First off, I'm SO glad I found this forum! Just reading these posts makes me feel so much better that there are people who understand what I'm going through and that I'm not alone.
Quick background
I'm a 27-year-old mother of two who has been very healthy up until last year. After the birth of my second daughter in April, I lost 40 lb in 6 months without trying (same diet, minimal exercise), which is nothing like after my first pregnancy. In November, I went through severe neck pain and a pounding headache near my left temple (exacerbated with movement), but those symptoms eventually subsided. In the beginning of December, I started having pain in my hands and my feet. At first it was just like occasional painful cramps or shooting pain, but then within two weeks the pain had increased in its frequency, duration, intensity, and location (not just hands and feet but also further up on the arms and legs).
I have been to a family doctor, two internal medicine doctors, a neurologist, and an endocrinologist. They have run the gamut in terms of tests, and they can't find what's causing my symptoms. My Vitamin D was a little low (24.6 ng/mL) and my Vitamin B-12 wasn't clinically low but could be better (487 pg/ml), so I started taking those (5000 IU vitamin D3, 1000 mcg vitamin B-12, and a super B-complex).
One doctor said there are good medications for nerve pain but fatigue is a common side effect, and since I already feel fatigued enough, I don't want to go that route. Right now I just try to keep my mind constantly busy so that I don't notice the pain as much, and when it gets really bad, I take over-the-counter painkillers to take the edge off.
What I'm looking for from this post- First, it just feels good to get my story out there to people who may understand what I'm going through.
- Second, does anyone have any idea what's going on with me, and why the sudden random peripheral neuropathy (assuming that's what it is)?
- Third, where should I go from here? When I saw the neurologist, it was at the beginning of December when the pain was just starting, so he didn't really look into it that much. I could go to another neurologist (a different one, because the first one was a jerk), but I'm so tired of doctors not knowing (or caring, or believing) what's going on with me.
Peripheral Neuropathy symptoms
Spontaneous burning pain in my fingers, hands, wrists, toes, feet, and ankles *** I'm full body...from my scalp to my toes, and all points in between.
Occasional muscle cramps/contractions in my hands and feet***I have horrible feet and leg cramps, especially with salty food.
Sometimes a deep ache in my thigh or upper arm *** Yes, in my legs.
Tingling in my right index finger***sporadic tingling all over, especially in my temples
Muscle twitches on occasion (feet, shoulder) *** In my legs all the time. I can feel them, but can't see them.
Other random shooting and burning pains, mostly in my arms and legs*** When it first started, I had the horrible nerve pain in my legs and feet. It's subsided to "just" tingling and burning now.
Other symptoms
Unexplained weight loss (40 lb in 6 months) *** The opposite...gain.
Difficulty keeping my weight (I have to eat a ton or I continue to lose)
Constant low-grade fever (between 99 and 100)*** no fever
Fatigue (don't have the energy I used to)*** no fatigue
Tests and imaging done (with normal results)
Brain MRI, neck MRI, chest X-ray, spinal tap
Basic tests like CMP, CBC, etc.
Endocrinology tests for thyroid, adrenal, and hormonal function
Lyme, EBV, rheumatoid factor
Protein immunoelectrophoresis, protein electrophoresis
Magnesium, Ferritin, Vit D, Vit B12, growth hormone
Others that I can't think of, but ask if you have ideas
Anyway, thanks in advance for reading and replying!
-Liz