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    Old 04-12-2004, 10:00 AM   #1
    jenna1818
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    Question Lots Of Rsd Questions~

    I have been reading through some of the old posts and it seems like there are a lot of people wth experince with RSD here so I am hoping someone can help me. I am currently seeing 2 doctors for my RSD in my leg/foot, The orthopaedic doctor who diagnosed me and the pain doctor he refered me to. Both have their own philosophy on how I should be treated and I'm hoping some of you with more experience with chronic pain can lead me in the right direction.

    My ortho doctor believes narcotics really should not be used in RSD. He prescribes pool therapy, desensitization therapy, and lets my pain doctor prescribe the medication.

    My pain doctor has me taking neurontin, elavil, percocet, but I don't get a lot of relief. I have tried numerous anti convulsants and some other anti depressants but I don't get any relief. I can not get sympathetic blocks because of a past allergy with anesthetics, so my doctor now said my only choice is a spinal cord stimulator or pump. My ortho doctor said I shouldn't get a scs or pump and if I have to I can take Vicodin but not Percocet. I am spending my senior year of highschool at home beause my pain is so bad, doesn't this warrant interventional therapy?

    I don't need to be seeing an orthopedic doctor since my injury was fixed during the surgery that triggered this, but I haven't stopped seeing him because I don't know which doctor is right.

    So my questions are:

    Which doctor should be treating RSD?

    I am in NY are there specialists that treat just RSD?

    What is the difference between vicodin and percocet?

    Is 18 too young to get a scs?

    Can RSD just go away? If that happens and you have a SCS in do they remove it?

    Is it true narcotics should not be used in RSD?

    any other advice?

    Jenna

     
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    Old 04-12-2004, 10:58 AM   #2
    Jewel2
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    Re: Lots Of Rsd Questions~

    Hi Jenna,
    It's always sad to hear of someone so young dealing with RSD. From everything I read in your post even though your doctors may have different philosophies about treating RSD you are getting the standard treatment for it. It's a shame you can't get a block. Is you PMD afraid you'll be allergic to the marcaine used in the blocks?

    It sounds like your PMD is on track with the medication choices. Unfortunately it is not an exact science and is often a trial and error situation for a while. I always thought that vicodin and percocet were the same or very similar. It could be subtle differences in the proportions of the codeine and acetaminophen. Probably a pharmacist could answer that question. Narcotics can be used in RSD, but are generally not the first choice. Usually a antiseizure drug and a tricyclic antidepressant are used first, with narcotics only being used for breakthrough pain. As you know, narcotics can be habit forming.

    The therapies your ortho has described are really good. I hope you are also getting some PT. The meds and therapy are the first choice in getting the RSD into remission. Blocks, meds and therapy would be next. Then other things like SCS and pumps. 18 does seem young - other healthboard members are young and might have good insight for you on this matter. Personally I think it is important to get it under control and keep it from ravaging your life and potentially spreading, so I would have some serious discussions with the pain doc about whether there were any other options for blocks and then if necessary discuss a trial SCS.

    I think that I would have the PMD manage the RSD and ask in to stay in close contact with the ortho. That is what I do and it works well. He faxes my notes to my ortho and my PCP after each visit. I still see my ortho regarding the mechanical aspects of my wrist, but he defers to the PMD about anything RSD.

    Can RSD just go away? I suppose so, but that's very unlikely, at least not without intervention or a miracle. I think that by the time most of us turn to the internet looking for help we are past the point of a mild case that will work itself out. In answer to the second half of your question, I don't really know - hopefully someone else with a SCS can answer that. I don't see why they couldn't remove it, though.

    Any other advice? Don't use ice on your leg, even if it feels burning hot. The blood flow to an RSD limb is already restricted and you don't want to further restrict it. Keep a journal and take it with you to doctor appts. It's easy to forget things with RSD. Educate your family and friends about RSD by printing out information. The Mayo Clinic CRPS document is very helpful with this. The more they understand, the more support they'll give and that makes a difference in recovery.

    Feel free to ask more questions. Please keep us updated with your progress.

