HOW will stinging/burning in feet end?

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

Postby mgguy » Thu Apr 05, 2007 1:06 am

Poohhel, I guess what makes it hard is not knowing definitely that statins are the cause. As my symptoms haven't resolved by now I should probably go back to the doctor and look into other possibilities, which is really going to be stressful as I wait for test results to come in...

I hope your PAD test is negative and that you get full recovery soon with just the passage of time. This is all very draining so your vacation is probably just what is needed. If you can get some relief from pain medicine, I say go for it and enjoy. I don't know whether vicodin would be helpful for what you have, but it has always worked for me for post-dental surgery and other kinds of pain and doesn't cause me drowsiness. Oxycotin, I've heard, is also very effective and nonsedating. You might even get good relief from Xanax, with the side benefit that it obliterates anxiety, though with some sedation. Ahh, the wonders of medicine, sans the statins. Have a great trip!
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Postby poohhel » Thu Apr 05, 2007 2:36 am

mgguy,
I am going to ask about the three choices you gave me... :) i looked up drug interactions for the darvocet and there is a [u]Major[/u] conflict with the Gabapentin that Neurologists put me on... so I guess I will have to look for other things. I do hope the docs can help me out in some way, because I really do want to enjoy my vacation. :?

catspajamas,
thanks again for the email and reply :)
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Postby mgguy » Sun Apr 15, 2007 1:22 am

I still have burning/stinging in my feet 3 months after stopping Lovastatin. I have learned in these forums that if statins caused this, it can take a long time to heal and can even get worse before getting better. However, I am still uncertain about whether symptoms of nerve damage can come and go completely either during or after being on statins. Is it possible that a person can have a few hours without any peripheral neuropathy symptoms at all, and then have them come back a while later, say at night? Does it seem likely that these symptoms could be episodic if they were indeed caused by statins, or rather would they be expected to be present at some level of intensity all the time? My doctor said that if statins were the cause, the symptoms would be there throughout the day. Does anyone have any experience or knowledge on this? Thanks.
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Postby catspajamas » Sun Apr 15, 2007 1:36 pm

I experience more "nerve" pain in my feet when I lay down to go to sleep....I think we notice pain more when we are "at rest" than we do during the day when we are active. I know the pain is there all the time...but everything seems worse at night...But I think when you lay down your feet legs don't get the blood supply that they get when you are standing/sitting....would also make nerves act different, wouldn't it? I am just guessing...A person hates to go to a pain specialist..because they tend to overmedicate...we are all caught in a dilemna...For some reason if I over load on sugary stuff..my nerve pain is worse...anyone else notice that?
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Postby poohhel » Mon Apr 30, 2007 2:11 am

I was re-reading the post in this topic and felt it was time for an update :D

My EMG and NVC test came back positive for pinched nerves in my neck and back; 5 to be exact. According to my neurologist the pinched nerves will cause all of the perpherial neuropathy pains in my arms, legs, feet, etc. including the swelling, burning, shocks of pain, cramping, etc... :?

I will be honest, I think the statins caused the nerve damage that is being read as pinched nerves on my test...but who am I? I definitely am not a doctor but considering my doctor says pinched nerves are usually a result of some sort of trauma caused from things like a car accident, a surgery, or a severe fall... and I have not had any "trauma" other than statins...well to me it makes sense :?:

Anyway, he has prescribed physical therapy and a neurontin (pain killer)--unfortunately the neurontin caused a REALLY bad reaction and I swelled 3 times worse than usual and became lethargic, itchy, and confused... next I tried Darvocet and ended up in hospital with hives, difficulty breathing, and again swollen from head to toe... :cry:

Now we are waiting 7-10 days before we can try something new :evil: ...in the meantime my feet, calves, arms burn and I ache all over .... but my ship leaves in 14 days. :? I so hope I have something I can take by then.
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periferal neurapathy

Postby Tom Braithwaite » Sat Jun 09, 2007 9:28 pm

If it does go away it may be years. I do not think mine will ever get better and it has been several years since I stopped taking Lipitor. At least I am still alive and I able to walk. Others were not so lucky. :x
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Postby Cat Mom2 » Sun Jun 10, 2007 11:21 am

mgguy .. I think I have learned to live with it but I am noticing there are longer and longer periods of time that they do not itch/burn. The biggest swelling is right at my ankle bone and for about 5 to 6 months, I had a horriable, painful, grabbing pain aound my whole ankle that would just about throw me down. That would come and go and it was AWFUL!

