My God, it's like reading my life for the past 15 years when I read these lists. Some of the symptoms I have forgotten about or never connected to the same condition...
It's appalling that so many people suffer for so long with something like this!!
I really wonder what to expect as a prognosis.
I never expected that the treatment would feel as bad as it does sometimes. I guess it makes sense as calcium returns to bones and body structure heals, but it *****.
I do notice some differences as I stay on d therapy... It feels like nerves are healing. The tingling is lessened and I am getting more sensitivity back in my fingertips I think. I'm starting to sleep better also. On days when I am active I still hurt a lot but I feel better after a nights sleep than I did before... Still I need to take it easy the next day it seems, and fatigue Or pain can still blindside me with no notice. But I've only been on d therapy for a little over a month.
I don't know if this helps or has the opposite effect but I've had initial adverse responses to treatment and adverse responses every time I up my vitamin D dose. Things like extreme back pain, etc...I'm also sleeping better than I have in years...I guess I won't know what's causing what until I get my D levels over 40...I've been on therapy now since May and just crested slightly over normal (30) in mid October. I'm scheduled for my next blood workup in about a week. Perhaps D deficiency causes horrible symptoms just the way B12 deficiency does though I still don't think it accounts for everything at least not in my case.
Every bit of input helps! For instance, seeing everyones list of symptoms has helped me know I'm not crazy! So many years of feeling like I'm just broken for no reason that can be found left me feeling hopeless and depressed and attributing it all to being unlucky in the gene pool sweepstakes or worse.. Maybe deserving all this pain and decline because of something I did or didn't do.
Also, finding out how others are experiencing treatment let's me understand what to expect (generally). If I didn't know that treatment is also painful and slowwwwww I might have given up!!
So thanks to everyone!
Very slow (someone -- I believe Gadgetsmidget-- posted something 0n timelines) so hang in there...Phyllis
Thank you for teh reply and encouragement.
I am indeed taking supplements. Forgive me for not knowing doses or anything, I am just taking what was given without really looking into it. The packaging reads "Adcal-D3" PL 16508/0001. I am taking two daily and have been doing so for I guess 3 weeks or so.
I also had teh Ergocalciferol(sp) injection, 300,000 something or other the dose was I believe...
No benefits felt as yet!
I am well aware that anxiety is playing a huge part in my experience. To the point where it is now hard to figure out what the anxirty symptoms ae and what the vit d deficiency symptoms are, if that makes sense! I spent so long worrying about what could be wrong with me, that it has allowed some real nasty anxieties to creep up on me. This was most evidemt whilst I was waiting for my brain CT, the anxiousness caused me to almost become housebound, it's luck I have a great girlfriend who made didn't let me lose sight of the person that I am or I think I would have ended up literally driving myself mad with worry!.
Phyllis, thankyou for your words. I can also add palpitations and heat intolerence to my list of symptoms (so may that I have probably missed loads out!!). The heat thing is quite servere, I literally can not stand hot weater at all, and have not been on a typical 'summer holiday' for years because of it. My temperature is generally huigher than it should be (normally pushing 38), so I'm guessing this may have something to do with the fact I can not stand the heat.Who knows! My GO does not seem concerned about my temperature as it is not alarmingly high!
You mention that you have thyroid issues? I think that my thyroid function has always been normal when tested...
David, be patient and stick to it your D counts will go up. Also, remember that D3 is best metabolized when taken with a fat (so take it at meals or with a bit of cheese or nuts or something). Well, my thyroid labs are also normal when tested. However, because I had symptoms suggestive of hyperthyroidism or hyperparathyroidism, along with a strong family history of hyper and hypo, I booked an appointment with a thyroid/parathyroid specialist. Luckily he thought outside the box, and even though my labs would not justify an ultrasound to the insurance company, he performed the ultrasound for free. Sure enough, I was found to have multiple colloid nodules on my thyroid. He phoned me to say I needed to really focus on getting my vitamin D levels up and that I should see an endocrinologist and that he would monitor me on a yearly basis. So, I guess that vitamin D and the thyroid and these anxious symptoms (palpitations, heat intolerance etc) must be connected.