Right now I can't walk.

A forum to discuss personal experiences of Muscle Pain associated with statin drug use.

Postby vicki » Sat Nov 06, 2010 10:29 am

Just wondering if anyone else got big lumps in fromt of their legs? It felt lke I tore something, I was put in a full leg brace, with cruches and I couldn't walk on my right leg. I went to the emergency rm at the hospital, they took x-rays and dr. said as usual couldn't find anything and didn't know why I coudn't walk on it.

Next day and for 8+ yrs. now (never went away) I have a big lump ion both my legs just below my knees and if I feel that lump it has on the rt. side... feels like a hole sourrounding the big lump. It felt like something tore.

Another question.. did anyone ever feel like they had tennis elbow, too painful to touch both elbow. I have't seen these mention, so thought I would ask.
I also have of course all the other side-effects and still in pain and can't do much of anything. Good thing I drive for a living and sit on my butt most of the day. If I do anything exercising I hurt for about a week.
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Postby pmgamer18 » Sat Nov 06, 2010 10:54 am

Hi Vicki,

I feel your pain but no I don't have this problem did you see a diff. Dr. get a 2nd. opinion. What supplements and meds are you on for this pain.

I am thinking about trying Lyrica used for Figromyalgia but I need to talk to some one here that tired this. Reading about it turns me off about this.
http://www.webmd.com/fibromyalgia/guide ... -treatment
Phil
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? Torn tendons

Postby Nancy W » Sun Nov 07, 2010 6:28 am

Hi Vicki,

I am responding to your recent post, but I didn't look back to see your statin history...

If you read some of my posts, you will read that I am a physical therapist. My response to your question about tendons is not a "clinical" one, however, but a personal one. In some of my recent posts you will see that, despite 40 years as a PT, my own experince confounds me, goes against much of what I have been taught. This is probably why most docs don't "get it" when you come to them with unusual complaints.

My own experience spans the last 15 months. The symptom set began with neuropathy, then fatigue. One thing seems to blend into another. For the most part, the neuropathy and fatigue have ever so slowly gotten better with supplementation. But lately I am having some tendon issues. I would say that, at times, it feels as if the tendon could, or is, tearing near its bony insertion. I am having particular problems around my left hip, also including some bursitis. Sometimes I have pain in my heel cords.

What I am describing in my hip is not unlike tennis elbow. Tennis elbow results from micro tears to the tendon where it inserts on the bones just above your elbow. The "usual" way that someone gets tennis elbow is a repetitive motion, like tennis (could be either the forehand or the back hand, resulting in a different tendon for each one), but you can also have the same effect from any repetitive motion. The usual physical therapy is cold in the acute phase, then heat or cold in the post acute phase, with gentle "cross fiber" massage to the involved tendon, gentle stretches, and once the pain has gone, gradual strengthening, then return to the activity. People often wear a band around the affected tendon that changes the relationship of the tendon with the bone.

What I don't know is the mechanism of the tendon injury or failure as it relates to the statins...I would only be guessing. But one thing I could say, with some confidence, is that, if your muscles are weakened by the statins, or if they have tightened up in the process, or from disuse, then the biomechanics of how you move can change, and this can cause strain to structural units like a tendon. Also, if you move differently as a response to pain or weakness, it can cause strain and injury to another place...for instance, people who sprain and ankle will limp, and the next thing you know, thier knee or hip on the opposite side begins to hurt, and then they report back pain, or headaches. The human body, when aligned, functions so beautifully, but, when out of alignment due to structural changes, goes out of whack pretty fast.

So, what could cause your tennis elbow? Aside from the possible issues with statins, gripping a steering wheel for long times could do it. Change your grip frequently, don't grip too hard, rest at stop lights. When you are stopped, you could do very gentle stretches to your arms from your fingers, all the way to your shoulders.

I have become skeptical about heading to see an allopathic doc, since, like you, many tests come back negative...I do see a naturopath and work hard to eat right and get the supplementation fine tuned.

So, while I can't answer your question directly, I can say that I am definitely having tendon issues. What kind of testing have you had done? Have you had an MRI? Any physical therapy?

As with many of us, I hope you can find some answers...

Nancy
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Recovery time

Postby Nancy W » Sun Nov 07, 2010 7:02 am

Phil,

I definitely agree with you that you need to listen to your own body as far as knowing when you are ready to exercise more.

When my first husband, at 29, was diagnosed with brain cancer, he didn't want me being his PT, he wanted me to be his wife. When we had that discussion, after his diagnosis, I said to him that I agreed, but that I wanted to say only one thing. And that was, "every day that you get up and out of bed and move around, you will have the strength to move around the next day...too many days in bed, and your ability to get up may get up and leave."

