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    Old 10-12-2004, 08:53 AM   #1
    PajamaMomma
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    Unhappy Does this sound like Fibro?

    Hi. I'm just looking to get a little insight into my problems as I prepare for my visit to a new doctor. My old doc never seemed to try linking any of my problems together and only treated me for them seperatly... even though I expressed to him that I thought it was all a part of something bigger. He just stopped working w/ my HMO, so now I need to prepare to see the new doc and hope he can help me out. Here is a list of my problems:

    - Always tired, even when I get plenty of sleep. Trouble falling asleep almost every night. Night sweats.
    - Constant headaches and migraines. (I've been treated w/ Imitrex, Propanolal, and Vicodin, to no avail.)
    - constant throbbing muscle and joint pain. Mostly in lower back, neck and shoulders, hand and wrist, and calves. ( treated w/ Vicodin - but didn't help much.)
    - Anxiety ( treated w/ Xanax. Did help out a little)
    - Tingling, "falling asleep" of hands and feet frequently.
    - IBS ( treated w/ Zelnorm, Bentyl and Levbid. All of which helped at first but not after about a month)
    - Dizzy spells.
    - Legs "going out" on me upon standing up, causing me to fall. Happens 1-2 times a week.

    Does this sound like Fibromyalgia? I've had lots of tests and bloodwork done which has ruled out hormone and thyroid problems. I'm 26 and have 2 young kids to chase after. Some days it almost kills me just to get out of bed and do what has to be done. I've been dealing w/ all of this for almost 2 years now and really need some answers in hope of getting some relief. I'm tired of being treated w/ pain meds that don't help much and just leave me feeling lightheaded and even more sleepy. If anyone can give me a little insight into this it would be a great help! Thanks for reading!

     
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    Old 10-12-2004, 10:21 AM   #2
    twanger
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    Re: Does this sound like Fibro?

    Yes, these are all symptoms of fibro. However, they also can be symptoms of a thyroid disorder or a hormonal imbalance. If your blood levels have been tested it could be fibro or sometimes the levels need to be tested again.

    On this board, there is a comprehensive list of symptoms. It is way back there but print it out and see how you match up.

     
    Old 10-12-2004, 10:41 AM   #3
    PajamaMomma
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    Re: Does this sound like Fibro?

    Thanks for the reply. My blood levels have been checked 4 times over the last year and a half, each time negative for Thyroid or Hormone imbalances. Of course I'm pretty sure the new doc will most likey check them again just to be sure. I will look through and find the list of symptoms you mentioned and see how I compare. Thanks again for your reply!

     
    Old 10-13-2004, 06:21 AM   #4
    PajamaMomma
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    Re: Does this sound like Fibro?

    Well, I checked that list of symptoms. I have so many of them... and I never even gave a second thought to much of them before. I really had no clue that so many of the symptoms could all be connected. I have suffered with alot of them for years and years, almost as far back as I can remember. I'm glad I checked out this board! It has really given me a better sense of how to proceed and what to ask / tell my new doctor when I see him. If Fibro is indeed what my problem is, I'm happy that I have found a place to be able to talk to others who now how it is. A few questions: Do the problems and pains continue to worsen through the years? How do you explain to others what Fibro is? Are there any good ways to manage the pain w/o strong pain meds? I have an 8 yr old son w/ Cerebral Palsy who is wheelchair bound. I have to pick him up and carry him around, which is already doing quite a number on my back and arms. I can't imagine not being able to this for him, but I know that sooner or later I will have to stop and seek help. Thats why I ask about pain managment... If I can't control the pain I can't fully care for my son the way I'd like to, so thats a huge thing for me. Any advice anyone could offer would be appreciated. Thanks!

     
    Old 10-13-2004, 07:24 AM   #5
    twanger
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    Re: Does this sound like Fibro?

    In some, the pain can worsen over the years from what I have read on the board. I am 57 years old and I believe that I had symptoms at the age of 40, maybe before. I say 40 because that was when I got the intuition to look into fibro. No one could tell me what was wrong with me and that it was all in my head. Also, at that time, fibro was thought of as just as "maybe" syndrome.

    My pains cycle. Over the past 17 years, I would say that I suffer a little more. However, I also just went through menopause so that may add to my misery. Over those 17 years, I was able to remain quite active if I did certain things.

    I never resorted to taking drugs. However some say that anti depressants help. I didn't want to deal with the side effects. Never took pain pills on a regular basis. If I did, I found that they were not much help and a heating pad usually did the trick.

    Sleep and good sleep is the most important thing. When I get enough sleep and rest I am fine. If I get into a period of stress and little sleep, I am a mess.

    Limiting carbs also helped. For some reason, when I limited them (as in Atkins) my muscle pain was much less. However, I went off the diet because all the fat was making my indigestion worse. Now, I just have to watch my bread and sugar intake.

    Exercising. Do it even though you are tired and achy. It helps 100 percent. Try to walk at least a mile or more a day and stretch. At first it is difficult but take your time and work up to whatever you want to achieve. I was up to 4 miles but then my knees decided it was their turn to act up. I am getting there again.

