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Vitamin D deficiency

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helenab
helenab

I've been unwell for on and off now for almost a year. I remember phoning off sick a couple of times before feeling tired and 'achy'. I thought I was just being lazy and this was psychosomatic. Then I started getting really ill when I developed a sudden onset of neck/shoulder pain which is still an on going problem now although the pain has turned into discomfort/ache which I have learned to manage doing exercise and stretches. I also feel sensitivity on other parts of my body (like invisible bruises.For 6 months I was coping with my neck/shoulder problem (symptoms are crawling/tingling sensation in the arm, sensitivity to touch like its bruised and cold feeling and dull ache on my shoulder blade).

Then gradually I started developing 'flu like symptoms' without cough or cold but with tiredness/fatigue and dizzy headache which are intermittent throughout the day, until 2 weeks later I started getting throbbing ache in my legs and eventually I couldn't sit all day without getting restless legs and crawling/tingling sensation in my legs which caused weakness in my legs and worse when I'm going upstairs - and my knees keeps clicking. I went to my doctors who prescribed me with naproxen. And told me that I had something called Reactive Arthritis, which i thought was a misdiagnosis. Overall I though that it could be viral related

This time I've been off work for a week when I started to feel better after a week on naproxen. I came back to work for a week feeling like i thought I recovered. Then boom 2 weeks later gradually the flu like symptom came back with extreme tiredness / fatigue and I've been in bed since. I'm still achy all the time regardless. I have no energy to do anything, even showering is a struggle. Ive been in bed most of the time, sometimes I try to go out with my husband for a few hours but I come back home absolutely exhausted and the soreness/headache i get is a different level. Most of the time I feel like my body is inflamed.

So i decided to get a second opinion and i went to see another GP who referred me for a blood test. A few days later, my results came through and I have Vitamin D deficiency. Everything else they tested seem fine.I have a better outlook now though after the diagnosis, apparently it will take months for the treatment to take effect. I guess now they found something they will stop investigating further (which worries me a little bit) but i guess its process of elimination so treat one thing at a time. Would be great to hear from others who also has this deficiency and whether the treatment was effective?

13 likes, 304 replies

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  • sue27903
    sue27903 helenab

    Posted

    I was diagnosed with vitamin d deficiency a month ago and was given a daily dosage to take.  I thought I would have started to feel better by now but not so.  Some days are worse than others admittedly but today is one of the very bad days!  I was interested to read about your symptoms as I was starting to think there was something else wrong with me but after reading some of the replies to you I see that the way I am feeling is normal, just wish it would all go away.
    • Gem1384
      Gem1384 sue27903

      Posted

      Hi Sue,

      Would you mind sharing with me what pains you are experiencing?

      I am vitamin d deficient. I have been on high dose therapy for 2 months which I have 1 week left of.

      My symptoms were fatigue and bone/muscle pain. This was mainly on my shoulder blades, shoulder tips, ribs, sterum, collar bone, boney bits in my wrist, my thighs and recently my knees.

      I am worrying it could be something more than just vitamin d deficency.

      My calcium levels have returned to normal.

    • ptolemy
      ptolemy Gem1384

      Posted

      Gem1384 I had similar problems and was vit D deficient, it turned out I also have PMR, you could check PMR on Google if you are interested.
    • Jaybelle
      Jaybelle sue27903

      Posted

      Me too, Sue. sad Very unpredictable fatigue after 6 weeks of treatment, and pain is worse. I have read that it can get worse before it gets better, perhaps because of rapid remineralisation of the soft bone ends, I'm not sure. Comforting to know that older hands have been through the same thing. I think we've got a longish haul ahead of us. Let's hope it's a very sunny Spring and Summer this year!
  • derek1979
    derek1979 helenab

