Log in
Foggy's "Invisible Illness" Support
3,685 members477 posts

Don't know where to start... newbie needing advice please

Hello

I'm so glad I found this place. I'm having not just health issues but also employer issues... if anyone has any advice it would be so very much appreciated.

Brief overview:

Off work 7 months

Diagnosised osteomalacia (severe vit d deficiency)

Daily pain, all over aching, numbness feet and hands, hands shake, headaches, poor memory, no energy, easily fatigued etc.

Now told I have chronic fatigue probably caused whilst suffering from the vit d issues

Seeing CFS specialist next month

Issues are employer may or may not need job open

Not working means no money coming in so home at risk

Work have offered refer me medical retirement but I don't think 'bad' enough or enough evidence for this to be granted

Don't know why still struggle. Bloods show vit d levels back up but still feel awful

On outside I look fine, I do things because I have too, doesn't mean I'm not in pain doing them

Any claim benefit as turned down as hubby earns over limit or they take your last tax year earnings so I was working. Borrowing money off family just to pay mortgage.

Feel stressed with work and not really knowing what wrong

Anyone else have similar?

2 Replies
oldestnewest

The problem with diagnoses like CFS is they are murky. Employers and even many doctors may not think it's real. I don't have CFS, but I've had "mystery symptoms" for years, and only this year got a handle on what it is. Several specialists had pretty much written me off as a "crock". I suspected it was neurological, perhaps related to the fact that I have long-standing neuropathy in my feet, or perhaps affected by the fact that I had an esophagectomy for esophageal cancer 12 years ago, and they severed the vagus nerve. Whenever I asked about that, they told me "absolutely not. No way. Don't be ridiculous. they're not even remotely connected." And so on. I decided to take a back door approach, and asked for a referral to a neuropathy clinic at the nearest University Medical Center. I asked the neurologist the same set of questions, and she casually said "of course they're related. Autonomic neuropathy is very common in cases like yours". That blew my mind! However, she said that the condition should be worked up by a cardiologist, as it affects the heart and circulatory system. I had already BEEN to a cardiologist. He found nothing wrong with my heart, so he concluded I was a hypochondriac. So, it's all still up in the air, not resolved yet, but I'm closer to answers than I was.

About that low vitamin D thing; If you are low on one thing, you may be low on others. Have they checked any of your other nutrient levels? Most of the population is vitamin D deficient. They fortify whole milk, but many adults don't drink whole milk. I was low in that, and also low in vitamin B12, which can produce all sorts of symptoms. Neither of those cured my dysautonomia though, but some other things cleared up. The esophagectomy particularly put me at risk of B12 deficiency, so I suspected it was low. My family doctor humored me by testing it, but he said it was "normal". By that, he meant it was over 200, which is the official "deficiency" level. I researched it, and discovered the U.S. is the ONLY country that sets the bar that low. In Europe, a deficiency is defined as below 500. In Asia, it's set at 550. He reluctantly ordered the shots, but I had to pay for them out of pocket as Medicare wouldn't pay for them. Lately, I take the high dose sublingual tablets, and they actually got my levels higher than the shots did. Once I got my levels up, the mouth sores and the ocular migraines cleared up completely.

If you have anything that could cause malabsorption of vitamins, you will probably need higher doses than most, and you will need to have the levels monitored, if you can find a doctor who will cooperate. If you can find a doctor who believes in any of this, you may get some answers. Most older doctors were trained in an era that scoffed at these ideas. I recall one doctor I crossed paths with some years ago who said, "Nutrition is nothing but a fad, and has no place in REAL medicine!" You might get better results from a chiropractor or something.

P.S., osteomalacea due to vitamin D deficiency is, I think, what they used to call rickets. That "deficiency level" of 200 is what they determined was the minimum level needed to prevent outright symptomatic rickets in children, back in the 1920s. A lot more is know about it all now, but none of the advances in knowledge have changed the textbook definitions of "adequate" dosing.

Reply

No job or money is worth your health. God love you. Trust me not worth making yourself sick over, God will provide put your faith in him. I did that 7 years ago. When I was fired when on leave. My friend hired me right up now i am the Cfo of her company.

Reply

You may also like...