He took heed. I never said another thing, nor gave him any more advice. As he got weaker, I helped him, of course, but I never acted as his PT. He walked on his own up until the month before he died. And then he walked with someone to steady him, until the day he died. When he lost his independence, after having two strokes, he continued to get out of bed every day...on his own. Because he could not walk on his own, he surprised me one night by crawling. I asked him what he was doing, and he fed me back the line I wrote above, something I had told him nine months earlier.

So, even though statin damage is wierd and unpredictable, and not much is known about the mechanism of damage to every system, it is clear that there are effects to multiple systems, and not always the same effects for each person. For this reason, I agree with you about being cautious. Only you can read your body. But I do encourage you not to give up moving all together...

Nancy (up in the middle of the night with muscle aches...what else?)
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Postby Allen1 » Sun Nov 07, 2010 7:27 am

Hi there Vicki,

I also have what the rheumatologist called tennis elbow which I believe is caused from statin use, its mainly my left elbow that hurts the most which is strange as I am right handed. If you bend your arm to your chest and use the other hand to stretch the skin in the elbow area, you will probably see a few lumps and bumps where the pain is as well as the tendons where they attach. Both my arms are weak especially the left one and a lot of the tendons throughout my body often click when I move or stretch an area.

If I don't sleep with a jumper on and my arm/elbow cools off, I wake in a lot of pain, this is from someone who used to sleep naked before all this happened. There are a lot more problems from statins but on this one, try and keep the area that is troublesome as in your elbows, warm and out of draughts.

All the best,
Allen.
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Postby pmgamer18 » Sun Nov 07, 2010 12:33 pm

Thank you Nancy sorry about your husband and I hear you and know just what your saying. Today is a better day and I am walking around the house with out the walker. I am doing more walking today then normal. But this time I am not going to keep doing it until I feel pain.

I am done for the day so far not extra pain so I hope this works out we will see tonight and in the morning.
Phil
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Postby vicki » Sun Nov 07, 2010 8:17 pm

Like I siad I did have for years something like tennis elbow, hurt like hell. My legs, the lumps are still in the front of my legs below the knee. I believe my tendons tore. I have so much damage going on 15 yrs. now. I also developed while on Statins cancer CLL, cancer of the blood, my belief is my CLL was caused by statins. I had such major breathing problems, hurt all over on and on like everyone else when your body is so worn down and inflamation cancers is bound to come. That is what I believe and no one will ever convince me it wasn't the Statins. Along with that I developed Type 2 diabeties, severe breathing problems, major muscle and nerve damage. We all have so many problems and the drug co.'s know what is happening to us and don't seem to care. I tried co-q 10 and am eating right because of the cancer also and nothing seems to help. No test still show anything or Dr.'s refuse to believe you and say or you'll be ok. I think they just don't want anything to do with us, becasue they don't know what to do for us.
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Thanks for your commments Allen

Postby Nancy W » Sun Nov 07, 2010 8:38 pm

I, too have some funny lumps around that hip I was referring to. I have to wear warm pajamas to bed and socks on my feet, or I wake up in a lot of pain. And even with that, I am waking up with pain some nights. Last night, since we changed to daylight savings time, I stayed awake through the one o'clock hour twice, then finally hauled myself out of bed and sat up for three more hours reading and on the computer. I can't take pain medicine, and antiinflammatories do nothing...sometimes homeopathics help. I am listening to some CD's of Jack Kornfield on the combination of meditation and neurobiology. They are interesting and Kornfield, a noted Buddhist monk and the teacher of heart centered meditation, is talking about being aware enough to embrace pain, rather than run from it...I am down to no pharmaceutical options, I am hoping that the supplements will eventually lead to fruther return to health, and I am working on the idea of embracing this pain in the way Kornfield is talking about. It opens a door to a new way of thinking about it, anyway.

I will say that spacedoc.net has gone a very long way toward keepingme sane over the last 16 months! Thanks to all of you!
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Postby lars999 » Mon Nov 08, 2010 9:58 am

Good Morning Folks!!

I too had "tennis elbow" kinds of pains in left arm before and after stopping Lipitor, sometimes severe. Each and every attachment point for ligaments and muscles would ache and be very tender to touch. Only thing that helped was careful massage of each and every sore spot. Now that the extent and severety of Lipitor-induced pains in left arm are finally dissapating somewhat, so is the "tennis elbow".

Keeping each and every muscle, ligament, joint, that was/is affected adversely by Lipitor, warm is proving to be another consistancy for me.

