I Need Help, Please!

Discussion in 'Fibromyalgia Main Forum' started by clementyne, Sep 14, 2011.

  1. clementyne

    clementyne New Member

    I will try to keep this brief but, I'm hoping if I write it out, I will be able to make sense of it myself & maybe someone can guide me in the right direction.

    I suspect I have had FM since I was in my 20's - maybe longer. I remember waking up as a kid with pain in my legs/knees so bad that I felt it would drive me crazy. My parents always said they were growing pains ... & eventually the pain went away.

    Then in my early twenties my knees started to hurt again. To the point where I often limped for months @ a time, walking up/down stairs was excruciating! I went to the Dr. but they could never find anything wrong & I was left feeling foolish & as if I were 'faking'. Eventually, it would go away & I would go back to life. Which I loved! I was very active with my group of friends. Danced @ least 3 times a week & generally had fun traveling with a great group of people.

    As I neared the end of my twenties, I began to notice pain in my butt. I exercised regularly & thought I had just strained a muscle. It came & went & I didn't worry too much about it. Then I came down with what I was told was Encephalitis. My head hurt so bad all the time & I was so tired I could barely move. I missed a month of work but even when I went back, I was never the same. I started to gain weight - not from over eating but from under activity! Truthfully, I no longer felt like doing anything and I sort of checked out of life. People have asked me if I was depressed & honestly, I would have to say no. I didn't want to die ... I just couldn't stay awake! And that made me sad because I no longer had the energy to get though the day. I was scared, too because I thought something bad might be wrong with me!

    In my mid 30's, I started my own home based business which I loved but my health was acting up. The headaches came back, the pain in my butt came back and brought terrible pain in my hips & hands with it. I couldn't afford health insurance & never went to the Dr. just treated myself with high doses of Ibuprofen. If I went on a long shopping trip, getting back to my car would be so painful that I would be in tears before I got to it. I loved to go antiquing & to flea markets but the the pain was too much & I gave it up.

    Then, nine years ago, I 'met' a man I had known all along & we were married. My 1st & only marriage @ the tender age of 46! Two months before our wedding, I took a bad fall walking my dog & hurt myself pretty severely. My tailbone still hurts all these years later & I cracked the back of my head so hard I had a goose egg the size of ... well, a goose egg! I had an infection on one foot from the cement burn I got from that fall & I still carry the scar from it.

    From then on, my health went down hill. My husband and I traveled out of the country for our Honeymoon, we hiked & did a little mountain climbing, spent every moment we could in the great out doors but I knew there was something ...

    A friend of my husbands was diagnosed with Fibro (which I had never heard of) & she was telling me about the pressure point pain & a light went off! Because, I now had insurance, I had been to the Dr. & mentioned my pain ... he sort of blew me off & since I already thought I was a big ol' whiner, I let it go! But when friend-in-law told me about Fibro, I went back. I had been having the tender points for years! If I touched the inside of my elbow, I would about come out of my skin! He tested me & I had all of them! Everyone listed although I did not know what or how many there were!

    He put me on an antidepressant (Cymbalta) for a month. It didn't do anything & he said he thought it was a disappointing drug anyway so he took me off. We have tried some things in the last five years or so but nothing really seemed to work. Ambien for sleep but it made me behave strangely & I quit that on my own (although, I have found that 1/4 - 1/3 of a tablet will relax me enough to let me go to sleep if I am really having trouble). My Dr. put me on Vicodin for pain, which, while it doesn't take the pain away @ least makes it manageable (mostly) & Flexeril, I use 1/2 the prescribed dose a few times a week of the Flexeril, if I need to, I am prescribed 1 Vicodin q 6 hrs and high doses of Ibuprofen 3 -4 x daily. Those are the only drugs I take for Fibro.

    So, here's the thing. He would not renew the Vicodin prescription & that is what gets me through the pain. I do not over take it. If I can get by without it, I don't take it. In fact, I so often don't take it that I have @ least a months worth of excess pills. If I can work through the pain that is what I try to do!

    I'm not looking to get high! I'm looking to have a life & I am terrified that the pain is going to shut my life down! Even with them, I struggle with my day to day duties & by evening I am zonked! Anyone with Fibro knows that living in pain day after day wears a person out & toss that on top of the fatigue that comes with Fibro ... well, it's no fun!

