Years of pain,yet docs shirk me.

Discussion in 'Fibromyalgia Main Forum' started by Nechama39, Sep 11, 2008.

  1. Nechama39

    Nechama39 New Member

    I am here in St. Louis,Mo U.S.A and have been suffering with the following symptoms which began when I was a young child, with more symptoms appearing at the age of 19. My legs ached to the bone and at times my hands would tighten like rubberbands, become numb and painful. My Mother took me to my pediatrician who told her they were "growing pains" and just to give me baby aspirin as needed. It normally occured when I was sick or stressed and during the episodes, I would be down to the bone tired. At 19, I began having serious points of pain in my neck, shoulders, two points in the lowest part of my back. It was there everyday but somedays were better than others and the worse being cold days, humid days,illness,stress, and working myself to death (start out strong, become fatigued and then it would hit me hard.) The episodes got closer together after having given birth to my first child in my early 20's. Went to see the Doc and he told me I was fit a fiddle and he put me on anti depressant medication. It seemed to help a little at first but then it quit helping after a short time. After which I was told in a nice way that it was all in my head. Also when I had the episodes of pain I would stay awake and be unable to fall asleep until 4 or 6 a.m. my legs hurt so badly that I have to keep moving them, I wag them to and fro as I lay, I get up and pace the floor, after my son I would suddenly have wild fits of stomach cramps with loose bowels that hit me often out of nowhere when it used to be constipation. Now it is both.My joints kill me,my jaws kill me, everything pops and cracks or feels hot and swollen or tender to the touch, I get severe headaches at the base of my head or the ones that pound the top of it. My eyes are always dry and itchy, the lining of my nose is often so dry and burns so badly inside that it feels like it will crack and bleed. I get loads of sinus infection. My mouth is dry ALWAYS but sometimes that too isn't as bad as some other times. My vision is blurry alot and sometimes they will turn blood red for no reason I have been able to discover. I had an eye exam and I am told I have 20/20 vision although I have to pull my books and such to my face and away from my face. I used to be a medical technician and got worried I was going to hurt someone because half the time I couldn't see my target and took my time palpating in the effort to not have to stick my patient more than needed which made all my draws take longer. Last fall I became very ill with two bouts of plueresy two months apart, several bladder infections followed and in these more than one course of anti biotics was needed. The doctor decides to do a c.t. scan and finds I have several small pulmonary nodules, I was having such terrific pain in the bottoms of my feet that I could'nt bear to walk on them. They discovered a herniated disc in my lower back and said it could contribute to the pain,numbness,tingling,burning sensations I was feeling. They drew an rh panel which came up sero negative a lipid panel which showed my triglycerides at 450, they were 478 three years ago, tried lipitor and after one month I had two fainting episodes and muscle weakness, so without explination, my doctor told me to stop taking it. I was told "The mind and body are very closley connected" that I was not crazy, just depressed, and she informed me she was an internist, not a Pschiatrist. And she gave me a refferal to see one and I refused to go, because in my mind, that was the same as her telling me I was infact crazy. For the past two weeks, I have not been sleeping well, I have such severe cramps in my left calf that it wakes me with a start and I cry out as I try to stretch my leg out to make it stop, my shoulders and my feet are murdering me, I have been crying off and on for the past three days because nothing I do can make it stop. I start out every morning with a stiff and hurting back, the same for my hips and ankles, I have more limited range of movement in my legs than ever before in my life. My hands and feet will either be pale white and killing me or a strange purply color. I dread the thought of winter because last year, I was in bed and in severe pain frequently because of it. In two years, I have switched doctors 3 times, trying each time to give them a chance to figure this out. I was sent to a neuro surgeon, who then kicked me to a neurologist. I endured a nerve conductivity test and all he told me was it's okay. I then asked so are these symptoms just my imagination then? He replies no, many other people experience what you do. Then I asked what is the name of this condition? He replied "It doesn't have one." He walked out of the room and closed the door leaving me there feeling fit for the funny farm. My pmd released me for work without notifying me that he was doing so. The last I knew he told my employers until further notice, had me come back for another c.t. for my lungs,, never notified me that he released me, then 3 months later, my employer notified me that I had been fired. And my insurance had been terminated at that time. So here I sit, no job, no insurance, need to work and can't because It hurts so bad almost everyday that I can't even clean my house or do anything else like I used to. It affects my relations with my husband, can't do anything with my children the way I used to. Now I don't know what to do. I can't take it anymore, and yes now I am really depressed. My whole life has been robbed by something that the medical professionals I have dealt with deem as non existent. I can promise everyone here that what I have been feeling all these years is REAL. I am a prisoner of my own body and I can not get out. I can't even get any person with a doctrate to believe me. How can I make them? I did nothing last fall and early spring but go back and forth to people who don't care that I am suffering. My life is so close to being not worth anything at all to me because it is consumed with nothing but pain that shuts me out of my own life, there is no quality to it. I'm 38 years old, I always had agood diet, never got overwieght, I took my vitimins, I excercised up until it got to painful to do it. If anybody at all has some advice please tell me what I can do, before I have to start wearing a bucket under my neck to catch my tears and before my husband walks out on me because I can't do anything anymore and I am no longer the same person he married. Please, anybody that was in the same boat?
    [This Message was Edited on 09/11/2008]
  2. pam112361

