Real effect or psychosomatic reaction

[cjbrooksjc]

I have been taking the recommended meds (CoQ10, L-Carnitine, etc.) for the last five months. This AM I had to skip the morning meds ritual to help a family member with something physical. In 4 hours my elbows and forearms ached, my back hurt, my heart became slightly arrythmatic, and my hip joints were killing me. When I got home I took my handful of pills and crashed into a chair. Within the hour I began to feel better. Is this my imagination? Can these chemicals work that quickly? Or is this more likely a psychosomatic reaction, a little wishful thinking on my part. I'm uncertain enough without unknowingly coloring the outcome to suit myself. Any experiences like this?

Thanks,
Brooks

[AnneW]

Hi: Psycosomatic? I take L-carnitine 4 times a day, and if I miss one of my doses, within two hours my body makes me VERY aware of it! The muscle pain becomes very intense.
AnneW

[Ray Holder]

Carnitine acts within about 3 hours. When I was in hospital 18 months ago, my CK figure was 500, after having been deprived of carnitine for about a week. I took my first dose, after speaking to the consultant, about 6.30 am, I had a blood test mid morning, result, down to a normal 200, the medics were quite amazed. I have found that forgetting a dose makes my back dreadfully weak, so yes, carnitine is quick acting and soon lets you know when some more is needed.

I also find that if I miss one of my 3 Q10 doses of 200 mg Q10 in the day, I get angina pain about bedtime, it's that necessary for me, so your findings are real and not imaginary.

Ray

[Darrell]

I feel the benefits of L-Carnitine in less than an hour.

I also used to start hurting again after sometimes forgetting my lunch dose. Eventually I learned to carry L-Carnitine with me at all times (in a keychain pill bottle) so I could take it ASAP if I missed it at lunch time. I rarely miss anymore though.

The Q10 benefits to me are not as obvious as they were when I first started taking it, but I'm not stopping it. Ever.

[cjbrooksjc]

Thank you anneW. Ray, Darell for your immediate responses. I truly can't tell you what a relief it is having someone empathetic to "talk" to. Four years ago I was a 60 yr old dynamo; today I am a miracle: a walking fireplug. I know from the forum what 'meds ' to take to keep active, but I have been taking them once a day. From you posts I assume I should parcel them out 1/3 or so over a 16 hour period. My family are concerned but not as cognizant as those of us who are going thru this. Thank you so much for your resosnes to my, so far, unenlightened queries. Hopefully, in the future, I can help others as you are helping me. I'm very grateful!

Brooks

[Darrell]

I take my L-Carnitine in divided doses at or near my three meal times. I'm taking 2,500 to 3,000 mg per day. 1,000 mg will carry me from breakfast through lunch, and another 1,000 mg at lunch will carry me through dinner. I usually only take 500 mg at dinner because I'm pretty sedentary after that. I'll take 1,000 mg at dinner if I'm going shopping or staying out very late or something like that after dinner.

I never delay my 7 a.m. morning dose. 16 months of feeling like crap without it is still etched in my brain, and I'll be feeling like crap again by 9 a.m. without it.

On the brighter side, missing a dose now and then let's you know that taking it is still worthwhile.

[cjbrooksjc]

Thanks' Darrell. I admire the fact that you can feel grateful you have discovered L-Carntine. I may get there in time. Right now I'm just angry I have to take it AT ALL, and it's begining to look like I'll have to take it the rest of my life (thank God I'm not 30). Do you ever have those regrets? Forgive me, but I feel physically violated and just so unbelieveably pissed about this situation, and you all seem so stalwart and, I don't know if I'll ever get to that point...ever! I'm not psychotic, just very angry. Sorry, I was lisenting to an NPR broadcast today ,and they had he chance to grab this subject by the throat and kill it on the air and they demurred.... anyway, thanks for your help; really, THANK YOU!

Brooks

[AnneW]

Hi: The anger is very normal and part of the process. There were nights (and days) where I literally "howled" at the moon over the disregard and total refusal of the medical field to acknowledge the fact that my life was destroyed by statins. I would get so angry that I would want to throw and smash things!, but lucky enough I wasn't physically able to. At this point (1 1/2 years later) I try to be thankful that the pain is no longer 24/7 and that thanks to this forum I found the information I did. Hang in there and try to concentrate on every little improvement - it helps me to maintain a positive attitude most of the time. I still need a walker to get around but at least my hands and fingers work enough that I can actually keyboard again.

AnneW

[redheadedmary]

Brooks, guess what, I am only 32 and going through this too! Ha Ha! I kinda laughed at your post when you said "thank God I'm not 30." I am really pissed too though. I have four small children and it's very hard to take care of my family and my house in this condition. I just hope its temporary. I have been off the statin drug since the end of October, thats when the muscle weakness started for me. We had to drive around the neighborhood for Halloween because walking at that point was too hard on me.
Mary

[Darrell]

Angry? You can bet I'm angry too! I was 50 when I stopped my statin. It pretty much wrecked my career. I couldn't do the necessary travel anymore. And I had no disability insurance. A year later I was somewhat improved but not sure my leg was going to survive the repeated damage of trying to live a semi-normal life in spite of pain and exercise intolerance. Not too sure about my heart either. And I lost a lot of respect for the medical profession.

L-Carnitine turned my life around. And shortly after starting it I changed doctors to get that hostility behind me too. Angry? You bet I'm angry. But I have to bury some of it so I can live my life. Coming here and trying to be helpful is my daily therapy.

[cjbrooksjc]

AnneW, Redheadedmary, Darrell: Perspective is so important; I appreciate your helping me put my condition in it's proper place; that is, I am not 32, don't need a walker, am greatly improved since last August, and am grateful to have found L-carnitine, etc. Hopefully time and careful consideration will reward all of us.
Regards,

Brooks