    Posted

    i have had a lot of pain for years now it all started when i was 6 and my ankle got broken all i did was get out of bed then felt pain after a few seconds of standing up i was told by a doctor it was sprained and ended up walking on it for 2 weeks to find out it was broken i was sent between 2 local hospitals several times before they plastered it but it was set in the wrong place then when i was 10 i got severe pain in my leg then when i was 18 i ended up with varicose veins and now im 36 and have a diagnoses of vitamin d deficiency in which i took vitamin d for 3 months just to have another blood test to be told its worser than before and i know there is no way that when i was 6 my ankle could not just break just by standing on it there has to be a reason for it breaking and it could only be week bones but does not explain why when i was in school playing football and rugby why i never broke anymore bones i have tried to deal with the pain but does not work im in absolute agony with it and cant even sleep i even pass out due to pain and im mainly bed bound if i go out i can only do so for no more than 4 hours but will be bed bound in agony for days and end up crying in pain im no closer to finding out if i have any conditions that are linked to vitamin d deficiency but the pain is so intense and with my other symptoms i must have something more than the vitamin d deficiency cause that alone cant be what is causing the pain and for an example it feels that bad i could easy cut my arms and legs off for it to go away even though i would not do that but the worse thing for me is high blood pressure and im under a lot of stress and depression does not help as well as well as not having a diagnosis into what else is going on its stressing me out to the point i feel like i will end up in hospital cause its not getting any better im unable to cope with the pain i hope someday soon i get a full diagnosis so i can get the right treatment for it so it can make my life a bit better cause i have had enough of being bed bound  
    • Farts4free
      Farts4free derek1979

      Posted

      Your bone issues sound like a combination of bone defficiencies mixed with bad care of your ankle as a young lad!!! change doctors, re evaluate the brakage!!! re-break & set if needed!!! for god sake!!! dont live in bed if there is a chance you dont need to!!! now gogogogo, and be courageous!!! this is YOUR LIFE!! you need to put your foot in the door (no pun intended)
  • gillian09815
    gillian09815 helenab

    Posted

    I can't believe what I have read above. I feel exactly the same and at the moment am awaiting results of blood tests and x-ray. I'm just hoping a diagnosis can be found as have been trying to manage symptoms for over four years.  Gillian Bradley  
  • fatimah96423
    fatimah96423 helenab

    Edited

    Hi, thanks for posting this.. my symptoms was exactly like yours except I even had numbness on my left side of my face. I was running back and forth to ER, they have done every possible test on me and everything always come back normal.

    My Dr. Told me that my thyroid seemed to be enlarged and ran blood test and it came back normal so she referred me to endocrinologist blood and sonogram test cam back normal on my thyroid, however she told me that my vitamind D was low it was at 18. My primary Dr. put me on 50k units a week but had to change it cause I thought the pills had gelatin in them whivh I can't take. so she placed me on 5k units daily, but I just found out that the 50k pills didn't have gelatin so I will be letting her know do she can switch my prescription. I am so ready for these symptoms to go away. I really feel bad for my kids because I never want to do anything.

    please let me know on your progress.

    thanks for sharing

    • Jaybelle
      Jaybelle fatimah96423

      Posted

      How funny - I also have a numb patch on the left side of my face. It never ocurred to me that it could be part of the vit D deficiency/osteomalacia. Also looking forward to wanting to do things again! Keep strong, wishing you all the best. 
    • frankiefoo
      frankiefoo Jaybelle

      Posted

      The numbness on the left side of face... I have that too!

      Sorry. How rude of me barging in like this.

      I have very low vitamin D levels - 5 - and am in absolute agony all the time, so much so, I'm unable to sleep, walk or even stand. I lie down most of the time as sitting is most painful and very uncomfortable too. Standing is out of the question.

      I get dizzy spells and have fainted many times. My iron levels are also low as is my blood count. Currently waiting for a referral to see a rheumatologist and to have an iron infusion. There seems to be very little help from the NHS on vitamin D deficiency and my deficiency had been noted from December 2014, but without treatment and my consultant (was hospitalised for a flare-up of Crohn's disease in Dec and May) told me my levels were normal. They were non-existent!

      I also have severe foot pain. Most days I can't get out of bed or walk at all.

