NeuroTalk Support Groups - Dr Appt this afternoon, Do anyone have

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Dr Appt this afternoon, Do anyone have

any thoughts on what I can talk to my dr about for severe leg pain? I guess between the RSD and Fibromyalgia and this stupid weather changing everyday my legs are killing me. I have so much I need to do before Thanksgiving, but when I get home from work I am in so much pain, and feel so tired that I can't go. My Dr put me on Cymbalta last week, but i can't tell it has helped any at all.. I just feel so tired when I get up in the morning and by noon I really feel like I can't go. I do not sleep well at all, and have tried just about every sleeping pill they have and no luck.

Any ideas that I can take with me this afternoon?

Thanks so much for all the wonderful people on this board..

((((HUGS))))
Janet

P.S. I don't know what happened to my es on does in the title..LOL

Whatr do you mean by your legs hurting? I've been sufferig from restless legs TERRIBLY BAD this week. Today in particulr. Most of the week it';s just been in my ankles, but today its all of my legs...and i sit to work so it's driving me CRAZY. iI'm hopping around like a jumping bean and am dreading the ride home cuz driving home ith the RLS going on is a PITA!

and about sleeping...WHY don't you sleep? Cuz pf the pain, stuff on yoru mind, etc???

Hey LisaM, they just have this horrible aching pain that just won't stop. I take methadone for the RSD and it helps, but it just helps the RSD. My Dr that I used for years, just quit a month ago, he couldn't understand why the methadone didn't help with my headaches, etc. but it doesn't phase anything else, but it does help my RSD pain.. It is really weird. I have a very high tolerance to any type of medication, so it's hard to find anything to work on me, but this pain in my legs is just about to drive me crazy. Also for the past 5-6 years my hips really hurt at night. When I'm laying in bed or on the couch if I lay on my hips for any length of time I have severe burning pain. it started with just my left one but now it's both of them.

As for not sleeping, I had a hysterectommy when I was 23 and after that I developed insomnia. I used to get may 2 hours of sleep a night and some nights none at all, and then after several weeks of that I would slep all one day. Now I sleep maybe 3-4 hours a night, which is not good for the fibromyalgia, because my dr has told me I have to be in the 4th stage to heal my body, but if you can't get in the 4th stage, then what am i to do?

It is getting really old, and I'm to the point where I just don't get out near as much as I used to. My friends are all worried about me because when it was warm weather I was alwasy out and now when I get home from work, I put my pj's on and am in for the night. Any ideas?

(((HUGS)))
Janet

Quote:

and now when I get home from work, I put my pj's on and am in for the night.

Hey...that sounds like me :) Seriously, thats what I've been doing. I don't know where you live, and I don't know how long you've had rsd...this is my first FULL year with it (that I KNEW I had it anyway). I, too, have been feeling worse since it got cold. Many have. I mentioned it to my pain doc on my last visit last week...and she said that 75% of her patients ARE feeling worse cuz of the change in the weather. It's the barometer...when fall hits, and the weather is up and down, and can't make up it's mind whether it wants to be warm or cold, it's tough on the aches and pains.

In fact, this is a quote from weather.com:

Quote:

Fibromyalgia
Fibromyalgia Syndrome (also called FMS) is a chronic condition of fatigue accompanied by pain and tenderness in muscles, tendons and other connective tissues. Fibromyalgia occurs mainly in women. Stress, activity level and weather are considered possible influences on the condition. A 1981 survey reported that more than 90% of fibromyalgia patients believed "cold and humid" weather, in particular, made them feel worse. Changes in barometric pressure may also affect those with FMS.

As for your legs...do you know what restless leg syndrome is, and how it feels? You said your legs have an "aching feeling that just won't stop" - and RLS is a feeling like you just HAVE to move your legs to get them to feel better. I personally want to beat them like crazy. If I walk around, it feels better. But if I sit or lay, they go NUTS. A gnawing, aching, terrible feeling. Is that how yours feel, or are they just achy and you DONT' hae the urge to move them?

