As some of you know, I was just recently diagnosed with "connective Tissue disorder", most likely Lupus, according to my Rheumy. I have always had joint swelling and pain but lately I've developed really bad pain in my lower leg area that feels more like bone pain, rather than muscle. It comes and goes, mostly comes, and I can barely walk as weight bearing makes it a whole lot worse. I normally wouldn't think too much about it but having MGUS show up in my initial blood work does give me pause to think it might be something more than my Fibromyalgia or Lupus. The oncologist had told me if I started experiencing additional pain in my bones to come back and see her since MGUS can be a sign of bone cancer but it can also show up in Lupus patients. So my question is do you guys have trouble with bone pain or is it primarily in the joints and muscles. My knees and hands stay painful and swollen but I hadn't had the leg pain like this in the past. I go back to see my Rheumy next month and am due to see the Oncologist in November for a 6 month blood test. Need your opinion.
Hello Karen,
As you know i deal with alot of pain and my rheumo i deal with now...i told him the extent of the pain was like in the bones...i do know Raynauds does'nt help one bit but the pain i get goes past the muscle and joints and that's when he tested me for vitamin D deficiency...it's surposed to be ok but Ann on the site still as concerns about it...so when i see the sister i'm re-checking.
Lack of vitamin D leads to "Osteomalacia" in adults and these are the symptoms from it...unless you've been checked already and your ok.
Hugs Terri :)
Symptoms of osteomalacia
The symptoms of osteomalacia can be quite subtle. However, specific things to look out for include:
- pain in your bones, especially in your hips, groin, legs and feet – if you have a minor knock to your bone, it can feel unnaturally painful
- backache
- muscle weakness, especially in your thighs, torso and shoulders – you may find it difficult to get up from a chair or climb stairs
Osteomalacia can sometimes be caused by other conditions, such as kidney or liver disease. Often, it's the symptoms of these other conditions that are picked up first and later lead to a diagnosis of osteomalacia.
Well I have bone and joint pain but they feel very different. I have edema in my bone marrow in my left top femur and right hand…it’s very intense!my cartilage it fraying and tear away from my joint in my hips and left shoulder so I feel that in my bones too. …When my joints swell more than usual I can manage the pain with ice, anti inflammatory rubs and tramadol. .I have to take extended release morphine for the bones, it’s the only thing I’ve found that takes the excruciating edge off. .I literally feel like I’m walking on breaking bones otherwise. …besides medicine’s it’s always good to practice a healthy diet , there’s lots off anti inflammatory foods and spices that can only help not hurt:)
Angelwing,
I've had a pain in my lower right leg I've been dealing with for a year and a half. It actually brought me to the doctor in the first place, which led to an MRI and blood work which led to my lupus diagnosis. My doctor said I had a bone bruise - and asked what had hit me, cause it takes a hard hit to cause it. I've never had anything happen to cause it, and he said this could take a long time to heal. I still feel the pain today. I've alse had a bone density test, because I was concerned about osteoporosis, but it came back normal.
Thanks everyone for your comments! I was diagnosed a few years ago with severe Vitamin D deficiency and put on a high dose of it but I guess it cleared up as my doctor hasn't mentioned it since and I didn't even think to bring it up. I don't know if my Rheumy did a test for it or not on my first visit with her but I will definitely bring it up to her next month when I go back. I do know that she said I definitely had Raynaud's so it's possible it could be that as well. Thanks for all your input, It does make me feel a lot less apprehensive about it.
Bless you Ann for the lovely words and it's funny i do have seizures but i will be double checking because when i look up the reading she gave me..nothing shows on results regarding the UK :)
Ann A. said:
Vitamin D deficiency causes bone pain because without a sufficient amount of vitamin D calcium is actually being pulled from the bones. If vitamin D levels fall too low blood calcium levels can drop to a point that a person develops seizures - hypocalcemic seizures.When we take vitamin D supplements or synthesize vitamin D from sun exposure it is metabolized first in the liver and then in the kidneys. When the liver or the kidneys do not function well in this respect people need more medical assistance than simple vitamin D supplements. People who are experiencing kidney failure must be supplied with the active vitamin D hormone that their bodies cannot make.
Vitamin D - sounds so simple - like something we should be getting from our foods. But it is not simple. It is actually a hormone in the body. We are designed to make it for ourselves from the UVB portion of sunlight. I worry about our Terri because the entire UK is at about the same latitude as the US state of Alaska. No one in Alaska is making enough vitamin D from sunlight. And research shows that neither are the people in South Carolina or Southern Californa. Vitamin D performs more than one function. But it is absolutely essential for bone health.