      I'm so glad to have come across this forum but so sad to see so many others suffering too. 

    • lizzyluv
      lizzyluv frankiefoo

      Posted

      Hey Frankiefoo

      Sorry to hear you are on the same boat as a lot of us.

      what type of vitamin D are you taking? I've been battling with vit D and Anemia for a year so I have a few tips.

      Best vitamin D you can take is in liquid form. Put a couple of drops under your tongue and based on my experience this will yield the best results. I took high doses of vitamin D weekly then every day and barely saw an increase, then bought liquid vit D and my level started rising.

      Regarding iron, I wasn't able to do infusions due to the side effects but that is definitely one of the most effective ways to bring your iron up. I had great success with pill form, in specific "blood builder" that has vit C and vit B to aid iron absorbtion. However silly me, once I started feeling better I wasn't consistent with taking them and my levels lowered again and I'm back to suffering with headaches, dizzy spells, etc until I get my levels up again. It sucks and I feel your pain

    • frankiefoo
      frankiefoo lizzyluv

      Posted

      Hello lizzyluv.

      Many thanks for your advice regarding liquid form of vitamin D as opposed to the tablets. I've ordered some now am shall start taking it instead of the capsules which my GP prescribed - Fultium D-3 800 IU... which aren't vegan (I am) and contain a banned carcinogen (I'm funny about stuff like that). I'm also going to take a much higher dose than the one my GP recommended - he said to take 2 (1,600 IU) a day. My body's been low on iron for almost 3 decades. It was detected when I was pregnant with my first child (only had the two) and I started tablet form of iron and took them for a few years, to no improvement. A locum doctor decided to do some tests and found I had a blood disorder - Thalassaemia Beta. I was on higher dose iron tablets until I was diagnosed with Crohn's about 10 years ago, and then with the help of a Haematologist, began having iron infusions weekly, which improved my weakness, breathlessness and gave me some energy... for a while. The Crohn's depletes so many nutrients, so was diagnosed with Chronic Fatigue and then Fibromyalgia but I think I was already deficient in Vitamin D, but never tested for it until I was hospitalised in December last year and my levels were low (just says "vitamin deficiency" on my records. Nothing was done about it. I was sent home after consultant put me on mild steroids (I refused to take Prednisolone as it caused so many side-effects in the past). Follow-up appointment was over 4 months after my hospital stay, which by then I was going to the toilet up to 40 times a day and night and the consultant just said my vitamin D levels were normal as was everything else (?) but would do a colonoscopy... in a few months! I ended up in an ambulance a few weeks later and the first consultant/surgeon wanted to remove my colon - it was that inflamed and I'd been bleeding for weeks. Tests showed I had no vitamin D in my body, no iron (minus one count) and low levels of Potassium, Magnesium, Phosphates... the lot, including low blood levels. So I was topped up with them all except for vitamin D and iron, which came later, towards the end of stay there and only small doses. IV steroids began and I was sent home after they started me on a mild chemo drug... to save my colon. I stopped having the mild chemo because of severe side=effects and no "closely monitoring" me as promised. Finished the 8 week course of steroids which gave me so many horrible side-effects, but I persisted with them. No follow-up appointment (again) so I complained. Refused to see a consultant who put me on the steroids and chemo drug, and saw another. That was last week. 3 months after my hospital stay and so many problems in between.

      My main concern was the pain I'm in and low vitamin D levels (were 5nmol in May but steroids and lack of sunshine have depleted them further I'm certain). Also had a DEXA scan which showed low bone density. So with all this, I demanded to see my GP, then another and here is where I'm now at. Prescribed vitamin D which I can't take... I asked for vegan ones but didn't get them so am having to buy my own vitamin D. Was prescribed liquid iron instead of tablets as they irritated my Crohn's in the past, until the hospital can arrange an iron infusion - it's been 5 weeks that I've been waiting for an iron infusion now...

