Right now I can't walk.

[pmgamer18]

Nancy thank you for the reply.

Yes your right and yep I over did it yesterday Dr. told me to try to walk 30 min.'s a day even if I do this 2 min's at a time.

Well when we left the Dr.'s office we went out for lunch I told my wife to park the car and I would walk with the walker to the door. I was OK doing this no pain then we eat and I walked back to the car all was good. I got home and later that day I walked around the house 2 min's by the time I sat down I was in very bad pain.

Last night I could not sleep and I am on pain pills.
• Darvocet/Acetaminophe/Propoxyphe 650mg/100mg Po Tab. 3x’s/day.
• Tylenol Arthritis Pain 2 tablets 3x’s/day.

This morning I can't stand and walk with the walker without leaning on it very hard. So what ever I did I over did it. So today I am just going to rest. When I feel better I will try walking again but much less time at it working my way up.

Most of the time I feel so much better after I eat and take my supplements in the morning. But not this morning.

Thanks I will go much slower at this then I did yesterday.
Phil

[David Staup]

nancy you should read the exercise section in this booklet

"http://drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

and this study

"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2680051/

also you might find the following interesting:

"http://www.iacfsme.org/CFSandtheExerciseConundrum/tabid/314/Default.aspx

and

"http://www.cfsresearch.org/cfs/bell/cfs-mitochondrial-disease.htm


David

[lars999]

Nancy,

I could write a sentence much like this excerpt from one of yours, QUOTE: "...now I am also experiencing tendon pain, especially near the attachments to the bones. I also wonder about changes in the ligaments, ..."

I have this most pronounced at the lower "faste" (fastening point -- what ever you call it in english) of deltoid on left arm. It has been with me, intermittenly and sometime constant, for last few years on Lipitor. Now it is sometimes much worse. I also have it with left elbow, again varying with little consistant apparent cause.

Only recently, sort of, am I seeing consistant relationship of additional effort in workouts and consistant improvement in stamina and muscle strength, but only for some muscles.

QUESTION: What causes persistant muscle shortening in statin-damaged muscles?? I can stretch certain muscles in statin-damaged left arm and shortly after I have to do it again. These shortened muscles make it difficult to lift this arm up to and especially above shoulder lever.

Thanks,
Lars

[lars999]

David,

Thank you for those links to other medical issues, apparently caused by damage to mitochondria. I can see parallels twixt exercise-induced capabilities of CFS victims and my own problems with getting past presistant Lipitor damage to some of my muscles.

While still taking Lipitor, by attempts at returning to delightful hours and hours of cross country ski tours were consistantly turned into the following sequence. Ski for about 2,0 hours, with half of that spent in absolutely essential rest periods, sitting in truck for 30 minutes to recover before driving down mountain and 30 miles home, having to rest for 2-3 days before I could repeat this pathetic performance. This never changed all season, during 30+ such short trips. Sounds very much like CFS behavior.

My near-daily aerobic workouts on treadmill indicate I am now much better off than described above, but far from my previous abilities.

Thanks again,
Lars

[David Staup]

Lars,

If you look at the wide range of symptom sets of statin damaged victims you see all of the same in people with mito dysfunction from other causes.

some viral infections, mercury poisening, statins (and many other drugs), insectacides, and other chemicals are mito toxic and can cause the same range of symptom sets. there are 30 named mito disorders and probably 200 remain as yet unnamed...

the mito disorder communitties hold our only source of information and help.....it's just spread out amongst groups and not widely understood.


be very carefull, relapse potential from doing to much, either long or short term will always be high...for the resr of your life probably

David

[lars999]

David,

Thanks once again for a most useful post!!

Given what you stated in this last post, would you be so kind as to start another thread outlining the expected damage to mitochondria and how excessive exercise can exacerbate this condition? Thanks!!

This could/should be a useful guide as we read through a mess of reports regarding a bunch of medical conditions that have little in common with ours, other than mitochondria damage.

