Months have gone by and no real improvement

A forum to discuss personal experiences and share information on statins and other cholesterol lowering drugs.

Months have gone by and no real improvement

Postby kkolk » Fri Apr 18, 2008 12:04 pm

It has been months now since I have been diagnosed with a statin injury. December 22nd actually almost 4 months. I noticed a considerable peak of getting better and now have leveled off. I still need medication on a daily basis and walk with a cane. I am being told from my Dr that this is one of the worst cases he has seen. I m wondering is there anyone out there that has had a reaction that lasted this long? I want to so badly get up and just walk across the room, to crawl on the floor with my son, to clean the house for the day and yet cannot get up the energy or if I do I regret it because of the pain the following day. Is this what the rest of the life is supposed to be? Im hoping that someone in here has gone longer and gotten better, better by meaning 100% ??? Is this too long? or not long enough?
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Postby uncle2blade » Fri Apr 18, 2008 2:11 pm

kkolk, Please don't get discouraged, many of us have experenced set backs while in recovery. I've been off statins for 14 months now I still have some muscle pain and weakness but I would say I'm about 80% recovered. I am looking forward to 100% someday. There are people on this forum that have experienced compleat recovery.
I am pleased to tell you I am back to work three days a week. I played on the floor with my grandson last week and I am able to walk, and do steps, all pain free.

Best wishes, Craig
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Postby pgrimm » Fri Apr 18, 2008 9:36 pm

kkolk, you sound very familiar, just like Bill. His timeframe as a statin victim is right alongside yours. His doctor prescribed an antidepressant the end of December that coupled with his lovastatin had an interaction that manifested a horrible headache overnight, then within weeks, he was walking with a cane. Just like you. Just a couple weeks ago, he was able to put his cane down, and he was thrilled. He still has to use it on tough days, but not most.

Dr. Golomb says that some people are not taking enough or the right supplements. Please read the instructions she gave us yesterday. She feels that if you're doing it right, you will see some results, but your recovery has it's own timetable, that can't be compared to others. Take a look at your supplements, can you step them up to a higher dosage? Are they fresh, kept in a cool place, or are they exposed to hear? Are you taking vitamin E? Lots of variables that will make a difference.

Hang in there, we're all here for you, and the first time you have a really great day, you will forget how depressed you feel right now. It's a crappy thing that happened to you, that's for sure. I'm sorry, so sorry, and so mad, but please listen to the others who have had such strength to fight this, they have had such patience, sharing their information, learning, they are my heroes. Honestly. There is nothing about this statin thing that is fair, so bitch away, you deserve it, but please don't give up the fight.

Climbing down off my soapbox now.
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Postby epfleger » Sat Apr 19, 2008 8:14 am

kkolk:

Keep your chin up dude. With supplements things WILL get better. I played racquetball yesterday and it felt wonderful. I'm sore as a bastard today, but it is the great kind of sore that we all remember, not the statin nightmare aches and pains. If you had asked me just a few months ago if I would ever play again, I would have laughed (and cried) and told you that I was more worried about walking and playing with my kids.

Pgrimm and others on this forum have laid out the best of supplements.

These are:

CoQ10 - as much as you can afford (600 - 2400 mg spread out over the day, with meals)
Acetyl L- Carnitine and Alpha Lipoic Acid (cheap and easy to find in a combined pill of 500/150 mg. Take these three times per day before meals)

I also take fish oil supps three times per day and vitamin D once per day.

Again, please try to stay focused on getting on a supplement regimin and sticking to it. I think everyone on this forum will offer the same advice. Remember: things will, in all liklihood, get much better for you!
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Postby Darrell » Sat Apr 19, 2008 7:50 pm

Hang in there, kkolk. It was 16 months before I tried carnitine and got back to some semblance of normal -- if you call taking carnitine every four hours for the rest of your life "normal". That was two years ago. I haven't used my cane for two years. I'm not expecting to ever recover 100% at this point, but I'm most of the way there if I keep to my carnitine schedule and don't overdo it.
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