    Maybe, I need something else, I don't know ... HE"S the Doctor! I don't know what to do. From the get go, I have felt that we had a personality conflict. I'm fun - loving, he is quite sober & solemn. I never feel like he exactly knows who I am even though I've been seeing him every 4 months for the last five years!

    In fact, the last time I saw him was just after my sinus surgery (He only referred me to a surgeon & was not the one who diagnosed my condition. His colleague, whom I saw over the winter holidays because my Dr. could not see me, diagnosed me!) when I went back for my usual 4 month visit which was NOT about the surgery - all he did was look in my nose, tell me to stop using the stuff the surgeon had me on and sent me on my way. The nurse asked if I needed another appt. & I told her he usually wanted to see me every 4 months but had not told me that & the nurse said "Then he doesn't need to see you"! I went home & told my husband my Dr. didn't know who I was, today!

    Now, I just don't know what to do! Fibro has such baggage and I have spent so much money on tests that I don't want to have to start Dr. shopping & have to do it all over again!
    I guess my questions are these;
    1) Do the drugs I have been taking seem reasonable to you?
    (Early on I asked Dr. about addiction & he said that it was highly unlikely for someone taking what I am taking for the amount of pain I have to become addicted)
    2) Do you take something different? If so, how is it different? How does it work for you?
    3) What would you do if you were me?

    Thank you to any and all who answer this missive!
    I appreciate being able to pour my fears, worries and angst out on you all!

    I hope we dance!
  2. gb66

    gb66 Well-Known Member

    I'm sorry you're having so much trouble. It sounds like you've had a lot of pain in your life. I don't take prescription medication for pain because I have so many drug reactions and side effects, so I can't advise you on what to try.

    I just wanted to let you know I'm thinking about you and hoping you'll feel better soon. I hope you can find a doctor that you're more comfortable with and who listens to you. I've been to many doctors over the course of this illness (CFS/FM) and still don't have one that I have complete confidence in. She does listen to me though and is a compassionate person. That means a lot. GB66
  3. Mikie

    Mikie Moderator

    First, I'm so sorry for all you've been through. I've been here 11 yrs. and your story is legion. Ignorance among docs is one of the main reasons we do not get diagnosed and do not get help. I suggest you find a good doc who is knowledgable in our illnesses and a good pain management doc (could be one and the same). If you post asking for a good doc, putting your location in the title of the post, our members will respond if anyone knows of a good doc. There are websites where you can find docs who are knowledgable about our illnesses. Best of luck to you.

    May I suggest a book, "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. St. Amand. It's available in paperback. He has a protocol, the Guaifenesin Protocol, which is designed to reverse the symptoms of FMS. It worked for me but others have not had my success. It is a protocol which must be followed to the letter. Even if you don't do the protocol, the book is a wealth of info. I believe the doc is onto something but I'm not sure his theory encompasses all the factors of our illnesses. The doc himself has FMS so he understands what we go through. You will not feel so alone and misunderstood when you read it.

    Coming here is the best thing you could do. Our members are great, willing to share what has worked for them. You will need to do your own online research and there is a library here (it's in the strip at the top of the page; just click on it. it has a search feature). The more you know, the better you will be prepared to work with your docs and the more easily you will be able to spot clueless docs.

    Best of luck to you.

    Love, Mikie
  4. rkidd3423

    rkidd3423 New Member

    I'm so sorry for your pain! I completely understand it as I believe I have been dealing with this since I had a bad car accident when I was 18 (I'm 41 now). I have tried so many medications...none of them worked. I have been on Savella, Lyrica, Neurontin, Skelaxin, Lortab, Ultram, Cymbalta, etc. The only thing that helps me at all is Percocet. I do not take as many as I'm prescribed for fear of becoming addicted. I believe the only reason the pain killer works is it tricks my brain in to "thinking" I'm not in pain and it gives me a little energy to do what I need to get done. I'm a single mom of 2 girls and I am still trying to work 40 hours a week. Today...I'm sitting at my desk, wrapped in a blanket, crying because I know I can't miss work and miss more pay. On the flip side...my sister has fibro and the Savella helped her tremendously. It made her sick at her stomach most of the time but the pain was better. The Lyrica started to work for me but once the dose was increased, I had memory problems and my employer would not let me return to work until the dose was decreased because I was having trouble completing my sentences. Not all people have this reaction. If I were you, I would find a good pain management doctor or a rheumatologist and have them start working on a group of medications that may benefit you. You can also try some light stretching exercises. Another suggestion...that I have not tried yet...is something called the Guafinacin Protocol which seems to be helping some people. I do not have the money to seek more treatment or I would have tried it by now! Good luck to you and I look forward to hearing from you!
  5. Nanie46

    Nanie46 Moderator


    Sorry that you are feeling so sick.