One additional question, maybe as much for Nancy as you: Which, if any, of these other mitochondria damage caused medical conditions are likely to be treated by Physical Therapists, etc. in such a manner as to be potentially useful to us?

Thanks once again,
Lars

[Nancy W]

As you might expect, this whole topic has only recently started to gain traction within the medical community, especially in the USA; witness most physicians' lack of understanding about the effect of statin use on the mevalonate pathway and the downstream effect on the mitochondria.

Also, understand that within the community of CFS sufferers, this comprehension of mitochondrial involvement is not all that old. Then add on top of that the deep suspicion amongst the medical community (PT included) of CFS being "all in a person's head."

Physical therapists do not see or regularly get exposed to this information. Perhaps a therapist who specifically works with CFS, but I don't know any. Or perhaps a therapist who deals particularly in neuromuscular syndromes like ALS, MD, or Mysasthenia Gravis. Most therapists I am around just try and apply the physicological knowledge they have relied on...I think with the development of more and more neuromuscular problems created by toxins, there is a whole new paradigm.

In particular, I have watched this with one of my sisters who has had CFS for many years, and who has had no luck in dealing with it. Her behavior confounded even me, I have to admit. (one minute she is fine, the next, in a wheelchair.) Of course, now I am learning perhaps what she has been dealing with all this time. It is humbling.

I feel like ever day is a whole new experiment for me, and from others here, I have learned to be very cautious about how fast I attempt to progress myself.

Now, if you search under David's posts, you will find that he has posted links to what is being done in Great Britain, who appears to be well ahead of the US in trying to diagnose mito problems. The new clinic for that sort of thing at the Mayo Clinic, doesn't really seem to have thier act together yet...

I have been reading all of David's links. It is daunting to try and figure out who to get it diagnosed here...one suggestion has been to look within the musclular dystrophy community...but the path is not clear, nor conclusive.

Empirically, if I take the supplements that are supposed to support the mitochondria, I am a lot better. If I skip them, within 48 hours, I am worse. So, with time, we all gain some wisdom about our own bodies.

Dr. Graveline, I believe, has been working on the mitochondrial issue. From what I read, he is also suffering with his own mitochondrial issues...so there is no further information about whether his book will get completed and published.

The further I get into this, the more I admire Dr. Graveline for his courageous fight to get statin damage recognized! It drives me to learn and to become an activist in this fight. When I get going on this subject with physicians I am around, I quickly surpass their understanding and I can see that they cannot argue with me. That is great and all, but it does not get help to me or you.

Well, I will get off my soapbox for now. Can you tell I get all steamed up about this?

Each person is so different.

I agree it would be good to have a new category where we can write about our energy/mitochondrial issues, especially so that people new to the site can find the discussion...

Okay now I really am done. I have to cook dinner.

Nancy

[lars999]

Thanks Nancy for pointing out that David's citations are from Britian. I had missed that. Given your comment that this "mitochondria" damage awareness is much more developed in Britian, I will do some searching in contries where their language is easier for me. No idea what I will find but, often there is a person or three in those contries that is well out on forefront of some subject. Maybe I get lucky!

I do agree with your comments about Duane Graveline!! It was his well written little essays that gave me the first solid pointers of what to look for when I first started Internet searching for explanations of what was happening to me. That opened a lot of doors, which have lead to more doors, and those doors to others. And now this mitochondria damage explanation is promising even more informative doors to open. There is no end .....

Thanks to your comments about what PT likely don't know about this mitochondria stuff, I will hold off even longer in searching for the possible lone savant.

Thanks again,
Lars

[Nancy W]

Aside from wishing we never took statins in the first place, what I think we all probably wish for is a doctor, a therapist, a clinic that says, sure, we know how to help you, come on in.

[lars999]

Hi Nancy!!

Finding such ready made assistance would sure be great! However, at this point, after my experience with Lipitor and the GP that perscribed it, as well as some far worse, previous experiences with doctors, I have now relegated ALL DOCTORS to consultant status. And that is just the handful I pay any attention to.