Now...your fibro, if you go by the description above, has the symptoms of "pain and tenderness in muscles". Could that be the fibro that is making your legs hurt? and could the burning pain in yoru hips be the rsd?

What meds are you on? Some meds have a side effect of pain in the extremeties also. Also look at when you TAKE your meds. Could one of hte meds be affecting your sleep? Keeping you awake?

I take tylenol PM almost every night to help me sleep. My pain doc said it won't affect any of my meds. I didnt' tell her I take it almost every night, and I didn't tell her I take 2 instead of the 2 recommended on the bottle....but it's the only way I can sleep.

Also....my pain doc has me taking 750 mg's of magnesium before bed every night to help with the RLS and muscle spasms. Generally the rls IS helped with that (just not the past few days!) so you may want to add that.

What meds are you on besides the methadone and what is your schedule, hon?

Sounds like me.. My legs are the same way. However I have peripheral neuropathyalong with my all over the freaking body RSD. :mad: Wicked bad pain in legs and feet sometimes only in just one and sometimes in both together. My legs get a highly intensified dull throb feeling. That is the only way I can describe it. Drives me to insanity. Also I can walk up maybe 4 steps and I feel like I am walking up a really steep mountain with 500 lbs on my back. I am sooo tired. I do not sleep anymore. I usually get about 5 hours every 36 hours.

Currently I take Oxycontin, Vicodin, Lexapro, Tagamet, Zonnegran, Celebrex and Trazodone. I have no idea if some of these are doing any good at this point since I have been on them for so long. My Doc tells me I am now "Opiate Sophisticate" meaning that it takes high high dosages of opiate based drugs to be effective because of the severity of the pain and the fact I have been on them for so long.

I hope maybe you can pick something out of this to take to the doc maybe not. Also the neuropathy makes you feel sometimes like you are walking on gravel in your bare feet and on a really bad day "broken glass". Talk about crappy! Well Chin Up as always!! xoxo

Mark :)

LisaM, I know the weather is for sure one of the things that is making my pain be elevated. I told a friend of mine yesterday that i could tell the weather better than the meterologist..LOL I did think the burning in my left hip at first was the RSD because my RSD started in my left foot. Then when the right one started, I just wasn't sure.

I have had RSD since 99 or the first of 2000. The only meds I take are 40 mgs of methadone 1st things in the morning, and then she just added the Cymbalta last week and I take one a day and she added Zetia 1 10mg tablet a day, and it is for my Cholesterol. My Cholesterol has been way too high for the past 15 years that I know of, and she could not believe someone had not put m on a med. She said if it was just 20-30 points higher she would just put me on a low cholesterol diet, which several have already done, but it hasn't worked, but she said mine was way too high, and I was at stroke or heart attack level. My old dr was a friend of mine and just to comfortable with me and he never did any blood work at all. I had him check my cholesterol last year and it ws sky high but he wanted to try the low cholesterol diet, and it didn't help. He never did the liver panel and the first time I saw this dr a month ago she wnted to check it and it came back high, so they did some more test and she ruled out acute viral hepatitis, and wanted to do some more test. She said it could be from the RSD, or some type of virus, she just wasn't sure, but ws more worried about the cholesterol at that time than my liver panels.

I live in Arkansas and the weather is constantly changing. One day it's 40's the next day 70's and it's like that all of the time.. it sucks..

Well any ideas? oh and the rls I don't know much about it but I do know that if I get up and walk around after a little bit my legs do feel a little better, but still hurts like crazy. this morning my right leg on the inside of upper leg started burning like crazy, so i don't know what that is but will tell my dr about it for sure..

(((HUGS))))
Janet

Hi ya Mark,
I don't know anything about the peripheral neuropathy at all, but will read about it to see what i can find out. I used to take a lot of the meds you are taking but they weren't helping so I stopped taking them. I am like you when it comes to meds, because I have a very high tolerance to any type of meds so it takes a lot more to help my pain than a normal person would have to take. My dad is the same way.