The actual swelling is unchanged but is not spreading so that's a plus in my favor. I have been off the statin since July 2006 so that is my timeline if you are looking for a timeline.

I found there was like a honeymoon period of time when I felt SUPER, then the ailments came back, seemed to attached a different joint every day. Horriable pain in this joint for several days, then goes away only to show up in another a few days later. Right now it is in my right shoulder and has been there for 3 months, leaving my arm useless at time due to the pain there. Never injured it in any way, just woke up one morning and there it was! All these new ailments seem to show up while I am sleeping which I find very odd....
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Postby mgguy » Sun Jun 10, 2007 6:32 pm

Its been 5 months off statins and I still have burning/stinging in feet and now in the last 2 months have intermittent tingling, numbness, and minimal pain in my hands and forearms, especially when I am trying to sleep. My general doctor said he still thinks it may be statin related, but has referred me to a neurologist for further discussion. As a complication, I have discontinued heavy dosage of Remeron antidepressant over the past 2 months, and I am thinking it may be possible that it was working as a pain killer and now that I am no longer on it I am noticing the peripheral neuropathy symptoms more. I have already been tested for various things like B-12 deficiency, diabetes, syphilis, and other things and all were negative. I have not had any MRIs or other probing, so I guess I have a lot of sleepless nights waiting for more tests to be done and results to come in. This is really starting to interfere with my peace of mind, but I just have to deal with it and take it as it comes. Thanks to all you who have posted in this forum. I read it every day for support.

Robert (aka mgguy)
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Postby Cat Mom2 » Sun Dec 02, 2007 3:37 pm

Here I am a lot later to post a update. The lumps/swelling are still there, the burning pain still comes and goes, mainly bothers me when I have been standing on the a lot.. The lumps still seem to get bigger, then smaller..

Right now I am seeing a sports injury doctor for the shoulder and have recieved 2 shots in that so far. They helped, then about a week later, the pain was back but I do have to say it IS better,, The reason for this post it to tell you, I have refused any of their prescriptions and asked what OTC drugs can I take. You are not going to believe what he told me to take...

Breakfast.............3 Aleve
Lunch..................2 Tylenonl
Supper ...............2 Aleve
Bedtime..............2 tylenol

I don't think so!!!! I do not feel like I need all that so 3 Aleve a day is my limit unless it does a big flare up, then I might consider all that.

Of coarse he asked me how I hurt it...I responed "I took statin drugs".. Got no response from him. Lets hope he remember it one day when he needs to.
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Postby cjbrooksjc » Sun Dec 02, 2007 11:13 pm

CatMom: Keep an eye on yr BP when taking Aleve (Naproxen (sp?) Sodium). It can cause an unwanted rise. I can't believe an MD told you to take 5 Aleve a day; that is truly extreme, Tylenol excepted.

Brooks
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Postby catspajamas » Mon Dec 03, 2007 5:22 pm

Not only watch your bl pressure, but that much aleve can cause a ulcer in your stomach..or give your gerd............I would be leary ...if I was you..sounds like way too much aleve...wow..
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pn

Postby vipergg22 » Wed Jun 17, 2009 7:51 pm

About a month ago my podiatrist started me on Metanx and this has helped more than anything else i have tried in the last 10 years . The burning and stinging has been greatly reduced , not gone yet but i am hoping the nerves are slowly healing themselves. Metanx is a potent combo of B6 and B12 and folic acid in a much more absorbable form . It is by prescription only and for me its $40 a month . But if it means relief i'll pay I have been dealing with this so long , go to metanx dot com and check it out . it took about 3 weeks before i saw anything and now its steady improvement , hopefully it keeps going .
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Postby cjbrooksjc » Wed Jun 17, 2009 9:34 pm

Thanks viper. I'll keep it in my kit for later.