In other words, Duane, Uffe and Beatrice, in particular, have yet another avid understudy re statin effects. Hope to meet Uffe and Beatrice some day -- Lund, Sweden and San Diego, Cal are places I hope to visit again.

My goal of getting it all together myself recently met with just the success I hope to acheive consistantly. On a recent, essentially emergency visit to local doctor, after describing whats and whys I was there, doctor was silent for a long bit and then said "You make it really hard for me, you know that, don't you? Well, reason for that utterance was that I had just provided him with correct diagnosis, treatment and had already started treatment, which has now corrected the problem. Yes, we had a successful consultation!

Next target doctor is my cardiologist and topic is potential Lipitor damage to my heart muscles (congestive heart failure). He does not want to hear about statin damage to mitocondria -- but, I think he is gonna hear a lot sometime in coming months.

All of this does take a lot of time spent in Internet searches and diverse post-graduate self education, just like you and many others that post here do. Fortunately, I am retired and this is my primary consultant activity.

May each and every one posting here be successful in their efforts,
Lars

[pmgamer18]

Just an Update I am doing better it's very slow so slow you can't tell your getting better. The other day we went shopping for a new Recliner Chair at ArtVan's. I had to walk a long way in the store sill using a walker but here in the store I could tell I am getting better. And later that night I was not sore.
Phil

[pmgamer18]

I need some help?

I think my Dr.'s are holding me back from my recovery from Statin Drug damage.

Just to update people 2 yrs ago I have Heart Bypass Surgery for 2 blockages. The surgery went bad I was opened up 5 times due to infections each time I was opened up they had to put me in a coma and keep me opened until blood thinnners were out of my body.

The total time I was was out cold was 13 week. After this I went into a Therapy ward for 5 weeks then was sent home. When I got home I could not walk without a walker I was told I lost a low muscle from being in this coma.

From day one I was on Statin Drugs and complaining about the pain I was in doing Therapy. Yet over time I was able to walk with out a walker but not long at the most 15 mins and I would have so dam much pain I needed to sit down the rest of the day.

Now I feel all this time it was not the coma I was in or the loss of muscles. I feel it was the Statin Drugs and I never had high Chol. in my life.

Now today I am in a lot of pain over the 2yrs I have been on Statin Drugs it got worse until I could not walk anymore or stand up.

So now that this happened my Dr.'s know about about treating me with CoQ10 and the supplement we talk about needing here. I am off Statin Drugs now 3 months.

On the supplements I feel I am getting better except for one problem. My Dr.'s keep telling me I need to keep walking at least 30 min.'s / day even if it's only 2 min's at time.

Here is my problem I do this say on a day I feel better like yesterday. I walked around the house with out my walker. But I started feeling very bad pain like all the other times I try to walk 30 min's.

Now today my pain is so bad my pain pills are not helping. I feel good in the morning try to walk and end up in bad pains by mid afternoon and though out the night. Then I for days I can't walk without being in pain.

I think trying to exercise is doing damage and setting me back. I tell my Dr.'s this and they keep telling me I need to walk.

So I said why not wait until this damage gets better then try walking and getting exercise. They say no you need to exercise and walk or your not ever going to be able to.

I am between a rock and a hard place here need help with this. I have good days exercise a little and end up back where I started. Even on days where I feel better in the morning and don't exercise I still have bad pain by dinner time.

Sorry for the rant just need input on how everyone got past this dam pain.

With my Dr.'s I am damed if I do and damed if I don't.
Phil

[lars999]

Phil,

I had a similar but less severe situation a few years ago, while I was still on Lipitor but had not yet been hit really bad with statin adverse effects, or even knew they existed. I was able to walk for about 40 minutes and then absolutely had to stop and rest for at least 15 minutes, either sitting in suitable chair or flat on my back. Sleeping was a chore that I often did not accomplish very well. NSAIDs did not help, nor did anythings else much. As it turned out, walking was really bad thing to do because it was making underlying problem worse.