    pam112361 New Member

    I noticed you had no responses and wanted to respond. If you'll break your post into smaller paragraphs it will be much easier for us to read. You might get some responses if you do.

    Thanks and gentle hugs,
  3. Nechama39

    Nechama39 New Member

    Sorry, I am currently going through a two week long fit of pain. I just let it out in one long stream because I can not concentrate on doing anything right at the moment.
  4. lynn3811

    lynn3811 New Member

    I am so sorry for the way you are feeling. Have you gone to rheumatologist? I went for two years with no doctors believing me about anything. So, I started researching, and thought about FM. Told my GP. and he sent me to a Rheumy. And so they say, the "rest is history".

    Good luck, and my thoughts are with you..

  5. Nechama39

    Nechama39 New Member

    You hit the nail right on the head. I don't eat alot of sweets , but 4 teaspoons of sugar in the several cups of coffee I drink a day trying to fight fatigue from the many hours that I don't sleep and tons of wheat products for fiber plus the good ol' metamucil. I'm a big carb freak and don't eat much fruit. I like it but they charge you an arm and a leg for anything that contributes to better health. I'll certainly have to make some big changes in my diet. Thanks so much for the tip. I had no idea that there where so many foods that were no no's. But if it is what I must do, then I MUST DO IT.
  6. Nechama39

    Nechama39 New Member

    I asked my pmd to refer me to one and instead he decided to draw an Rh panel amongst many other things. When it came back sero negitive, he said he didn't think I needed to see a Rh specialist. Instead, he blamed it on my herniated disk and sent me to a neuro surgeon. While the disk thing does not help, it's not the whole problem, I told him that, but he didn't seem to care.
  7. Janalynn

    Janalynn New Member

    Do NOT give up! I have many of the same symptoms as you do -without the disk problems.
    You need to find a new doctor. One who will take the time to listen and put the pieces of the puzzle together.
    I would make a concise list of symptoms. Then I would make a list of ways that it is affecting your ability to function. Very to the point.
    I have:
    I can't:
    Also have a list of medications that you have tried and what has and hasn't helped. Tests that have been performed, lab results etc.
    You need a diagnosis, then can go from there.

    I was fortunate, when I was diagnosed with Fibro, it was never once brought up that something might be 'all in my head'. I knew it wasn't, no one even eluded to that fact. Thank goodness or I would've thrown something across the room.
    I know it's going to be hard, but start fresh. Don't even bring up the fact that someone else told you it was in your head or that you needed psychiatric help (per some uninformed doctor)

    I have some of the same pain you have, the horrible bouts of diarrhea, how your feet, skin turns white or purple etc.

    Your life IS worth something, do not ever doubt that! You are a mother, do you know how much you mean to your kids, regardless of what you can or can't do? - you just need someone to listen to you to get some relief.

    I don't know where you live, but see if there is a good doctor in your area (sticky at the top of the page)Insist on getting to the bottom of what the mystery is. Ask nicely for someone willing to help you figure this out because the quality of your life is in serious question because of your pain.

