CFS/Post Viral?

[cosmicslop]

43 year old healthy male before this all started in Aug 2016.  Had mild colds/URIs May, June, July 2016.  No biggie.  Had another one in August 2016.  This time I noticed a strange tightness/weakness in both thighs and severe muscle fatiguability after walking mere yards.  This literally happened over a weekend.  I have not been normal sense and have had all the work ups.  The only abnormality found after blood draws, MRIs, EMGs, NCSs, etc. were elevated EBV titers (all 3).  My IM and rheumatologist diagnosed me with a post viral syndrome.  My neuro is not so sure but every test he conducts is normal.  I think he just wants to find an answer for me, but I suspect he believes it's viral related too.  He is sending me to a neuromuscular specialist in the spring.

Anyway, 6 months of this and I am only nominally better.  Gone is the insane muscle twitching (now it's merely moderate to mild) and painful muscles (mostly in upper legs - calves are fine), but I still have a lot of trouble walking due to weakness/fatiguability.  Before this I could dunk on a 9 foot b-ball goal...now I have trouble getting to the mail box before the muscle fatigue makes me stop.  Some days are better than others...and I try to ride a bike...but I am so discouraged.  I mourn all the things I used to do.  I lament the fact this affects my wife.  We have kids on the way, and I am terrified that I won't be physically up to it (triplets!).  

Everybody keeps telling me: just wait it out....it can take a year or more.  Sometime 2.  I've read almost everything on the message boards.  I guess this post is more about venting...after a while it gets old talking about it with family.  I just want this to go away or at least get to a barely noticeable level.  Thank you in advance for any tips or words of encouragement.  Some days I can "deal"; others not so much.  

[JohnnyRocket244]

Please get checked for a condition that I have called May-Thurner Syndrome. It's been causing me problems all of my life. Mostly with anxiety and extreme fatigue but more recently with the problems you're having. It causes muscle weakness/fatigue in the thighs and legs. Both of my legs felt like they weighed 300 lbs each and my thighs hurt. It also can cause exercise intolerance and CFS. The problem with this condition is that it's known for one thing and one thing only (Blood Clots and DVTs). But I've never had blood clots or swollen with this condition so no doctor would ever think of May-Thurner. Then recently after having another vein procedure my doctor noticed that I have May-Thurner and placed a stent in my left iliac vein. Almost immediately blood starting flowing normally and by the next day my legs and thighs didn't hurt anymore and every ache and pain in my body disappeared. I could breathe so much better and my anxiety and fatigue are almost gone now. I felt the same way that you did wondering how I was going to live life. The good news is if you do have this condition a simple stenting procedure could give you great relief from you're problems. Hope this might help as I know from personal experience most doctors know very little about May-Thurner Syndrome and the problems it can cause.

[cosmicslop]

Thanks for response.  The docs have ruled out any vascular issues, thanks.  That was one of the first things they tested.

[JohnnyRocket244]

Just curious did they specifically look for this condition because it is often overlooked? If they did that's great! None of my doctors thought of it.

[cosmicslop]

I will certainly mention it when I see the neuromuscular neurologist in a few months.  Thanks.