Question about a member

[damaged]

I was just re-reading harleytoride's story. It's striking how similar our stories are. I looked at his profile, and he hasn't logged on since 2009. Does anyone know how he's doing? Or how I might contact him?
I'm interested in members that did hard physical work, and are functionally crippled.
Only to compare notes.
Thanks,
Mike

[cjbrooksjc]

I suggest Googling Harley2ride or Harley2ride+statins . I found a few leads that way.
Email IDs don't seem to be a part of this site any longer.

There are also other Statin AE sites, Stoppedourstatins is a good one.

Best,

Brooks

[damaged]

Thanks Brooks.
I'll try that.

Mike

[spaceadmin]

Harley2ride last posted on 11 Sep 2009.
I just sent an e-mail that people were wondering how he was doing and sent a link to this thread.
admin

[harley2ride]

I'm still alive. Just haven't been in here in awhile..
I have good times and bad times, but I'm still out doing all I can do to enjoy life. Just be careful and don't overdo it like I have a habit of. I tried to do a ceiling rope course a few months back, and I'm still recovering from the damage I did to myself. Once you piss these muscles off, it takes awhile for them to forgive you again.

[cjbrooksjc]

Harley: I have found that a good steam room will help sweat out the "toxins" built up by exercise. Whether it's excess lactate or the crippled mitochondria of our bodies inability to perform their "housekeeping" function, I don't know. But the skin, because of the function of perspiration, is often referred to as "the third kidney", and I believe it is that purge effect which reduces my muscle ache after exertion. The problem, for me at least, is finding a steam room. Dry heat is easy to find (sauna); I even have an Infrared sauna at home, but the steam room works best for me, and they seem to be a rare gem any more. FWIW

Best,

Brooks

[harley2ride]

Thanks Brooks. I will have to give the Steam room thing a try. The past few weeks I have felt like I have tendonitis, arthritis, and god knows what else. Horrible muscle cramps and pain, joint pain, knee pain, etc.. Then I remembered that I had not taken my Lyrica for about a month. I started back on it a few days ago, and it is helping a bunch. Still have some issues, but far better this week.

[cjbrooksjc]

I hope the steam helps. It also makes me sleepy to the point of needing a nap afterward, BTW. Anyway, it's good to hear you've found something that helps, even though it's another pill. Be well.

Best,

Brooks

[damaged]

Thank you all very much for your efforts.

It's been about 12 years since the damage got to the point of crippling me. And, I'd have to say that it's been slowly getting worse rather than better. This is while trying various forms of light exorcize, every supplement mentioned anywhere, massage, acupuncture, etc.

I try to strike a ballance between over exertion (which was a big mistake that I made early on), and doing so little that my muscles atrophy. But I have no idea if I'm doing too little or too much.

Unfortunately, I've been unable to find anyone else that describes the extent of the damage that I seem to suffer. Harley2ride's damage sounds very similar to mine in the "my story" thread, but when ceiling rope courses are mentioned in this thread, for example, I don't know how to interpret that.

When I was working, I was building large custom homes. My point is, this was very heavy work and I was very accustomed to sore muscles. Carpenters handling over-sized materials generally stay sore even when in the best shape. I was stronger than most, and in fairly good shape.

I feel the need to be clear, here. Over the years, I've amputated fingers, been shot through the center of my femur with a nailgun, etc. Pain has always been something that a man just works through. It's part of life (certainly a carpenter's life, anyway), so keep quiet, and deal with it.
But this pain is a pain from a different planet. It's relentless. It's progressed to the point of being present while at rest. Feeling pain while at rest has been relatively recent (last three years or so).

I should also point out - if I do absolutely nothing for 24 hours, the following day I feel almost normal. By "nothing" I mean lay around, only getting up to use the restroom. I often do this if I know that I need to go to a wedding or some other function the following day. I can then walk and stand for a few hours before the pain stops me. This is then followed by 2-3 days feeling like my legs have been beaten with a baseball bat.