    Take care,
    Julie

    P.S. I just had a thought. Are you alergic to anesthetics or the preservatives used in them. Talk to your doc about this. We discovered this with my daughter. She was actually allergic to the preservatives. Just a thought.

     
    Old 04-12-2004, 11:28 AM   #3
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    Hello,

    I am from NY also.. where abouts are you in NY.. I live in Upstate NY.. I have a wonderfull doc that is treating me! I have had RSD now for almost 2 years and have a stim implanted and had it after only having RSD for 6 mos... I am going to have another stim put in my leg that is hooked to the sciatic nerve bc the pain is so bad and the RSD is so bad in my Rt foot and leg.

    To answer your Q's:

    1. I really only see my PM doc. I see my orto 2 times each year now just to get xrays of my RSD foot and ankle and to see how far the osteoporosis has progressed.

    2. Like i said before i live in Upstate NY and have a wonderfull doc. Buthere are alot down in NYC too.. I know that my doc is the only one in the area that does the stims and interventional pain mangagement.

    3. I am 26 and had my stim put in last year so i was 25, but my doc put a SCS in a teenager the year before mine, so yeah, even on the medtronics site they show and have stories about kids with SCS and pain pumps.

    4. You will always have RSD, It may go into remission similar to cancer but anything can bring it back , like a stubbed toe to a bee sting to a broken bone or another surgery.. and if it does go into remision and you want to have the generator taken out then you can , but you can not have the leads taken out because they are scarred into your spinal cord or the area nad its impossible to remove without causeing problems..

    5. My pain doc will only give me Lortabs because #1 he doesnt want me to over take them and then become an addict after the RSD is put into remision and #2 that narcotics really dont take the RSD pain away. They only make it somwhat tolerable and then the pills kill your liver and stomach and you can build up a resistance to pain and thats the last thing you really want.

    My other advice is dont use ICE at all, and keep the RSD limb moving. And the SCS might be the only good plan to use bc of your history with anesthia and its not that bad of sugery.. its a in and out the same day surgery. My Stim worked for me about 3 mos but I have a very sever and agrrresive RSD and when i went to see my PM doc it was to far advanced, but he wanted to try it. I was in heaven for those 3 mos and if you are early in your diagnosis i would look into haveing it done. And being so young this could be a good thing as to putting it into remision so you can have your life back!! I know i would give anything to have my old life back and being able to work and walk arond and SLEEP!!

    If you ahve anymore Q's let us know!! HOpe you are doing better !!

     
    Old 04-12-2004, 12:37 PM   #4
    Horsie Nutt
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    Re: Lots Of Rsd Questions~

    Hi Jenna. Welcome to HB. I am so sorry that you have RSD. When did you start with the symptoms? What kind of injury and surgery did you have? This is a great place to come for information, support, to share experiences, or to vent when you are having a tough time/day. Everyone here is extremely helpful and kind, and we all do truely care, as I am sure you've been able to tell while reading through our old posts. You'll get great information, better here than anywhere on the internet in my opinion, as you'll get information from people who've been there, done that, and can tell you about there experiences (but it's still very important to research RSD on the web). What you choose to do with the information is up to you of course, but it will help you become more informed, which is very important when mapping out a treatment plan with your doctor.

    Julie, as usual, gave you good information. RSD is so complex, which is why they changed it's name to CRPS (complex regional pain syndrome). There is no rhyme or reason to it, and no-one knows why one person's RSD spreads to other parts of their body while another person's doesn't.

    You asked good questions, and you seem very intelligent in the way you are trying to take charge of and become informed about your condition. That is terrific, be proud of yourself.

    "Which doctor should be treating RSD?" I would let the PM treat your RSD. Many of them specialize in the treatment of it. He can prescribe the pool and desensitization therapy, as well as your meds. BUT, if you do decide to see both doctors, make sure that each doctor knows *exactly* what the other is doing, and what meds are being prescribed to you.

    "I am in NY are there specialists that treat just RSD?" I am not in that area, but I am sure that there are several that do. There may be a Mayo clinic up there that can help you? Do a search on the internet and see what you can come up with. I am sure someone on this board might know of someone.

