Discussions By Condition: I cannot get a diagnosis.

Intense leg pain since childhood

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: NancyHaywood
  • June 14, 2010
  • 08:35 PM

I have suffered from an extremely intense leg pain since I was very young. My mother, aunt and brother also suffer from this as did my maternal grandmother. At one point my father was told I had anemia and I was put on an iron supplement. This however did nothing t help. At another point my mother was told it was Thalassemia, but there is no mention of lower leg pain in anything we could find. The pain started out every couple of months and as I grew older the pain happened at closer intervals. I have had two children and I am now in my 30's and the pain is almost a daily event. I have seen a neurologist, rheumatologist, oncologist and I am now under the care of a pain facility. I have gone thru bone scans, MRI and CT scans and numerous x-rays. With all of this said and done nothing has been found that can help. Numerous medications have been prescribed from vitamin D supplements to Soma, Ultram, Geneva and even Zoloft. Still nothing helps and the medications seem to make me only tired. The pain can be described as in my lower leg area below my knee. It feels as if my leg is being twisted in opposite directions. Another way to describe it would be someone drilling into my leg. I have often joked if I could just break my leg it would feel much better. The pain usually occurs in my left leg but does sometimes happen in the right. It can happen at any time of the day and exercise, rest, sitting, standing or laying down to not make it start or end. My family history is Anglo Saxons from Ireland, Italy, France, England and Lithuania. There seems to be no answers online for this. Any help would be appreciated.

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  • I have suffered from an extremely intense leg pain since I was very young. My mother, aunt and brother also suffer from this as did my maternal grandmother. At one point my father was told I had anemia and I was put on an iron supplement. This however did nothing t help. At another point my mother was told it was Thalassemia, but there is no mention of lower leg pain in anything we could find. The pain started out every couple of months and as I grew older the pain happened at closer intervals. I have had two children and I am now in my 30's and the pain is almost a daily event. I have seen a neurologist, rheumatologist, oncologist and I am now under the care of a pain facility. I have gone thru bone scans, MRI and CT scans and numerous x-rays. With all of this said and done nothing has been found that can help. Numerous medications have been prescribed from vitamin D supplements to Soma, Ultram, Geneva and even Zoloft. Still nothing helps and the medications seem to make me only tired. The pain can be described as in my lower leg area below my knee. It feels as if my leg is being twisted in opposite directions. Another way to describe it would be someone drilling into my leg. I have often joked if I could just break my leg it would feel much better. The pain usually occurs in my left leg but does sometimes happen in the right. It can happen at any time of the day and exercise, rest, sitting, standing or laying down to not make it start or end. My family history is Anglo Saxons from Ireland, Italy, France, England and Lithuania. There seems to be no answers online for this. Any help would be appreciated. I know I'm no help, but i must comment, that i have the same thing, ever since i was a kid too.Started when i just a little kid, three or something, everyone kept telling me its just growing pains. There has been growing pains in my family, granparents and parents, but for everyone it was just for childhood.Unfortunately, my "growing pains" never stopped.I've just now started to try to find out what this all is about, Im having my mri scans taken next month, but im guessing nothing will come out of that.But have you done EMG test? I have high hopes that it might just be the thing that gives answers.I've seen few best doctors about this matter, and they've all gone quiet because they cant think of a diagnose from my symptoms..but even the doc said that the emg test might have some answers to help diagnosing this thing..Seems to be rare, I've googled for years but I haven't found answers, nor many similiar cases.
    Anonymous 42789 Replies Flag this Response
  • I just wanted to say that I sympathize. I've had the same kind of leg pain as long as I can remember and I am now 33. Usually an anti inflammatory would help a bit and a deep muscle massage but really, its just got to go away on its own. My pain seems to be worse when the weather changes but not always. I occasionally have the same kind of ache in my arms as well. I am pregnant with #2 right now and am daily experiencing pain and of course I can't take anything. Just suffering through it. All the research I've done has only confirmed that nobody really knows what this is. I had a doctor say that maybe its fibromyalgia but I don't know. My mom and 3 sisters all have the same kind of pain. I wish there was an answer!
    Anonymous 42789 Replies
    • August 21, 2011
    • 06:36 PM
    • 0
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  • Hello, I am 24 years old and I have almost a similar story other than I haven't had any test done YET. I've been experiencing the pain since I was about 4 or 5 and was told by mom that it was just growing pain. It can occur in either leg at any given time. It feels like something is drilling in my leg and it's a very intense aching pain . I cried when I was a kid because it hunted so bad and If I don't have some kind of pain medicine when it strikes now I will cry because the pain is so bad.
    Anonymous 1 Replies Flag this Response
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