      I can't take the liquid iron as it's upset my stomach... going to the toilet 10-15 times a day and really bad stomach pains and cramps! Am ringing the doctor's surgery later to beg them to chase-up my iron infusion as while I was taking the steroids and still am... had 6 periods in 2 months and am on my period again now (so 7 times in less than 3 months) and I have heavy, painful periods!!

      I finally fell asleep at 5:20 am and woke up at 10am. Am exhausted, in agony and feel so down all the time.

      I'm sorry the iron infusions weren't right for you, but glad you found the pill form worked. Keep taking the iron tablets and avoid drinking tea (at least for the first hours after ingesting them) as that too depletes the body of iron. Also only take them with a meal... as with every medication and supplement. 

      I hope you're feeling much better too, as goes for everyone else on here. x

       

    • Jaybelle
      Jaybelle frankiefoo

      Posted

      Not rude at all. This is one of the few places people can come to talk about the severity of vitamin D deficiency symptoms - an issue the NHS seems a bit slow to catch up with. I too am shortly to do battle once again with the GP in hope of securing a rheumatology appointment as I have lost so much mobility in my hips, knees and feet. Bah. 

      Take care. Hope the rheumatology appointment sheds some light. All the best, now. 

      :-)

    • frankiefoo
      frankiefoo Jaybelle

      Posted

      Hello Jaybelle and thank you for your input.

      I hope you get a Rheumatology appointment soon and demand a DEXA scan (bone density) for your problems (hips, knees and feet). as it doesn't sound good. 

      Rheumatology appointment happening sometime around 14 weeks time - that's the soonest they can see me. Meanwhile I'm experimenting with how high a dose of vitamin D I can take and tolerate each day. Am hoping to go up to 50,000IU a day because I'm severely deficient.

      Still no sign of an iron infusion. Been waiting for that for months now!

      The NHS are such a disgrace. If I could afford private treatment I wouldn't go anywhere near the NHS. Sadly I'm unable to work and on DLA - Lowest Rate Mobility Component = £21.80 a week plus ESA and have to procure my own vegan Vitamin D which are costing me £39 a month. How disgusting. 

      I'm just too appauled by NHService. ARGH!

    • frankiefoo
      frankiefoo

      Posted

      What am I supposed to do until then, eh? I can't sit, stand, walk, lie down or anything... I'm in absolute agony and have no energy at all.

      It takes me hours to do a simple thing like type a few words on my laptop.

      Surely a referral to a specialist at this stage is urgent. I have very low bone mass, very low Vit D levels and am experiencing so much pain. 

      An appointment in 14 weeks or so is going to be useless, especially if I raise my levels... to which they'll just say I'm cured. LOL

      Vitamin D deficiency is at an all time high with cases of Rickets increasing and doctors treating it with vitamin D supplements. But they are failing the adult population so much more by:

       

      1. Not testing. They say Vitamin D tests are expensive. BiG fat LIE! Costs the NHS only £17 for the blood test (£150 to have it done privately).

      2. Not treating the deficiency which then becomes severe.

      Severe dificiency causes OSTEOMALACIA - adult Rickets.Severe deficiency causes cancer. Severe deficiency causes many, many illnesses.

      3. Not informing us. The council need to get involved. Pamphlets are needed. Information is knowledge.

      They treat the most pathetic of ailments, yet something as important and life-saving as a deficiency in the most essential vitamin is just ignored. Why? Because with a severe deficiency you're going to stay ill. Not treating it will keep you ill... compromising your immune system,

      raising the risk of cancer,

      But if you get cancer, then they'll check your levels. 

      It's only ever about the £££

    • Jaybelle
      Jaybelle frankiefoo

      Posted

      Don't worry, you can get appalling treatment (or lack of it) privately too - it just costs more. I was 'diagnosed' with fibromyalgia about six years ago by a 'top' consultant rheumatologist. Told it was incurable and the best I could hope for was to 'manage' it. He was very happy to charge me an arm and a leg for repeated injections into 'trigger points' but failed to do any blood work that might have flagged vitamin D deficiency and what was in fact osteomalacia. Live and learn! 