    "What is the difference between vicodin and percocet?" Percocet is Oxycodone Hydrochloride and Acetaminophen. Other brand names are Endocet, Roxicet, and Tylox.

    Vicoden is Hydrocodone Bitartrate and Acetaminophen.
    Other brand names are Anexsia, Co-Gesic, Hydrocet, Lorcet, Lortab, Maxidone, Norco, Zydone.

    "Is 18 too young to get a scs?" That is a tough question. It is also a personal choice question. If I were you, I'd try to find out which anesthetic you reacted to, and how you reacted. If you know this information, it might be possible for you to get blocks. (i.e.: If you were having surgery, and they were putting you to sleep, they would not be using marcaine to do that, so it might be okay for your doc to do marcaine injections. Also, it might be possible for you to have epidural infusions instead). I would look into it, to see if there is a chance at having other options.

    "Can RSD just go away?" My PM has told me in the past that he has had a few patients that had their RSD "just go away." He said that it is important to use the affected limb to try to stop atrophy, and that, basically - this is not verbatim, but it is close, that when these patients tried to resume as normal a life as they could, it took their mind off of the RSD, and after a while, it went away. Is this true? Beats me, but I hope that there is the possibility that this could happen.

    "If that happens and you have a SCS in do they remove it?" I don't know for certain, but I would want mine out. But then you have to remember that surgery can trigger RSD, and you already have it (RSD), and even though it is in remission, you never know what will happen should you choose to have the surgery to remove the stim. This is another personal choice question.

    "Is it true narcotics should not be used in RSD?" I don't think so, and neither does my PM, but there are those that do believe that. I am thankful to be able to take something that makes it a little easier to get through the day.

    "any other advice?"
    *NO ICE like Julie said.
    *Warm soaks with epson salt, and/or a parrafin wax machine for acute flare-ups.
    *GENTLE physical therapy. Don't let them push you to the point where the pain gets bad. That won't help you, it will hurt you.
    *Use your foot! Walk, stretch, do something (just don't *over* do it). Prevent atrophy.
    *Hit the internet and research as much as you can so you can make informed decisions regarding your treatment.
    *Remember, YOU, NOT your doc, has the final say with what you want to, or don't want to do/have done. If you are not comfortable with something, DON'T do it. Don't let your doc make you feel that you have to have something done simply because he is a doc and says you ought to/need to. That's hogwash. It is his job to inform you of your options, it is your job to choose which options you choose to go with. That's why researching RSD is very important.
    *Print out some of the articles and poems and letter that you find, either here, or elsewhere on the internet. Share them with your family and friends. try to help them understand RSD, so they can help you.
    *Come here and share your experiences, both highs and lows with us. Vent when you have a bad day. It's good to talk with other people who truely understand what you are going through. If a person does not not have RSD, then they will never truely understand.

    I hope I was able to help you.
    Sincerely,
    Cathy

     
    Old 04-12-2004, 06:59 PM   #5
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    Smile Re: Lots Of Rsd Questions~

    Hi Jenna,

    Welcome to the board. As Cathy said, you really do seem very intelligent and mature. I also live in NY--on Long Island. I've had RSD for 18 years, since I was 15 years old. I can't add much to what has already been said. About the ortho vs. PMD...I used to see both, up until last year. Then I realized that there wasn't really a point in my seeing the ortho since like you, my injuries were fixed so I stopped going. Now I see my pain guy to refill my pump. I have a morphine/bupivicaine pump which helps so much I can't explain. It has changed my life! I know it might be scary to think about the possibility of an SCS or pump at a young age, but as you said, if that's the thing that will help you to lead a more normal life, then why not? I hope you stick around so we can get to know you better.

    Sharon

     
    Old 04-13-2004, 12:25 AM   #6
    Horsie Nutt
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    Re: Lots Of Rsd Questions~

    Wow. I type slow! Bryn, your post wasn't there when I started typing my reply, lol.

