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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 |
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In fact, this is a quote from weather.com: Quote:
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? |
Janet Dear...
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:
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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:
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 |
Yes those stories are unbelievable and I really don't want to add fuel to fire with my liver panel being high anyway. I really do appreciate you and the information you provided.
I will let you know when I get back.. Hugs, Janet |
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can you tell me what you feel with peripheral neuropathy? i started this pain in my feet where i can hardly walk sometimes. sometimes i can't even stand on my feet. my neurologist said peripheral neuropathy. i've read on the net and it says it's caused by diabetes or alcohol. i don't have diabetes and i don't drink any alcohol at all. |
hey Janet
if you aren't keen to try any more meds then could something like epsom salt baths help? or elevating your legs when you are sitting etc? also if you have liver probs that can make you tired can;t it? (I think so..?) Hope dr goes well! love Rosie xxxx |
Janet and All,
Boy, you sound exactly like me. I just spent the last week but especially the last two days in agony. It is nice to know that I am not the only one in this situation! I live in Pennsylvania. I can tell up to a week before rain or a winter storm that it is coming. I don't even watch the weather anymore because I am more predictable than they are!!!!! I am so glad you posted your message but I have NO IDEA how you could work in your condition! I can't even cook a meal let alone work! It sounds like your RSD is spreading...I really hate to tell you that. I had a car run over my right foot and then it travelled all over my body and now I have full body RSD, Fibromyalgia, Rheumatoid Arth., Osteopenia and Osteoporosis and Arthritis in my right foot!! I had to laugh when another member said she is opiate tolerant because that is how I feel. I never used to take Tylenol before 2/05 and now I am ready for Ketamine!!! It is terrible and I get so frustrated and angry. I spent the entire yesterday crying from all the pain that never went away. Hang in there and try to rest as much as possible. Take care, Kathy d |
Dear Kathy
I am sorry you have had such a hard time..... how long have you had RSD? Will your dr prescribe ketamine? I have been on it for just over a year and it has made a real difference to me. (Ok. being honest not a magic difference, but it has worked far better than any other pain killer...... even MST 360 and fentanyl etc etc didn't work for it but the pain can hit as low as 8/9 sometimes with the ketamine. If you have any qs feel about ketamine feel free to PM me. I also have full body RSD - but it was an accident to my right wrist. I can identify with being unable to do stupid things like cook - due to secondary dystonia I have almost no movement at all (currently 1 finger, 30 degrees in my wrists, a small amount in shoulders and back and my jaw will open half way) so I have to have carers and all that stupid stuff.... but I'm in uni now (I'm 20...oops no.. I'm 21 ! a grown up now. hahaha). I sometimes feel like a barometer and unfortunatly decided to go to uni in the coldest, wettest campus in the country (I live in the UK). Like you cold really exarberates my symptoms! Things will get better - even if the pain doesn't you can learn how to live with it, actually thats wrong, you learn to survive daily with it and life continues - that's what I've learnt. When I first got diagnosed I never imagined I'd be able to manage a full time course at college, be able to drive (adapted car), etc etc.... but with help (carers/ assistive technology) there is not much I can't participate in to some degree... the frustration is the worst though - Leah (my current live in) was having a bath and I needed my meds and it was like - I can see the bottle, I can see the syringe.... but I can't move. Almost SCREAMING with frustration by the time she arrived. Take care Rosie xxx PS isn't osteopenia the condition before it is upgraded to osteoporosis? i could be totally wrong? |
Use of statins withFM
I also have very high choleserol -over 400 now . It has been in the high 300's for 15 years or since they have been testing it. I refuse to take any cholesterol meds becasue of the risk of muscle pain and weakness associated with using them. Because of my FM I do not want to risk any more pain than I already am dealing with. I agree with the others on the board. Try taking niacin, red yeast rice, omega 3 and 6, etc. Check out the vitamin forum here for ideas to reduce cholesterol without drugs.