    I have never taken prescription pain meds only because I did not want to mask the pain, I wanted to find the cause...I also was afraid of addiction.

    Many of us here have found that undiagnosed, chronic infections were at the root cause of our many symptoms.

    Many people receive several different diagnoses because of all those symptoms.

    I would suggest that you read this info, keeping an open mind.

    One of the infections that often goes undiagnosed is Borrelia burgdorferi (Lyme disease).




    Hope you get some answers and get better.
  6. clementyne

    clementyne New Member

    Thank you so much for replying to my post! When I looked up Dr. St. Amand & read what he had to say, I sat right down & cried!. Not only am I feeling hopeful but what I read was even more validation that I am not crazy! Symptoms that I have & never really recognized as being related to Fibro! One right after the other!

    I also read a study by Mark London which was not quite as hopeful but that's okay! There will be pro's & con's, I understand that. I plan to give it a shot because it won't kill me even if it doesn't cure me and hope is hope, right?!

    I already have Mucinex Tabs 600 mg er that I am going to try. I guess it doesn't make any difference if it's tabs or liquid? I'm going to cut it in half since what I read said to start with 300 mg's.

    And I am definitely looking for a new Dr.! I am so angry that he belittled me all these years when the symptoms were right there in front of him! He said I was old & needed to lose some weight! Anyway, thank you again!

    How long did it take for Guaifenesin to work for you? I know I might be a little ahead of myself because I don't have the book (YET!) & I haven't finished the articles. I read that I would feel worse 1st. But @ least I have somewhere to go! Something I can do that gives me a chance!


  7. clementyne

    clementyne New Member

    for taking the time to answer me! I feel so encouraged by what I have read today! And it means so much that you reached out to me today when I was feeling so hopeless.
  8. clementyne

    clementyne New Member

    I am already looking into Guaifenesin - I'm researching the drug. I am going to look into the Protocol to see what it is but I think you can just buy the drug over the counter without going through the protocol. I know there are things you need to avoid & I never heard of this as a treatment for Fibro until today so I know I have a lot to learn but I am so encouraged! I have my husband researching for me, too as I need help in keeping things straight (fibro fog).
    I am going to find a new Dr as soon as possible - other people have suggested Pain Management & I have always been reluctant because I had this image of some seedy Dr. handing out scripts for whatever you asked for! Lol!
    I also walk and try to do some stretching everyday.
    It means so much to me that you reached out to me today - thank you!
    and I hope to hear from you soon!

  9. clementyne

    clementyne New Member

    for the info! I am going to check out those links.
    I have had a test for Lyme disease because of a tick bite. In fact, my beloved dog died several years ago due to a tick born disease so it would REALLY 'tick' me off if Fibro turned out to be caused by it, too!

  10. Nanie46

    Nanie46 Moderator


    Lyme tests are VERY UNRELIABLE...in fact the ELISA test...the one that most Dr's do first, is not sensitive enough to be useful....in otherwords, it's practically worthless.

    It misses most cases of lyme disease.

    Even the western blot done at regular labs misses many cases of lyme for many reasons.

    Please read this:


    My FM turned out to be caused by chronic lyme disease (Borrelia burgdorferi) and bartonella infections...and the same thing happened to many other people who now post on lymenet.org's Medical Questions board.

    Since you have knowledge of a previous tick bite, that is even more suspicious for tick borne diseases....and there are many.

    Most people who are infected by a tick do not just have lyme.

    They might have bartonella, babesia, rocky mt spotted fever, mycoplasma, etc......

    See pages 22-27 of this paper by a lyme expert:


    Even though my Igenex western blot was offically CDC negative, it showed some lyme specific bands that showed me that I had been exposed to lyme...then I found a Lyme literate MD.

    Igenex tests for alot of bands that other labs do not, and they are important lyme specific bands.


