Right now I can't walk.

[pmgamer18]

Well I need some thing for the pain and need to try water exercising.
Phil

[Nancy W]

Do deep water aerobics where you are buoyed up by a flotation device so you are truly non-weight bearing. Work up slowly, midn your fatigue, and pay attention to pain and back off if you have some. Don't add flotation (resistance) devices to your feet, or webs to your hands to start...just build up slowly and stretch gently at the end of each session.

I love water aerobics...even if I am still not where I was pre-statins.

Check out my post on the half life of statins...

Nancy

[pmgamer18]

Thanks Nancy I have read all your posts get help. I will do this my wife was thinking to go to the Old persons club her in town don't take a class yet but go to the class as a drop in cost is only $6 /time. How many days a week should I start with.

I am feeling better from the exercise I did that set me back the first of the week. Before doing them I was thinking I could start cutting back on the pain pills.

I feel doing this in the water I will be better off and be able to get off the pain pills I don't like taking them.
Thanks for all you do Phil

[pmgamer18]

I am going on Ultram/Tramadol 50 mgs to start for pain. I am on Celebrex 2x's per day and the Darvocet I am on 5 days ago the FDA pulled it.

I have so dam much pain even Darvocet did not help taking it 3 x's per day.

I just got back from seeing my Dr. he keeps telling me I need to walk for exercise I have to use a walker now do to Statin Drug damage. The more I try the worse I get it's like I am between a rock and a hard place.

I hope the Ultram/Tramadol works I start on it tomorrow. And will start to try walking in deep water in a Therapy heated to 98 I hope I can do this with out having anymore set backs.

I got this E news letter the other day it's the only thing on the web I found that talks about Pain Relief Vital for those Damaged by Statins

http://www.spacedoc.net/pain_relief_vit ... in_damaged

[pmgamer18]

I took the Ultram/Tramadol 50 mgs this morning at 5 am just the walking I did going to the Dr. yesterday I was up most of the night in pain. I need help here the Ultram/Tramadol 50 mgs is hardly helping me with the pain. The last pill of Darvocet I took was last night 11pm when I went to bed.

Do you guys take the Ultram 2 to 3 x's per day 50 mgs with the darvocet I was on this 3x's / day. Is 50 mgs of Ultram as strong as Darvocet/Acetaminophe/Propoxyphe 650mg/100mg Po Tab.

I must say I am a bit upset the way this is working I was sure from reading spacedoc.com news letter for pain do to statins I would have less pain and be able to try walking in the water at the old persons club.

I call my Dr. he said if I have a problem call him he did the scripe for 3x's per day but told me only take one. So I do have more if he says to take more.

[pmgamer18]

Hi All,

Not doing so hot on my new pain med. Ultram Dr. had me up to 50 mgs 4x's a day. I called him today saying this is not cutting it so he told me to do 100 mgs 3x's /day. I hope this helps I need to do some exercise in the water but the pain is to much to move more the a few min.'s.

My labs show my levels for the following high.
Myoglobin Serum 88 H range 50 mcg/L or less.
Creatine Kinase Total 315 H range 44 to 196 U/L.
Creatine Kinase Isoenzymes W/O Total CK-MM 94 L range 97 to 100%.
CK-MB 0 range 0-3 % of Total.
CK-BB 0 range 0% of Total.

I feel I have permanent damage to my muscles. My Son In Law had a stroke a yr. ago he is only 38 yrs old it happened on a Fri. morning he was back to work by Mon.

One of the Dr.'s he was seeing said he has Lupus the new Dr. he is seeing tested him doing the same labs tests I posted above and his levels are high but less them mine. His new Dr. wants a tissue sample from his muscles thinking he has Polymyositis.

He feels this is test is a bit much because he feels fine. They asked me to do come searching on this and the more I read about his levels the more I feel I have permanent damage to my muscles due to Statin Drugs.
P

[Allen1]

Hi there Phil,

I really think that you are overdoing things at the moment, your muscles are breaking down which is where a lot of the pain comes in and where CK levels rise. A doctors advice on this would be helpful as I do not know the ins and outs of CK tests, I did however have high levels myself and was in pain, but not as bad as you have.

My CK levels came down after a few months off statins, maybe something else you are taking could be influencing the levels?

I would really stop any exercise for at least a month to see if there is any improvement, if there is then maybe a little gentle exercise to keep you supple for a few months gradually building up to where you feel comfortable. Remember, its not a race to get better, it will take time and you have to avoid overdoing things, as long as you are mobile in so much as getting up for the toilet etc and walking around the house when you need to, you should slowly make a difference. You know how bad it hurts at the moment, if you want to go somewhere like the swimming pool or the gym, go as an observer rather than a participant, you will be able to join in when you are fit enough, but now is not the time by the sound of things.

Take care Phil, I wish there was a potion to take away all the damage that Statins has done to you and all the rest of us, until that happens, we have to try to stop overdoing things and making ourselves worse.

All the best,
Allen :)

[pmgamer18]

Allen1,

I feel your right and I keep telling my wife and family this but they hear my Dr. telling me I need to keep moving or in time I will not be albe to move.