Brooks
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burning feet

Postby vicki » Tue Oct 19, 2010 7:32 pm

well I am sad to say it has been over 8 yrs. now off statins. Still burning feet, sometimes stabbing pains still. I tried the coQ10 and all the other over the counter medications... nothing has helped. My immune system was so run down. I developed diabeties ,diverticulitus, so tired all the time, heart palputations, stiff neck, back pain, chronic breathing problems and CLL (to mention a[b] few[/b]). I have no doubt that the Statins caused all of these problems. I was healthy before statins and not very high cholestrol either. Hopefully someday If I'm still alive, I will get back the hundreds of thousands of dollars I spent trying to get better with nothing getting better at all. No doctors listen either, always "Oh it couldn't be the Statins" Good luck to you hope something helps you.

One thing I do recommend when you go to all the doctors, MRI's...... for help, get all your LAB work and office calls, what the doctors says and file them in a folder, you may need them later. I sure did. I was able to tell just when my diabeties and CLL started. You may someday get back all the thousands you spent on trying to get help for all your side effects from statins.
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Two years

Postby Nancy W » Sat Sep 24, 2011 9:34 am

It has been a year since your post, Vicki...thought I would post on this topic to keep the information fresh for people who have neuropathy and are hoping to find information here.

My statin misadventure started two years ago. You can find my story in various places on spacedoc. My reaction to Red Yeast Rice has been peripheral neuropathy, tendonosis, and severe fatigue. Like others have described, the neuropathy went from my groin to my toes, my neck to my fingertips, around my ribcage, and into my face. All the medical tests ruled out other reasons and I was left with statins, which my physician was reluctant to admit. I changed my primary doctor to one who is accepting of alternative medicine, and I got a naturopath.

With the help of the naturopath and this site, I worked my way through trying various supplements, discovering what worked and what didn't. It took months to figure it out, one change at a time. Meanwhile the neuropathy continued. It has, after two years, gotten "better," but the reality is, if I do not take the supplements, the neuropathy comes right back, as bad as ever. When I take the supplements faithfully, not skipping any, I am pain-free 5 out of 7 days most weeks...at least I do not have burning and numb toes. (Different days different toes, so not the usual sort of neuropathy one has with actual peripheral nerve damage.)

With the supplements, plus a healthy, mostly fresh organic veggies and fruits, and organic meats and wild-caught fish, my energy is slowly returning. Not what it was two years ago, but more acceptable.

The tendonosis is difficult to understand. From time to time, with something as simple as rising from a chair, I feel as if some of my tendons are ripping off the bone...weird! I don't think this is actually ripping whole tendons off of bone, but I am betting on micro-tears, because they are painful. I have read about it on this site, so know it happens to others. I work to stay limber. Exercise to tolerance in the water.

Vicki, if you are ever back on here, I hear you when you say you still have neuropathy eight years later. As a physical therapist, most of this statin-induced damage is hard to comprehend in the usual sense. Understanding the damage statins do at a sub-cellular level means that the medical community is not well-informed enough to get what has happened to those of us who come in with statin adverse effects...the mechanism of injury is just not something they have learned about unless they have a specific interest in this topic. Yes, typical peripheral nerve injuries do heal, from the center of the body out towards the fingers and toes...but I, myself, have had issues with the pain going back to the original groin to toes/neck to fingers when I do not get the CoQ10, B Vits, etc...then have it go back to just the distal nerves once I am back on the supplements. In a few days. This does not represent nerve healing. It represents something else on a cellular level.

The other discussion on this topic has been around pain meds...for me, nothing has touched the pain, save for eating right and getting the supplements I need. This also leads me to wonder about the mechanism of the damage.