    There are great books on the subject. I have one that I use almost as a bible. It has all the trigger points and how to manage your fibro. I don't have the name with me now but it is by Daryly S. ( the spelling is not correct, but go on the web and you will find it).

    Good luck. You will be able to do what you want to do if you take some steps to balance yourself and not let it get you down.

     
    Old 10-13-2004, 07:37 AM   #6
    PajamaMomma
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    Re: Does this sound like Fibro?

    Thank you so much for all the info! It's good to know that there are some ways to manage the pain w/o drugs! The Vicodin my last doc rx'd for me never helped much and always left me feeling spaced out, with my kids to care for that was not good at all. I will give the walking and exercise a try for sure. Heck, I could stand to loose a couple of pounds anyway! I want to do whatever I can to avoid meds, even antidepressants. Thanks again for all the info. I will look up the book you talked about, too!

     
    Old 10-13-2004, 08:50 AM   #7
    tutti-fruti
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    Re: Does this sound like Fibro?

    could you kindly give us the full name of the book and the correct spelling of the author please ? thanks a lot.

     
    Old 10-13-2004, 11:36 AM   #8
    Iwantacure
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    Re: Does this sound like Fibro?

    Also, some people say that when amalgan in your teeth may contribute to it.
    They say it's a poison into our system which triggers our illness. And yes, it is an illness. I'm sick and tired to hear that it's a serious of symptoms. nonsense. If I'm always with pain and tired and walk with pain it is an illness just like ostearthrisis and other illnesses period.

     
    Old 10-13-2004, 02:06 PM   #9
    twanger
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    Re: Does this sound like Fibro?

    The name of the book is, "Fibromyalgia and Chronic Myofascial Pain: A Survival Manual." The Author is, Devin Starlanyl and Mary Ellen Copeland. I apologize. I was way, way, off with the name. It must be fibro fog or something. I love the book and have referred to it numerous times- thousands of times. Hope that it can help all of you.

     
    Old 10-13-2004, 08:41 PM   #10
    italys_finest18
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    Re: Does this sound like Fibro?

    Pajama,

    You wrote in your first post a list of symtoms and asked if it could be fybro. And people responded as yes it sounds like fybro.

    I am concerned about the people that post in Chronic fatigue syndrom and Fybro boards. Not so much if a person has Chronic fatigue syndrom or fybro and is comfortable with it and is slowly becoming better and able to live life agen. But people who are in pain and they can't find a cause and settle for Chronic fatigue and Fybro. Some people can settle for it and it works out good, they have their condition to iddentify the level of pain and fatigue they are in and they are working on it. Other people can be Misdiagnosed as CFS or/and Fybro.

    To me its a hard and sad thing to walk into the doctors after suffering, pain and ect. Everything your going through and a doctor can right it off as something so simple as depression. Which could or maybe not be your case but sometimes people treat us like that.

    I write about Lyme disease alote in the Fybro boards and CFS boards. "WHY" Not because I am trying to make ALL people with Fybro or CFS think they have Lyme disease at all. Just because MOST patients with Lyme disease usually get diagnosed with CFS and Fybro first. Infact I'd say about 10 out of 14 people at my Lyme disease support group was misdiagnosed with CFS, Fybro, depression..ect including myself. All the test you run for fybro and all the questions your asked for a diagnoses all come up the same for Lyme disease there is not 1 single difference between Lyme disease symptoms or CFS, and fybro.

    Now the thing is why so many people are tested for lyme disease and get negatives. Soo many people tell me "I have already been tested for it a million times." Well I have a good answer for it. Hardly anybody has a positive result with the lyme test they do in the doctors office or hospitals, the test is called the Elisa. And it is not accurate at its almost the most unaccurate Lyme disease test out there for lyme. You have to find a GOOD educated doctor that will not rely only on test results and knows what kinds of test to do and take. Another important thing is a person oh even has a lyme disease bulls eye rash and is diagnosed with Lyme disease after a while may never have a positive test result again. Which you do not have to have the rash but if you do you automatically do not need to be tested. For some reason patients who have long term lyme or just in the body for a while hardly get the posistives that they need. The body hides the bacteria. Also one day you can test negative and the next day the bacteria can come out and you can be possitive. There is no reliable test at this time that will give a person accurate answers on Lyme disease.

    Resulting in alot of people sick, in pain, suffering and told its something like depression, thyroid ect.

    *****Test you can request*****

    First you have to individually test for all the coiffections of lyme Ehrlichious, babesiosis, Bartonella..ect

    the western blot test, it shows infection when the elisa does not.

    PCR analysis which looks for the DNA of the lyme bacteria in the blood, urine, tissues
    Mutiple test are usually done before a sample is contained that holds the bacteria. Testing has become extreamly reliable for positive testing. Even most doctors are aware of this test.

    ****ARE ALL TESTING LABS THE SAME****
    No they are not. Some labs have made special efforts to focus on tick-borne disease testing and they use procedures that make their test more reliable and sensitive to LD.



