help please!!!!

Posted , 7 users are following.

I am sitting in bed crying my eyes out and just can't stop.  For years I have been back and forth to doctors and different specialists, recently rheumatology.  I have been loosely diagnosed with RA, fibromyalgia, ME etc., and had so so many tests, scans, xrays, meds!!!  I never understood the fibromyalgia diagnosis as it seemed to me anyone without any other diagnosis was simply diagnosed with fibro, regardless of symptoms, so was never happy with it.  Rheumatologists can't seem to make their mind up, one says its RA, another says not, the guy who scanned me said it was very clear that it was RA, looking at the inflammation, but my last visit I saw a locum who dismissed it and discharged me.  I have been suffering the most severe headaches for over a month now, every day, all day and had a brain scan yesterday which, thankfully, showed nothing sinister.  I have phoned today for blood results and was told my vitamin D levels are very low and to repeat with calcium - I already take calcium tablets and havedone for a few years! So -is this the real culprit?!  I looked up the symptoms of vitamin d deficiency.  The first thing I read was that one of the first signs of vitamin D deficiency is a sweaty head!  I have told many, many doctors and specialists about my head sweating uncontrollably for at least the last two years. It was put down to perimenopause.  It is embarassing going anywhere public, meals out, my daughters awards evening yesterday, constantly wiping my brow and fanning myself.  So, apart from this symptom, aching bones and muscles (I can barely move some days and spent 18 months practically bed bound and obviously unable to work - putting my home at severe risk), a bad gut (I suffer diahorrea regularly) and possibly the headaches too!! I am crying partly out of relief, partly frustration, partly I have no idea about (yes, depression is on the symptom list, as well as cognitive problems - I almost drunk a melted candle the other night!!)

Anyway I have an appointment with my gp shortly. I am just scared he won't agree that the vitamin D deficiency could very well be responsible for all of my symptoms.  I feel very strongly that this could be the answer and if it is,well I get my life back with treatment!! 

I just want to know whether anyone has any advice, whether anyone else has had the same problem?

TIA xx

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  • Posted

    Hi tia so sorry u r feeling this way gentle hugs xx

    I had blood test done around 5 months ago after I kept going in crying in pain it turned out that I had low vit d along with low b12 folic and iron the vit d was the main issue for me as it felt like my bone marrow was on fire this caused me terrible terrible pain on a daily basis until they gave me a dose of vit d in tablet form it was a months dose in one tab the next day the pains were gone ! I to have just found out I have fibromyalgia but I have daily pains in bones and muscles etc but not the marrow pain I felt before! Have u been given anything for it

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    • Posted

      Hi Sadie, thanks for replying.  I also have low iron, so taking iron tablets now.  Apparently my b12 is always borderline, I am havingfurther blood tests tomorrow.  I already take calceous daily, but realised that it was still not working, as I am still gettting mouth ulcers regularly and if I miss a dose for just a few hours, the ulcers start right away!!  

      I know how bad the daily pain is, I was almostbed bound for 18 months with crippling hip pain that nobody could find any answer for. I ended up on disability but have returned to work part time as Iwas close to losing my house, couldn't afford my mortgage, so struggling at work butat least managing to get there.  I can't wait to start better treatment for vit d deficiency, problem is why is my body not absorbing it.  You must have the same problem of your body not absorbing stuff too.  Have they done any more tests for you, to find out why? I know coeliac is one of the reasons,  I have been researching a lot today, it causes all kinds of auto immune diseases having low vit d.  My friend was recently diagnosed with MS.  I have known her most of my life and I used to tell her off for not eating properly - saying she would make herself ill.  Now i can't help thinking her MS was caused by vit d deficiency, as that is one of the things listed that I found in my research!!  My doc said there is a lot more research being done now, but from what I have seen there is a lot of evidence already out there! I have read several case studies today.  I keep thinking - I may get my life back, I may be able to stop taking all these blinkin pills!! I take oramorph too - cocodamol, tramadol, amitryptelene, citalopram, cetirizine, lansoprazole, ferrous fumarate, calceous, fenofibrate and atorvastatin and also senna cos of the cocodamol - to think I may be able to reduce by more than half!!!!!!!

      I do hope you get sorted soon too xx

       

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    • Posted

      Hiya Sadie..I was diagnosed by a Rhumotologist after I gad Fibro fir 10 yrears..grr..had it diagnosed now for  over 20 yrs now..plus other autoimmune sydndromes...once you get settled on a ned that works fir you it wil become much better, I take this: 

       Amithriptilyne .  is a Nerve-pain blocker..with sleep assistance and minor anti-depressant)..

       Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...16yrs down the track..have to be woken up in the morning..but once up and about I'm just fine.....when I was first on them I was like a zombie..but it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx

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    • Posted

      Hi Christine

      I've been on tramadol and zapain with no affect I'm also on 30mg of ametriptoline every night which is alright think I could do with a higher dose ! I've also just been given gabepentin which I've just took my first tab ! My heart is pounding where I'm so nerves as I no of lots of people that it hasn't agreed with ? So I'm very worried I'm in a lot of pain today that's what made me take the plunge and take the tab as I've had them 3 days but was to scared to take them x

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    • Posted

      Wow!! You are on a lot..don't know anything about the other meds..I'm in Australia-maybe there called something else here..maybe taking a higher dose of the Amitriplilyne may be your answer..I just couldn't stay awake on any higher than what I have..it took long enough to get the dosage sorted  too..lots ogpf people on here have sude effects of their heart palpitating with meds..but I think it us the Amitriptilyne...maybe try googling sude effects of all you meds night help...they have an Amitriptilyne blog on here too actually.,putting it out there is a real help too as many will give you their personal experiences ..be blessed sadie..:-) xxxx gotta say too years and years ago when they were trying to get my meds right, I hated taking anything new without knowing what side effects they had..I needed to know what to expect in case I got one...and started to worry..
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    • Posted

      Well two hours later and I'm still alive and the pain has gone it's like my body has gone numb I do feel a little sleepy but omg I was in terrible pain this morning but now it's gone I actually can't believe it !

      So happy but the dosage has to go up which I'm not looking forward to

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  • Posted

    Hi  sandy67 I was diagnosed last year by a rheumatologist after 10 years of many tests and seeing every specialist you could possibly think. I was found to be in low in vitamin d. Low in vitamin wount be to blame for all of your symptoms its more complicated with than that where fibro is concerned. specialists seem to think we are low in certain chemicals in the brain. theirs many factors to do with fibro none of which specialists dont have the answear too. hope your visit to the dr goes well take care
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    • Posted

      Hi Kaz thanks for your reply. I have done a lot of research today and read a lot of case studies.  I read that a lot of people are misdiagnosed with fibro, ME, etc. So many people with bone and muscle pain, headaches, sleep disturbance, fatigue etc., were found to be deficient and after being given high doses, the symptoms gradually went completely.  My doctor today, when I explained everything and told him I was starting to think everything was down to this, he, naturally, told me to stay grounded but that was before he realised I was already taking calceous.  He was actually flabbergasted when he did realise and said it was very unusual to come back so low when I am actually taking the calcium vitamin d tablets and he started to really think and decided that  I could be right, and it could all be down to this and I am obviously not absorbing it propertly, - I also get out a lot during the day, I love the sun, I eat lots of salmon andmackerel and loads of eggs! I am having another blood test tomorrow and then he is going to prescribe something a lot higher but also send meto a specialist to look into why my body is not absorbingit, I am also low in iron and B12 has always been borderline. He also said that there is actually a lot of research going on now into the lack of vitamin D - the things I read about were quite amazing, it can cause all kinds of problems, auto immune diseases included.  I havewatched expert videos, and read lots of case studies today and I think this could be the answer!!  A lot of people I have spoken to who have been diagnosed with fibro have also said that they are low in vitamin D - what if that is what causes the fibro and not the other way around?! it has got to be worth looking into more x
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    • Posted

      Hi Sandy67 Being low in vitamin d can cause alot of problems.  Its good hes sending you to see a specialist about why your not absorbing it as you should. When the rheumatologist diagnosed me he sent me for a blood test, blood test showed I was loew in vitamin d. so was prescribed a high dose of vitamin d once I had taken them all. I had to have another blood test to check my vitamin d level which was fine. Interesting that research is being done into lack of vitamin d. I will be having a chat to my gp about it. Is your go doing something about your iron with it being low as that can cause problems too. take care gentle hugs 
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    • Posted

      Hi Kaz, so sorry for late reply.  I am taking iron tablets too.  Please read my post below about the parathyroid gland as it explains all xx
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  • Posted

    Poor you Sandy...really feeling for you ..it took 10 years for me to be diagnosed..it was a huge celebration when I finally did...I have OA as well as Fibro...things were getting quite mucky during the years of diagnosis..it was almost like...no..she couldn't have two illnesses..grrr I also  have Sorgrens  Syndrome I was diagnosed with that first actually...yet another autoimmune Syndrone...grrr..be blessed sandy...gave a lovely day..:-) xxx
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