    Jenna, Bryn is right. I should have clarified this also. RSD can be treated, but it can not be cured, so when I said that my doc said that these patients had their RSD "just go away," I meant that it went into remission, not that they were cured. But as Bryn said, anything can bring it back... stubbing your toe, surgery, hitting your knee on something, anything, even a splinter.

    Take care, I'll talk to you guys soon. I'm going to try to go back to bed.
    Cathy

    I also wanted to ask. Since you did have the problems with the anesthetics, what will your doc use to insert the stim? Will he use sedation or a local? If he can do that, then he should be able to do a block I would think. But then again, I'm not your doc, and I don't know all of the specifics of your case like he does. it's worth asking him though.

     
    Old 04-13-2004, 06:33 AM   #7
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    Re: Lots Of Rsd Questions~

    Quote:
    Originally Posted by Horsie Nutt
    I also wanted to ask. Since you did have the problems with the anesthetics, what will your doc use to insert the stim? Will he use sedation or a local? If he can do that, then he should be able to do a block I would think. But then again, I'm not your doc, and I don't know all of the specifics of your case like he does. it's worth asking him though.
    I guess a Woot and a Daisy think alike ! I was wondering the same exact thing. If he thinks he will be able to implant a stim, then why can't he do a block??
    Julie

     
    Old 04-13-2004, 02:05 PM   #8
    jenna1818
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    Re: Lots Of Rsd Questions~

    I can't thank you all enough for your wonderful replies! I feel much better knowing I can come here and "talk" and get great advice. I'll try and answer all your questions (sorry if I miss any) and I have a few more too.

    In my first post I forgot to mention how I got RSD. It started with a sprain @ cheerleading practice. It didn't get better so the team physician recommend I have arthroscopy. The arthroscopy showed nothing wrong. A "perfect" joint. Well 3 days later the burning started, and my other ankle symptoms persisted. I had an MRI and my surgeon then sent me to an ankle specialist. The specialist told me I had RSD and that I needed lateral ligament reconstruction because the damage was "triggering" the RSD. Let's just say the RSD was mild before the surgery, and now has spread all the way up to my hip. I didn't do my research before hand so I wasn't aware that a lot of doctors say surgery should not be done on a limb with RSD. Are there any exceptions to the not having surgery rule w/RSD?

    I noticed in many of your replies you say not to use ice. Right now my therapist is using ice. Basically my therapy consists of whirlpool, massage, compression pump for 40 min, ROM exercise, ultrasound, heat, and stim w/ice. I do this 3 times a week then pool therapy twice per week. I have also been told to use ice when I use my TENS unit @ home 2x per day. To be honest the ice and compression pump HURT, and on the rare occasion I complain to my therapist about the pain I am told it is a necessary part of the desensitization process. He also tells me I will be in pain since I can't receive blocks. Let's just say I have to hold back the tears till I get home after every therapy appt. Apparently my therapist mainly deals with RSD, and has for 10+ years that's why I was referred to him. I'm suprised he is using ice now. Should I refuse ice treatment? Is it ok to use a compression pump on a leg with RSD?

    I am upset I can't get blocks. It seems like they can really help people, and I know if they worked I would be able to tolerate PT a lot better. I have a history of reactions to local anesthetics. Originally with novacaine at the dentist when I was younger. Then I used solarcaine on a sunburn a few years ago and had a bad reaction. If I chose to get the SCS I was told for the lead insertion I would be in "twighlight sleep" w/analgesia then a general for the rest of the surgery.

    I saw someone mention epidural infusions. I did a search and didn't find a lot of info on them. Has anyone had them done? What is the procedure like?

    Again thank you for all the advice and support!

    Jenna

    Last edited by jenna1818; 04-13-2004 at 02:09 PM.

     
    Old 04-13-2004, 05:25 PM   #9
    RSD_Angel
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    Re: Lots Of Rsd Questions~

    Where in NY are you ???

    Also you asked about epidural infusions. I have had 3 of them and are WONDERFULL!! With me and my docs, they put the epidural in for 6 days and have me stay in the hosp for that long as well. Because he turns the epidural up high and i cant walk at all because it numbs everything below the waist. While in the hosp for 6 days it was heaven.. absoblutly NO PAIN at all, but once the epidual came out the pain came right back , but thats me and only bc my RSD is so advanced. Alot of us have had these and been able to tolerate the pain and some it triggeres it into remission!