Tez_20 said:Hello Karen,
As you know i deal with alot of pain and my rheumo i deal with now...i told him the extent of the pain was like in the bones...i do know Raynauds does'nt help one bit but the pain i get goes past the muscle and joints and that's when he tested me for vitamin D deficiency...it's surposed to be ok but Ann on the site still as concerns about it...so when i see the sister i'm re-checking.
Lack of vitamin D leads to "Osteomalacia" in adults and these are the symptoms from it...unless you've been checked already and your ok.
Hugs Terri :)
Symptoms of osteomalacia
The symptoms of osteomalacia can be quite subtle. However, specific things to look out for include:
- pain in your bones, especially in your hips, groin, legs and feet – if you have a minor knock to your bone, it can feel unnaturally painful
- backache
- muscle weakness, especially in your thighs, torso and shoulders – you may find it difficult to get up from a chair or climb stairs
Osteomalacia can sometimes be caused by other conditions, such as kidney or liver disease. Often, it's the symptoms of these other conditions that are picked up first and later lead to a diagnosis of osteomalacia.
Hi Ann,
I know your not suggesting i have hypocalcemic seizures but they never stated where they came from and when i saw the first rheumo it was him who said the Lupus add caused them like everything else.
Ann i went through loads of stages having bloods done but how i was highly drugged even to this day..god knows what's in my files that i don't know about but i was told in my early 20's from my GP i had Muscle Atrophy... and i think through the years they've known about this and kept it hidden.
I'll mention something else to you...when i was in my teens i was very busty and i was only 71/2st for 5ft 10 but you could see all my bones and from one hip bone to the other my stomach covered inwardly bad...i was sent to see a specialist at 16 he examined and told my mom that my body was not properly maturing for my age and height.
Get your head around that one?....sometimes Ann i don't know weather to cry or laugh :)
Ann A. said:
Terri,
I am not really suggesting that you are having hypocalcemic seizures. These seizures are life threatening and I cannot imagine that your physicians would watch you have seizures and never check your blood calcium level, your parathyroid hormone level, and your vitamin D level.
I cannot imagine a physician treating a patient with seizures who would not check for hypocalcemia. The very thought is as frighting as your other misdiagnosis. Naw, Terri, that is too scary to imagine.
http://professionals.epilepsy.com/page/electroab_hypocalcemia.html
Ann i'm not thick but you know how the levels work in nanomoles per liter to the nanograms per milliliter and my result was 5.5 so would you please work it out and my weights 65kg :)
P.S My dad had osteoporosis and my other two sisters also have it but i've tested negative on it.
Ann A. said:
Tez
This link discusses the first "clinical guidelines" for vitamin D in the UK.
http://www.iofbonehealth.org/uk’s-first-clinical-guideline-identify...
If you want to compare the nanomoles per liter to the nanograms per milliliter there is a converter on the bottom right hand side of this page.
Thank you Ann for this info. I guess I just assumed it was a temporary deal and didn't think about it again. I will definitely be asking my Rheumy to do the Vitamin D blood test when I go back again. That actually relieves my mind a lot as all I kept thinking about was the MGUS that showed up in my bloodwork and the Oncologist's remark to be sure and let her know if I start experiencing additional bone pain. I go back to see her in Nov.
Ann A. said:
Dear Angelwing,
If you took the high doses of vitamin D that were prescribed by your physician and then at some point stopped taking vitamin D supplements because your physician did not bring it up again. Then please bring it up as you are once again deficient in vitamin D.
When we are diagnosed with severe vitamin D deficiency our physicians write us a prescription, generally for 50,000 IU gel caps one a week or so. After the prescription is exhausted our physicians should test us again and give us instructions on how much vitamin D we should buy over the counter without a prescription and take every day to keep our vitamin D levels in a healthy range. Vitamin D deficiency is not like an infection that can be cleared up with a short course of antibiotics. Our bodies use vitamin D constantly and in order to not be vitamin D deficient we must constantly supply it. We cannot get enough sunlight to make it and we cannot get enough from our foods.
I wish you the very best of luck in finding a physician who will provide you with the routine vitamin D testing and the vitamin D education that you need. If you are interested in educating yourself about this important nutrient please try
the vitamin D council www.vitaminDcouncil.org and grass roots health www.grassrootshealth.net