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  • Doctors will not diagnose me. What the hell!

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    Old 07-27-2003, 09:07 PM   #1
    krissy8317
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    Post Doctors will not diagnose me. What the hell!

    I am so frusterated I have been suffering for seven years with this horrible, painful dibilitating undiagnosed illness.I have seen at least 15+ doctors for my symptoms and they all shake there heads and refer me to someone else, so they don't have to admite that were not smart enough to find the problem. meanwhile seven yrs of agony & misery has given me plenty of time to do my own homwork on my illness. I have had every blood test known to man, you name it I have been pocken in the arm for it, lime, lupus, thiroid, arthritus, cancer, etc., x-rays,CT scans, sleep studies. I have read and read and ruled out all other ilnesses like fibro (almost positive because I don't have the tender points),MS, Hepatitus C, pretty much everything. So here I am I have made sure that I have soaked up all the information I can on cfs and gotten all my facts straight, I am 99% positve I have all the symptoms to qualify for CFS. I have talked to my PC about this and the reum. specialist I just saw and gotten no where. When I was about 13-14yrs old I got sich w/strept troat & after that experienced an Incredible fatigue that has never gone away.That's when all the fun tests started. I had all kinds, two for mono both negative, travled back & forth 2hrs to boston every wk to see doctors & specialists
    because I was constantly sleeping 20 hrs a day and waking up exsausted. Finally my third mono test was positive. After that STILL to this day I am not quite the same. I started experiencing excrusiating foot pain and could barely walk and the end of the day at 14 yrs old. I was given special orthotics and put on anti-inflatories everyday. Then the muscle and body aches started everyday a couple yrs later. My body felt like I had done an Intence workout and you know how the next day after you haven't worked out for a while you feel really sore? That's what I have woken up to everyday for the past 6 yrs torture. I was put on meds for depression,mood & anxiety and in 2 yrs at 16yrs old had gained 67 lbs. I had to drop out of H.S. and wk 3 days per wk. I don't remember much of my adolecent & teenage yrs. because I literly have sleeped them away. A typical day for me at age 17 was being awake only 4-6 hours a day. It makes me cry to think I have already lost the time and memories of a third of my life, a priceless childhood robbed from me, that can never be returned. I also have lost my ability to grow into the real person that I know I should be, instead of the disabled, helpless,depressed miserable 20 yr old girl I am right now. I know deep down I am intellegent and articulate, funny and outgoing, opinionated and a strong independent young women, and I was ment to be something, ment to be somebody in this world. At least thats what I try to still belive but it gets harder and harder to hold these words true to my soul. Anyways back to my story just when I thought my physical pain could never, ever get worse (God does not have that sick of a sence of humer, right?)when 6 months ago suddenly one day I had really bad pain inmy lower back. Now I have never experienced pain in my upper body so this really frightned me to death. I wated a couple of days and it still didn't go away this pain was so intense nothing like I have ever experienced in my life. I couldn't stand it and had to got to the ER three days after it started, they gave me pain killers, which I wasn't to excited about, but it took the edge off and helped me cope for a while. Meanwhile I had more x-rays taken (Dr. told me he has never seen more perfect back x-rays, I cringed when he said this hoping he would find SOMETHING WRONG to explaine all of this. I started acupunture which did nothing and began seeing the most kind, caring, validating chiropracter in the world twice a week. Though the Chiropractor has been wonderful for info, valadation that this is all real, and the most suppotive doctor I have ever met, I have not had any relief. I don't really think he is making my pain worse ,but all I know is the pain has drastically increased & now spread to my intire back and neck and radiates down my butt,leggs, and into my arms this pain is something that I can never even describe to you, it is so horrifying. Although my past severe depression is totally under controll now, I find myself not suisidal really, but just face the feeling of complete missery and hopelessness everyday. I don't wan't to kill myself at all like the depression I used to have it is just that I have no quality of life anymore and there is no point to it all. I just want to be out of pain for once in my life. Im so tired & drained after all these years (and not just physically)fighting with doctors and searching for an answer or medicine constantly consumes your soul after a while, it ages you, not in the way time does but in the way stress and going through lifes **** does. When I was 13 people thought I was 20, 16 they thought I was 24, and now at 20 yrs old I just feel like I am 90. I'm sure someone reading this knows what I am talking about with these tpyes of illnesses ageing you. I am so completly consumed with fear of this monster 3 weeks ago I wook up and my fingers & toes were all swelled up & sore I could hardly bend them at all. When will this ever stop hasn't it already taken enough from me my life, friends, happiness, career it's killing my mother too, she cries everday to have to watch her baby girl go through so much at such a young age. That's the worst part by far for me. So I am honestly from the bottom of my heart I am asking, pleading, beging someone to help me and give me some advice and answers. I know you guys arn't doctors or anything, but skrew that doctors abviosly don't know anything or else I wouldn't be here. I know the answers that you hold are so much more valuable and informative than coming from a cold hearted docter that hasn't experienced any of it. So If anyone has even taking the time to read this post that is so much longer than it was a originaly supposed to be(sorry needed to vent) and has ANY info for me at all, ANYTHING, It would mean the world to me. If you think my symptoms sound like CFS,FMS, or anyhting else you think it sounds like. Do you have any advice about how to get a doctor to diognose me? Do you know of any good doctors I can see in massachussets or anywhere? Does everyone else have a lot of morning stiffness & aches,& pain is worse in A.M. & P.M.?Is anyone else also diagnosed w/depression,anxiety or bi-pol.? If anyone ever ever needs someone to talk, listen, or just be a friend will be here for you guys if you need me. Just ask. I know what it is like to feel all alonein a whole world full of people. My deepest thanks t everyone who has read this or responded to me.
    Goodnight
    Other symtoms:headaches,nightsweats, heavy sweating,anxiety,blurred vision,allerigies,exzema& itchy hives, irritable bowle syndrome,constapation,hypoglysemia,brain fog,memory loss/consentration prob.difficulty learning & retaining information.