    About the ICE.. NEVER...NEVER.... NEVER use ice on the rsd limb or area... omg..thats the last thing that you need... the ICE can trigger a big flare up and also make the RSD spread too!! thats why it hurts so mcuh after you get home after using the ice... good lord.. tell your PT to stop using the ice and only warm moist heat and warm pool therapy!! Look up on the other sites and they ALL tell you that ICE is the #1 thing not to do to the RSD limb!

    Keep in touch!! Glad you found us!!


     
    Old 04-13-2004, 07:49 PM   #10
    Jewel2
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    Re: Lots Of Rsd Questions~

    Hi Jenna,
    The ice is bad because one of the problems with the RSD limb is that the blood flow is already restricted and putting ice on it makes it even more so. As far as the desensitization reasoning, the ice is way too drastic. You should be starting with warm and cool water that are not that far apart in temperature and very gradually increasing the difference (some people can tolerate very warm water right away, but I can't). I've been doing the constrast baths for months now and I'm still not even close to using ice. One reason for the blocks is to increase the blood flow into the limb - ice does the contrary. You need to somehow convince your therapist of no ice. I would simply refuse.

    As far as compression - to some degree that does help reduce the swelling in the limb, but it should not be tight or cause discomfort in any way. The SNS will just keep reacting to pain so you don't want to create more by squeezing your foot/leg unnecessarily hard.

    Keep researching and politely communicating to your therapist. If they won't receive the information and make changes to help you, then you may have to draw a firm line. Although it takes hard work and at times discomfort, remember that 'No pain, no gain' is the wrong approach to healing RSD.

    Good luck!
    Julie

     
    Old 04-14-2004, 10:07 PM   #11
    Horsie Nutt
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    Re: Lots Of Rsd Questions~

    Hi Jenna. WoW, um...<sheepish grin> I'll be truthful. I'm trying not to exert too much of the anger that is building up inside of me since reading your post a minute ago. You are the second person this past week or so who has written about their therapist using ice on their affected limb.

    It boggles my mind that there are so many so called " medical professionals" who have no idea, no clue what-so-ever, not even an *inkling* of the pain and anguish they inflict on people because of their lack of knowledge and simple understanding of the profession of which they supposedley specialize in.

    I would not be able to be polite to my therapist, who has mainly dealt with RSD for the past 10 years (and thus I am sure considers themself an 'expert' in the field). But then, I wouldn't have to be nice, because I would not go back to him/her, EVER. How can someone be so ignorant to their own specialty?!!

    That said, I feel better. Sorry for venting.

    After reading your last post, and then re-reading your first post, if I were you, I'd drop that ortho like a hot potato and let your PM treat your RSD and refer you to a DIFFERENT physical therapist.

    I had 2 epidural infusions. I have upper limb RSD, so it is different for me in that I could walk around where Bryn could not when she had hers. My doctor used a mixture of marcaine and fentanyl, but there are other medicines that can be used. The first one I spent 5 1/2 days in the hospital in absolutely no pain what-so-ever. It was wonderful. When he removed the catheter and the medicines had time to exit my system, I discovered that I was about halfway into remission. I was in heaven.

    The second one did not work so well. I believe this was for 2 reasons. The first being that it was not done soon enough. My symptoms had come back to almost as they were before the first infusion (insurance company BS), and the second reason I believe, in hindsight, was because instead of me staying in the hospital, I was sent home with the catheter on home health care. I have 2 children, and the 3 of us stayed at my mother and sister's house.

    I must have been pretty looped on the fentanyl, because I had a gap in my memory of that 8 days (and I slept for 2 more days after the cath was removed). My sister tells me of a 2 hour "french chef" impersonation that I did one night to entertain the kids (my sister has a young daughter in addition to mine being there). I have no recollection of that what-so-ever. I know I did not have any pain, but I also did not get any rest, thus my hand didn't get much rest. My mother and sister said that I was always feeling that I had to take care of my kids, and do this or that for them, and that I was not sleeping well at night either. In the hospital, I could sleep whenever I wanted to because I basically stayed in bed, where here, I was always up and around trying to take care of things like 'normal'.

