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    Old 10-12-2003, 05:06 PM   #1
    NaeNae
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    Unhappy I need help...feel so alone

    Hello Everyone,

    I am a 30 year old stay at home mother of 2 sons. I have "unknown" pain throughout my body and I don't seem to be getting any help. I'm sorry, this will be long, but I think I've narrowed it down to Fibromyalgia. I've heard of this condition here and there the past year but never looked into it. Here's my story:

    Just a year ago, I was, by the most part, fine. I had some extra weight, not alot, mabye 20-30lbs. Typical post-pregnancy, mom of 2 young sons who only finds time to excersice occasionally. My youngest son was already seeing an orthopedic surgeon for clubfoot. So one day, last early September, I had him in the office. I had him up on the table being examined and when he was done his doctor said we could sit back down now. Unbeknownst to me, my then-4 year old was rearranging chairs in the room and where my chair was, I assumed it was still there and BAM! I feel on the linoleum floor with baby in arms. Of all places for it to happen, I was in the right place! The office was excellent, had me lay down, took the kids, called my husband, gave me medication (probably scared I'd sue, but it was not their fault) and the doctor told me most likely I cracked my tailbone. So, it took a few months to heal, he gave me about a months supply of Vicoden and while in pain here and there for a month, I felt somewhat better by the month's end. Everything was ok for the next months, but the end of December I noticed my neck was hurting. I thought mabye I slept wrong, but it didn't go away in a few days. So December 31 I went to my PCP and saw a P.A. and he said it was muscle spasms and sent me home with Zanaflex. It knocked me out. So a week later I went back and he gave me Hydrocodone which helped tremendously. Over the course of the month my middle back was hurting alot. I noticed my activity level cut in half, with my wonderful husband having to do most of the stuff around the house. I was referred to a Pain Management Doctor. The first lady I saw just told me back ********es with being a mom and mabye if I'd excersise, I'd feel better. Decided not to go back there. Saw another guy and he was a jerk. He gave me some relief, but he had 2 personalities and going into his office was stressful enough, you never knew what to expect. He had me on Oxy, 2 pills 3 x a day and it helped some. He did some procedure of injections on my back (can't remember right now) in outpatient and it helped for about 6 weeks. We then decided to go off Oxy and go back to Norco. By now it's June (before injections) and I had so much pain on my whole upper body. I had numbness, tingling, my arms hurt. I could barely walk down the stairs when I woke up, I'd have to lay there until my Norco kicked in. I felt like an elderly person.

    About 3 months ago, I brought my son into the Ortho Surgeons office for a check up and he asked how my back has been. I told him about the "mean" doctor and all my pain, etc. He said he'd like it if he could treat me from now on. So he did another MRI (my GP did one, first said they found mass, then couldn't find it in the second one so said I was fine). He said my MRI was okay for the most part. I had a butterfly vertebrae I was born with, the crack on my tailbone was still healing and some "abnormal" discs in my neck. He set me up for Physical Therapy which I'm going for now.

    The thing is he's very "old school", he's in his 70's and I know he's going to be the type to not believe in Fibro. I'm going to bring all the paperwork I can when I go in on the 22nd, but I can see it not going very far.

    When I first found out the symptoms of Fibro, I found it off a website and printed it out and highlighted everything I had. My mouth almost dropped when I read it, it seemed like the final piece of the puzzle fell into place. It as weird because when I was 19 in 1992 I got sick and had to stay in the hospital for a few days. They just said it was dehydration. From that day on, I've never felt good. I've been to the doctor for a million things since thin and have had diagnosises for little things here and there. It was getting embaressing and I know people are thinking "Hypochondriac!" in their minds. But I couldn't help it, I never felt right. When I read all the symptoms of Fibro, that's when I realized I haven't had all these things all these years, it's been one thing!

    This is what I had from the list:

    Pain: I explained most of it above, but every pain you can imagine. Twisting, aching, stabbing, burning. My lower back has been the worst lately, almost like a pressure. But worst of all has been the stiffness. I can tell when my medication is wearing off, I start to stiffen up again. It's back, upper arms, hands, ankles, you name it.

    Fatigue. I've been on Provigil and am now being switched to Ritalin because my insurance won't cover Provigil since I don't have Narcolepsy. I was diagnosed with Sleep Apnea a year ago through the sleep test. The Provigil has been a saving grace when it comes to sleepiness. I am overly tired and have been for years.

    Sleep Disorders: Besides Sleep Apnea, I am going to go back, I also believe I have Restless Leg Syndrome. That's a whole nother story, but it's horrible. Waking up in the middle of the night and you can't stop moving.