Also, my knees are now hurting. I was on my feet for a long time and overdid it and triggered off the FM in my knees and ankles. I never thought that would happen. I was feeling pretty good that day so I was on my feet much longer than normally. Who knows where this FM orRSD is going to hit next. I just now know that I am having more pain and difficulty walking than ever. Very frustrating Good luck. Looks like we both have the same conditions FM and RSD. Very frustrating conditions and no meds have helped either of them for me. I must live in this chronic pain daily.l I try to be cheerful but it is difficult sometimes. Sydney |
According to the commercials, oatmeal helps lower cholesterol. Be careful taking the niacin. A doctor presciribed niacin for me and I developed headaches from it. Regards, Lil
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Up for discussion...
Hi Janet,
Ok...you won't believe this. On April 11th, my cholestrol was 278. About 1 year ago, I was 205lb. Today I'm 137lb and a size 4. And my chol. is 133. I was placed on 10mg of Zocor. I completely changed my eating habits. Not trying to start an arguement here for sure. But, everybody reacts differently to all medication. All cholest. meds have side effects of muscle pain/cramps to some extent and some will have an effect on the liver. But how the variety of cholestrol meds on the market today will effect you personally is a hit and miss. This is why it is very important to have blood test to monitor the liver and your cholesterol every 3 months. With this said, I was placed on zocor with a very high cholesterol, and my liver was fine, but even though I had leg cramps before going on Zocor, I only had very bad pain at night. My Cholesterol went down with the med and a great diet, but leg cramps at night even though I've been off Zocor for more than a month now. My dear friend was placed on Zetia...didn't do anything to her liver with her blood test, but didn't lower her cholesterol at all. She has been on many different chol. meds and found that Zocor works best for her as all the others made her liver #'s go up. Her husband who has been very ill for well over a year and has liver problems among other medical problems was placed on Zetia about 1 month ago. He's been on many cholesterol meds but because of his liver problems was taken off them. His cholesterol skyrocketed with his last blood test and now placed on Zetia. It lowered his cholesterol 75 points, and his liver test went down to normal. In fact all his blood tests are falling into line and the only med that has been changed is the addition of Zetia. We are shaking our heads in amazement. The quote that was taken on a recent post was taken from an advertisement for an "alternative" natural drug. Not an approved FDA medication, I believe. Zetia, is used for people that have Liver problems as it is used by reducing it's absorbtion of cholesterol in the digestive tract. It's all very confusing but don't be mislead by these alternative natural drugs. Again, this is just my opionion. I don't like to preach and don't participate in arguements. But, remember we are not doctors. Please everyone keep in mind that all of our bodies and systems are different and the most important thing especially with cholesterol meds is to have blood tests every 3 months! Do not go longer. This friend and I laugh as we say "this is why they say doctors are 'practicing' and they should just quit 'practicing' on us...huh? laffs. I'm truly not doubting that patients have had serious problems on Zetia. But in my opinion there isn't a medication on the market that doesn't cause serious problems or has serious side effects. Again, in my opinion, the fewest medication you can be on the better you are as there is no interactions. And of course, the lowest dose possible to keep you comfortable is the best course of action. The words above are my opinion...and for those of you who don't know, I'm a lovely pharmacist daughter and grew up owning 2 pharmacy's, in So. California. One across the street from the studios...seen it all. laffs. I'll be 7 years with RSD on December 19th. And, I've known Janet...er well 'bout that long...huh? Never in a million years did I think that I would be tossed into ring and go up the ladder of pain meds like of Oxy and Methadone! But of course, we must control our pain. I just try to help when I can with my knowledge on medication. And my father, bless him at 84 still is as sharp as a tack! Janet have you ever tried Trazodone for sleep? This was the very 1st med I was placed on. Getting a good night sleep is absolutely the most important thing for us. Getting good REM sleep is important. Most other meds don't provide this. Whereas, in my doctors opinion this very old medication works wonderful for sleep, pain and is an antidepressant to Boot! We all need this in our repetoire! I'm sorry to say, Tylenol PM is truly only for use as a "once in awhile" sleeping aid. Not an everyday sleeping pill. I used this prior to getting RSD and my father blew a gasket! This stuff will do some major harm in the