IF indeed it is statin-damaged muscles, perhaps plenty of Acetyl-L-Carnitine will be useful, as it appears to have been for many of us. CoQ10 was good for much improvement, but, additional improvement only came after I started taking Acetyl-L-Carnitine daily, 1500 to 3000 mg per day. This is not a quick fix, especially if a lot of statin-induced damage has been done.

I wonder if something like I describe below could be active with you. IF so, until found and fixed, walking may only make it worse.

There are plenty of muscles, tendons, ligaments, spinal problems that may not be major with folks in good physical condition but that can be nasty players when atrophied, inflammed, swollen and then overused -- easy if one or more of these are in bad condition. These may not be major muscles or ligaments. There are some minor muscles that can become quite painful, ditto for ligaments. Being forced to sit or lay around too much has always made such problems worse for me.

My approach to these things is to do as much probing with fingers as I can in attempt to locate sore spots, or have someone else do it. Stretches can often find such "angry" spots. Massages and/or stretches often reduce the problem. Sometimes a causitive defect is present -- until that is fixed, walking may just make things worse.

Hope this leads to something useful.
Lars

[pmgamer18]

Thanks Lars,

I am on all the great supplements for Statin Drug damage and it's helping but very it's very slow. I am lucky I don't have a lot of pain siting for laying down and I sleep good but I am on Pain pills.
Dr. has me on this for pain and when I got out of ICU and came home I was on this a long time because of a huge bed sore on my back side from being in that coma and not being moved because my chest was wide open.

•Darvocet/Acetaminophe/Propoxyphe 650mg/100mg Po Tab. 2x’s/day.
•Tylenol Arthritis Pain 1 tablets 2x’s/day.

Dr.'s have me on the following for the Stain Drug damage.

•Ubiquinol Capliques Featuring Kaneka's Qh (400mgs) 3x’s/day mercola.com.
•Lecithin 1200 mgs 3 caps 2x’s/day.
•Acetyl-L Carnitine 500 mg 3x’s/day.
•Alpha Lipoic Acid 250 mg/day.
•Krill Oil capliques 1,000 mgs. 2 with food morning mercola.com.

Here in MI. right now it's 6:30 pm and I am very sore at this time everyday.

I don't just sit all day I will not let my wife get things for me I get up and do things I need. I get up in the morning and fix my food and at lunch time.

I get out of the house with my wife going shopping or out to eat on good days.

When this damage hit bottom 2 months ago I could not do them things my wife had to help me even shower.

I just don't get them Dr.'s pushing you like this even here you read spacedoc and he says Dr.'s treat your heat put you on statin drugs and tell you to get exercise. I think when you have them sides from Statin Drugs and you exercise your doing more damage.

Even long before I hit bottom I would push myself to go out for a walk and to the gym. But after a short time I would be in so much pain I had to take a break.
Phil

[lars999]

Phil,

Getting statins on top of a major medical and prolonged emergency is really much worse situation than for me or any one I know personally. Seems reasonable for that to translate into longer, more difficult recovery times. Sounds to me like you are on the right track, even if it is frustratingly slow.

There are two things in my personal experience with muscle etc. pains that you are not mentioning and which have always been important to my getting past them. First is identifying the location of the pains, soreness, weakness. Second is any mention of any attempts to directly address this, say with massage, creams, heat or cold, support devices, focused exercises, etc., etc. But, perhaps you are experiencing the "global" pains that so many of us did early on?

My legs improved much, much faster than did my arms, which are still far from previous condition and still do not allow some of my once favorite activities, none of which require much arm strength or stamina. I quickly get into "show stopping" pains when I try those once favorite activities and have totally quit trying.

For a couple of months I could not walk more than about 200 meters without a cane, even with cane I had to stop lots. Calf muscles would start to hurt more and more, quickly stopping all walking, sometimes for hours. Even as my physical performance has improved, I find that specific muscles still have limits at which the old statin-induced pains start -- just that I can do more before the pain starts. I wonder if I will ever be free of such statin-induced limits?