    Anyway, please take our advice about the ice. This really is a serious matter, and ice WILL cause your RSD to spread. Oh, you asked if there were any exceptions to the not having surgery rule. You know that RSD can become worse and spread, so what surgeries you need to have done are up to you. Stims and pain pumps are surgeries, but alot of people have them done. I would avoid unnecessary elective surgeries myself (plastic surgery and the like), but if your appendix bursts you have to have it removed or you will die. I'd opt for removing it

    I'll be keeping you in my prayers,
    Cathy

     
    Old 04-14-2004, 11:31 PM   #12
    Gina2005
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    Re: Lots Of Rsd Questions~

    Hi Jenna

    I just wanted to say hi. I'm also a senior in highschool, and only go once a week to take exams or make up lab work I can't do at home. I know it sucks missing out on senior year, watching everyone have a good time, and being stuck at home in pain. The people who post here are awesome. No matter what questions you have someone here has been through it and can answer it.

    Hope to "see" ya around

    Gina

     
    Old 08-10-2005, 07:31 PM   #13
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    Re: Lots Of Rsd Questions~

    Hi Jenna,

    If I understood correctly your lower leg (foot) is affected? If so, have you heard of Bier Blocks. I have had three now. Two were successful. I'm new to the board and maybe you don't check this too often but if so I could send you a link on Bier Blocks and further elaborate on the procedure and my expierience with CRPS

     
    Old 08-10-2005, 08:59 PM   #14
    Jewel2
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    Re: Lots Of Rsd Questions~

    Welcome Leftleg! I wasn't sure if you noticed that this thread is well over a year old. Jenna hasn't been here since then.

    But it is very thoughtful of you to offer a suggestion. An aquaintance of mine, here where I live, has RSD in his leg and he gets the Bier blocks. They seem to help him for a while, and then wear off. But they keep him going along and allow him to continue working.

    How long have you had RSD? I have had left hand and wrist RSD for almost 2 years. I had Stellate Ganglion Blocks in the beginning and they helped me a lot.

    I look forward to getting to know you!

    Take care,
    Julie

     
    Old 08-11-2005, 09:00 AM   #15
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    Re: Lots Of Rsd Questions~

    hi all...i hope you all are well as can be expected..and jenna sorry to hear about your RSD as well as all of you that read this..ummm i have had RSD since 2002 and what i wanted to say as far as medications are concerned is that medications and choices are between YOU and your doctor...you gotta do your homework too as far as choice too i think..and i think and agree as most of you do that there is not a blue print or it is not written in stone as to what med works and what everybody should take...but my comments are about narcotics...for me without finally being put on a narcotic and i take the duragesic patch..at this point in time for me the patch has helped alot..so many many other medications we tried just did not work..my pain is whole body and not just from RSD but other spine problems now and perhaps RSD caused all this but i had no relief at all from the other meds many of you have mentioned..my pm talked about a scs but i'm just not ready to go there yet. i mean the implant process..its too scary for me right now..ummm for me, i take neurotin, it helps for some arm and leg pain. and if i forget a dose or am late those types of pain incease and the redness in both my hands becomes more blood red..i take zanaflex for those deep jerking muscle cramps..and elavil and cymbalta for (i like to say..mind control) and for pain they say..i have ultram, daracet, vicodin, ultracet and there is more but i cant think right now but those just did not help...so the patch and the other meds do help lower my pain level alittle..in ending the choice of meds have to be between you and your doctor and i advise doing your homework too..this site and the people here offer a wealth of information and Support and i am glad this site is here..thanks to all of you..there are risks with all medications so you can get alota information here and more over Talk to your doctor...
    thanks for reading, but this is what this site is for. to offer opinions and helpful information.
    i hope you and all of you have a LOW pain day and if possible have a NO pain day...

    Last edited by timmko; 08-11-2005 at 09:16 AM. Reason: spelling

     
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