    Irritable Bowel Syndrome: I don't think I have IBS, but I've had a weak stomach for years. I have to cut out dairy and have bouts of diarreah that come and go. I've had Upper GI's, Colonoscopy's, you name it.

    Chronic Headaches: First we thought it was wisdom teeth, then allergies, then tension. A headache is always there.

    TMJ: This is the only thing I haven't had a problem with. However, I do grind my teeth in my sleep.

    Sensitivity to noise, bright lights (I can barely go outside without my sunglasses), medications (if there's a side effect, I'll get it) and foods (see IBS above).

    Bad menstrual periods (which they said is due to my Endometriosis), Memory Impairment (I used to be so sharp, now I have a hard time remembering things), skin sensitivities (in the past year, I've been getting so many rashes here and there), excessive weight gain (in this year alone an extra 30lbs), frequent changes in eye prescription (I didn't have glasses until 18 and in 12 years went to a prescription of -4.0).

    Depression: I've been on Antidepressants for about 5 years. As we speak I'm switching from Effexor XR to Prozac (the change is hell right now). Anxiety has crept up this year one. Never had a problem until this past year. It comes and goes to I take Xanax as needed.

    I'm too young to feel this way. I hate it. This morning I layed on the recliner feeling like I was dying from the pain. My house is a disaster. I have no energy or strength to clean. I rely so much on my Norco to help me feel better and I HATE relying on medication like this. I want to be normal!

    What is the outcome for Fibro patients? Can I expect to feel this way for the rest of my life? How can I find a doctor in my area that believes in Fibro? Most importantly, does this seem like Fibromyalgia?

    Thank you for listening if you've made it this far!

    Renee

     
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    Old 10-12-2003, 09:03 PM   #2
    AliceBlueBelle
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    Renee


    First of all I would encourage you to keep up with your physical therapy. It took me a couple of years of on again, off again PT before I was able to conquer most of the pain in my neck, shoulder and back. I could barely lift my arm with out terrible pain. The pain and tingling was so bad I was sure I was having a heart attack at first, but it lasted so many months and the tests were clear. Don't over do with the PT. For the majority of things it should not cause more pain doing PT. My first round of 6 wks of PT consisted mostly of trying to get a handle on the pain and muscle spasms. I think the most difficult thing they had me doing was working up to 10 wall push ups once or twice a day. Even though I had a compressed nerve, the neuro surgeon would not operate. I was really upset with him. In the end, he was right and from all my research, the location of the nerve compression had a very low surgical success rate anyway and often made it worse. If you aren't already, try to limit lifting the little ones. I discovered they could climb up on my lap easier than lifting them. My final conclusion is that that I'm not glued together very well (the muscles, tendons, etc are flabby) and there is not much to hold my skeleton in the proper place. One of the best exercises I got from my PT was to push my shoulders back as if I was trying to bring my shoulder blades together. I was amazed that I simply didn't know how to stand up straight for so many years.

    You may need to take some information to your ortho to help him understand fibro. Make at least one page rather short and concise. He's more likely to read it. Even if he doesn't, the beginning way to treat fibro is controlling the pain and getting sufficient quality sleep.

    The following I would recommend because of the mysterious "illness" you had when you were 19.

    I think it would be a good idea if the docs would test you for autoimmune diseases and also for hepatitis C. I just found out I have hepatitis C which I got from a blood transfusion in 1967. A test for blood dontations was not available until 1992. I had bouts with mysterious fevers over the years. I had dismissed many years ago the possibility I might have Hepatitis C because I didn't have "symptoms of liver disease". Most of the time there are no obvious symptoms or abnormal blood work to give any clues. Check out this link to see if you have any of the risk factors: [url="http://www.cdc.gov/ncidod/diseases/hepatitis/c"]http://www.cdc.gov/ncidod/diseases/hepatitis/c[/url] There are a few other sources for infection besides those listed, but the possibility is very small. These blood tests must be specifically requested by the doctor as they are not part of any panel. All of my regular blood tests have been normal for all these many years, so that is obviously not an indication either. If you have any risk factors, be tested. There are many simple things I could have done or not done over the years that could have reduced the amount of damage to my liver I currently have. Fibro, hepatitis C and autoimmune diseases, and a host of other things usually have similar symptoms.

    I know how hard it is with two little ones at home and even though mine are grown, my house is still a mess. I'm not going to use what precious energy I do have to have great looking house.