      Do you mean 5,000 IU/day, by the way? 50,000/day seems a pretty enormous dose! 

    • frankiefoo
      frankiefoo Jaybelle

      Posted

      I too was diagnosed with Fibromyalgia. I refused to accept the diagnosis as I am anaemic and at the time was deficient in vitain B12 (forgot to ask to check vitamin D). It still crops up... Dr said my current pains and lack of energy was Fibro, and I told him where to go! 

      I do mean 50 thousand International Units, not 5 thousand. My levels were 5nmol/litre - that was in May after a high dose of vitamin D capsules (20,000) during my hospital stay for a flare-up of Crohn's. Since then, I've been on steroids and tried Methtrexate for one week which floored me and gave me horrible side-effects (my tongue swelled up and had lumps on it!). Am now medication free again and wish to stay so.  

    • frankiefoo
      frankiefoo

      Posted

      50,000 IU a week.

      Seems like a lot, but keep in mind that your body can produce 10,000 to 25,000 IUs of vitamin D after just a little bit of full body sun exposure. Sadly we know not what the sun is here in the UK. LOL

    • Joanne2389
      Joanne2389 Jaybelle

      Edited

      Please DON'T GIVE UP! It took 6-7 months to really feel an improvement after taking high doses of vitamin D.I had a blood test every 2 months in order to see if my levels dropped under 50 ng /ml or went above 80 ng/ml ( I started at 16ng/ml). I took 6000 Ui in the beginning and then 4000 daily for maintanance.

      I had pains all over my body and muscle twitching which gradually developed in 5 years. Now, after 9 months I am 75% better  and my vitamin D levels are constant at 70 ng/ml ( I even have a notebook were I wrote down my pain level daily and I noticed the gradual improvement). I take 4000 UI daily to maintain my Vitamin D levels. If I take 2000 UI daily my levels drop (-20 ng/ml) in only one month! We need a  high dosage to maintain the levels in the normal range and constant blood tests to see how we absorb this vitamin.

      I even had vision changes (I saw colours with my eyes closed, visual snow and increased after images and floaters) and tinnitus and everything improved by 75 % (except the floaters which never go away), but dont forget: It took 7 months to really see great improvement and each month I am improving!

      I felt like fainting and this symptom is gone,too. The pain was unbereable, I thought I was going to die and the doctors couldn't find anything! I had every test under the sun, even Lyme disease tests and nothing was found. And this miracle vitamin simply improved it all and I hope to be 100% one day. But 75 % is enough to lead a normal life. The pain is in the background and i barely notice it. now .

      I DO believe that most cases of fibromyalgia are misdiagnosed and they are actually Vitamin D deficiency cases. I also had symptoms like muscle twitching, vibration sensation all over my body, burning and stinging sensation which are mostly gone. My nervous system was falling apart.My initial  VItamin D level  9 months ago was 16 ng/ml, so I can't say I had osteomalacia ( it wasn't low enough to cause damage to the bones). I think it is something that affects the nervous system rather than the bones and it isn't well understood by the medical community. I think Vitamin D directly affects the brain.

      PLEASE DON"T GIVE UP! IT really takes 6-7 months to really feel better. If you give up, the Vitamin D levels drop really fast and you will never know that Vitamin D  deficiency was actually the real cause of your strange and horrible symptoms!

      It really gave my life back. I wish  you all the best.

      I also want to let you know that I did't take any kind of medication during this Vitamin D treatment or before, even though the doctors wanted to prescribe me antidepressants for the pain, I refused to take them.

       

    • Joanne2389
      Joanne2389

      Posted

      Everyone please feel free to copy and paste my testimony to other people on fibromyalgia forums! Some of them know that vitamin D helps but perhaps they didn't have enough patience to see the results and gave up. It might be a life saver for them!
    • Jaybelle
      Jaybelle Joanne2389

      Posted

      Yes, maybe 7's the charm - I finally began to turn the corner after 7 months of treatment. I'm now trying to build back some muscle mass to deal with the weakness, which is difficult with the fatigue, but the pain is really substantially less! Thank you for contributing here - it's really important for people wondering if they've lost the plot and will ever be right again to hear some good news and have some hope about this condition.  
    • andrew64988
      andrew64988 Jaybelle

      Posted

      Hi

      Has anybody noticed with being vit D deficient to having low thyroid and/ or changes to their skin as part of the itchiness to the body?