One thing that I heard about from a colleague had to do with statins remaining in the body for years...well, I can't verify the information she got in the course she took. My colleague is a doctor and a chiropractor and was at a continuing ed course when the doctor presenting talked about statins remaining in the body for 10 years after stopping. The doc was Dr. Brownstein. I wrote to him, but he never wrote back. But i wonder about this. Recently one of my colleagues, a naturopath that I teach craniosacral therapy with, was doing craniosacral therapy on me, working on my brain. She said, " I am sensing toxicity, deep in your brain. It is the statins." So she has me trying some dietary things to increase circulation to my brain. We will see what happens. As ever, time will tell.

The bottom line is that if you are reading this, and you have neuropathy, it is possible to control your symptoms with careful titrating of supplements to discover what you need, and how much of it is helpful. Don't give up! It will take time. A lot of time. But what is the alternative? I have come to realize there is no alternative...learn, learn, learn, then do all you can to be healthy in every way you can!
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Postby vicki » Sat Sep 24, 2011 10:11 am

I haven't given up and I still go on this site from time to time, most of the time I am now on 2 cancer sites one CLL Forum and breast cancer forum. My neuropathy from statins is the least of my worries. My oncologist and I have no doubt my 2 cancers came from Statins ( I have to say in my opionion) My past lab work shows when on Lipitor how my White Blood count and LYmphacytes started going up up up after taking the statin. I've been dealing with treatments for my cancer now besides the type 2 dabietes, high blood pressure, ............. medical problems I got after taking statins, now going on 15 years. Thank you Statins!
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Statins wrecked your immunity...

Postby Nancy W » Sat Sep 24, 2011 2:11 pm

Hey Vicki,

Good to hear from you and I am saying some prayers for you...

All this baloney about statins needing to be under 200 means that everyone who took them was risking losing their immunity, since cholesterol is necessary in the immune response, if I remember right.

I know of a relatively young woman who is having the transit grade amnesia, like Dr. Graveline did...I gave her the links, yet her docs have persuaded her it won't happen AGAIN. For goodness sake, she was out shopping and suddenly did not know one thing about herself...fortunately she had a wallet. What if she didn't have it with her? What if she was driving with her kids in the car? And docs think muscle pain is the only thing...

Anyway, I am thinking of you...will keep you in my prayers!

Nancy
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Postby vicki » Sun Sep 25, 2011 10:38 am

I was driving a school bus when I couldn't remember where I was, I was terrified. I drove that route for 20+ years. They got to take this stuff off the market.
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Postby catspjs » Sun Feb 10, 2013 11:36 am

Its been awhile since I have been here. Its been 12 years now since I went off statins. The neurapathy pain hasn't gotten any better. I have run across so many people that have gotten weird symptoms since they were put on statins. I always tell them my story. Guess I am on a person one by one crusade .I know they sure did a number on my immune system. I am thankful all the symptoms are gone...all except the nerve pain. I don't think that will get any better.If statins did anything for me its that fact that now I check and research any medication that I may have to take. Its made me aware of all the side effects. I wish that everyone thats put on a statin would come here first and read ..What makes it even worse is there are ways to control a high cholesteral without staking a statin and it isn't going to harm the rest of you while its doing it.Thanks for being here....
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Postby vicki » Sun Feb 10, 2013 11:46 am

Yes, there are ways to control high cholestrol, if we really need to do so.

My cousin took statins or I should say, was made to take them, she has many many of the medical problems left over from statins like I do. She recently went to my naturopathy and was put on a diet, lost 34 pounds, ever bad blood tests she has had while on statins, have went back in a good range now, except her kidneys are still bad from statins. Like me my cousin developed high lymphocytes, we both have CLL, cancer. I know,our CLL are a result of taking statin drugs and being left on for 7 long years. I also developed breast cancer at the time I was on statin drugs, both cancers. Read the PROSPER TRIAL. I just don't understand why some doctors won't do their research and pay attention to our complaints. It's like maybe they are being paid tooooo much money to keep us on the statins.

I have so much damage from statins and others have died from the statins and nothing is being done about getting them off the market. Unbelievable!
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