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

hi mark
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?

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

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! I hope you are well soon. Lil

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