Am I going nuts?

Discussion in 'Fibromyalgia Main Forum' started by trini23, May 20, 2009.

  1. trini23

    trini23 New Member

    I am new to the community, today I went to see a Rheumatologist, this is after seeing my chiropracter for over 5 years and many doctors before and after him, recently my symptoms have gotten worst to where now I am soo fatigue that I can't seem to keep awake, I tend to pass out thankfully in my home or my parents house and sleep for hours not just a few hours....sometimes more then 5 hours, and it really doesn't matter if I had less or more then 8 hours of sleep, my body just gives up on me. well aside from this I have had body pains sometimes more on one side then the other, and other symptoms, sorry I don't want to bore anyone, but today I just felt like nothing was accomplished after seeing this doctor, in fact I cried all the way home asking my husband who thankfully was driving, am I ever going to find what is wrong with I have to take those darn pain shots for the rest of my life that the pain management doctors keep giving me.
    I guess I feel really down today and I am sorry to lay this on you all, I just read some of your post and it made me wonder if what I have is fibromyalgia, my friend seems to think I do , the new general practice doctor said I could have it with IBS and the gastrologist that I recently seen who gave me an upper and lower GI due to having constant tummy pains have suggested having IBS or IBD along with fibromyalgia.
    Even my chiropractic suggested having it, now if these people suggested it...why did I have to see a rheumatologist who made me feel all she wanted was to know who referred me to her and why I was seeing her then only touched my fingers, my wrist ( I wouldn't let her touch my left shoulder, I was in great pain and told her not to touch me there )
    all in all I felt that this doctor did not know anything, I felt she was more worried about who referred me. I don't need a referral since I have insurance that doesn't require one , but I did tell her my general practice doctor told me to see a rheumatologist and a gastrologist.

    Then this rheumatologist told me she couldn't do anything for my migraines, and the swelling, tingling feelings I get on my hands and feet that I need to see a neurologist, she did mentioned I could have fibromyalgia and needed to have blood work done, they took two large vials and two small vials of blood from me at her office and then sent me on my way home, In which I cried all the way till I got into my bedroom, had my husband hook me up to the neurostimuli electroshock that my chiropractic had given me for home useage when I needed it. my body was in spasm it hurt to have it on so I had to have it under very low setting. the shock helps to relieve some pain but not all, I then cried more and woke up 2 hours later, I didn't know I had fallen asleep. I hate sleeping I always wake up with a cloudy feeling in my head. so afterward I sat and thought about looking up fibromyalgia and came across this site.

    So am I going nuts? I have seen a total of 5 doctors in the pass who either one diagnose me with the flu, ear infection, cold, one even cut at my back, a lump formed at my lower back next to my spine, he said it was an abscess, I shouldn't have let him do anything till I had gotten a second opinon, now I have a scar and a small lump still in it's place, my back has always been lumpy like , the same doctor has always said it was common to have abscess all over the back, but I don't believe him especially since he cut at my back with no medication to knock me out and the local numbness shots he did around the lump didn't work, I never went back to him again, this whole ordeal was very painful. I've always had a kick out of this one female doctor who gave me a pap smear after I told her of my problems with pain to my neck, shoulders, wrist, back and migraines...needless to say I never went back to see her again.
    here I go rambling..sorry, I just want to know if I should continue and see a neurologist? I am soo tired of having doctors make me feel like nothing is wrong with me. yet end up giving me antibiotics.

    thank you,
    struggling to find answers *sigh*

  2. Debra49659

    Debra49659 New Member

    I know how very confused you must be feeling. I can't help you with the neurologist as I haven't seen one. But I would recommend that you get a second opinion from another rheumy, and I would ask the office if he/she sees patients with FM.

    You really need a firm diagnosis before you can look at treatment options. I hope you don't have FM though, as it is a chronic disorder that you will struggle with forever. I wouldn't wish this one my worst enemy.

    I am so sorry you have to suffer like this and I hope you find some answers soon.
  3. rockgor

    rockgor Well-Known Member

    Welcome to the board. As you see there are nice people here to talk to. Don't
    think you are nuts; you are ill. Medical science has made great gains in the last
    200 years w/ innoculations and surgery, but has not done so well with chronic

    If you are depressed, you might want to try vitamin D3 and the B12 patch that is
    worn behind the ear. We also have a depression board here.

