful. I've been reading articles about how its actually linked to fibro specifically, so I really hope this is a treatment that works for you as well as myself! I'm also trying an herb for my fatigue called Rhodiola and so far its actually worked pretty well for me personally.

[kayjay]

It seems promising that vitamin D will help for CFS and Fibro symptoms, at least I'm pretty hopeful. I've been reading articles about how its actually linked to fibro specifically, so I really hope this is a treatment that works for you as well as myself! I'm also trying an herb for my fatigue called Rhodiola and so far its actually worked pretty well for me personally.

I just had a conversation about this last night with the hubs. Since I've been paying attention to D and intentionally getting sun my pain has greatly reduced. I was on lyica than cymbalta for pain. Alex mentioned somewhere (not sure it if was this thread because I didn't re-read) that it takes a few months.

I realized my pain was lessened after 3-4 months. Hopefully it will happen more quickly for you.