     
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    Old 07-28-2003, 12:47 AM   #2
    cjay
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    Hi

    First == see an endocrinologist, if you have not already. This is a specialist who can take time to listen, perform quality tests and if, necessary, refer you to the Right doctor.

    You could have autoimmune issues that impact on your body in general. Don't rule out some of the conditions you have learned about. Only bone age studies and blood test can make a final determination.

    Good Luck
    Keep us informed


     
    Old 07-28-2003, 03:47 AM   #3
    peregrine
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    Krissy,

    Your symptoms do sound a lot like CFS/Fibro. I understand wanting that "official" diagnosis, but it is often hard to come by. It is very difficult to find doctors who understand this condition. You might do better to become very educated yourself. Do research on all the illnesses you mentioned and see if you fall into their symptomology. For CFIDS, I would suggest going to the CFIDS Foundation home page where you will find a list of symptoms, how to tell if you have it, a list of honor-roll doctors and, perhaps most important for you, support groups. Although age is not a factor, you are very young. It is frustrating enough for those of us who have had more life experiences. I remember how frightened and discouraged I felt when I first got this (CFIDS) at age 50, so I feel for you trying to understand and cope at 20 - with whatever you have!

    Also, you may have more than one thing. Many people with CFIDS have multiple problems. I, for instance, am also hypothyroid and I have Hashimotos. Thyroid problems frequently accompany CFIDS. If you have Firbo as well that may account for the pain you describe.

    Keep your chin up and don't despair. Knowledge is a great soother of anxiety. Once you become more informed you will not feel so helpless.

    Wishing you all the best!

    Prema

    [This message has been edited by peregrine (edited 07-28-2003).]

     
    Old 07-28-2003, 02:54 PM   #4
    AliceBlueBelle
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    Krissy,

    Just wanted to add a little more to the great advice you have received already. One thing you and your Mom might want to do is get copies of all the lab work, x-ray reports, etc. from at least the past year. You should be able to get a copy where the tests were done and processed. It's good to keep track of things that are bordrline high or low and see if these things remain normal. Also, as in the case of your mono, it can take months or even years for some things to show up in testing. Usually, even if an illness has a name, the main thrust is usually in treating the symptoms. A good diet and even some supplements often helps. If you take supplements, make sure you also have a good quality multivitamin as they are not all created equal

    You need your own file of tests so you will have the information should you see a lot of different docs.

