Searching for hope

Thank you I read your words I've been on 50,00 units then Dr's have away of not remembering their patients so I have to explain my ordeal from start to finish every visit it's extremly uncomfortable thinking I've seen him enough to assume he would remember but doesn't follow ups are something I insist on he 7s a kind man just too many patients ,,,,so I am now on 2,000 aday vitD I've tested negative gor OA RA I it's been about 2+yrs but I think.I tested a neg on auto but I swear I feEl like I have symptoms of several illnesses until I started reading on vitD it is like reading my exact symptoms except I dont have kidney stones I never have my hips and back are affecting my life painfully everyday but my hands they go numb all day everyday it effects my job fourtunantly my boss treat me like family I'm angry now it's not a good feeling I'm so sad I have days where I literally think I'd be better n off ending it all I've not hurt myself or anyone but like you and all the others on this forum you can't imagine the pain everyday is and I remember vaguely having low vitD before my hysterectomy my Dr said I'm anemic and what hormone I have is unbalanced I had a full billateral salpingo oophorectomy if that helps after the surgery my health went down hill rapidly the weightgain is alarming

" like you and all the others on this forum you can't imagine the pain everyday is"

If by that you mean we don't know about chronic pain - don't jump to conclusions. I also had 5 years with constant pain and disabilty which finally had me housebound that my GP declared himself baffled by as my bloods were normal. I have an autoimmune disorder, not particularly rare - but I am one of the 20% who don't show blood markers. The only treatment is prednisolone with all its delights. I couldn't have worked at all in the last 6 months before I finally worked out what it might be - although the rheumy I saw didn't agree. Another GP recognised it and the magic response to pred and other doctors since agree. Pred isn't a real answer - it just manages the symptoms and creates a load of its own - but it gives most of us a relatively pain-free quality of life. But many of us have associated back muscle problems - which produce similar symptoms to those you describe. Pred doesn't help them - but there are other things that do.

If you have had high dose vit D - has your blood level been checked? It isn't uncommon for a single course to not raise it longterm and it falls again. The 2000 IU is theoretically enough - in practice, not always.

If your blood vit D is now high enough you need a referral, probably to rheumatology because what you describe COULD also be due to an autoimmune disorder. Just because it fits low vit D doesn't mean it doesn't fit something else. 

If your usual doctor can't at least remember a vague idea what you have already been through then, as a start, you need to sit down and write a brief diary to hand over when they look vague, you don't have to say it all and they should have notes anyway. And then you need to find a doctor who CAN be bothered to realise this is a chronic problem that needs to be investigated by experts if they aren't able to come up with an answer.

And going back to the back problems I mentioned: one thing that might apply is myofascial pain syndrome. It can form trigger points in your shoulders, at rib level and in the low back. If they get bad enough they can irritate and trap nearby nerves and then cause referred pain and problems in the arms and legs they supply. That includes pain and tingling and numbness like you describe. I'm not speaking off the top of my head - 4 years ago I was admitted to hospital because of the back pain it caused. A good physio or sports massage therapist should be able to identy those problems - my back was absolutely hard, like floorboards because of it. It can be dealt with with the right approach.

If your doctor is overworked with too many patients then he cannot be a good doctor to a complex patient. You need a specialist - because RA and many other autoimmune disorders don't have simple tests to rule them in or out, there are a myriad of tests not available to a GP even if they knew about them or could interpret them. Like most of us in a similar position, you will have to take the initiative and push for investigation.

Oh I didn't realize how that sounded I meant others who may not understand how the lack of vitaminD could do this to a body I apologize I stop and start typing often since my hands hurt and go numb I have had 2bloodtest after my fist 50,000 dose which I took for a month I went back did blood work and it was still low so he put me on 2000units away he has not once said anything about what low vitamin D could do to my body I have told him numbers of times about my pain only response is x-rays,MRI it's exhausting to think of the circles I'm starting to feel like I run with my Dr I guess I'm going to have to try this once more but I won't be as understanding as I've been I will take notes from your advice I can't thank you enough for taking time out to message me thank you so much I wish j could find away to get more energy I'm so tired all the time it's strange to me to need a nap I use to never nap now I'm in bed trying to fall asleep by 8pm the pain I'm sure. Helps my lack of energy this a nightmare

If you were still low and all he did was put you on 2000 IU he really isn't up to date. 

Really do consider looking around for another GP - where are you? I'm assuming the US? If not and you are in the UK - where? After the total hysterectomy were you put on HRT? Have you been monitored for all the things that can happen after that - osteoporosis and so on? If your hormones are awry then you need an endocrinologist. 

But this fatigue is significant and you definitely need to see a specialist but deciding which is difficult since your GP doesn't appear to be capable of doing the basic detective work. However - my first thought does have to be an autoimmune disorder and for that, the first stop is a rheumatologist.

I'm in the US I did not take any HRT my father passed if cancer it wasn't a good idea so I'm not sure if this made things worse I'm ready to find a new GP it's 3 yrs of just being pushed to the side. I do get extremly dizzy my eyes are blurred it could be the high blood pressure that I have now since the surgery the more I get into details it's just aweful that this can go on and it's basically ignored by Dr's my complaints don't change they obviously cannot pickup on symptoms.

I also have my left shoulder that is painfully Numb it's been that way for atleast 9-10 months I try not to touch it or bump it it only hurt in the middle of the area it's like a sore spot accompanied with numbness I have no idea why this happened

Yup - definitely time to summon up the courage to seek a new doctor. Good luck with it - and with finding a diagnosis.