    I had test #188 and #189, western blot IgM and IgG.

  11. Beadlady

    Beadlady Member

    I have a book called
    Fibromyalgia & Chronic Myofascial Pain
    A Survival Manual
    Second Edition
    Written by Devin Starland and Mary Ellen Copeland

    The copyright is 2001 so there may be a 3rd Editon

    This book is totally awesome! There are a lot of illustrations of trigger point areas and various pain patterns. Parts of the book are really intense but I know that these ladies really put alot of research into this book and I have learned a lot.

    I bought this book at a national book chain about 7 yrs ago and at that time it was around
    $ 20.00.

    Good luck to you.

  12. Mikie

    Mikie Moderator

    Please don't try the Guai Protocol using Mucinex. First, it's expensive and second, it's not the most effective way to go. Prohealth sells the fast-acting pure Guai here. With the fast-acting type, you can more readily see how it affects you and allows you to make changes to the dose more easily.

    Also, I would not recommend anyone try the protocol without reading his book. This is not an easy protocol and many have had to read portions of the book several times--I did. It is absolutely vital that one follows the protocol to the letter in the beginning. Otherwise, you could be just one more person whose hope has been dashed and failed, unnecessarily. The most difficult part of the protocol is getting rid of sals in one's regimen. They are hidden, under many names, in the ingredients of so many of the products we use every day.

    I don't want to throw cold water on your hopes, but I do want you to know that so many have failed on this treatment because they were not sufficiently prepared before starting. This is a long-term treatment and the Guai flares can be harsh in the beginning. You can adjust the dose to go as fast or slow as you want; however, you must take a high enough dose that the Guai can clear stored-up debris and not just what is in the system that day. Any dose high enough to do that will cause Guai flares. In other words, it gets worse before it gets better. Still, the flares show that the Guai is doing its job. The debris in our tender points is crystaline and when it is drawn out, it feels like tiny fish hooks in the body.

    One has to be knowledgable, patient and totally commited to the protocol in order for it to work. Even then, it doesn't work for everyone. But, if people follow the rules, it works for most. You may hear of failures where people swore they followed the rules. This may be true for some but it is usually caused by hidden sals in very sensitive people. I visited a group up in Zepherhills, FL where there was help in finding hidden sals and a medical professional to help examine the participants. Everyone in the group was making progress.

    It tool several years for me to feel about 80 percent reversed. That allowed me to concentrate on the CFIDS/ME. Now that I have other conditions, I'm not up to snuff but, at least, I don't have to worry about the FMS.

    Good luck to you. I really hope this works for you and that is why I've been so cautionary in this post. I want you to have all the info you need to succeed.

    Love, Mikie
  13. clementyne

    clementyne New Member

    I SO appreciate your warnings & talking me down (so to speak!), it's just that this is the 1st time I have had any hope - no matter how small. I have read Dr. St. Amand's webpage as well as a study by Mark London, while not as encouraging as St. Amand, still gives me hope. And I already ordered Dr. St. Amand's book, I think I'll have it in a day or two.

    I must say, when I started to read about the 'Sals' ... I sort of came crashing down to earth and I thought "I can't do it, it's too hard." Okay ... maybe it is hard but jeez! I have a chance to feel better & that is worth the hard work, then, isn't it?

    What I'm doing right now while waiting for the book, is making a list of the products I am going to have to let go of. And just because it's not listed doesn't mean it's not there! I have not looked on this site, yet but is there a list compiled somewhere of products that are known to contain the offensive ingredients? I started a notebook to help me keep track because I am so very forgetful.

    I appreciate all your warnings, Mikie! I am going to wait for the book before I start the protocol. At first I was going to start taking the Mucinex because I have it in my cabinet already but I knew I would go a different route when the box was empty. I see that I need to give myself every chance for success instead of running off half cocked without knowing what I'm up against.

    And I must admit that I am a little afraid of the Guai flares. I already knew that it would get worse before it got better and since I hurt so much anyway, I guess more pain is only more
    pain. Were you bedridden during the process? That is something I have tried desperately to avoid and for the most part I have been successful. I'm sure it's different for everyone.

    I will keep you posted on my progress. As I hope you will let me know how you are doing.