      Andrew

    • dhode
      dhode Joanne2389

      Posted

      How long did it take until you started to see the first improvements? Were you able to reach a point of turnaround in a certain amount of time.
    • Joanne2389
      Joanne2389 dhode

      Posted

      The first 4-5 months were quite confusing. There was only minor improvement during these months and I was really skeptical. I also got some new symptoms during the first months (perhaps my body was still really damaged), which also improved dramatically  after 7 months. My vitamin D  level was already in the normal range after only 2 months of treatment and I still had to wait another 5 months to see the great improvement. 
    • Joanne2389
      Joanne2389 andrew64988

      Posted

      Vitamin D deficiency symptoms are very similar to low thyroid symptoms and I guees it's hard to know which is the  real cause. I didn't have thyroid problems (I had lots of thyroid tests), but my VItamin D deficiency caused a lot of itchiness, which is mostly gone now.  The itchiness clearly dind't have anything to with the skin, it was some kind of neurological itching, same as the pain and the burning skin sensation that I had.
    • Joanne2389
      Joanne2389 Jaybelle

      Posted

      Good luck, Jaybelle! If you are already feeling better, it means that you are one the right track
    • Jaybelle
      Jaybelle andrew64988

      Posted

      I had low vitamin D and thyroid problems, so I can't tell you which one was more responsible for my skin issues, but yes: I had periods of intense itching, especially my shins, which no amount of moisturising with creams or lotions could improve. Treatment for D and thyroxine seems to have sorted it out. 
    • frankiefoo
      frankiefoo Joanne2389

      Posted

      No thyroid problems for me either but my skin and hair is dry as straw and I got rashes and lumps (itchy spots) all over my body. The skin dryness settled (using Shae Butter) after a few months of coming off steroids which I was on a course of for 8 weeks for a flare-up of Crohn's, but the scabs haven't healed and my hair's still falling out. Like with every other health problem, my GP just puts it down to age, and tells me it's probably Fibromyalgia. Bone pain is all in my head... > Like Fibromyalgia isn't. Grr!
    • denise44265
      denise44265 Joanne2389

      Posted

      Hello Joanne, so good to read your words of encouragement.  I have just been dianosed myself with a level of 14. Felt poorly for a long time too, severe pain in my hands and tiredness, back ache, pains in my legs and feet, like having the flu.  X rays and nerve conduction studies showed nothing and I felt like it must just be me imagining it, so contiuned to work, though kept having days off feeling poorly.  (I work with young adults with special needs at college) . . I actually ended up in A & E a couple of weeks before Xmas via ambulance with the most excrutiating back pain. I was almost passing out, being sick, I was on entonox and morphine, then diclofenac and paracetamol infusion to help the pain. It was worse than childbirth, really! and it was my birthday too. Sent home with loads of pain meds, muscle relaxants etc. I spent Xmas and New Year in my onesie, just giving instructions as couldn't hardly even stand up. Doc thought I had Fibromyalgia as blood tests for other things came back fine.  Am now on the gel capsules, one per day and seeing GP next week. Don't know when I will be well enough to go back to work, I find it quite frustrating, not to mention painful to stand still, walk any distance at all, my arms hurt so much sometimes I don't know what to do with them, my back hurts especially at the base and I can't bear clothes that are close fiting or pressing on me, so it's mainly onesie's or loose trousers. Knowing that I should get better is really encouraging as my dusghter is getting married next year abroad and I want to be well enough to be there to share her special day.  

      Sorry for the monologue and best wishes for your continued recovery and wellbeing xxx.