    Folks here are searching for the right doctor, the right med, the right supplements.
    Some people have had good luck with grape seed extract and with various minerals.

    I hope you can find some things that will help you too.

  4. Janalynn

    Janalynn New Member

    Hello and Welcome!
    First of all - NO you are NOT going nuts? What you're feeling is something we've all been through - so you're definitely not along.
    Secondly - you're not rambling or boring us! =) The more details the better for us to really understand what you're going through and try to help.
    Going through many doctors to find a diagnosis is very common for many patients.

    The blood work done by the rheumy was necessary and good actually (even if she wasn't) - it's needed to rule out other conditions that can have symptoms similar to Fibro. Once you get those results back - you can move forward. Many rheumatologists only diagnose - don't treat. Some do- it's a matter of finding the right one. They need to put ALL of your symptoms together to come to a diagnosis. Mention every little thing even if you don't think it's relevant.
    IBS is very common w/Fibro.

    Seeing a neurologist - yes I'd recommend - but wait til you get your results back. Your tingling can be part of FM or could be something different. I had it (still do), had nerve conductor tests done etc. (all normal). BUT...I was recently told by my Doc to go see one again for my horrific headaches. They now have many different ways to treat them. So if for nothing else, having them check out your migraines it's a good idea.

    Once you know what you're dealing with, it will be a little easier.
    It's also very common to become 'down', depressed etc. because, well who wouldn't???? It's not much fun living this way! So learning coping skills, knowing your limits, not to push yourself, getting the support you need and finding a good team of Dr.s is key!!!

    Don't give up on getting a diagnosis. Get your blood work back. If it's all "normal", talk to your regular Dr. tell her/him what you think, what has been mentioned to you and you need someone qualified who can tell you if in fact you do have Fibro.

    What is your pain like? Sleep issues are also huge with Fibro. do you feel refreshed when you wake up?

    this is a great webboard. I've visited a few and this is by far the best for good info and support. Please post whenever/whatever you want.
    We're all here for each other!

    Please keep us posted on your labs etc. Try to hang in there for the moment.
    Glad you found us!
  5. Pansygirl

    Pansygirl New Member

    So sorry you are going through this. You've come to a caring place. There
    are wonderful people on this board and we are supportive of each other.

    This is also a great place to ask questions or you can do a search on the forum to
    see what might have been posted about something you have a question about.

    I agree that you need to get a second opinion and make sure that you are getting
    the correct diagnosis, and then you can figure out treatment options and what will help
    you feel better.

    No your not nuts, being sick , hurting and fatigued makes it hard for anyone to
    function and be happy. It is very frustrating when we deal with this everyday.

    We are all different in what helps us with the pain and fatigue so keep looking
    and researching as we are our own best advocate.

    Take care
  6. trini23

    trini23 New Member

    Thank you all for making me feel better, last night was a frustrating event for me , I just started feeling down thinking " great another doctor who doesn't help me much, least she didn't give me a pap smear!" although that would have been funny but not impossible, I had one doctor who did do that after I told her I needed a physical and wanted to know why I was always in pain and exhausted ...among other things, after that pap smear I never saw her again =)

    this rheumy doctor really made me feel she was there for money and I was taking her time. she had no clue what was wrong with me, she told me twice I shouldn't needed to come to her since all she works with is bones, which she didn't even do a test on mine.
    well enough of her, I am now waiting on the blood results hopefully she will have that before she moves her office this week, and then I will be finding a new Rheumy, let hope the old one doesn't charge me 30.00 for my files like her paperwork stated.

    Meanwhile I had to break down and schedule an appointment with my pain management to get those icky shots I dearly hate soo much....they hurt. but it's that small pain compare to the greater pain I am feeling right now. and I scheduled an appointment with my new general practice, going to ask her if she can find me a rheumy that specializes in fibromyalgia and a neurologist. I'm going to figure out what I have been living with for about 10 years now whatever it is the pain's have gotten worst and now I am more exhausted then I have ever been.
    thanks again =)

  7. trini23

    trini23 New Member

    I'm posting the letter I had given this rheumy, who told me it was too long to read, and only skimmed through it. do you think I shouldn't have made it? all I was doing was making sure not to forget things I wanted to express to her.

