I have energy, but my body isn't cooperating!

[WACVet]

It seems the amantadine is working (or all the vitamins I stated taking), as I feel (on the inside) more like me. I have energy, want to do things, but my body is NOT cooperating! I tried to cook dinner, couldn't stand there, had to get a chair to cook from. My legs feel as if I just ran a marathon with my arms going right along with the legs.

Has anyone else experienced this with amantadine, and will my body catch up to me? I'm thrilled not to have that over-whelming fatigue, but what the h3ll can I do with the energy, if my body wears out so fast? This really SUCKS!

[rdmc]

Well I don't have any experience with the anti-fatigue meds (except coffee.)

But what I wanted to say was oftentimes MS presents a catch-22, so to speak. In your case, energy versus symptoms at this point.

There are symptomatic meds for almost every symptom, but it's such a juggling acts that it boggles the mind to think you can get every symptom in check on any given day. And if you're like me, one symptoms will rear it's ugly head one day, another the next.

I have a baclofen pump...it's great, relieves spasticity and lets me walk more normally. But I have to be careful not to relieve all spasticity, or else my legs turn into "noodles." So I put up with some in order to walk and my walking "looks good", but because I still have some spasticity, there are limitations and I have to be careful not to overdo.

Just another Catch-22...and I'm sure there are many more that others experience with their particular symptoms.

[Shashi]

I tried amantadine, Provigil (which gave me chest pain), and Focalin. All they did was hype me up without giving me the corresponding strength I needed.

But what does help are the two antioxidants I've been taking since September 2009, alpha lipoic acid and acetyl L-carnitine. The reason is that they help all of the cells in the body metabolize energy better, so they're not just giving me false energy.

I no longer have that horrible fatigue, and I have the strength to go along with the normal energy that these supplements supply. They've given me my life back!

[WACVet]

Tomorrow I go to the VA's PM&R, so I'm hoping they can help a bit. I just kept saying the fatigue is the worse symptom, but to have energy, and not be able to do anything with it, is TORTURE! This is almost as bad as when one of my legs are numb, and I get an itch or pain in it! This can surely be a very cruel disease, giving and taking, never balancing out.

Rdmc, I know what you mean about the spasticity "helping", as there have been a number of times my knee would start to give out, then all of a sudden it would lock, preventing me from falling. It's so strange, as I have strength in my legs, but the more I use them, it zaps my strength rather quickly.

Shashi, I'm willing to try anything at this point! I miss me being me!!!

[Bob698]

There are times when learning to adapt are more important than getting back to "normal".
Using a chair when you cook is a great example of adapting to your situation.
Amantadine works for my "drowsy" fatigue but when my legs get tired it means I pushed it too far.

Before you start trying "anything", please check with your Neuro first. You don't want to get into a situation of over medicating yourself or causing a drug interaction.

Many neuros don't buy into the supplement stuff outside of normal vitamin doses (sorry Shashi, just telling it like it is ). Try asking them why and they should be able to explain it better.

[Shashi]

Many neuros don't buy into the supplement stuff outside of normal vitamin doses (sorry Shashi, just telling it like it is ). Try asking them why and they should be able to explain it better.

Always check with your doctor before taking anything, especially with these two supplements if you're taking thyroid or diabetes medications as they can increase the effectiveness of these meds and may require a dosage adjustment.

However, as for neuros not buying into the supplement stuff - if they ever felt the bone-weary fatigue that can rob you of the energy to even move, they would try whatever they could that worked. A lot of people have gotten good results with these supplements, and they have been proven to be effective in university studies against fatigue caused by MS, chronic fatigue syndrome, cancer, aging, etc. They're actually natural substances that your body needs anyway. And maybe the reason the neuros don't buy into them is that they don't have any experience with them. They're really quick to write out a prescription for drugs though. I'd far rather take these antioxidants than a stimulate drug that can cause all kinds of problems (like the chest pain I had from Provigil.)

I could not function without these supplements. The few times I've forgotten to take them, the fatigue returned with a vengeance. They keep me functioning and able to work 14 hour days at the school where I teach. I wouldn't last two hours without them! I bless the day that I read about them here on MSWorld and decided to give them a try. The rest, as they say, is history!

[WACVet]

Bob698, I am one to "over do it", and though I've been dx'd since 1997 (they believe my 1981-82 ON was one of the first symptoms), I'm still "trying" to accept it (guess I always will be in that stage). My Neuro put me on 100mg amantadine twice a day, but the second dose caused agitation in me. I've decided one a day is enough. I know I can not, mentally, take having energy and not being able to use it, as it was sheer torture for me.

Yes, the amantadine does the same for me, takes away that "drowsy, I need to sleep/vegetate" feeling, which is a blessing for me, but like you, my legs aren't getting the same message! I'm going to have to go one day at a time, and see what my hurdles are. I'm in the process of developing a chair that I can use in the kitchen! I refuse to give up.

Shashi, I do take supplements, and the VA (Veterans Administration, I forget some people don't know what VA stands for) is aware of them. I can say that I did start to feel a little better after starting them, but the real push was the amantadine. I'm on B6, B12, D6, Multi Vit, Omega 3, Co Q10, and biotin.

Sometimes I just laugh at some of the weird/crazy symptoms, some symptoms I find fascinating, but this fatigue, inability to do what I feel I should be able to do, is so frustrating!

[Bob698]

It's just my theory, but I think what we're experiencing with tired legs is the lack of controllable muscles.
If MS is goofing with our nerves, I think its possible to lose some of the muscle control in a given area (like, the muscles that move your leg) but not in all the muscles.
In other words, the muscles with good communication try to take up the slack of the muscles that went on vacation and they have to work harder, which is why we feel tired.

[WACVet]

Bob698, I agree with you. I know my legs hurt, as if I worked out! My daughter massages them, and the "knots" are UNBELIEVABLE! A few times I wanted to hit her, and she went to school for massage therapy!

I'm going to ask a lot of questions tomorrow, as I want to have some understanding of what is going on with the muscles.