    • Joanne2389
      Joanne2389 denise44265

      Posted

      I know how you feel, I had all your symtoms and now are 80% gone, after 11 months of treatment. If all all your other tests are fine, there is a great chance that Vit D def is the cause. You must have a blood test every two-three months to check your Vit D level and find the right maintanance dose. My maintanance dose is very high, 4000 Iu daily, if a take less my vit D level drops very quicly in only one month. It doesn't mean that this is the right dose for you, you have to find out, be careful not to go in the toxicity range. Good luck and stay strong! It took 7 months for me to feel great improvement.
    • Jaybelle
      Jaybelle denise44265

      Posted

      Poor you, Denise. You sound in an awful way, but hold your breath and don't blink - there is life after vitamin D deficiency osteomalacia! Like Joanne, it took me seven and a half months to feel I was turning the corner, and ten months on I'm not quite there yet, but almost. I also had to stay on a high dose of D for much longer than my doctor's prescription, and anecdotal experience suggests that the pain and tenderness can almost get worse before it gets better, but you can get there in the end. Your pain is real, and caused by softening of your bones and distortion under load. Your fatigue is real and caused by muscle wasting - for me, this has been the last and most difficult hurdle to get over, but I'm almost there. 

      Don't attempt to jump back in to work too soon. I did, regretted it and ended up leaving my job because I did not see a way I could hold down a teaching job with my symptoms. I didn't feel supported or that my doctor had any idea how debilitated I was or how long it would take me to recover. It was difficult to justify continued time off work with a sick note that just said 'vitamin D deficiency' instead of 'osteomalacia', which is the consequence of vitamin D deficiency, as you have found out - the hard way.  

      Do look after yourself well, be kind to yourself and give yourself lots of time. This condition is no joke. You may find Professor Michael Holick's books and blog on vitamin D useful resources - he is the world expert on the subject. 

      All best wishes

      :-)

    • denise44265
      denise44265 Joanne2389

      Posted

      Thank you Joanne for your advice and support. To be honest my gp has said nothing but take meds and painkillers and see him in a month (which will be next week). My Fultium D3 dose seems low compared to other people at 3,200 Iu per day. I'm not sure what I should be doing, given that most things hurt and don't know what to tell work - ie. how long I will be off, though I suspect it will be months rather than weeks. I still need to rest a lot and walking is painful.

      I am so grateful to have found this forum as there is so little information generally availalbe. Sending gentle healing hugs xx

    • denise44265
      denise44265 Jaybelle

      Posted

      Bless you Jaybelle and thank you for your advice and support. My gp has said very little except take pain killers and the medication D3 3,200 iu per day, which seems very low compared to other people, given my Vit D level was 14. I see him next week so I will be more genned up on the effects of defficiency and will not be fobbed off. Reading people's stories makes me mad as I feel so many of us have been treated as an attention seeking patients (hysterical women). I will certainly look into Professor Michael Hollick. Sending back gentle hugs and very best wishes xx 
    • Jaybelle
      Jaybelle denise44265

      Posted

      No problem, Denise. I think it's really important that people who have been through it support those who are currently going through it - I felt completely lost when I was diagnosed and no one seemed to be there with any good news that it would ever end. 

      Your dose isn't the largest I've seen, but it IS daily. The Vitamin D Council have just linked to an article proposing that daily dosing is more effective than weekly or monthy bolus doses, so it may be that it will be just as effective. Look at Prof Holick's advice - it would be your choice to add to your dose according to his guidelines if you don't feel satisfied by your GP. 

      ABW, 

      J

    • tori_55037
      tori_55037 Jaybelle

      Posted

      Hello Jaybell

      I'm new to these forums and i am so happy that SOMEONE is posting their recovery. I can see that these posts are from a while ago but unfortunately Vitamin D Deficiency is still apparent and no one understands truly how it affects a person unless you are a person going through the whole shebang, AND I am seeking some encouragement smile

      I am 3 months into treatment, (started with a level of 18 in Sept. 2015). Just was retested last week (Dec. 29 2015) and levels were great, a nice 73! I am happy to see my levels go up, but I really was wishing i was back to my old self again without the anxiety, slight paranoia of the 'what if', the RANDOM extreme fatigue, I have slight sternum pain as well (i have had my heart checked and i'm as healthy as they could get).