    Your writings sound a lot like mine when I was 18, very ill, and no one had a clue. As I have learned along the way, we really do need someone we can talk to. A good counselor can do a lot in teaching how to cope with seemingly impossible situations. Sometimes our frantic, worried frame of mind can be very detrimental to our health, making things even worse. I only wish I had a great counselor to talk with sooner.

    If you have any questions, don't hesitate to ask.

    Alice

     
    Old 07-29-2003, 06:41 PM   #5
    Renee016
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    Krissy - I am here for you!

    Recently in my own quest for a diagnosis, I have been researching Lyme disease and a lot of the symptoms you describe sound a lot like it:

    Extreme fatigue, malaise, new onset seasonal allergies, pain that migrates, unexplained weight-gain or loss, joint pain/swelling, stiffness of joints, back,or neck, pelvic pain, burning or stabbing pain, weakness, numbness, tingling, pinpricks, lightheadness, brain fog/confusion, mood swings, irritability, depression, anxiety, short or long term memory loss/forgetfulness, too much sleep or insomnia, night sweats, sore throat, stiff or painful neck, double or blurry vision,sensitivity to light, constipation/diarrhea, irritable bladder, upset stomach, nausea, ringing in ears, vertigo, etc.

    These are only SOME of the symptoms from a list I printed out last night. I know you did mention that you were tested for Lyme already but from what I read, the tests are extremely unreliable. Also, you don't always have a rash - something like 40% of people with Lyme never had any rash.

    Just something to think about. Maybe you should see an infectious disease doctor. In the meantime, hang in there - I know it is hard and really sucks not having a diagnosis when all you want to do is justify your symptoms and know you're not crazy!

    I will be praying for you.

    Take care and God bless,
    Renee

    ------------------
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 MRI of lower back just showed some mild DDD
    7/03 EEG, BAERS and MRI of brain all normal

    [This message has been edited by Renee016 (edited 07-29-2003).]

    [This message has been edited by Renee016 (edited 07-29-2003).]
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    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 EEG, BAERS and MRI of brain all normal
    7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

     
    Old 07-29-2003, 07:37 PM   #6
    krissy8317
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    Thanks for responding everyone It really means a lot to me. Sounds like you guys gave me a few ideas to think about that I havn't tried yet, but I just have a couple questions about some of the things suggested. CJay can you tell me exactly what an Endocrinologist specialize in? Secoundly can you give me any other examples of what autoimmune diseases are and how they effect you & what are bone age tests, they are not like bone density tests are they? I have never heard of them before. To Alice what happened to you when you were my age? I would love to hear somones story that I could relate to, If you would like to ever talk, I will be here just let me know. I Know seeing a counseler really helps, I have been in therapy on and of since I was 8 (my mother is a therapist so she of course made me go the minite I first had a problem).But once you find that right person that you can open up w/ and click with It's like your best friend. To Renee, you are such a sweetheart. Thank you for your kindness and supportive advice. You must know exactly how I am feeling right now SEARCHING desperatly. Nice to know I'm not alone. Those syptoms do also sound like me but I'm not sure I've had 3 lyme tests and they have all been pretty far apart. but maybe you never know! God there are so many different illnesses to research and information to look up, I feel like I'm really becoming a doctor myself. Well tanks to you all again you are wonderful people and not of us deserve to go through these painful and dibilitating illnesses.
    Kristin

     
    Old 07-30-2003, 03:25 PM   #7
    DDD
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    Krissy,
    You are not alone. There are many here who have unfortunately spent years exhausting every possibility for an answer to our health problems. Reading these posts make me so sad because so may of us are suffering so.

    I am dealing with Fibromyalgia, Chronic Fatigue, Epstein Barr and Thyroid problems. So many of these things overlap with similar symptoms. I have spent years going from one doctor to another including two weeks at Mayo. No answers.

    I finally found an MD who specializes in alternative medicine and he has helped me somewhat just using supplements to try to build up my system again. Meanwhile, I am depressed and angry that so many suffer, yet there are so few answers out there. Please know that you are not alone. There are way too many of us. It is a sad fact. Wishing you and others well.