    One more thing I wanted to ask ... was your Dr. supportive of the Guai Protocol? I have an appt. with a new Dr. in a couple of weeks & I am wondering if I should mention this to her? I haven't even met her yet, so I'm not sure what to do.

    Well, again ... Thank you!

    Keep in touch!
  14. Mikie

    Mikie Moderator

    I'm soooo glad I didn't dash all hope. That was not my intention as I am very positive toward the protocol. It is the only treatment I'm aware of which offers the opportunity to reverse the FMS symptoms. I had a great doc who knew nothing about FMS but was willing to learn. I actually gave him the book. He was more excited than I when I started. I had all the trepidations too, wondering whether it would work, what dose would work well, had I eliminated all the sals and what the Guai flares would feel like. I recommend going very slowly in the beginning at the dose Dr. St. A recommends. If after a bit, nothing happens, slowly increase the dose. Sometimes, the changes are subtle, just a fleeting moment of feeling a bit better. Sometimes, the Guai will cause some pain in the tender points.

    Guai pain is differen than the usual FMS pain. FMS causes more of an aching type of pain, from only a little to almost unendurable. When mine was unendurable, I took my Morphine until I no longer needed it. The Guai can cause more of a stinging type of pain and it can last a few minutes, a few hours or a day. It usually doesn't go on longer than that unless the dose is too high. I found it much more tolerable than normal FMS pain. Soaking in a hot Epsom Salt bath can ease the pain. Drinking water with lemon also helps. I did increase my dose and each time, I had to endure stronger flares but I was in a hurry to get the debris out.

    I was sick with CFIDS/ME for ten years before an auto accident triggered the FMS. I was working but after the initial mycoplasma infection, which triggered the CFIDS/ME, I was never the same. The infection left me crippled for months but I recovered--sort of. It was some months after the accident, ten years after the infection, that I started having so much pain. Eventually, the FMS combined with the CFIDS/ME and caused such pain, exhaustion and brain fog that I became bedridden most of the time.

    That is when I came here and found, not only kindred souls, but lots of treatment ideas. I learned of the Guai here and got the book. My doc was fabulous. He eventually dropped my insurance co. but by then, I had found a specialist. He worked with me as we were both researching all kinds of things at the same time. It took a bunch of different treatments to get me to where I could work part time and I did, until I got Sjogren's.

    I wish our resident Guai expert, Jude, were still here. She was an amazing resource of info about the treatment. I no longer own the book; I kept giving mine to people with FMS. I can tolerate some sals and now that I'm reversed, I really don't worry too much about the sals. I hate to tell people that because not everyone can do this. Even though I consider myself reversed, if I get really sick or injured, my old tender points can still ache. They are like old injury sites which have healed but are still vulnerable.

    I hope my fatigue never again reaches the level it did when I had to stop working originally, more than 11 years ago. When my Sjogren's caused such horrible fatigue, I quit my part-time job instead of trying to push through the fatigue. There are days when I have to lie down so I don't fall down but it is temporary and I'm managing it. If I can try the peptide injections, I may have hope of recovery. In the meantime, I'm juggling everything. This morning, I went to the pool and did the old people exercises and then played a rousing game of pool volleyball. I'll have to see how the exertion and the sun affects me.

    Had I not done the Guai, I don't believe I could possibly have healed at all. It is not uncommon for us with these illnesses to pick up additional conditions. Again, I don't want to sound so doom and gloom but if we can eliminate the symptoms of the FMS, we are waaaay ahead of the game. My prayers go up for your success. If I can answer any questions, please ask. I may no longer have the answers because the only involvement I have is to take my maintenance dose each day. Dr. St. A's website is great and when I used to go there, his nurse was wonderful at answering e-mailed questions. Also, there is a lot of info in our library here.

    Love, Mikie
    [This Message was Edited on 09/16/2011]
  15. Chelz

    Chelz New Member

    Another post that sounds so much like me. I danced too, had pains as a child and was told it was growing pains, pain went away in my teens and came back in my early 20's.

    I am also 46, but I have never been fortunate to find a husband, that is the only thing that differs from us and I did not have encephalitis like you did, but excrutiating migrain headaches that send me to the ER for pain relief.

    I was put on Paxil and Elavil which Flexaral and Elavil are almost the same drug. I gained a massive amount of weight from these drugs, so they had to be stopped. I was also given Ultram, which is a pain med, but that gave me headaches as well.