    Hugs
    Alice

     
    Old 10-13-2003, 11:11 AM   #3
    painsucks
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    Dear Nae Nae,

    I know you feel alone, but you're not! We're here for you and to share with you. It sounds like you've been through a lot so far. I was a very healthy, physically fit 35 year old mom of 2 when I was first diagnosed. The best way I could describe my symptoms back then was to say that I felt like I'd been hit by a Mack truck. It seemed as though every joint and muscle in my body hurt, and actually, they did. I was exhausted all the time and felt like I was carrying lead weights on my arms and legs. And it was very depressing. You need to try and stay as active as possible, I've had some relief when I was going to PT, seems like I felt really good during the PT sessions but by the time I got home I felt horrible again. But they did help, so do massages and hot baths. We actually put a hot tub in our house, that is a wonderful treat! Keep searching until you find a doctor that will help you, they are out there. Don't bother going a second time to a doctor that "doesn't believe in fibro", I went to a Neurologist that told me that she didn't believe in it, thought it was all in my head...I didn't waste my time or hers by going back to see her again. For the most part, my GP has been the most helpful to me. For one, he's got all my history, and two, he's actually got a lot of patients with fibro so he stays pretty up on the latest treatments, etc. I have sleep apnea too, I sleep with a CPAP machine, when that was first discovered, I was so exhausted all the time, the tests showed that I stopped breathing an average of 21 times per hour during the night! Now, with the CPAP machine, I sleep really well and even though I don't want to get out of bed because my joints are so stiff and I can hardly walk until the morning meds kick it, at least I have gotten some good sleep. Take care of yourself and visit here often, it helps to know there are others out there dealing with the same things you are. Good luck.

     
    Old 10-13-2003, 05:43 PM   #4
    la_brat
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    Your symptoms are much the same as our youngest daughter's symptoms. She too has found some fatigue relief from Provigil.
    It's a shame to change to something that has more side effects when you have something that works. Could your doctor add to your diagnosis an emergent stage of narcolepsy?

     
    Old 10-22-2003, 07:08 AM   #5
    NaeNae
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    I just wanted to thank you all for your responses. I'm sorry I'm so late in responding. I feel so overwhelmed with life lately!

    Alice, thank you for such a nice post. I got a little worried when you mentioned Hepatitus. Both my Paternal Great Grandparents died from liver disease. Then my Grandma. Well, 10 years ago, my Aunt (again, dad's side) started with the same type of symptoms I have now. She was a young mother and they kept telling her she needs more rest, etc. So, finally she was diagnosed with Autoimmune Hepatitus (I'm not familiar enough with Hep yet to figure out the differences). She was barely hanging on toward the end of 2000. She was brought in for a transplant (she was like 43 at the time) and it was too big (she's very petite). Finally, in almost her last few days, she recieved her transplant (from a little girl, actually). Today she is doing wonderful. However, last year my other Aunt (her older sister) was diagnosed with liver disease as well. They told her she had several years. Well, she passed away at age 48 on August 24. So of course now I'm worried and mabye I should have my liver checked? However, I don't ever have problems with jaundice or anything? I'm way undereducated when it comes to Hepatitus C, but according to that website, it says you can get it from:
    Sharing a needle (I've never done drugs to share a needle)or had a tatoo.
    I've never had a blood transfusion or recieved someone else's blood.
    I've never been on dialysis or had clots.
    My only sexual partner has been my husband, as I am his ever, so I know I didn't get anything sexually.
    And of course correct me if I'm wrong, I'm going off of what I'm reading.

    Painsucks, I think I'll have to show my dh your post about the hottub, lol! I've been begging for one at least in my bathtub. I have a garden size tub, but the back is straight up and down-not slanted, so it's not comfortable to lay. But, the PT is helping so much. And the massage after is great. I'm just having a hard time making it 3x a week, with a co-pay everytime, plus dh getting off work early so he can take the kids.

    la-brat, I hope your daughter finds some relief! It's actually my Phsychiatrist (sounds bad, but my PCP couldn't figure out how to get me the best medication, so he sent me over there) who prescribes me the Provigil, so I don't think he can diagnose me with Narcolepsy. I can try my sleep doctor, good idea! He's trying me on Ritalin (same effect) but it makes me jittery. I don't think I like it.

    Anyway, wish me luck, I have an appointment with my Physchiatrist, Ortho Surgeon and PT all in the same day. I try to stagger them so dh only has to take one afternoon off. I told my PT about Fibro, he thought it sounded alot like what I had, he said he thought of it when I was telling him what was going on, but he couldn't say anything. He suggested going to a Rhumatologist. So we'll see.

    Thank you again ladies, it's nice to have somewhere to go where someone understands!