What your saying is true and I made up my mind to not listen to my Dr. I start feeling better evern feel so much better I can get up and wake to the bathroom with out the walker.

I am up walking a short time about every hr. as I was feeling better I was pushed by my wife and grown kids to exercise they tell me get your your A** and do some exercising like your Dr. told you.

All this week I wanted to go to the pool and my wife had some thing she needed to do. She is starting this crap about telling me just go and do it.

I don't want to go to this pool on my own even to just soke for a time in it. So I hope to try it next Mon. I have been albe to go into my SPA it's on a deck off my Bedroom I have a DoorWall going out on the deck is easy. It's taking the cover off and getting it back on this is hard. My wife helps me with this. So going to the pool just to move around a little should work.

I need to try it see now it goes.
The new dose of Ultram 100 mgs 3x's /day is working but still I have pain standing or walking.
Thanks Phil

[David Staup]

Phil see this:

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

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

mito dsyfunction caused cfs is a good model for statin damage especially in the exercise intolerance relm. both of the above should be helpful in convincing your doctor that at least you need to be extremely careful!

[pmgamer18]

Thanks David some good info I have showed things like this to my Dr. and now I think he finely gets it. We had some big snow storms yesterday my family was over for dinner we have time every Sunday. I was so happy they went outside and cleaned up all the snow. I can't even go out side and start the snow blower for them.

Today I feel bad for my wife the plow came down the street and left a huge amount of snow in the drive way. She will not listen to me and call someone to clean it off.

It's times like this I feel some much less a men.
Phil

[Allen1]

They are great links David,

I wish I had seen this information way back when all these problems started

Hi there Phil,

I am pleased that your doctor and family are now aware that you are not being lazy and that the exercising was actually causing you harm and pain. Don't think you have lost your manliness or that you are a lesser person for the predicament you find yourself in, I am pretty sure your family would rather have you there the way you are than have you stuck in hospital in extreme pain or not there at all.

Remember, you will get a lot better and maybe next winter you will be out there with your wife after the plough has covered your driveway again, just take it easy and if you are not up to doing something then don't do it, its 3 years or so since I was in a similar position and there has been a lot of ups and downs in that time, but the pains are nowhere near as bad and I can actually do a lot of things now that I couldn't back then : )

All the best,
Allen

[pmgamer18]

Allen thanks for the support I need it yesterday I went to get a hair cut by myself there was no place to park I had to park accross the street. The roads were clear but still had some snow on them. I had to walk accross this then up a hill to get to the shop.

I could tell I was over doing it and I asked the barber to bring my car in front of the shop so I did not have to do this all over again.

People are great and very help full I hated to ask her to do this but even doing this. Last night I was in a lot of pain and this morning it's hard to stand holding the walker.

So it is true the more one does the worse this can get.

It gives me hope that you are much better and I don't feel I have damage just need to heal and go slow. When I take is easy I get better today I told my wife if I just took it easy for a month maybe I could do more.

Phil

[pmgamer18]

Hi everyone,

Not much new here the Ultram 100 mgs 3x's /day was not helping much with my pain and it started to give me sides.

When I first needed pain meds my Dr. wanted to put me back on Vicodin. Two yrs. ago when I had Heart Bypass Surgery I was on this 3x's/ day for a bad bed sore I got from being put in a coma 13 weeks and not being able to be moved.

I did not want to go on Vicodin again it was very hard to come off it. I was on it about 9 months.

Well now I am back on it Vicodin/Lortab/Acetaminophen/Hydrocodone 500mg/5mg PO Tab 2x’s/day. Just now this morning I called my Dr. because I was doing some walking more then the norm getting out of the house and seeing people for the Holidays.

And having a lot more pain still seams like if I sit in kitchen chair to long it hurts my back. Or the walking. I am not yet able to even try walking in a Therapy pool yet.

I find I am getting better but at times it's so slow it is scary.

I hope everyone had a good Holiday and wish everyone a Happy New Year.

I keep working at this don't let it get me down. But it's not easy now I need to find a new Dr. my Dr. is joining up with MDVIP. So for me to keep seeing him I would need to pay him or MDVIP an extra $1500 to $1800 per yr. over and above what my health care plain pays.

I can't do this I have been helping my kids when they were out of work my nest egg is dam near gone.

I feel this MDVIP is a scam did a search about people are not too happy about Dr.'s doing this.

The more I search into MDVIP it's a scam even Dr.'s that join it are being ripped off.
http://www.google.com/search?hl=en&l...MDVIP&gs_rfai=

So it's just one more thing to worry about.
Phil

[Nancy W]

Phil, sorry to hear about your situation with the doc. It is very disheartening to read of the various scams that are out there. When I read of all the pharmaceuticals that are recommended to ever widening circles of people, all I see are dollar signs. I am about to start a private practice...I am going to get to see all this from the provider side. Stay tuned!

Sorry to read that your pain continues. I can relate to the discouragement. I can also relate to the problem of feeling better, then having a relapse. I have been doing better lately, but then a big emotional jolt last weekend when my dad was hosptalized (I am his caregiver), and boom, pain!