That's like tylenol 3, or some of the other drugs like that, it is a waste of my money because they don't work at all.. I could take 5 or 6 at a time and get no relief what so ever. One of my pain drs even had me on Acti lollipops which is actually a drug they give to cancer patients and it relly didn't do a lot for my pain, and it is very strong. It is way too expensive, and at the time I had insurance and my part for 24 days was over $250. When I divorced I lost my insurance and I relly had to stop using them because I sould not afford the price without ins.

Thank you so much for your reply. i really do appreciate all of the input I get from you wonderful people.

(((BIG HUGS MARK)))) I hope you can get some relief soon.
janet

WOW.....okay, now I'm REALLY concerned.....Take this to the doctor with you PLEASE....

Here is the link where I found the following information and if you have elevated liver enzymes, and muscle pain, then I think you SHOULD be concerned, and taken OFF that drug: http://www.healthy-heart-guide.com/z...e-effects.html

Quote:

What is Zetia and how does it lower cholesterol?
Zetia is one of the newer prescription cholesterol lowering drugs. Unlike the more common cholesterol medications called statins which block the enzyme your liver needs to produce cholesterol, Zetia works to reduce the absorption of cholesterol in the digestive tract.

Zetia is either prescribed by itself to lower cholesterol, or in conjunction with statin medications (Lipitor, Pravachol, Zocor and others) to maximize cholesterol reduction.

What are the Zetia side effects?
In addition to the side effects common to most prescription medications such as headaches, nausea and fever, other side effects of Zetia can be much more serious.

FACT: An FDA approved statin called Baycol was recently pulled off the market due to serious side effects and even deaths.

The most troubling potential Zetia side effects include extreme muscle pain and serious liver problems.

Take a look at following warnings taken directly from the official Zetia web site:

Quote:

"When Zetia is prescribed with a statin...it should not be taken by anyone with active liver disease" and "Your doctor may do blood tests to check your liver before you start taking Zetia with a statin and during treatment."

"Tell your doctor if you experience unexplained muscle pain, tenderness, weakness, or any medical problems while on Zetia. Patients reported side effects while taking Zetia. Side effects included tiredness and stomach pain."

And here are some opinions from askapatient.com which is my favorite website to get info on meds from cuz it's REAL PEOPLE posting THEIR EXPERIENCE on medications. This med only got a 1.7 rating out of 5. And here is what a few of them said (there were 30 opinions listed...these are the responses I picked out that related to issues you have been having). It appears this medication may be your problem: http://askapatient.com/viewrating.as...445&name=ZETIA

Quote:

*So far the only side effect has been a benefit. For the first time in years i'm sleeping through the night. It works better then Ambien.

*salt craving, weak

*headache, sleeplessness, joint pain, muscle weakness especially the legs, general weakness/fatigue, lower back pain

*took for four months and started experiencing loss of libido and inability to maintain an erection. quit taking them and sexual function returned to normal within 2 weeks. Also, woke up every night with burning in gut, maintained a bloated feeling most of the time.

*Dizziness, severe muscle pain to the point where I had to use a cane to walk, nausea.

*After about 1 month I have developed nightly extreme leg cramps, these I also developed with Zocor but it took about 6 months.

*muscle spasms muscle pain and a severe loss of muscle mass on both my arms.

*Pain between shoulder blades, under rib cage and neck at times. The pain seems to come on spasmodically and doesn't last long and travels around the body like gas....it's a bad feeling and I don't want to continue on this medicine because of it. I have been on Zetia for a few months and these pains have become gradually worse. I've had back pain every since I started on it.

*Chest pain, severe nausea, burning sensation in my stomach after eating, vomiting. The doctor thought I had a gall stone, but after ultrasound done, found 5.3 cm mass on my liver. Side effects were worse than the doctor told me and worse than the patient information literature from the pharmaceutical company states. I never had liver problems before in my life...I have been under the care of an internal medicine doctor for the last 4 yrs. for blood sugar--complete bloodwork has been done for the past 4 yrs. The doctor says it can't be from Zetia...check out the FDA website...look at ALL of the revisions to the Patient Information Sheets...they manage to delete some of the side effects as new info. evolves. (search using keywords)

*Nervous, feels like an anxiety attack. Twitching muscles and pain and pressure in my chest. Shortness of breath, difficulty breathing. Slight breaking out on my face, and it feels like my nasal passages have narrowed.