     
    Old 10-22-2003, 10:09 AM   #6
    lovemythreeguys2002
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    It sounds like you could have thyroid disease...even if you have been tested and told you are normal...you could have antibodies to the thyroid. Here are thyroid symptoms. I also was told I probably had Fibro, and found out it was my thyroid.

    *You feel tired, exhausted, and like you can't get enough sleep, or want to take daytime naps
    * You feel depressed, down, or sad
    * You feel cold when others do not, particularly in hands and feet
    * You've gained weight inappropriately, or you are finding it difficult to lose weight, despite proper diet and exercise
    * You're losing hair, particularly from the outer part of your eyebrow, or your hair is getting dry, or tangly
    * Your nails are breaking and splitting and become brittle
    * You have muscle and joint pains and aches, or you've been diagnosed with fibromyalgia
    * You've been diagnosed as having chronic fatigue syndrome
    * You have carpal tunnel syndrome or tendonitis in arms and legs
    * You have swelling and puffiness in the eyes, face, arms or legs
    * You have a low low sex drive
    * You have heart palpitations or a diagnosis of mitral valve prolapse
    * You're suffering from unexplained infertility, or have had recurrent miscarriages with no obvious explanation
    * You have had a heart attack or have clogged arteries
    * You have high cholesterol levels, particularly the type that is unresponsive to diet and medication
    * You have a heavier than normal menstrual period, or your period is longer than it used to be, or comes more frequently
    * You're going through menopause, and are having troublesome symptoms
    * You have worsening allergies, itching, prickly hot skin, rashes, hives, urticaria, chronic yeast infections, oral fungus or thrush, or stomach and abdominal bloating
    * You have anemia, or low B-12 levels
    * You find it difficult to concentrate, your memory is not as good as it should be, you feel like your thinking is "slow" ...also called "Brain Fog"
    * You are constipated, sometimes severely so
    * You have a feeling of fullness, or an obvious swelling in your neck area ...or sore throat/difficulty swallowing
    __________________
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    Old 10-06-2004, 03:19 PM   #7
    Iwantacure
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    Angry Re: I need help...feel so alone

    O.K, was just diagnozed with fibromyaglia. Tested for thyroid disorder showed in the normal range.
    My hair loss/extrem dry hair could not be explained by the doctor. I insisted my hair is not what it used to be because I know my hair and it falling all the time.
    It's extrem dry like crazy.
    Extrem dry eyes. I was told I don't need to do any further testing.
    Also, I forgot to say, I've done the testing in several points in my body and it did not hurt me! and I was still diagnozed with fibromyaglia?
    Anybody experienced this? help me.

    Last edited by Iwantacure; 10-06-2004 at 03:21 PM.

     
    Old 10-08-2004, 03:20 AM   #8
    ArmyGirlUSA
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    Re: I need help...feel so alone

    I feel like I can relate to everyone here! I feel like everyone, and have done pretty much everything you all have. I'm also 30 and I feel much older. It isn't fair, is it? My house is a chore to keep clean. My husband helps, but I have to have things put away right, if you know what I mean. It's all so exhausting. I'm so glad that I finally have others to talk to and it feels great. Don't feel alone--seek out this messageboard and know others are with you My advice to you is never "just deal with it." Seek help wherever you can and try different things. Like I said in another post, someone out there can help us.


    Last edited by ArmyGirlUSA; 10-08-2004 at 03:21 AM.

     
    Old 10-12-2004, 11:49 AM   #9
    NaeNae
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    Re: I need help...feel so alone

    Army Girl, are you my long lost sister? I am the SAME way. I can't keep my house clean anymore-I try-but it's so exhausting, painful, etc. I have 2 boys and it doesn't help having them around! My husband does try to help, but in the midst of the mess, I do have to have things done right. I'll have the laundry on the couch for a week, clean laundry, but it's not folded or put away (taking loads of folding laundry up 2 stories is a whole 'nother chore!). He offers to do it, but he puts it away all wrong, doesn't hand up clothes like I like it, has no idea where the boys' clothes go, so I tell him he's not allowed to touch the laundry!

    Are you in the Army? Or any Army wife? My dh is Air Force Reserves (Active Duty for 10 years before that), so I was just wondering.

    It's nice to be able to come here and get support!

    ETA: Threw me for a loop when I saw I was the one who started this thread, I had no rememberance of writing it. I saw it was written today, October 12, and really freaked out knowing I didn't write it today. Then I took another look at the date, it was written one year ago today, October 12, 2003. How weird is that? I just got a message in my email that my post was replied to, so I clicked on it to come here. For the record, things are still the same in my life..

    Last edited by NaeNae; 10-12-2004 at 11:53 AM.

     
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