I wonder, would Harley2ride say that there's been an improvement since the initial damage? I ask as one that has a hard time walking more than 100 yards, and a ceiling rope course would be out of the question.
Would most here say that there's been improvement with time? Or, are you getting worse?

Thanks again to all. This is the only place I've found where the members have any idea. I appreciate the efforts.
Mike

[cjbrooksjc]

I would say I have improved from my worst, but my worst (2005-6) had me preparing my family for my passing. I have gained back around 30% of my loss, but I still have exercise intolerance. I go to the gym and try to work out but I may still overdo if I'm not careful and pay the price of overall body discomfort for a few days. I have found that (and I may misspell this) Loratadine antihistamine helps when my pain, esp in the legs, gets bad. Loratadine is not the brand name, but generic tabs work as well and are more reasonable; ask your Pharmacist. About 45 min after taking a dose, the pain begins to subside. This helps reinforce my belief that the major adverse effect of Statins presents as an auto-immune problem. I also try to keep to a low carb diet (NO sugar, very little bread or wheat, and very little starch; esp potatoes). As far as I can tell this "syndrome" is a "Long day's journey into night". There is no cure, but there is improvement, and the best we can do is stay alert to our body's signals, and be resolved to continue.

Best,

Brooks

[David Staup]

" I have found that (and I may misspell this) Loratadine antihistamine helps when my pain, esp in the legs, gets bad. Loratadine is not the brand name, but generic tabs work as well and are more reasonable; ask your Pharmacist. About 45 min after taking a dose, the pain begins to subside. This helps reinforce my belief that the major adverse effect of Statins presents as an auto-immune problem."

You may not have seen this Brooks:
"Summary
Researchers in Dr. Lawrence Steinman's laboratory at Stanford have developed a new strategy for
treating or preventing autoimmune diseases with antihistamines. Using the EAE mouse model for
multiple sclerosis (MS), the inventors have shown that the disease course and severity can be
ameliorated with daily administration of antihistamine."

"http://www.ctsaip.org/create-pdf.cfm?id=5893

Daily administration of antihistamines may give you even more improvement.
Because of my experience with low dose Benadryl, I would suggest trying 1/4 of the normal dose taken 4 times per day. This totally eliminates the drowsiness normally associated with some antihistamines.

Also I suspect you want one that crosses the blood/brain barrier like diphenhydramine, but it is a worthwhile experiment to see if one would get memory and cognitive improvement with an antihistamine that does not cross the barrier.

David

[harley2ride]

It took me years before I noticed improvement, and that was years of learning to not push myself and take it easy. That was years of taking twice a day of lyrica, COQ10, and a supplement from vitacost called Mitochondrial Energy Booster which has Vitamin D, Vitamin E, Niacin, Folic Acid, Vitimin B12, Magnesium, Acetyl L- Carnatine, Alpha Lipoc Acid, and a couple of other things. After years of taking that stuff daily I was able to back off and only take it occasionally. But the times I overdo it, I pay big time and it takes a long time to recover. I built a workshop and all the ladder climbing with materials, made my thigh muscles to where they were literally giving out when I tired to walk. It was all I could do to walk for a week or so. It is a real pain in the butt to learn what the limits are without crossing them.

I too learned long ago about the benefits of taking benedryl on a regular basis to help with muscle pain and cramps.. My MDA doc even said that he wasn't surprised that I noticed improvement by taking them.

Part of managing the daily aching and pain, spasms, cramps, was helped by taking martial arts classes years ago. I learned to ignore the pain and refocus my mind on other things. Even still there are plenty of times where it drags me down. I just refuse to succumb. I pace myself and do most of what I want to do. If I know I will be exerting myself one day, I plan on two or three days of light duty to recover.. It is a huge lifestyle change. I was one of the very early people affected by Statins. It took me over a year to convince any doctor that I actually had a statin injury. At least now they know more about them..

