Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
In a post i came across two people who thought at one point that they had bone cancer. Me too! It was the only thing that I could think of to explain what I was feeling.
How many of you had the same thought? Did people look at you like you totally out of your mind? My doctor did. (Exdoctor).
How many of you had the same thought? Did people look at you like you totally out of your mind? My doctor did. (Exdoctor).
Odd how we go to cancer for a reason for our pain...
Luckily, my rheumy had FM himself and said that's normal, a lot of people go to cancer when they feel this kind of pain, b/c it's so mysterious....like cancer.
Hmmm. This'll be interesting to follow!
The gnawing, deep, bone aching pain would incapacitate me. It hurt soooo bad. I went to a doctor that was referred to me and he diagnosed me with vitamin D deficiency, put me on 10,000 ius of vitamin D a day and then referred me to a rheumatologist. The rheumatologist suspected fibro and then referred me to a neurologist. The neurologist did a multitude of tests and diagnosed fibro.
I still see my neurologist. She is a sweet lady whose sister has fibromyalgia and she is open to all of the natural treatments and supplements that I use.
My pains continued to worsen so I I sought the help from The Fibromyalgia and Fatigue Centers. The doctor there was an integrative medical Doctor and he helped me to get my daily pain levels down from 8-10 to a 5. He told me that it was very important to get my vitamin D levels between 50-70. He explained that the recommended levels are too low!! Thr recommended levels say 20. He said that optimum levels are between 50-70. He then bumped my vitamin D3 up to 20,000 ius a day. I stayed on the regimen for a little over a year. It took almost a full year to eliminate that DEEP, BONE aching pain and feeling of death. Today my vitamin d levels are 55 and I no longer have the deep, bone aching pain. I now supplement with 5,000 ius daily.
I was able to eliminate that particular pain altogether; however, the muscle pain, stiffness, allodynia, and unrefreshing sleep were still present. I was grateful for the doctor getting my daily pain levels down to a 5 and eliminating that deep, bone aching pain; but it wasn't enough, so I sought out another doctor after reading the book, Healing Fibromyalgia by Dr. Edelberg.
The doctor I see today is an integrative doctor who adheres to the program in Dr. Edelberg's book. She is actually his partner. They specialize in chronic pain and have treated thousands with fibromyalgia. Since seeing them my daily pain levels are 3; with the exception of flare ups and muscle stiffness. My symptoms tend to improve during the summer and I have had many days where I have felt "almost normal" as you once put it Emily. I am very pleased with my doctor and my program. She still monitors my vitamin D every 4 months.
I didn't mean to type such a long post but I could truly relate to
what you were saying. Also, I hope my story may benefit someone. I'm not going to proof this post, so forgive me for any typos in advance. Best Wishes!
Wow I didn't know such places exist. Where are you located. You seem like you are in a good area that has integrative doctors. I see a PA in rheumatology. He is by the book just prescribe medications. I have had to ask him for tests such as the vitamin D one. He is ok with saying yes to things that I ask for but I am the one who has to bring the suggestion up.
About the cancer. I have often thought there is something far more serious than what has been diagnosed. Not necessarily bone cancer but some kind.
I have never said anything to anyone though. I keep a lot to myself. A lot.
I am better most days now, like today I am so happy to feel like I have the flu. Crazy isn't it?
Just curious, when you experienced your bone pain, was there any particular area that the pain was most intense?
For me it was in my shin bones, and my thigh bones. The pain would be sudden and deep. Would really go right through me.
With rsd I was use to burning and down to the bone pain, so I thought it had spread to other areas. To me that was taboo, but not as bad as cancer.
Vitamin D has helped me some too. It's taken some of the burning away, with the rsd too. Love my vit. D!
Rssimmons- My deep bone pain was concentrated in both arms and both legs. They just ached and ached to the core/
I will look up on Dr. Elderberg.
I am happy for you that you have such an understanding doctor and you are doing better.
My pain was all over, but worse in my trunk, as in hips or shoulders, but I had shooting and stabbing pain, deep flu ache, pelvic/bladder...
Low vitamin levels keep showing up. I have always thought that it is a symptom of fibro. In other words, we have fibro and the poor regulation that is fibro means poor the digestive system isn't right and doesn't absorb well. But is it possible that vitamin deficiency kicks fibro into action? Just musing.
The fact that we all thought cancer tells me how little is known about fibro. Unless a family member has it, we just don't think it.