all Docs stumped about leg pain

[oblong]

I have seen every relevant specialist to try and properly diagnose my leg pain.  First off I am a very fit 53 y.o. male with no other medical conditions. I take no medications.  I have been suffering with bilateral nighttime  (in bed, lying down) leg pain for approx 1.5 years. Pain is a dull ache, heavy feeling mostly in thighs. Not like restless leg syndrome at all.  I don't have the urge move, although moving does help, as does re positioning.  I feel great when up and running around. Exercise is no problem either, unless going on NO sleep in which case leg pain is even worse. Have not been able to sleep well for quite some time!

We have top notch docs in my town (Rochester NY). I have spoken to my PCP multiple times and have seen multiple specialists including a vascular surgeon ( had ultrasounds), spine specialist ( had MRI), a neurologist (had nerve conduction studies, etc) as well as an acupuncturist. My spine and discs are fine. Rare disorder / disease unlikely.  The only thing we have to go on is some venous insufficiency (incompetent veins) in both legs.

You would think that venous insufficiency alone could of course be causing all this.  Except for the fact that I feel better when up and moving around, exercising!   As a rule, those with incompetent veins feel worse when exercising. I feel better! I am very frustrated with all this.  Any ideas out there would be greatly appreciated.

Rich

[Floane]

Hello Rich, I really appreciated your post.  I don't have an answer but wanted to share my story to see if in the future we could help each other.  I am 58, 5'9" and very physically fit.  I have low A1C, low blood pressure 110/70 and very good cholesterol levels.  I bike ride, walk or do yoga almost every day.  I've never had any health issues.  As I hit my forties I was prone to getting leg cramps at night if I had a late carbohydrate based meal (so I just cut those out).  Sometimes they would wake me up and I would have to walk briskly around the house until I got my heart rate up to "walk it out".  About two years ago, I started having this mild sensation in my lower right leg.  I have no bulging veins and no swelling.   Gradually, the mild sensation turned into a burning, numbing, heaviness but still never a bulging vein or swelling (I do have spider veins).  A year ago I had both legs "ultra-sounded".  The left was normal but the right leg's greater saphenous was bigger in diameter but not big enough to have the insurance cover the Venous Ablation Surgery.  I started wearing compression stockings, then a month ago, after having a follow up ultrasound, I had RF Ablation procedure done on my right leg's upper saphenous vein.  Unfortunately, this hasn't improved my condition.  The physician states that the procedure was successful, my other veins are normal and basically that "perhaps it is neurological".   I also have Veinous Eczema, it is just an itchiness that I have to control right now with a steroid ointment every few days but I have been told to try cypress oil and witch hazel.  So I am on a hunt just like you to figure this out.  If you are still checking this post, let me know. Kathleen