One of the things I hate the worst, is with what I have my muscles don't process fats or sugars well, so I really have to watch what and how much I eat. I literally eat two very small meals each day, no pop, lots of water, and I can't lose a pound...

[cjbrooksjc]

David: Thank you, yes, I know you have been taking LDB for some time now. I did try it, but likely due to my poor appliance to this regimen ( I was constantly forgetting a dose or two) , I did not find it too helpful. It was easier when I measured the appropriate doses (15 to 20) into a half-pint bottle and then took a swig from that shaken mixture four time a day (when I remembered). Even then I still fell victim to my own inconsistency. No, I did not see the link you provided; thank you.

Harley: I am quite familiar with the "dead legs" syndrome. As Damaged wrote, it is indeed a different sort of pain; "relentless" is a good descriptor. Also, on those days it became nearly impossible for me to get to sleep, and the sleep I did get wasn't recuperative - I would go to bed feeling like hell and wake up feeling the same way. That's when the Drs diagnosed "RLS" (restless leg) and wanted to put me on yet another pill and fit me with a C-Pap unit. I told them, politely, to kiss off.

Finally, the weight loss problem is a real aggravation, and I empathize completely!! I went from 210 lean lbs to 252 obese ones. I've dropped a few, but it's been a real workout. And I now need to drink at least two quarts of water daily. Interesting that our mitochondria a) generate nearly all of the energy we use, b) take out the trash from our cells, and c) maintain proper cellular fluid levels, and all three of these functions seem to be downgraded following a Statin regimen. This CAN'T be coincidental!

OK, I'll quit. I'm on the verge of a rant.

Keep the faith. I hope you all improve.

Best,

Brooks

[damaged]

Brooks
"OK, I'll quit. I'm on the verge of a rant."
....
Please. rant away. Misery loves company, and hearing that I'm not alone in this struggle assures me that this is not something that I could just easily overcome. As an example, I was 210-215lbs for my entire adult life. A bit of a gut, but I had 18' biceps. A year after my legs quit on me I was 263lbs.
..

harley2ride
Thanks for the info. I tried lyrica, but noticed no improvement and it seemd to be the cause of some very dark thoughts. After stopping it, I read that it can cause depression in some.
I intend to try "Mitochondrial Energy Booster". I found it for $15 for 120 count bottle.
..

harley2ride
"I built a workshop and all the ladder climbing with materials, made my thigh muscles to where they were literally giving out when I tired to walk. "


While I was still working, I took what I thought were easier and easier jobs. The last one was installing crown molding and baseboard. With the "aid" of Vicodin, every other day, I would climb a ladder and do squats an estimated 400 times in six hours (that was all I could take). I did this for 9 months until I couldn't walk from my truck to the house.

It was during this time that I guess you could say I was refusing to succumb. While I still try to do that occasionally, I sure hope that we're not doing further damage. But, as you say, life goes on and I refuse to drop out completely.

Most importantly - you mention your "MDA doc".

I've asked my primary doctor where to find one of these, and he gave me a pamphlet put out by the main MDA organization. I tried calling them and was told that they would send me some info. But all I get is mail for fund raising. etc.

My question, is it easy to find a doc that specializes in MD that will see you even though you technically don't have MD? If so, how did you find him?
I'm curious as to if there's specific methods for relieving pain from Mito damage.

Are those with MD typically in the same type of pain?, etc.
Stretching seems to help, but causes the muscles to be sore to the touch later. Deep tissue massage seems to help, but I'm curious as to how they/if they do it.

Seriously - thanks for taking the time. One of the saddest things is that I look normal. And at times I feel that there are those that think I'm making too much of this. So, it's really helpful to hear from you guys.
Mike

[David Staup]

"One of the saddest things is that I look normal. And at times I feel that there are those that think I'm making too much of this."