    What I feel:

    Muscle, joint pain and stiffness all through my body and very, very tender area's on certain parts of my body......base of skull where neck meets the head, neck, shoulders, arms, the upper back, the lower back, chest, elbows, knees, hips, and my bottom area, I get Muscle spasms in these area's as well. some days my arms, hands, fingers, feet swell up and other times they tingle, stabbing pain other times they numb up.

    I wake up tired when some days I have 9 hours of sleep and still wake up tired, as if I didn't get any sleep that night.
    Brain fog, heavy fog feeling, like I can't concentrate.
    Memory problems, forgetting what I was about to say.
    Some days I have down feelings other times I'm okay.

    Balance problems, I get dizzy
    Migraine headaches
    Tension headaches
    Chest pains, there are days I have a hard time breathing.
    Pelvic pain
    Heal pain

    Ear pain ( more often on the left side, I also have problems with certain sounds, I am sensitive to certain pitch. )
    Jaw pain ( sometimes, but more on the left side.)
    Nose stuff..sometimes
    Throat problems

    Heartburn , Acid reflux
    Abdominal pains
    Constipation, along with abdominal pains
    Diarrhea from foods, along with abdominal pains
    Weather sensitivity
    Painful Menstruation

    Dry eyes, but then I do have allergies, sensitive to light, I used eye drops consistently, I wear glasses and sometimes contacts, but it doesn't matter what I use, I still need eye drops. )
    Numbness and tingling, Aching, some dull pains
    Skin sensitivity
    Chemical sensitivities
    Stress ( who doesn't have stress? But it seems my pains heighten intensely when I am overly stressed out. )

    Beginning of my day:

    Muscle and joint pain, every morning I wake up with my body feeling stiff, hurts to move, times I don't want to get out of bed, because of it.
    I don't get out of bed like a normal person, I roll out of bed, when I first place my feet on the ground my feet and heals hurt the pain goes into the calf muscles. there are times when I wake up just feeling overly tired and not refreshed from a long night sleep. ( when my husband can he helps by trying to massage my body to help the blood flow. )

    1. Stiffness of neck, Pain that is always there, dull pain, mainly on the left side. there are times when it's worst to extreme pain, to where I can't lift my neck off from my pillow, I can't seem to move it one way or another, it hurts no matter how I lay my head. when this happens I take Tylenol, Advil or Motrin...once we ran out of the three and couldn't stand the pain I took Midol hoping that would relieve didn't. I've had to call my chiropractor many times who has told me to put cold compress on the area's that hurt.
    this pain I have sometimes is at the front base of my neck that meets the chest area., it is very tender and becomes annoying when it hurts. it effects my ear and jaw when it hurts. my left side of my ear the most.,I get ringing sounds from this left ear and some days it feels like there is fluid in it and other times it just feels like air has been trapped in there and the pain starts to throb from that ear.

    2. Pain in mainly Left side....shoulders down to elbow, forearm to wrist and into the fingers
    muscles - sometimes stabbing, tingling feeling. I can only extend my arm back to a certain degree without it shooting pain down to my fingertips with sensation of tingly feel and then it starts to numb up.
    Pain at Left shoulder blade area, always there, sometimes it heightens to where I can't nor want to do anything due to the pain is soo great I can't stand it.
    left side of my body is a consistent pain I have. some days is dull, other days it's intense. there are days I can't stand the sharp muscle spasms I get in this area. I like to stay in my room when this happens, I tend to be very snappy....crabby.

    3. Pain to right shoulder to forearm, not as severe as the left side. the pain on the right side is not consistent like the left side. Pain at right shoulder blade area, not often, not as severe as the left side.