*Severe muscle spasms in lower back and calves. I had an MI in 1995 at the age of 43. My Dad died at age 46 from a massive MI. I always ate a healthy diet so I assume my MI was due to genetics. I took statins and could not tolerate them due to muscle pain. Then started Zetia. Developed muscle spasms in back after 6 months. Stopped the drug 3 years ago and still having back pain. Have been to varied specialists who offer no reason for the spasms. I am convinced it is from the Zetia.

*Occasional pressure in ears (like changing altitude), weakness & heaviness in limbs.

*Extreme tiredness, stomach upset, dissorientation, anxiety, depression, severe joint pain. This after only 3 days. The drug was combined with 10mg Lipitor and the results were nothing short of disaster. This drug is a major hazard in the making.

And this is directly from the zetia website: (NOTE: THE DEFINITION OF MYOPATHY IS: "any abnormality or disease of muscle tissue" - wouldn't fibro be considered a form of myopathy?)

Quote:

Selected Cautionary Information

When ZETIA was coadministered with a statin, consecutive elevations in serum transaminases (>3 x ULN) were slightly higher (1.3%) than those of statins alone (0.4%). Liver function tests should be performed when ZETIA is added to statin therapy and according to statin recommendations.

Patients should be advised to promptly report muscle pain, tenderness, or weakness.Discontinue drug if myopathy is diagnosed or suspected.

ZETIA is not recommended in patients with moderate or severe hepatic insufficiency.

The coadministration of ZETIA with fibrates other than fenofibrate is not recommended until use in patients is studied.

Exercise caution when using ZETIA and cyclosporine concomitantly because exposure to both drugs is increased. Cyclosporine concentrations should be monitored in these patients.

ZETIA should be used in pregnant or nursing women only if the benefit outweighs the risk.

In clinical trials, the most frequent side effects for ZETIA alone vs placebo included back pain (4.1% vs 3.9%), arthralgia (Pain In a Joint) (3.8% vs 3.4%), and fatigue (2.2% vs 1.8%); for ZETIA + statin vs statin or placebo alone: back pain (4.3% vs 3.7% vs 3.5%), abdominal pain (3.5% vs 3.1% vs 2.3%), and fatigue (2.8% vs 1.4% vs 1.9%).

The independent effect of raising HDL-C or lowering TG on the risk of coronary and cardiovascular morbidity and mortality has not been determined.

Hon...please get off this drug.

I also was "borderline" for high cholesterol at my last blood test...doc refused to put me on any med cuz they almost ALL cause joint pain...and I alredy have enough of that.

I think the zetia is your culprit...I think you'll feel much bettr. Most of the ppl on the askapatient site were only on it a few days before they felt these nasty symptoms.

LisaM, Thanks so much for posting this information. When my dr put me on this last week I had told her about the severe pain in my legs, and she had mentioned another drug for lowering cholesterol but said it caused muscle aches and pains, and I already had enough of that to deal with. I guess she didn't know that Zetia caused the same thing. Maybe that's why none of the other drs put me on a cholesterol lowering drug, due to the pain I already had.

It sounds like Zetia may not be a good drug to keep on the market. You know that's what gets me about all of these meds, the side effects are worse than what you had before starting it. She did say that Zetia was usually added to another cholesterol medicine to give it an extra kick if the person cholesterol wasn't coming down, but she thought I needed it to start with because of mine being so high.. It sounds as if that may be contributing to my already tiredness, and pain. I have noticed that I have had heartburn really bad, which is something i normally don't have a problem with.

Again, thank you so much for posting this information. I will tell her about it for sure.

I am leaving pretty soon so I'll post when I get home to let you know what she said. Thanks for everything.

((((HUGS))))
Janet

Also...since you had liver issues....tell her about the liver issues with the zetia. Did you read about the guy who had the 5.3 cm mass cuz of it? And the other guy who had issues after taking it who never had liver issues before. I'd get off...quickly....

Please do let us know when you get back