Mito is considered an invisible disease. When I tell people that I am disabled, that I have a metabolic disease, more often than not I get "you don't look disabled"

to which I will often reply: and you don't look stupid.

I have corresponded with many who share our problem and roughly 40% have been abandoned, some by their whole families... all because we look normal and most everyone is ignorant about metabolic syndromes, including most doctors.

Those that think you are making too much of this.... even after seeing the change occur, are worthless to you ... I wouldn't give them or what they think a second thought.

David

[harley2ride]

How I got to the MDA, was that since nobody back in the early days of my disease believed that it was Statin related, the figured I should see an Arthritis doc. The Arthritis doc quickly figured out that I did not have arthritis, and actually helped me research the statin stuff. He first linked me to Dr. Phillips at Script Memorial in San Diego where I finally got a Statin Myopathy diagnosis. Then later when the myopathy didn't get better, the arthritis doc was the one who referred me to the MDA doc. First visit to MDA doc, and he said: "You have some type of Mitochondrial Myopathy which was likely in part caused by the statin injury." Walla..... While he can't do a whole lot to help, he does all he can to find things that won't hurt me and it is nice to have a doc who understands the issues I have to deal with. So try to see if you can get a primary doc to refer you..

On another note, I have been trying for years to get the VA to help out with my stuff, since they are at least in part to blame.

In 2004 when I first figured out that I had a Statin injury, the military activated me and sent me to Fort Bliss, TX. They did so knowing that I had a possible Statin Myopathy, and when they sent me they said they would fix me up. After 28 days with none of my normal meds, and them doing nothing to help (instead they had me walking all over the place, marching with my unit, training, and further aggravating my injuries, and giving me multiple vaccines, including Anthrax), they sent me home. It was shortly after that that I kept getting worse and found that the Statin Myopathy had progressed into Mitochondrial Myopathy. Even after giving the VA doctors notes from before going to Fort Bliss and only having symptoms of muscle pain and muscle spasms, and then just 28 days later, additional symptoms of fatigue, memory issues, frequent fevers, slow muscle recovery after exertion, and many other new symptoms, they are trying to claim that they didn't contribute to my problems. Amazingly, out of thin air, my classic Statin Myopathy symptoms, in a short 28 day time frame, just magically changed into new and different symptoms. It must have been the unicorn that they flew me home on.

[David Staup]

"Amazingly, out of thin air, my classic Statin Myopathy symptoms, in a short 28 day time frame, just magically changed into new and different symptoms. It must have been the unicorn that they flew me home on. :

Maybe not

I posted this Jan. 25 2014
First a little background on my acquired mito.
I was put on the statins in may of 2000 and rapidly declined to roughly 50% where I struggled for 5 years. I then stopped the statin, took a less physically demanding position where I continued to struggle. 18 months after I had stopped the statin...I experienced, over the course of one month, a most remarkable recovery. I went from 50% to 80% and I can't describe how GREAT that felt. That lasted for 4 months. I had a bladder infection that required a visit to the doctor where I was talked into a physical and, eventually, I was talked into a non statin cholesterol lowering drug and within 2 weeks I was far worse than 50%. Seven horrible months later I was effectively disabled...Remember 18 months...a 60% improvement over the course of 1 month.

Do you believe in coincidences?
I have just completed my 19th month on LDB and what a remarkable month it has been. I don't know where to begin!
On the background Prior, to the LDB I had been cycling between 160 lbs at the end of winter (low activity) and ~128 lbs by July after the spring rush. I would stay at the ~128 through the moderate activity summer and early fall when I would enter the low activity and regain the weight....I started the LDB in may at a weight of 140 where I stayed +/- 2 lbs... Until ...Now begins the list of improvements in order of notice:


I suspect that this has to do with mtDNA "quality control" :
*http://www.sciencedaily.com/releases/2014/01/140120090420.htm

and repair:
*http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2442166/

The science on this is not yet mature but ....