Seriously, I'm in pain today. Every single part of me hurts. My bones hurt. My joints hurt. This is bullshit. My dr said it is likely related to my vit D deficiency and he's going to work on getting my levels up. My bloodwork is pending until tomorrow but it was low at the last check
Winter is fast approaching here. It is supposed to be 30 degrees F (-1 C) here tonight and it is Halloween. I have 5 kids so for me, Halloween means I'm going to be bundled up taking my little monsters and goblins out to walk neighborhoods. Our town has a big 2 hour trunk or treat type deal on the square so that is where I will be... or at least that is where I need to be... in the cold, smiling and dying inside.
Would moving help me? Like down south where it is sunny and warm? Maybe get some Vitamin D from the sun. I don't think I can handle this whole body pain forever. I'm in bed wrapped up in an electric heating blanket. It is not cold inside. Not sure what else I can do.
Anyway if anyone knows something to help, I'm open to suggestions.
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IAmTheGlue
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Sorry you’re in so much pain. I hate cold weather. It’s only 50’s here but with rain. I too need to have vit d checked. Will do thy soon. Wish you could stay in & be warm. 🔥
When I found out I needed vitamin D I thought it was a joke and that it couldn’t possibly be causing all the pain to my hips etc, I used to walk like an old woman in the morning because it hurt so much, but took the tablets like a good girl and now most of the bone pain has gone! Still get some days where it hurts if I’m tired out but getting some vitamin D inside you will help so much.
It is surprising how vitamin D deficiency can cause such terrible pains. I had bone pains so much I never walked anywhere much, even going to the super market shopping left me in pain.
After having 3 months on a high dose, I take vitD every day now as a maintenance dose in the summer months it's up to normal, but it drops below again in the winter. So Iam now increasing my daily dosage in the winter to try and keep it in the normal range.
I was also advised to take this with a meal containing some fat, it helps it absorb better, don't know if that's true but it's worth a try.
That is true because Vitamin D is a fat soluble vitamin. The other 3 fat soluble vitamins ate A, E and K. The body stock piles the fat soluble vitamins in your body fat and helps with that absorption.
I too had the horrific pain from head to toe. It was also due to my vit D. Once my specialist got me on a high dose of prescribed vitamin D once weekly it stopped. It is crazy how that can affect us. I wouldn't up & move over this, if you are happy where you are. I live in southern Indiana & will not allow this disease to dictate my life any more than it already has.
My labs came back and my Vit D is in range now. He said keep taking the supplement. Later my GI called and she asked how I was feeling and she attributed my pain to the prednisone. I had tapered down to 10mg but this morning her assistant had called to say go back to 20mg starting tomorrow morning and I'll get bloodwork every other week to keep track of things.
My body still hurts. I was in tears last night. Part pain, part frustration that I can't just be normal. I was bawling this morning when I saw my vitamin D levels were normal. I had hoped that getting them normal would fix the pain and if they are already normal, no hope there.
So I am hoping that going back on a higher dose of prednisone will help with the pain. I did reas some people have problems tapering it. Or maybe my vitamin D has not been normal long enough?
But anyway, thank you all so much. ❤ I appreciate all of you.
Is your calcium level high too that can add to your aches, my calcium is too high so I can't take vitamin D for my aches as it increases calcium too. Life in the warm sun would be the perfect answer for me but sadly I live in West Yorkshire. Hope you get sorted out this is a great site for advice.good luck
I don't know. It was low before. I'm getting a CBC next week so I'll see what level it is. That's what I think, life someplace sunny and warm would be ideal.
Sadly, I live in Phoenix, Arizona and despite the constant sun exposure my vitamin D levels are still low with PBC. It is a constant struggle trying to keep them up. I currently take 3,000 mg 4 days a week and 4,500 mg three days a week. My numbers barely make it into the normal range with this dosage. I experience bone and joint pain constantly, especially in the bones on the top of my feet. I also have to be careful of how much vit D I take because I get calcium related kidney stones regularly. It’s always such a balance act
Maybe I've mentioned this to you in a different post... I know I've mentioned it before but, Autoimmune diseases come in packs... Some have PBC and one other AI, others have 3 and even 4 AI's.
When I was first diagnosed with PBC I was so stressed out. Unfortunately that can kick in other immune weaknesses. For me it was aching joints. My ankles, knees, and wrists were swollen and super painful. Even my neck hurt to turn my head. I had low grade fevers (still do but not as bad) and weird muscle aches...like a burning. I had to see a doctor about it. My GP sent me to a rheumatologist. He did blood work and diagnosed me with seronegative RA. He started me on Sulfasalazine. It took 3 months to really get the inflammation down to where I have very little pain. My wrists were unresponsive to the sulfasalazine and I was diagnosed with DeQuervains tendinitis in those. Even that's finally less painful but still there.
So, try to see someone about the joints and muscle aches. Too much pain causes stress, stress kicks in more trouble for us. Prednisone will help but it's temporary relief for joint pain.
Hope this helps,
Stella ❤
Have you been checked for Fibromyalgia? It's another autoimmune disease that may pbcers have.
Sorry for the delayed responses. I'm just hanging in there this past week. We had two deaths in my family. My Uncle was likely murdered (went to the police and said if anything happened to him to look at his neighbor and he was found electrocuted the next day) & sadly my aunt had a massive heart attack on the way to the family reunion.
Drove my elderly mother, whom I have a very strained relationship with across the country for the funeral, turned around and drove 12 hours home for my dr appointment the next day. When I dropped my mom off at her house, my 15 year old daughter said "omg, I had no idea grandma was so mean. I always just thought she was a nice old lady" so stressful time...
Anyway, I actually was diagnosed with Fibromyalgia over a decade ago but my dr said he thought I had Lupus but did not want that in my chart. I was taking 28 pills a day for it. Then my liver swelled up and I got seriously sick. My now husband was convinced that it was not fibromyalgia but just stress affecting me. I stopped taking all the pills and managed my pain by avoiding stress. I assumed my liver problem was just not being able to take so many pills. Then my dr was arrested for running a pill mill, and I just was so disgusted by it all...
So, it is very possible that I do have Fibromyalgia. Rheumatoid arthritis actually runs in my family l guess I do need to get this reevaluated.
Saw my dr Friday and my LFT results are worsening. Just very sad right now.
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