I have no confidence in doctors or ordinary physical therapists for getting me past this. It has been all trial and error and going slowly.

Lars

[pmgamer18]

I don't have upper body pain in my arms or chest just my lower back, hips and legs. So I guess I am lucky in this area. I tried streaching and man dose that hurt.

I have seen physical therapists and how useless they are after I go out of the hosp. Even in the Hosp. they pushed to walk when I told them I was going to fall they said don't worry we got you I fell the got SHI*.

I try not to get mad about this but it's on my mind all the time.

I told them dam Dr.'s over and over again them Stain drugs are crippling me. And they say you just had heart surgery if you don't keep your Chol. levels in check your going to die. Now the one Dr. that took me off them said I never had high levels for Chol. and he feels I don't need them.

But it was the Dr. that did the surgery that put me on them and until he said stop them they kept me on them. I am mad as all He** about this.
Phil

[lars999]

Phil,

Being "Mad as Hell" at doctors prescribing statins probably describes all of us. I cannot imagine visiting again the GP that prescribed Lipitor -- my anger would be way too active.

Re stretches that really hurt. I have been there too, most recently with Lipitor-damaged left arm. What has worked for me was to do lots of "light", slow stretches, often using warm or hot towels on muscles being stretched, as well as massaging them before and after each stretch. Slowly, this was effective in giving me more use of these muscles -- sloooowwwlly. Muscles that hurt lots on stretching are muscles in bad condition.

Muscles that hurt that much when stretched may "simply" be muscles so degraded by atrophy that your present pains may be as much or more from that as from statins. I would guess that getting past the effects of atrophy is your immediate problem. Some friends of mine that had really badly atrophied muscles, years in the making, required months of slow progress to get to where they could embark on acceptably rapid progress from exercise.

When I was in the early, "everything ached" stage with Lipitor adverse effects, I would stand in hot shower for half hour or so. That was the only thing that reduced the pain overall. Have you tried that, or soaking in tub of hot water?

I have no understanding of why simple massaging my Lipitor-damaged muscles immediately before and after any stretching or attempts to use them helped so much -- whereas NSAIDs did not help. Without that massaging I could initially do almost no exercising of these muscles, or even much stretching.

Maybe this approach will work for you too.

I also had and still have another thing with stretches of Lipitor-damaged muscles that I do not understand. I would do a stretch and gain ability to exercise left arm by simple flexes (no weights) for a few minutes. Then I would rest for 10-15 minutes. But, now I had to stretch those same muscles again, before I could do a few more flexing exercises -- why??? NANCY! NANCY! WHERE ARE YOU?? Can you explain this?

Soon I will have spent as much time recovering from Lipitor adverse effects as friends have from chemo and radiation treatments for cancers. Just to lower my cholesteral to dangerous levels from completely healthy values.

Lars

[Nancy W]

Phil and Lars, I just spent an hour answering you both, and, I clicked on preview and my entire post apparently went to Mars! Darn!

Here is the five minute version:

Phil. As a 60 year old PT with adverse effects from RYR, I can honestly say that the experiences I am having run completely counter to everything I have known and taught as a PT for 40 years. My advice? Listen to your own body. Go slowly. Experiment with one thing at a time, whether it is changing your exercise routine, or trying a different dose of a supplement. Changing one thing at a time, and giving it time to work, or not work is the only way to figure out what does or doesn't work. Stay tuned.

And Lars. Read Phil's. I have the same issues you are having with stretching and stiffness...be gentle. Stretch slowly. Try gentle masage, or cranisacral therapy to see if it helps.

Going through this, for the last 15 months, has been extremely humbling.

More tomorrow!

Nancy

[pmgamer18]

Thanks Nancy and sorry you lost most of your reply. I am a mod at 2 forums and I can't tell you how mad one can get spending a lot of time typing only to lose it all. I don't reply to most posts at the forum.

I type up my reply in my Email then cut and paste it in this way if I lose it I just repaste it.