    I was given Zanaflex (muscle relaxer) but even at a very low dose, I had nightmares and interrupted sleep, which I did not need.

    So, long story short. I have been to many doctors, but, they love to give out drugs and most if not all of them just give me bad side effects. I was on Zoloft and Wellbutrin too, and they were bad for me.

    I take so many supplements now that at least I can work full time, but it is still very hard. For pain, the only thing I can take is Advil or Aleve, they seem to work for me without horrible side effects, it is the prescription drugs to due me in. I also take CoQ10 200 milligrams for my fatigue and also Magnesium Glycinate about 500 milligrams.

    I take Vitamin D, probiotics to help with my immune system and lots of creams and gels that I apply on my shoulders, legs, neck, etc.

    It is so nice you found a husband. I am 46 and can't imagine finding anyone. I don't have many interests because I am too busy having to work, manage my FM, my elderly mother, manage my weight, that I do not have time or energy for many pleasures that life should bring me. It is hard for me to "let loose" and have fun because I don't know what type of shape I will be in if I overdue it. Working a full day and going home to do bills, laundry, or just run errands due me in. I don't think I would be much fun, LOL. I hope I helped you a little bit, good luck to you. Hugs, Chelz.
  16. clementyne

    clementyne New Member

    I am amazed, since I posted my plea, how many of us have such similar histories! It's as if we are a bunch of separated at birth sisters!
    My pain is still over the top but I have found knowing that there are other women who know how I feel, sympathize without pity and are ready with a shoulder to lean on, gives me strength I didn't know I had! I hope you have found that as well!

    What is CoQ10? I really struggle with fatigue, it would be wonderful if I could find something to help with that! I usually feel like going to bed by 6pm - if I could only sleep! LOL!

    Have you heard of the Guaifenesin Protocol? I just found out about this yesterday and ordered the book by Dr. St. Amand. I am pretty excited to try this out. I've read pros and cons but truthfully, I would eat my own ear if there was a chance it could make me feel better!

    You never know what's just around the corner, Chelz! My husband & I were married one day shy of the 5th month anniversary of our 1st date! I never thought I would get married. When I felt well, I dated a lot but was mostly just having a good time & once I was sick, I didn't think anyone would want me. I never wanted to explain why I walked funny or that it hurt to be touched and who would want to go out with someone who had trouble keeping her eyes open through dinner?

    My husband never batted an eye! He is VERY HIGH ENERGY but he doesn't give me a hard time. I wasn't diagnosed until after we were married but we knew, of course, that something wasn't right. I guess what I'm trying to say is if it's the right man, it will work out.

    On the other hand, there is a lot to be said for being single! My house used to always be clean because I didn't mess it up! I tease my husband that he is like Pig Pen from the Peanuts cartoons - you know, the kid with the little dirt cloud hanging over is head? That's my husband!

    I understand about not knowing what kind of shape you'll be in if you overdue it! But I hope you are able to have some fun! I usually feel better in the morning (after my pills kick in), so I try to do something fun then.

    I was wondering about your mother ... is she sick? I have been reading that FM may be genetic and now I am wondering if my mom has it. In fact, I am pretty sure she does but she has Alzheimer's (she keeps calling me up & saying "This is your favorite daughter!" - I always wanted kids, but a 75 yr old woman? I don't think so!)now, so that point is probably moot!

    Thank you so much for writing to me! I hope to hear from you soon!
  17. clementyne

    clementyne New Member

    Hello! Thank you so much for responding to my post! I am finding out that we all have similar histories and it makes me so mad that I spent so many years thinking the worst of myself!

    I am meeting with a new Dr. soon and if she (I have decided to try women Dr.'s for a while to see if I receive better care from them) doesn't pan out, I'll try another one! In the past I have stuck with the Doctor I was assigned to because I didn't want to make waves & I let him treat me in a manner I feel sure he would not have treated a man who came to him for help!

    I realize now that I have to advocate for myself! Each woman I have talked to on here has given me a little more courage to seek better care for myself. For the first time since I got sick, I feel like I have hope!

    Good Luck!
  18. Janalynn

    Janalynn New Member

    Wow, the first couple of paragraphs I could have written myself. I too had the horrible "growing pains", lots of memories as a little girl of crying while my Mom rubbed my legs and knees. I danced the night away until I was 21 and suddenly had so much knee pain that I literally could not walk up the stairs. I crawled. Had x-rays etc. done and they could find nothing. About the same time I went through other testing and found I had "spastic colon" - IBS.