    I cry a lot and I have an understanding doctor, so I feel for you! Please keep posting - we here care!
  8. Nechama39

    Nechama39 New Member

    I think there must be too many uninformed doctors. I'm in St. Louis, Missouri and the last PMD I chose swore to me that he'd get to the bottom of it. In the start, I was just anxious and desperate to find out the cause of my pain and the other effects I'm suffering on the side and now I'm just angry. I can not believe that with all the research being done, that there are medical professionals still treating it as if it were a Psycho illness. That just causes people who have it to suffer all the more in other ways and most importantly inwardly. Outside of the depression that is suffered because one's quality of life has been reduced, one being treated as a mental patient with an imaginary problem makes it worse.
  9. Ranigar

    Ranigar Member

    I rarely post anymore but you have described my symptoms that started several yrs. ago.I am so much better then I was but still miserable and coping day by day.There is no cure and I'm not a Dr. but I was where you are and feel your frustration and terror that no one will listen.Each Dr. I saw took me serious so I was lucky in that but they would just drop the ball if their test didn't show they could operate or come out conclusive of their specialty.I had a really good PA that would encourage me to go back and insist on help or try a new specialist.Have you been checked for Sjogren's Syndrome?Finally a neurologist stumbled on that.A Rhuemy added Fibro and a neurosurgeon dx herniated disc but doesn't want to do surgery.EMG showed abnormal reading so they said sensory neuropathy.Plaquenil is an antimalarial drug I'm on and it's holding the inflamation at bay which is huge for me.You have to keep pressuring them for help .Even inconclusive tests don't rule out these illnesses.A lip biopsy showed Sjogren's.Don't give up.
  10. Nechama39

    Nechama39 New Member

    My problem now is that earlier in the year I had taken a medical leave of absence, my ding bat doctor apparently decided I could return to work and meet the full physical requirements for my job, whipped out a release to my employer and didn't inform me that he had done so, then I was fired and didn't know it until my insurance was declined on one of my return visits for routine c.t. for the pulmonary nodules. I would have to pay out of pocket to see another doctor to continue my fight for a dx, and sadly, here I am without a job, without insurance and in pain. The last time I saw that doctor of mine I could hardly stand to bear weight on my feet because the pain was so bad. I find it comical that he would release me to full duty that way when my job required me to be on my feet throughout my shift, running like a mad woman. I don't even know what to do now.
  11. Jana1

    Jana1 New Member

    Got to top of page and Doxygirl's thread on, Post Your Good Doctors here.

    I haven't looked, but I am positive Doctors in your area are recommended.

    Use what money you have left on a Dr. who believes in Fibromyalgia. Sell something if you have to, you have GOT to get a good doctor so that you get relief from your constant pain.

    When that happens you will be able to think more clearly about your other, etc.

    Good Luck...we all care about you and your pain.
  12. Nechama39

    Nechama39 New Member

    Thankyou so much! I feel VERY relieved to have found this website and I can not tell you how much I appreciate the support inthis thread. I will sell what I have to because I just schlep through this anymore. I hate not only the pain, but the emotional things it is doing to me, to my husband and my children because they have no understanding of why I can't do so many things or how great the pain is although they see it. They are just tired of it and me too. I want to be the mostly hyper active, funny person I used to be before this became a constant event in my life. I wish I could just make it like it was back then, I'm hoping I can have that back. Love to all of you in this thread and I shall always want to return to it as I have so much still to learn and your advices are much needed. Happy to have found you all!
  13. Bunchy

    Bunchy New Member

    I'm sorry for what you have been through. You are obviously a very brave person (((hugs)))

    The eye, nose and mouth dryness made me think of Sjogren's disease and some of your organ involvement sounded a little like Lupus - have you been tested for both of these? I think I would demand to be thoroughly tested for both these autoimmune conditions as a first port of call.

    Some of your pain also sounds neurological in origin and I can relate to some of the symptoms you mentioned.

    I have ME and FM and MCS but I have a lot of complications of the central nervous system too. Those are the scariest and most difficult symptoms to deal with.

    I hope you can get this figured out in time and get appropriate treatment.

    The main thing would be to find a VERY THOROUGH and UNDERSTANDING doctor - this is definitely NOT in your head.

    Keep us posted please :)

    Gentle hugs,

    Bunchy x