      Symptoms that are light to none exsisting (for those of you new to the deficiency):

      Dizziness/Faint feeling

      Heart Skips/Palpitations

      Random Crying Spells

      Shortness of breath/associated with panic

      I'm reaching out to you all because I see time is of the essence with vitamin d deficiency, and I am assuming that you guys are feeling GREAT, and some just forgot to tell us!

      Is there HOPE/Life/Success after vitamin d deficiency or do people just get tired of posting about how they feel. (all jokes aside) PLEASE, just want to know I am not crazy, and it will get better, and I will survive.

    • Jaybelle
      Jaybelle tori_55037

      Posted

      Hi Tori. 

      Like you, at three months I started to panic, because although my ribs didn't feel so bruised, everything else felt just about as bad as ever - the tearfulness and anxiety, joint pain, muscle weakness and extreme fatigue. I wondered if that was all I'd get - an end to the rib and chest pain ... maybe everything else would stay the same :-( 

      I can say from my experience - which won't be the same as everyone else's - that recovering from vitamin D deficiency/osteomalacia is no joke and hasn't happened overnight. Professor Holick's guidance was heartening, as he says it can take up to a year to resolve the symptoms, regardless of your serum vitamin D - contrary to the NHS guidelines that expect you to be swinging from the chandeliers in 8 - 12 weeks. 

      I'm not sure where all the people who post on Patient.info in despair go to... I can only assume they stop posting when they get better - or at least less bad...I don't know. I do know that when things were really bad for me, I was desperate for some insight into how long all this was going to take and to see somebody else's journey to feeling a bit better. 

      I'm not completely better, ten months in. But 'turning the corner' in October (7-8 mts in) and my feet not being in agony on the walk to the tube station on the way to work felt like winning the lottery. Getting some muscle strength back was the hardest thing - as I felt I was getting better, I tried walking 15 mins at a time or a simple step workout. I would be panting, dripping sweat and shaking after five minutes. Because of the fatigue, I couldn't keep it up every day, but I can now walk for about 50 mins as long as I can slump afterwards! 

      Hy hips and elbows still get stiff and sore as the day wears on. I still get the odd black fortnight of unexplainable depression, fatigue and tearfulness. I don't know how things will go from here. I don't feel the way I did ten years ago when I could go on a ten mile hike, and I don't feel up to full time work, but I do feel that I can function and enjoy some of the things I used to like doing. I'm not sure where things will go from here, but I am hopeful for further improvement.

      I think a lot of the time to recover depends on how long sufferers have been deficient: a friend who was diagnosed shortly after childbirth bounced back in twelve weeks to her usual bundle of energy. My history suggests I've been in and out of overt osteomalacia for at least seven years. 

      So, in a nutshell, my advice is: be like a recovering alcoholic, taking everything a day at a time; expect to be in it for the long haul; be very, very kind to yourself. 

      All best wishes.

      :-)

    • tori_55037
      tori_55037 Jaybelle

      Posted

      Thanks again for the fast reply!

      It really does help to know your not alone out there. I used to be extremely happy, energetic, never tired! Then one day boom! I felt like I aged 40 years! I think my anxiety is a mixture of three things: vitamin d recovery, the fear of returning symptoms, and extreme stress.

      A lady passed away in the parking lot at my job and I was the one who found her, and it seems like everything at my job triggers that memory, which then makes me feel anxious. It's hard for me to be here, and on top of it it's just me and my chiropractor. So I'm alone a lot! (Maybe a new job will help) hmmmm🤔

      I know it will get better and knowing I have a place I can come and talk about my symptoms/feelings makes it even better! MORAL and EMOTIONAL SUPPORT ROCKS!

      Good luck to you my friend best wishes to your road to recovery!

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