Now that I am able to do enough physical exercise to get sore muscles, joints, etc. I am getting additional confirmation that these pains, sorenesses really are different -- they respond to ibuprofin, Aspercreme, etc., just like they always have. I now feel even more confident in ascribing the pains, etc., that are not responsive to these treatments, to be those from Lipitor.

Lars
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Postby pmgamer18 » Wed Nov 17, 2010 2:37 pm

Hi everyone good news things are getting better I am getting stronger but still have pain. I am walking 5 min.'s at a time with out using my walker for a total of 30 min.'s /day. Yesterday I started doing some Extercising Arms and legs.

I still have more pain at night but by the time I eat in the morning I am feeling better with the pain and albe to do the exercising and walking.

I walk for 5 min.'s every 90 min.'s.
Phil
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Postby lars999 » Wed Nov 17, 2010 4:09 pm

Hello Phil!!

Glad to hear things are improving for you. Walking about 5 minutes without cane was about as much as I could do a little over 5 months ago. Thought I would never be hiking again. FINALLY, I started improving fairly rapidly, still at much lesser intensity than only a few years ago.

It took me over 3 months of arm exercises before I started seeing any real improvement. Like with legs, lately improvements are coming more rapidly.

Not something for the impatient, I am still waiting for my arms and legs to "regress" back to my chronological age.

Congrats,
Lars
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Postby pmgamer18 » Wed Nov 17, 2010 5:13 pm

I have some pain in my left shoulder but most of it is in my lower back, hips and upper legs. I just started doing this walking and exercise last Monday.
Phil
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Postby pmgamer18 » Thu Nov 18, 2010 11:12 am

I just don't under stand all this after feeling stronger with less pain. Walking and doing some very light exercise.

This morning I am in a lot of pain and can't walk easy with my walker.

So now what Dr.'s say I need to walk 30 min's a day but doing this to me is making the problem worse.

I just don't see this getting better if when I try to exercise I get set back like this.
Phil
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Postby Allen1 » Fri Nov 19, 2010 7:16 am

Hi there Phil,

what is happening to you is the same as what most of us went through (and still do but not as severe).
As time goes by, things will get a little easier and you will see an improvement in both stamina and pain, the problems are that while getting there, you will often find that its like going 2 steps forward and 3 steps back, then you can go for days that are good only to be followed by days that are bad.

There are so many things that taking statins can do to people that it is truly frightening, a lot of the problems seem to be unrelated till you see how they work, even your skin can change, it can lose its elasticity, become itchy and even feel different etc.

It is also amazing how someone will mention a problem and you realise that you had or still have the very same thing, these problems are often overtaken by something else that is more of a problem at the time and the previous problems get waylaid.

I can understand the doctor wanting to keep you mobile and as long as you are at least getting up now and then for the bathroom or to put the kettle on etc, it will stop you from stiffening up. You will get stronger and the pain will ease off, but its a waiting game with a lot of ups and downs. Some people have got back some normality after a few months while others take a lot longer.

Some days you will also find that you can do a lot and feel OK only to find that you have actually overdone thing and spend the next few days recuperating, we have all done that and quite a few times too (you already found that out) :(

Don't give up as things do get a bit easier, it just takes a lot of time to get there for many of us ;)

All the best,
Allen :)
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Postby pmgamer18 » Sat Nov 20, 2010 9:58 am

Dr.'s can hand out Statin Drugs like it's candy yet yesterday the FDA pull Darvocet the only pain pill I can take that dose not make me feel sick. Now what can I do for the pain I am in I had Heart Bypass Surgery 2 yrs ago in the hosp. they tired every kind of Pain med there is for my pain.

After being in a coma 13 weeks I had to be opened up 5 x's due to infections and they put me in a coma becuse they could not close me up until the blood thinners were out of my body.

I ended up with a huge bed sore on my back side and needed pain meds for this when I got out of ICU. The only one that worked was a shot I can't remember the name. But they could not let me go home until they found a pain med I could take that agreed with me and it was Darvocet.

Here is what I found as to why they pulled Darvocet.
http://www.latimes.com/news/nationworld ... 1927.story
Phil
=============================


The FDA's decision, based on data showing a risk of serious heart rhythm abnormalities
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Postby vicki » Sat Nov 20, 2010 10:36 am

I can’t believe they can pull Darvocet and other pills off the market just like that but like you said still hand out Statins like they were candy. Even wanted Statins put in our water so they could kill or damage more people.

I am so sorry.