long run. Especially if you use regular Tylenol during the day as then you are receiving far to much acetaminophen into your system. Tylenol PM has 1000mg acetaminophen in each dose which truly you don't need in your sleeping aid. And while I'm at it, Ambian I'm told also doesn't provide REM sleep and also isn't for everyday use in RSD patients. Trazodone is the best sleep aid for RSD patients. Asleep in 20 minutes and sleep through the night. And dream! Ok...sometimes it does cause some strange dreams and nightmares, but doesn't everybody have nightmares on occassion. I like the occassional excitement in my night! Janet...you know me. Just putting a different prospective on this issue. Please consider eating very healthy. When you go shopping at the grocery store, try only shopping the outside perimeter aisles and don't go down any inside aisle! All fresh food. Boy will this be a quick and easy way to lose weight! All crap food and junk food is down the inside aisle! Hopefully you will not need any cholesterol medication very quickly! Hope this helps. Talk soon. K...I got this out. I'm down with an awful cold, flu, whatever. Earache, sorethroat, headache, fever, you name it I got it. Back to bed with me. But cut and paste works well. With aloha, Dana |
Dana: I am going to bed now as well. It is 2:30 in the afternoon here and I am still in my flannel gown and heavy robe. I must have the same cold as you. Now if I just had some Puffs with lotion instead of my regular tissues. My nose looks like Rudolph the reindeer!:D I hope you are well soon. Lil
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trazadone ??????
Oh dear - I can't remember your name but you have a pineapple beside it. Sorry.
Anyway - my neurologist recommended trazadone years ago. He was one of the top RSD docs in the US (Florida) I tried up to 150 mg and it did nothing for my sleep. I know it is a good and reliable drug and wish it would work. Maybe I could try it again at a higher dosage. Since I am polymorphic and don't repsond to any pain meds probably the sleep meds are similar. However, I do respond to xanex for sleep but must keep upping the dosage. Any thoughts on the trazadone? Also, I was just prescribed hydrocortisone for pain. Not sure that will work any better than any others. I've tried them all at the higest doses. Very frustrating to not be able to find any med for pain relief. I may have P450. (a condition where people need very high drug doses as their system does not process them normally) Jane posted a site about that condition. I am sharing the article with my Dr. at my next visit. Thanks, Sydney |
Lil: Gosh, I'm really sick this time. The flu I think. Thanks for the well wishes. You get better too. I've been in my nightie and robe since Thursday! Never took a flu shot yet as I've been sick and have been tested so much with that tummy stuff so long. I just finished hopefully the last an final test Wednesday! Now this.
Sydney: Hi, I'm Dana, nice to meet you. We are all so different and react so differently to meds. RSD is so very frustrating. What works for one doesn't work for another. The field of medicine is frustrating. How about when you need antibotics? Do you do ok? Having your body not react or process properly to antibotics given for infection could be truly very dangerous. I do know that if you need let's say one type of antibotic alot your body may become immune to that antibotic so it not all that great to go on antibotic alots. ie: every time you get lets say the common cold or flu etc. Let the body fight it off if it can without antibotic. But does your body respond to the normal dosing of antibotic when necessary? Or is this part and parcel to this condition called P450. Scary. Aloha! |
I want to thank everyone for their input on this topic. I did go to my appt friday and when I told my Dr about the increased leg pain she took me off of the Zetia. She said I would just have to watch what I eat and try to get it down that way, because most of the cholesterol drugs do cause additional leg pain, and with the RSD and Fibromyalgia I just don't need additional pain.
Dana I did try trazadone years ago, but don't think it worked well. I am like Sydney, meds just don't affect me the way they do other, even antibiotics. There have been time that I had taken oral antibiotics for an ear infection without any help, then I did a week of antibiotic shots, still didn't clear it up, so I had to go to the hospital everyday for IV antibiotics, and after a week still had an infection. Strange, huh? Well I am a junk food junkie and have always been able to eat what i want and didn't really gain weight until recently. If anyone has some good low cholesterol ideas please let me know. Recipes that any of you use? LisaM, thanks for posting all of the info on the Zetia for me Friday, and I am sorry I didn't get back online this weekend, but i was in bed with a migraine. I didn't feel like coming to work today, but needed to. I hope you all have a good day. Hugs and thanks to you all, Janet |
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