    4. Pain to left wrist always a dull pain. some days intense pain.

    5. Pain to right wrist, not often. nor as severe as the left wrist.

    6. Lower back pain..... Occasionally.
    BUT both are intense during my period.
    when I have flare ups of pain, there have been times when I couldn't walk. the pain was soo great that it kept me from even standing, sitting, any type of position hurt, there was no comfort at all.
    Some days I don't have to be on my menstruation for it to flare up in pain, some days it depends on what I did for example, I cleaned my children's bathroom and had to clean the dog's mess when no one let her outside.
    In fact recently I went to see a new doctor due to it. and she referred me to a Pain Management doctor next to her office. I did go and they gave me what I was told shots to relieve the pain and some prescription medication. the shots felt like they numb the top layer of the pain, but I could still feel the dull sensation of it. the shots did not help the next day.

    The Left side is always the worst, there has been times where the left side throbs with pain and other days I have shoots of pain in my pelvic area, sometimes it's both sides of my hip area, but mostly left side. once I thought it was my ovaries that was causing the shooting spasm pains, I went to my doctor who said I was maybe getting my menstrual, I asked her for a yearly exam. all I got was a pap smear.....that was the day I looked for another doctor.

    I have had problems with doctors doing other things for example, the last new one I had when I came in for back pain, he found a lump next to my spine on the right side, I still have this hole after he tried to take out what he called an abscess. the doctor before him used to give me samples of muscle relaxers and other times he thought I had the flu, cold, ear infection or my allergy flaring up when I would go in for pain's in the ear, throat, headaches and body pain's.

    8. Occasionally both left and right side of my butt area hurts, standing, walking and sitting doesn't relieve the pain. sometimes the pain is one side over the other.
    the pain will sometimes shoot down to the back and to the front part of my knee, more so on the left then the right.
    when I went to the pain management they did ex- rays of my knee's, the left one shows I have a pulled tendon. they wanted to insert needles to give me shots...but when I was told it would hurt, I opt not to get it, since I was already in pain from every where else and already had received shots to try to relief the pain on my shoulder, neck and base of my skull.
    the day they wanted to give me a shot for the base of my skull and the back of my neck spine, I started to shake, cry and had problems breathing, I couldn't go through with it. but later that week I had to come back and get it done, It hurt soo much I wanted something to take the pain away. my daughter had to hold my hand as well as the nurse practitioner and help me get my mind away from thinking about the shots into these areas.

    9. Left and right lower calf muscles, aches the pain goes into my heals and sometimes the bottom of my feet the archway. but the pain is always at the heals the most.

    10. Some days I would be just sitting watching t.v. and the weather is not hot, I start to feel sweaty. sometimes I sweat at night in bed, sometimes in the morning when I first wake up. I have cold and
    heat intolerance,,,,,,days I feel I'm cold when it's hot in the house.

    There are times I have a hard time sleeping, even though I am tired at night I am awake. But then there are days when I am soo tired I pass out and sleep for hours once I sleep for 5 hours and this is after I had 9 hours of sleep that night. when this happens it is especially scary for me when I am not at home to lay down. some days I feel soo weak, I want to do things, but can't seem to do it.

    I have a hard time concentrating sometimes, I feel like I am going nuts when I can't remember certain things, I have to write or type down my day's event when I have to do something, like doctor's appointments, my children's field trips, everyday my daughter tells me when to pick her up from school just soo I don't forget this is frustrating.

    I hate making conversations with people, because I get embarrass when I am in mid sentence and forget a certain word and my mind starts to search for another word for my meaning. This is exactly why I wanted to type out what I feel, every time I see a doctor I forget certain things I wanted to say or I pause for a bit searching for that word I wanted to use. I used to blame it on the fact I was raised knowing 5 different languages, but since I was 7 years old, I have not known how to speak in those other languages since I learned English. I know better though, I was not this way before I turned 32.
    two doctors once told me when I was 34 I may be coming down with early menopause.....but that was all the extent of the talk, no more research was done to help me out.