Tues. I went to my doctor with my ever lasting statin damage…. This time lung problems again, can’t hardly breath and still trying to work, spitting up blood too. I took all my medical records, outlined out so she could see just what statins did to me. Showing before I started taking Statin drugs (bus physicals for work and 2 slight breathing problems in 12 years.) I also took the study I was in with UCSD Statin Study group, headed by Beatrice A. Golomb, MD. PHD and this statin study Statins and Myoglobin: How muscle pain and weakness progress to heart, lung and kidney failure by Stephanie Seneff :
http://people.csail.mit.edu/seneff/statins_muscle_damage_heart_failure.html
I think these two articles tell it all. All my doctor did is look at the papers for about 1 minute and then hand them back to me. How are we suppose to get any help when doctors are still in disbelief, won’t study the side-effects, don’t seem to care? I think it is terrible how some doctors treat us, so uncaring and won’t listen. We pay money for this?
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Postby pmgamer18 » Sat Nov 20, 2010 10:50 am

I guess as far as Dr.'s go I am lucky both my Family Dr. and my Heart Dr. agree whats wrong with me is from the Statin Drugs and are treating me for it with.

•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.

I am getting better but I am told I need to walk 30 min.'s per day even if it's only 2 min's at a time. And I am told to do some light exercise for my legs and arms.

Problem is when I do this I end up back in very bad pain that night or the next day why is this.

I keep thinking I need to see a Dr. that treats people for Statin Drug damage but how do you find out and what kind of Dr. dose this.

Phil
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Postby lars999 » Sat Nov 20, 2010 1:21 pm

Vicki,

I have had same experience with doctors re statins as you describe.
"All my doctor did is look at the papers for about 1 minute and then hand them back to me. How are we suppose to get any help when doctors are still in disbelief, won’t study the side-effects, don’t seem to care? I think it is terrible how some doctors treat us, so uncaring and won’t listen. We pay money for this?"

That puts those doctors on my "enemies list". What does that mean in practice?

1) I beleive nothing from doctors I vist, when the talk about statins. I generally counter most everything they say. ALL statins are on my DO NOT GIVE!!! list. That alone gets their attention!!

2) I no longer follow any doctor's medical advice, unless I have researched it and concur. In other words, ALL doctors are reduced to advisors. They will not control my life!!

FYI: I have at least one friend that has quit visiting doctors at all, preferring to educate herself about things medical and be her own doctor. I am part way down that path myself. These persons have what it takes to bring themselves up to the knowledge level of GPs and perhaps even some specialists.

3) I will assist any statin user in learning about the nasty adverse side effects of ALL statins. Nearly always this leads to them quitting statins -- total is well into double digits. I feel really good about "rescuing" every single individual from the nasty fate of statins -- these are all persons that really should not have been given statins, based on the various major clinical trials (but NOT on what drug companies, or their lacky-whacky doctors, claim). So far these persons have all been late 60 or women, some both, that is, persons that ALL clinical trials have shown DO NOT BENEFIT from statins.

4) I talk about my nasty experience with statins and tout books by Uffe Ravenskov, Malcom Kendricks, Duane Graveline, as well as Beatrice Golumb's medical publications, etc., etc.

5) I talk up Kilmer McCully's work on homocysteine, Linus Pauling's work on vitamin-C use in countering ateriosclerosis, and the emerging understanding that statins work, for persons that already have had a heart attack, because of currently ill-defined "anti-inflammatory" properties, NOT because of drastically, dangereously lowering of cholesterol and lipoproteins.

No victimhood for me again!!
Lars
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Postby pmgamer18 » Sat Nov 20, 2010 2:13 pm

Ok after much searching and posting at forums I found this paper by Spacedoc.com about Pain Relief and Exercising. I need to show this to my Dr. and try going on Ultram 300mg A stronger tramadol. In his paper he says the following that shows why I have a problem with more pain walking and trying to do light exercise.
http://www.spacedoc.net/pain_relief_vital_statin_damaged
=============================
Meanwhile multi-disciplined research teams are working out the details of mitochondrial repair and maintenance. Some of this new research centers on the benefit of exercise which stimulates mitochondrial genesis.

This can be very misleading. I can say from experience that regular exercise such as walking is counterproductive in these cases of statin associated muscle damage. The exercise merely throws additional work on the remaining intact muscle fibers causing excess strain and increased pain. This is why only the very special non weight-bearing exercise of water aerobics has much to offer here. No pain management program, in my opinion, is complete without it.

Phil
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Postby lars999 » Sat Nov 20, 2010 2:15 pm

What Allen wrote above about his personal experiences applies to mine, with only minor differences.

I especially note his words about things other than muscle and cognitive effect. I had some skin problems that steadily got worse and would not respond to any routine treatments. Once I stopped Lipitor, they went away nearly completely in following few weeks. Recently, a much less serious rash of same appearances and locations appeared. This "new rash" responded nicely to routine, OTC treatments.

Lars
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