Intense workouts and a return of bad symptoms after 8 years

[TerryB2865]

Got lab results this morning, which were normal across the board. I have been scheduled for an EMG and nerve conduction test for mid-September (earliest I could get in) and will then see the neurologist. For the neuropathy in my feet (cold, tingling, burning sensations) my primary care doc is putting me on Cymbalta. Still having the tired legs with normal activity and while my hand strength is good, they still just don't feel right. My anxiety is off the charts. Energy level and brain fog have improved, at least. I continue to pass the strength tests. Trying to think positive, but my hands and legs have me worried. Have a twitch that moves my index finger on my left hand inward rather often, especially after activity (typing, which I can still do, or just making a fist). Still have the intermittent tingling in my mouth and if I sit still I have a tingling sensation, almost a buzzing, in my upper body and arms, and some tremor in my arms. Still heading to Colorado with my GF and her kids on Sunday, but my planned hike of Grays Peak is off. Just don't have it in me right now. Who knows whether I'll be able to hike at all this trip. Hopefully the change in scenery and being distracted will help. Having a very hard time with this. Had stuff like this 9 or so years ago, recovered, and here I am with aching legs, twitching hands that feel empty if I'm not holding something, fatigue, twitching and tingling in multiple areas. Scared of the EMG. Bit I want to know what is going on or at least tell me it's nothing bad. I know the sensory symptoms point away from NMD, but my hands and legs have me scared. Had nine years of twitches and was strong and now here I am. Thanks for listening.

[mwagner]

Terry,

Remind me - did they test your B12 levels? The tingling in your mouth makes me think of B12 deficiency.

My thumb has been twitching for 6 days straight. Not every minute, but every 5 minutes or so. And worse after typing too.

I'm glad you're not putting your body through a 14er. I think you need rest not exersion.

I'm sure your EMG will be fine if you don't have true, clinical weakness. Something weird is going on in your body, but it's the the big, dreaded disease. You sound like you could have something odd like fibro of CFS going on. I hope they're looking at those as possibilities.

Mitra

[TerryB2865]

B12 level was 411 (211 - 946 is the range). Everything on the blood work was normal. no sign of muscle wasting in my blood either. you know how your legs feel after standing on pavement or a hard surface all day? that's how mine feel with regular activity. anyone else had this? thanks mitra for your good wishes. they are appreciated.

[mwagner]

I have had this but only from time to time. Like taking a simple walk will exhaust my legs. Or my entire right arm was just feeling weak and achy yesterday (fine today).

I think this is common in BFS or at least on this board. Maybe not to your extent, but I it's definitely there.

Mitra

[muppetdog]

you know how your legs feel after standing on pavement or a hard surface all day

Yes, I get that.

How did your trip to CO go? Are you still able to work and live a normal life?

MD

[TerryB2865]

Leave for Colorado on Sunday the 4th. Glad i am going with my GF and her kids. need to be occupied. i will do what i can. still working and functioning daily. very frustrated this is going on. thanks for letting me know you have had the leg aches too. Hope all is well
with you.

[TerryB2865]

Got a question for you all. i am experiencing a strange ache in my upper arms and a feeling like little bugs on me as well. I have the ache both at rest and when driving. There is almost a tingling with it but down inside the arm not on the skin. Anyone else had this? on my Colorado trip and having a ton of anxiety. have walked but legs move slow and get stiff after about a mile. taking cymbalta which has definitely helped the neuropathy in my feet. twitching all over continues as do my hand symptoms. thanks for listening.

[mwagner]

I've had both. In fact, I've had weird aching in my right arm the past several days along with tingling (and a thumb that has been twitching every few minutes for the past 10 days - horrible hot spot that is driving me nutty). I have also had the bugs sensation but that's always on my scalp, and it feels very real like there are flies or bees in my hair (pretty disturbing for me when that happens).

[TerryB2865]

Have my emg and nerve conduction test this coming Friday morning, the 16th. Still having same issues as previously written. Am taking Cymbalta which seems to be relieving the cold, burning neuropathy in my feet. Legs still get tired, I am still fatigued (hard time getting going in the morning), still have hand weakness and twitches. Anxiety high, as you might imagine. Still not feeling good, little energy.

[muppetdog]

I have had and do get all that crap. I have been going through a bout of burning/tingling/ prickly legs shins and sometimes hands and forearms. I get the strange tingling and other weird sensations in my arms and hands here and there.

Don't rule out Cymbalta side effects.

Have you been getting enough sleep? Is it broken and unrefreshing?

A lot of the time you have to just experience the sensations and say "yep, that's going on right now." It may not be normal but the only way I have remained sane is just to make notes of the sensations and when they leave and from experience I know they eventually have to go away.

The fatigue is a real tough one to deal with. I have had to drag myself out of bed even after 8-9 hours of sleep for the past 16 days. I am not sure what caused it but I think I am on the tail end of it. I have had it before.I don't even know if we have the same thing I do, but I really think in time a your symptoms will subside. That's the way its' been for me. I still don't know what I have even after seeing a million doctors; but I have learned in the last two years, that every weird symptom that comes goes eventually whether its mins, hours, days, weeks or months. I hope you turn out to be the same way, heck I hope you just get better and don't have to worry about anything.

Good luck with your EMG. Let us know how that goes.

[TerryB2865]

Thanks for the good wishes. I think I need them. My hands have atrophied over the past month or so and I know they are weaker, although I can still type, turn keys, ties shoes, etc. Can still walk on heels and toes and I think I'll pass all the strength tests other than my hands. My grip is still OK. It's strange because it's both hands, not just one. I can walk about a mile or so and then my legs start to get stiff. Although if I take a break and sit for awhile, they recover. I am not sleeping well and have lots of anxiety. I still have no interest in the things I normally love. Have a wonderful GF, but am having ED (maybe due to anxiety). Started having tremors in my body upon waking in the morning and it takes me all I have to get going each morning. Once I get going I can get through the day. I just can't believe I'm going through this after having problems several years ago, recovering fully, and then having it hit me like a ton of bricks all over again. I will keep you posted on the results. Please send good karma my way.

[mwagner]

I'm definitely sending you as many good vibes as I can muster up!

Are you sure your hands have atrophied? Or are you imagining that they are.

Mitra

[TerryB2865]

I wish i could say imagined, but my palms seem shrunken in. i truly don't know what to expect Friday. my tests 8 yrs ago were clean and i pray it is the same on Friday. i do have paresthesias which i hope mean bfs or pnh.

[johnnythejet]

I wish i could say imagined, but my palms seem shrunken in. i truly don't know what to expect Friday. my tests 8 yrs ago were clean and i pray it is the same on Friday. i do have paresthesias which i hope mean bfs or pnh.

That's the anxiety talking. You can expect to be in the same benign boat as the rest of us.

[mwagner]

Terry,

Please see my PMs.

I suspect you're dealing with Chronic Fatigue Syndrome. Your "hollow" hands are a similar symptom to other CFS sufferers. And CFS sufferers also experience muscle twitching.

CFS is a very difficult diagnosis to get. Basically, they have to rule out everything else, but you might want to make an appointment with a rheumatologist.

Mitra