    I have had my period since I was 8 years old, my period has never been on time nor normal, I was diagnosed with cyst in both ovaries which one doctor told me I would never have kids, this is before they knew more about cyst in women's ovaries I was 12 years old in 1982.
    in fact had a doctor who wanted to take the cyst out and if it wasn't for the fact my mother found out about a women who had this done and ended up having both ovaries taken out, I said no.
    I wanted children, but doctors kept telling me no to having kids....6 children later I proved them wrong. now my period has been really irregular then my own normal way. sometimes I have periods once a year other times I would have it 2-3 times this has been this way for about 4 years since I was 36 years old.

    11. My weight is always up and down

    I am sensitive to some cleaning chemicals, I can't use certain cleaners when I do, it effects my lungs and I can't seem to breath,my chest hurts, I end up with a sore throat, other times it effects me to where I end up having bronchitis.
    I told this once to a doctor, he told me it was a normal reaction that people have problems with. so I always thought it was okay to use, I was once a house and apt cleaner for a company, some cleaners effected me soo much, I had a hard time breathing, and it would create chest pains, a few times I ended up with bronchitis and other times I felt like I was too wiped out to do any more cleaning, I let that job go. especially when people wanted me to start using products that I couldn't stand to be around.

    Bleach fumes
    Certain floor cleaners
    Certain dish soap
    Certain hair shampoo's
    Certain cleaning products. I can use only what doesn't effect me
    Certain cologne, perfume, even down to flowers, plants, dogs, cats... we have a dog, she is supposed to be hypoallergenic type, half poodle half silky terrier. I can't stand being near her when she has been outside or hasn't had a bath, I do not go near her at all until she has a bath.
    If I do, I get sick and she is only allowed to be bathed in certain shampoo's

    I exercise when I can, my husband and I belong to a gym, last year I took their water class to become a water instructor and get certified. I took the class it was a 3 day event. the second day they had us do some of the exercise we would be teaching, I felt semi okay afterward, the last day, they had us do intense workout, having us do the workouts and standing on the side of the pool teaching some of the movements, then they had us go back into the pool and do more workouts. it was too much, I ended up being drained of energy, that night I felt like I was coming down with the flu, my body ached, I had a headache, I even went to bed 2 hours before bedtime. and the next day I felt like crap. I couldn't move, my whole body ached from head to toe. I cried and cried due to the pain and then was sick for almost two weeks. I ended up with bronchitis.
    a month later my friend invited me to walk with her and her daughter, I did so for about a week the second week she wanted to start doing some runs with the walk, I did, but no sooner after it wiped me out, I was soo exhausted not your normal exhaustion, my muscles felt weak, I layed down and never woke up till the next day, and ended up sick for a week.

    I can't even do the normal gardening, It takes me forever to just dig a normal size hole, I feel exhausted after a few digs and I tell my body to finish it, I try and end up laying down on the ground, my heart races, my body weakens and feel like I am about to pass out, so I lay down and wait 10 min till my heart stops racing, I make myself get up and try digging again, it took 5 hours to dig two small normal size holes. I pay for it later too, I ache,feeling weak, headaches, loss of appetite but thirsty as heck, I take a shower, take two Motrin and go to bed, I wake up the next day feeling tired still and in pain all over.

    Things that have been done and medications that have been used :

    1. Cortisone injected into painful points
    2. Anti-inflammatory drugs
    ( I can't remember the name, they where samples from awhile back in 2004 )

    3. Pain medication prescribed and over the counter.
    4. Ultrasound treatments ( used to get these on my wrists. I was told they were ultra wave, sometimes it was painful to get done. )

    5. Massage
    6. Heat for temporary pain relief
    7. Cold for temporary pain relief

    8. Baths, although I don't do this unless someone is at home to help me get up from the bathtub.
    9. I have my own personal shock system at home one of my doctor's prescribed. Neurostimulation Electrodes.