     
    Old 07-30-2003, 08:39 PM   #8
    AliceBlueBelle
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    Krissy,

    What I had when I was 18 caused severe shortness of breath, weight loss, fluid retention, rapis heart beat, and probably a few other things I have forgotten. I had a left atrial myxoma. Not the translation. I had a benign tumor in my heart about the size of a small hen egg, which was on a stem. Each time my heart would beat the tumor would smack down on my heart valve killing red blood cells. It took quite a few doctors working together to figure out what was going on. Time was of the essence since they didn't want me to die on them. This was in 1967 Once I had the surgery, I was in great shape except for the scars. I just found out this past month that I more than likely picked up Hepatitis C from some of the blood they used for the heart lung machine. I didn't even know I had been depressed until I got back home and started reading some of the old entries in my diary. I was shocked!!
    Two to three years ago my daughter came down with a serious case of spinal meningitis. I did as much research as I could on that since I knew so little about it. The more I read, the more scared I got. Fortunately, it was caught early so she didn't suffer many of the long term side effects, but the spine area does remain somewhat swollen and must be careful if she should ever get sick with anything. A lot of people are left with severe headaches that never go away. Fortunately she missed that. The virus was so fast moving, she was probably within hours of dying. I sometimes tease her now that she is a member of the illness/accident of the month club.

    Did you know that the woman who wrote the book "Seabiscuit" has fibromyalgia, CFS? She did a lot of her work in bed. She is becoming such an inspiration to so many people.

    Alice

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    Old 09-08-2003, 07:13 PM   #9
    staind00
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    I told myself and basically knew i had CFS by doing all the research myself, books, computer everything, and i narrowed it down to CFS or Fibro.. This was in february, after my severe case of mono cleared up, and i realized something was wrong.. Well i was JUST diagnosed today with CFS.. ive known it for about 4 months.. you really need to kick the doctors in the ***.. dont ask for something.. look up teh tests you want done, and you tell them you want them, done, lol. You need to be really pushy with them! No matter how much of a b*tch they think you are! hahaha, well i wouldnt take it that far, lol.. But just maek sure you push them around a bit!
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    Old 09-18-2003, 10:18 AM   #10
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    Hey Krissy!

    I know how it is when several doctors, people we are supposed to be able to depend on to find out what's wrong, can't find a thing and end up making you feel crazy in the process. There have been many times where I have questioned my own ability to deal with pain properly. I told myself I wasn't being stong enough and that maybe everyone went through it and I wsa just being a complete wimp. I told myself I was staying up too late, I had to work harder and take it like a man! My husband was no help in this at all-he believes in mind over matter. Well, it works to a certain point, okay people? Then all the feelings I was holding in suddenly burst out, and I got worse than ever. I wasn't allowing myself to admit that I was feeling the pain, trying to ignore the fatigue and talking to no one about it because I didn't want to be perceived as weak. All that stress eventually just wore down my immune system and I couldn't take it anymore-and then I knew I wasn't crazy, and I wasn't making it up. Normal people don't have this kind of pain and fatigue everyday. In fact, I think what we have to deal with everyday makes us a lot stronger than other people. They think they know pain and what it is to be tired? I just laugh when I'm at work and I happen to drift off at my desk and a coworker says "I know exactly how you feel!". Right.

    I have started seeing a woman Dr. at a pain clinic ( a woman DR. is the best) and she gave me fentanyl patches to wear for my pain. I have never felt etter. I also got something tp keep me awake, wich has been so awesome. It is called Prvigil and it helps me stay awke. Please try to get a referral to a pain clinic. I thought my life was crap before this, and even though I know life will still be hard, I am beginning to see the light. Even if you don't have CFS, which it sounds like you do, you need to treat your symptoms to better your quality of life. I know what you mean about feeling like you're 90. It's not fair. We're in our 20's and it's supposed to be one of the most vibrant parts of our lives! (I'm 22) I feel as if I've been robbed.

    My symptoms are alot like yours. See a Doc, write down a list of your symptoms, and if he doesn't metion CFS, you mention it. Tell him you want tests done to rule everything else out (Lupus, Rheumatoid Arthritis, Thyroid problems-although they can be related, and FMS) If he's not open to your suggestions, get another Doc. I know it sounds like a long and frustrating process, and it is, but it's unfortunately the way it goes. You might want to ask around to see if anyone recommends a certain doc. Don't give up until you are satisfied and don't let any docs push you around and tell you it's all in your head. You have a real illness with real symptoms that need to be treated. Best wishes!


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