    Well i hope the infomation can help!!!
    A person helped me get out of my CFS and FYbro misdiagnoses and I am on the road to resovery and I just want to help more of those patients who are in the same place as I was. Especially when there are children invovled.


    TAKE CARE.................................P.S . I am a very bad speller excuss the spelling

     
    Old 10-13-2004, 09:03 PM   #11
    Hailey_19
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    Re: Does this sound like Fibro?

    Maybe I'm totally off here....but wouldnt most people remember, if they got bitten by a tick? I know I would. My brother had a tick on his head once, and we had to burn it off, just doesnt seem like something one would forget, but then again I dont know too much about tick bites.

     
    Old 10-14-2004, 06:25 AM   #12
    PajamaMomma
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    Re: Does this sound like Fibro?

    Italys -

    Thank you for the information and the concern. I am sure that I do not have Lyme. I also know that I have not been bitten by a tick since I was 3 years old. I am not an outdoorsy type at all, and never have been. I really can't think of any situation where I could have evn been bit by a tick. At this point I do not know if I have Fibro, it is just my speculation. I have suffered from many Fibro symptoms for 2 years. I am just trying to get an idea of what is causing my pain and many problems. Depression is not a big thing for me, and I have never needed treatment for it... in my opinion at least. I do at times have some run-ins w/ depression. But, I am very good at staying upbeat and not letting things get me down. I do, however have anxiety, which I have had treatment for. When I see the doc I'm not going to go in saying "I think it's Fibro" because I really do not know for sure. I just know that other things have been clearly ruled out. I'm going to go and present my problems to the doctor and let him do his job. If I need to down the line after other things are ruled out I may ask about Fibro if the doc has not mentioned it. I'm just so tired of being sick and in pain all of the time. I'm hoping that I will finally get some insight into whats causing all of this and finally get some help and relief... whether it's Fibro or something else. I just want to feel better. Thank you again for the concern and info.

     
    Old 10-14-2004, 11:59 AM   #13
    italys_finest18
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    Re: Does this sound like Fibro?

    pajama,

    your welcome, I just wanted to let you know some sugestions and options.
    I understand Your probably sick and tierd of being sick and tierd. I used to feel that way and some days do.

    I just want to let you know that there are more ways to get Lyme than just from a tick they have found the bacteria in fleas, misquestos, blood tranfusions, and in some cases it has been passed sexually from the sexual fluids this one is probablly in rare cases.

    The last time I was bite by a tick was when I was 7. And thats another reasone why it took a while to figure out my disease. I started to get tierd in high school and then after high school When I had my daughter that was the last straw for my body and the Lyme disease that was dormat and hiding in my tissues for years since I was a little girl took over my body.

    No matter what you have the important thing is recovering. When I saw that you have kids I got sad in a way because I hated haveing a little girl wonder why "Mommy is sleeping so much." Hopefully you have a good support system!! That probablly makes a BIG difference. Thats also great that you manage to stay up beat!!! I love people like that. It makes me feel less sick just to be around up beat people. I think thats a great thing and your kids are luck to have a mom with a good attitude.

    Good luck for you.
    And I hope that you find your sickness so you can heal.

     
    Old 10-14-2004, 12:12 PM   #14
    italys_finest18
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    Re: Does this sound like Fibro?

    Hailey,
    Hello,
    Alot of people do remember getting bit by a tick when the tick is inbeaded in your scalp and you have to remove it. but some people just get bit, real quik and you never even know because it didn't stay and inbead it's self. Just took a quick bit and never was spotted. And there are some ticks that are soooo small they can be mistaken for a tiny baby spider.

    As I stated in a nother post there has been other things that the bacteria has been found in fleas, misquitos, blood trasfusions...ect.

    I have a good friend who has been sick for about 4 years now with lupus. Her kidneys are failing and there was times where she was temporarly paralized with a fever very high. She never remembers being bitten by a tick. after being sick with lupus for 4 years she got 8 blood trasfusions and this year she went to a doctor who did extensive blood work and she came up positive for all the test he ran on her.

    Thats probably why I am passionet about Lyme disease awareness. because I have seen what a weird and mysterious disease it can be.

    TAKE CARE and excuss the spelling I am a bad speller!!

     
    Old 10-14-2004, 12:15 PM   #15
    PajamaMomma
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    Re: Does this sound like Fibro?

    Italys -

    Thanks. I didn't have any clue that Lyme could be contracted other ways. Guess ya learn something new everyday! Hopefully my doc will be able to sort through the mess (which is me!) and find the cause. And, whew...I only wish I could sleep alot! LOL-sleep? Whats that? I do have a good support system. My hubby is wonderful and helps out anyway that he can, my parents are also a big help. I'm very thankful for all of them. I'm in the process right now of getting a home health aid who will come during the day to help me out w/ my disabled son so I can get a break. I need it! Being sick and in pain is no fun, but it helps having a place like this to talk w/ others who know the feeling. Thanks again and take care!

    Last edited by PajamaMomma; 10-14-2004 at 12:17 PM.

     
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