Just low vit d or CFS?

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Hi all,

This is my first poston this site and I would like to hear some thoughts as to what is going on.

I'm a 37 year old male who's problems started in September last year with unexplained dizzy spells. My doctor referred me to the specialist who suggested silent migraines, I've never had migraines.

In the meantime in December I started with a pain in my right rib and was rushed to A&E who decided it could be gallstones, so I had an ultrasound scan but all clear and no stones. During the ultrasound it was noted that I was bloated and referred to a gastroenterologist.

January this year I had severe nausea, diarreah and felt generally unwell for 3 weeks losing 5kg in weight and a further trip to A&E.

All this time since September my energy levels have been decreasing and fatigue increasing resulting in more and more sleep every day. I noticed severe mental confusion after a 5 minute walk!

In March my Gastroentrologist discovered a stomach ulcer during an endoscopy and I started a course of omeprazole whilst also suggesting I may have IBS-D. Additionally my vitamin D was found to be half of what it should be. I am 2 weeks into a 10 week course of 50000 iu D3 per week.

We are now in April and my energy levels are at an all time low, my fatigue is crippling and I just feel so ill. I can't think straight and I am now off work. If I take the dog for a 30 minute walk I spend the next day in bed with headache and fatigue! 

My calves, hamstrings and shoulder blade muscles hurt all the time and as of last week my doctor is referring me to be checked for Chronic Fatigue Syndrome.

Help anyone with insight or advice?!

Many Thanks

Ben

1 like, 9 replies

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9 Replies

  • Posted

    Hi Ben, 

    Sorry to hear you are feeling so wretched. 

    Firstly, lots of us have received diagnoses of chronic fatigue or fibromylagia, and some of us have taken a firm decision never again to accept a diagnosis of vague conditions like this, that have no established etiology, or more to the point, cure. 

    Many of us here are suffering with osteomalacia, the bone-softening result of chronically low vit D. It causes bone and joint pain all over (but very prominently in the ribcage, shoulders and hips), and together with the chronically low serum calcium levels that result, widespread muscle pain and weakness. Sound familiar?

    Have you been given a diagnosis of osteomalacia? This is the clinical result of vit D deficiency, but it seems that many docs (mine included) are not using this explicit term until asked 'Is this osteomalacia?' 

    Proton pump inhibitors such as omeprazole can cause serious malabsorption issues - consider asking your GP whether this might be the case for you and the knock on effects for your low vit D level. (I have stopped taking it for that reason, but I wouldn't recommend that to anyone else without medical advice.)

    The pain, fatigue and brain fog of vit D deficiency/osteomalacia do not resolve over night, unfortunately. I'm now 6 weeks in to treatment, and feeling frankly cr*p, although I do seem to have better days now in with the exhausted, sore bad ones. 

    Dr Michael Holick, a well respected expert on all things vitamin D, says that it can take up to a year, and perhaps longer, after beginning agressive vit D supplementation to be rid of most symptoms of osteomalacia. You can look him up online. A couple of his lectures are available on youTube and are really informative.

    I hope you find this useful, Ben. I can't offer you medical advice as I am not a medical professional, but I can share with you that I would be exceptionally cautious about accepting a diagnosis like Chronic Fatigue Syndrome. You can't be 'checked' for it, by the way - it's an endpoint diagnosis based on excluding everything else - which really depends how skilled your doctors are and how hard they are looking, doesn't it? I was personally railroaded into accepting a similar diagnosis of fibromyalgia and have been through 6 years of hell with untreated vit D deficiency osteomalacia.

    All best wishes. Hope you feel better eventually!

    P.S. I have a great little app (also recommended by Dr Holick) called D Minder, available for Android or iPhone devices, which helps you to track your additional vit D intake from sunlight - fully customisable for age, skin type, location and clothing, etc. I find it a useful way to keep topping up the D! 

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    • Posted

      Thanks Jaybelle,

      I'll check with my doctor about osteomalacia but a lot of what you said makes sense.

      I'm starting to get the feeling recovery may be a long slow process.

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    • Posted

      Bear in mind that GPs routinely testing for vitamin D status is a pretty new thing. They have been told to do it, but they are not necessarily up to speed on how the vit D related illnesses present, or just how incapacitated sufferers can be. I suspect that many, many illnesses previously called chronic fatigue syndrome, fibromyalgia and even polymyalgia rheumatica may eventually move under the umbrella of musculoskeletal conditions resulting from vit D deficiency. 

      All the best. 

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  • Posted

    I dont know your condition but, having gastro-related condition need to be closely monitored i.e. make sure you have regular bowel movement etc + add probiotics ( yogurt, kefir and organic veggies etc) to keep your intestinal flora healthy.  

    My sister had similar symptoms many years back.  On your next doctor visit, ask about H pylori as well.  She has been ultra vigilant about what she eats and is doing well now.  

    Good luck, Ben.

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    • Posted

      > Ben - aye, you didn't say whether or not you had been given a course of antibiotics re the ulcer... aren't they normally treated that way these days, since the discovery of the H. pylori infection/ulcer link?
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    • Posted

      Hi Jaybelle

      The doctor took biopsies during the endoscopy when the ulcer was discovered. No infection and I've never taken ibuprofen etc so ulcer is a bit of a mystery, probably brought on by stress of travelling to work with dizzy spells for 3+ months. Stool samples and bloods all clear apart from low vit d. Tested negative for celiac disease. All a bit odd, I've had perfect health for 36 years then bang happy birthday!

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  • Posted

    Hello Ben 

    so sorry that you are feeling so rubbish , but hang in there and don't give up .

    having read your comments I realised that I too lost so much weight last year ... This was before the severity of my pain increased and kept from my hips to almost every boney area . Think you forget some of your symptoms when you feel so under the weather for so long .

    please don't be fobbed off with inexperienced or insensitive GPs ? Diagnosis's.Like you I hit rock bottom physically before ending up having the correct blood tests etc 

    managing the pain and symptoms is the key so that you can feel more human again .

    i have been on Pred for a week now and the pain is easing (although does return on exertion, my impatience trying to run before I can walk !! )

    I so empathise with how you are feeling , as like you have experienced anything like this ever before !!!! 

    Do hope that you are able to access a good consultant for an assessment .

    take care .

    helene smile

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    • Posted

      Thanks Helene

      I hope your pain continues to ease and you feel better soon.

      I'm not a patient person either and sometimes I think this does more harm than good. I just want to get back to work and enjoying life again. I'm probably one of the few people who actually have a job they love and I miss it!!

      Ben

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    • Posted

      Think that's my problem !!! I am not patient at all .... 48 hours on pred and hips and shoulders feeling easier and able to move I thought Right lets get going ...... Big big mistake as I was back to square 1 ...

      never experienced such pain and discomfort like it , it's like my body has been taken over by someone else .

      so frustrating .

      I was hoping to go in to work today having a week on steroids but I think my optimism was a little extreme ..... As I feel rubbish sad

      hoping that you too feel a little better soon 

      please let me know how you get on ,

      helene 

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