    I've had weird bouts of symptoms throughout the years, nerve conductor tests etc., and my gynecologist was really my main Dr. He actually noticed during an appt that I was always constantly rubbing my hips and knees while I was talking to him. He, then started trying to help me. He prescribed Vicodin and I couldn't believe how much it helped me. Now as everyone knows, it doesn't take away all of the pain, but it gives you a chance for some quality of life.

    One amazing side effect I had was that my chronic diarrhea was suddenly gone. While most people get constipated on narcotics, it made me normal.

    I was finally diagnosed after my PCP suspected FM and referred me to a rheumatologist. He said (and 2 other Drs) that I will most likely need something for pain for the rest of my life. The thought of that bothers me, however the alternative bothers me more.

    I think it is incredibly irresponsible of your Dr. to suddenly not refill your prescription. Does he think you're supposed to stop cold turkey? and then what? Did this not warrant a conversation? ....and No, you're not taking too much. Pain meds are all relative. The longer you've been on them, the more you need. I take more because I've been on them for a long time, but for me it's like someone else taking one. Dependency and addiction are two very different things.

    Also, only about 1-2% of chronic pain patients become "addicted" to pain medication. It's the people who take it after their pain is gone that become addicted. For us, we're trying to live with some sort of normalcy.

    If I were you, first I'd ask the Dr. why he suddenly stopped your Rx. Then I'd ask him if he would refill one more time so that you can have time to figure out what you're going to do - or tell you him want to wean off (anything you want to tell him).

    I would look for a different Dr. who is willing to go down this road with you. Look for a rheumatologist who treats Fibro. That's who I see now.
    You can always go to a pain management clinic - call and screen them. Ask if they treat w/narcotics or what their treatment methods are.

    Any Dr.'s you're interested in, set up a consult so you can talk to them. Don't transfer records or anything until you make a decision.

    I have danced since my diagnosis - albeit may be in my family room, but I still got the moves!

    Good Luck - keep us posted!

  19. clementyne

    clementyne New Member

    Thanks for answering my post!

    I read somewhere that a lot of us have had those terrible 'growing pains'. I remember being tiny, in bed @ night and raising my legs in the air and flexing them over and over, trying to get relief. Of course, my parents would come in and get on me for messing about but I didn't have the words to tell them I hurt.

    I'm really angry with my Dr. - I don't think he will be my Dr. much longer! Thanks for the advice, you brought up some things I would not have thought of.

    My Dr. actually told me that it would be unlikely for me to become addicted to my pain meds. I questioned him about that when he first prescribed them for me.

    I am trying to get into a pain clinic here that is very good - the Dr. there treats holistically. But it is hard to get in. I have a chance because of a connection I have, so I hope it happens!

    I was LOL when I read about you dancing in your living room! I must admit, I have been known to 'bust-a-move' in the privacy of my own L.R. May not be as graceful as I once was, but it sure does the spirit good!

  20. Mikie

    Mikie Moderator

    Half of the battle is learning that we deserve better treatment than most of us have gotten. It is OK to keep looking for a doc who understands. We just have to be careful switching so it doesn't appear we are doctor shopping for pain meds. The DEA is targeting Rx abuse because the war on illegal drugs was lost years ago. The American Pain Management Assn. claims that only 1/3 of one percent of people with chronic pain become psychologically addicted to pain meds. It is federal law that patients are entitled to relief from pain. Pain specialists helped me because they understand this. I was given Morphine and Vicodin until the Guai kicked in.

    When we get sick, we question ourselves and wonder whether we are the only ones who are in such pain and so sick. One of the best things our wonderful members do is provide nonjudgemental support and their own stories to let you know you are not alone and are among friends--kindred souls. We are no less than we were before we became ill; we just can't do as much.

    Best of luck to you and all others who are starting to research options. The idea is to get as much healing as possible. If that means a complete remission, wonderful. If it means that one can return to a more normal life, still wonderful. If, like me, it's a continuing struggle, it's still better than when I was bedridden and on the Morphine. Everything which has helped me is something I first learned of here from our wonderful caring and sharing members.

    Love, Mikie

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