Wishing you a better year! Nancy

[pmgamer18]

Nancy,

I know how you feel I was a caregiver for my Mother In Law when my wife was working. Every time she ended up in the hosp. I was a mess to me she was the only mother I ever had. I ended up with a good wife and a Mother.

I am so sorry to hear this I pray he dose better. We lost my Mother in law about 6 yrs. Right about this time of the yr.

I am hoping my Dr. can't get the 600 people to join MDVIP. He is having a town hall meeting the end of this month I am not going I can't pay $1,500 to $1,800 / yr. to see him over and above what my BCBS pays him.

I have a friend that does his billing I called her the other day telling her I did a search on MDVIP and what came up was MDVIP is a scam and a huge amount of hits on it over 600.

Wow the more I search into MDVIP it's a scam even Dr.'s that join it are being ripped off.
http://www.google.com/search?hl=en&l...MDVIP&gs_rfai=

She was happy I called her I told not to tell the Dr. I gave her this info. But I guess if he gets enough people to join this she will be out of a job MDVIP takes over billing an the Office records.

She told me don't look for a new Dr. yet she dose not feel he is going to get 600 to join this.

I have stopped trying to exercise on good days I do more on bad days I take it easy. All this stuff about needing to exercise or I will lose my muscles I feel they are dead wrong. All this trying to exercise at this stage is doing is making me worse. I need to give my body time to heal first.
Phil

[Nancy W]

Maybe your doc won't get 600 people to sign up...maybe he will discover the scam on his own. all I know is that our medical plan gets worse every year, covers fewer things...but I have decided that I need to work from a more basic level, and so I pay for the occasional naturopath visit, and I try and eat right.

I agree with you about the exercise. Even as a PT! The problem defies all current western medical theory and practice, as I think I have posted before. Defies what I have learned as a PT. Still I believe you because I am experiencing similar problems.

Eighteen months into this episode, I am weaker and weaker. I lift our one year old Golden Retriever up into our bed each night, sometimes more than one time. She is at her adult weight and that hasn't changed, but it is getting harder and harder for me. You would think that doing it every day would allow me to have the strength to do it the next day. Nope!

Climbing stairs is getting harder, not easier. I am getting worried about working, that I won't be safe with patients, so I am changing to work that doesn't involve lifting any more. Two years ago, young PT's would tell me I was the strongest woman PT they had encountered. Now I am scared. Scared of the "ALS" like syndrome. But like most of us, I am not sure of who to turn to...so I just keep on going along with natural medicine and working on being otherwise healthy.

So, as I am writing this, I just got a book I ordered by Dr. David Brownstein, who recently had an article on spacedoc...it has a lot on statins. I am going to take a break and read this...then watch for my next post. I may have something interesting to say. My colleague just took a course with Brownstein and she had some very interestng things to say about it...I want to read them in black and white...then I will write about it.

More soon!

Nancy

[Nancy W]

Well, I shot right through the chapter on statins. Nothing I didn't know, but it is a good summary of some of the information on statins. What I was looking for was something to corroborate a statement he apparently made in the course my friend went to. My friend is a medical doc and a chiropractor and is the person who has been my teacher in craniosacral therapy. She called me from the course and said, you are not going to believe this, but Dr. Brownstein says that the half life of statins is ______. I believe she said something like years... I posted something on this forum at the time, excited that there might be a reason why some of us continue to have new symptoms like we were still on statins, when we, in fact, had stopped them months to years before. I Googled around and could not find anything else like that, so I ordered his book. I will read with a fine tooth comb, but on first, hasty, pass, I am not finding anything. (Darn!) I have put in a call to my colleague, and she will be calling back...I want to get to the bottom of what he said!

[pmgamer18]

Dr. Brownstein has his office about 20 miles from my house he is a great Dr. I know of a women on the Thyroid forums the had breast cancer had both removed and still had the cancer. He fixed her with high dose's of Iodine.

I do remember reading this that Statin Drugs keeps working on your CoQ10 long after your off the Statin Drugs.
Phil

[lars999]

Some months ago I contacted several doctors in the local GPVIP operation, stating that my primary goal was to recover from the nasty, adverse effects of Lipitor. I never got a single response. :idea:

Actually, when I read the CVs of the various doctors, I doubt that any would have survived an interview with me.

Additionally, I have a good friend that stayed with his years-long GP when that GP moved from his general practice to the GPVIP program. He likes the much greater amount of time he gets with the Dr. However, when my friend heard about my Lipitor experience and I had sent him the usual website address of Graveline, Golumb, Stopped-Our-Statins, Ravenskov, I soon learned that he was thinking of passing them on to his GPVIP Dr. Seems he was doubtfull that said Dr. knew about such information. Apparently his intution was correct for by friend has stopped taking Lipitor and is now in process of getting his father off Lipitor.

Simply in terms of cost, I can, do and will visit a few different specialists this year, all paid for my my insurance. From them I will learn far more that from most any GP. And I can spend that 1500+ dollars on something more valuable.

Lars :twisted:

[pmgamer18]

I gave up looking for Dr.'s that treat Statin Drug muscle damage there are none. The best info I have found is here and Stopped-Our-Statins forums.
Phil