I understand what your talking about but for me I feel it's to soon. I going to take 4 weeks off from trying to exercise.

I am so bad off it's just all I can do to get through my day. I tried pushing myself and I end up in to much pain.

I have been working out in the gym from the age of 11. Back in the day we use to say no pain no gain. But we learned fast after just on injury. If it hurts don't do it it hurts me to just stand up walking the pain is so bad there are times I don't think I will make to the bathroom.

This morning after not doing any exercise I am in a lot less pain. I now know on days like this if I exercise I will have the next 5 days in a lot of pain.

On days like this that I feel better I still end up in a lot of pain by night time. And I feel that pain is from having to do the things one needs to do through out the day like going to the bathroom taking a shower fixing food and so on.

I am just so mad and upset about this and from what I have read about this there are no concrete treatments for this or Dr.'s that know how to treat it.

Every where I go when I get out people that know me ask me what happened. I tell them and much to my surprise they had the same thing happen to them or know someone that had this problem.

I am 66 and have family members that have pain in there feet and were told they have Neuropathy. Others have a lot of pain and are told they have Fibromyalgia. All of them are on Statin Drugs.

Now that they see what happened to me they asked there Dr.'s if this could be from the Statin Drugs they are on.

I need to say not one of them five in all ever had heart problems. Each one was told no this is not possable.

They stopped there Statin Drugs coming off them slow and are now doing much better and taking the supplements I am on.

Now I did not tell them to do this and 3 of them don't have a drug care plain and were paying lot of money for drugs that did not help them with there pain.

I feel it's like spacedoc said you have a heart problem Dr.'s fix it tell you to get exercise but then put you on Statin Drugs and this with the exercise damage your muscles. I feel this is my problem.
Phil

[lars999]

Nancy,

I look forward to what you write! Bummer that your 1st efforts went "pooff

Your "5-minute" version describes breifly pretty much my treatment and recovery plan. Happily, after over 4,0 months it began to really pay off, with indications that improvements will continue. Will I ever get back to "normal"? Maybe I get that answer in several more months. Yes, it has been essential to proceed slowly, especially initially, and back off immediately when some muscle or ligament or joint complains.

My aerobic progress has gone so far that this week that I have been jogging at 4,5 mph for 0,75 miles in 1/4 mile increments with an additional 2,25 miles at 2,5 to 3,5 mph walking. Heart rates with jogging get up to between 150 and 160 bpm with no felt adverse effects, either that day or the following, when I do it again. WAY, WAY more than I could do only a month ago. There has been steady, slow progress, with some "jumps" in performance, now and then.

Next week is cardiac stress test on treadmill. Hope to get to at least 160 bpm with 180 the max. FYI, doppler ultrasound and BP pressure measurements on my legs, from crouch to big toes, found no deep thrombosis or any solid evidence of any plaque at all. SO, ALL those pains that were greatly limiting my walking only 3 months ago, were Lipitor-caused.

By end of month I hope to be skiing, cross country and downhill, with care, of course. And lots of rest stops and constant monitoring of heart rate.

This improvement with legs has not been free of "little warnings" from some muscle or other. So, I know I am pushing the limits sometimes, but, not yet enought to cause the least setback. More and more, these "little warnings" appear to be normal messages to "back off a bit", as opposed to complaints from Lipitor-induced muscle damage. I am seeing evidence of new growth of capillary blood vessels. This has all been with legs, back and belly muscles.

I remain a long ways from similar level of success with arms, although past two weeks have seen major improvements, from show-stopping pains to maybe 50% recovery, at least for a short time with left arm and much better with right arm. Now, I am as much concerned with nerve damage to left arm as muscle and ligament damage. That arm has stopped two of my favorite activities, with no indications yet that this will not be permanent.

After cardiac stress test, I expect to add a few more molecules to my collection of suppliments I take each day. I also hope to push jogging up to 5,5 mph and incremental distances to at least 0,5 miles and total to 2,0 miles. No idea how long this will take.

Lars