    I know I may have forgotten a few things, I wrote this all out for two weeks hoping I could remember everything not including the fact it pains my wrist, back, shoulders, and hands among other issues....after awhile sitting here typing. I would write it all out on paper the normal way, but then that would take forever not including painful and the fact you may not be able to read it after awhile due to my now bad penmanship, since the car accident about 10 years ago, my wrist, neck and shoulders have not been the same and writing is painful , so is typing, but at least I can type to where people can read it.
    I thought many times to delete this all due to feeling stupid, I have gone to soo many doctors and only three recently has mention to seeing a Rheumatologist including my chiropractor whom I have been seeing for at least 6 years. well he mentioned it last year, but I was tired of going to see doctors who had always given me antibiotics and not really helping with the problems, if it wasn't for my stomach having more problems to where I had to see a new doctor whom had suggested seeing a gastroenterologist ( I had to look up the spelling on that one.)

    and if it wasn't for the new doctor ....Dr. Jenifer Cool, I wouldn't have remembered Dr. Dallas Cann suggesting to see a Rheumatologist ( I also had to look up the spelling on this....very long word ) and it confirmed it more when the nurse practitioner mentioned seeing one as well. all in all I still may have deleted it, if it wasn't for my friend and my husband to pushing me to write things down so the next doctor will hopefully understand what I am going through and hopefully come to a conclusion of what is going on with me.
    By the way the gas doctor and doctor Cool both mention I may have irritable bowl syndrome or irritable bowl disease. this is still being figured out of the which of the two I have, I have had upper and a lower GI done and will be seeing my gas doctor soon for a follow up in the meantime he has me taking Lialda.

    Thank you for your time and patience of reading this, I hope it gives you understanding of what I go through.

    [This Message was Edited on 05/21/2009]
  8. xchocoholic

    xchocoholic New Member


    I could've written this back in 1990 when I first became ill with CFS/FM. And now a freind of mine is going through this too. It seems that we are a good source of income for the medical profession. A Cash cow .... you might say ... I've gotten cynical here lately ..

    Many of us have found incredible relief from most of our symtpoms by eliminating the junk foods from our diets. This includes gluten, dairy, soy, corn, msg, etc.

    If you want to know if this will help you just eat organic meats, fruits and veggies. I felt better by the end of the first day but continue to make progress still ... it's been a long journey for me. Check out my profile.

    Which reminds me, were you checked for celiac disease ? Nutritional deficiencies, candida, etc ?

  9. Janalynn

    Janalynn New Member

    Great informative letter to keep in your file. I would think most Dr.'s would want that information! If you're hesistant to hand a new doc that letter- highlight the headings of each section (or Bold). They'll see that, know what you're dealing with and can then read for further detail.
    BOY you sound JUST like many of us!!!!

    BTW- if it's Fibro - anti-infllammatories won't do much unless you have some arthritis on top of it. Fibro doesn't have inflammation - have you found them to be beneficial?

    Muscles - how are your muscles - painful? achey? I couldnt' reply to your last post as there was no 'reply' button (?) so I can't remember exactly what you said. I know your calf muscles are causing you pain.
    Muscle relaxants are often prescribed for those of us with Fibro.

    What kind of 'shots' are you getting at the Dr. - cortisone shots? Where? You're also only taking OTC pain meds?

    You need to be checked for tender points. does your pain mgmt Dr. have Fibro experience?

    There are many options available to give you some relief - you just have to find the right doc.

    DO NOT GIVE UP!! You're very in tune to your body and it's obvious in your post that you have the will and determination to move forward...=)
  10. AuntTammie

    AuntTammie New Member

    More than anything, it sounds like you have ME/CFS and quite possibly FMS and MCS (multiple chemical sensitivities) along with it (it is common to have all of these together)....the thing is that though you have many of the symptoms for these illnesses, there are other things that can cause similar symptoms, have to rule out all the other possibilities to confirm the diagnosis.......the reasons that it sounds predominately like ME/CFE, though, is the extreme level of fatigue even after sleep, the PEM (post exertional malaise - that means how easily you get exhausted after doing a little activity), and all the flu like symptoms....the pain could be from ME/CFS as well, or it could be from FMS, and the sensitivities to all the chemicals and stuff sounds like MCS....also being sensitive to temperature, noise, and other sensory input is very common with all of the above (ME/CFS, FMS, and MCS)...oh and I think you mentioned possible IBS - that is also very common with ME/CFS and FMS

    so, a lot to deal with, and I'm sorry you are having such a hard time, but no, you are NOT crazy....and yes, this is a really good place to come for support and information

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