Don't know what to do

Discussion in 'Fibromyalgia Main Forum' started by kellbear, Feb 5, 2003.

  1. kellbear

    kellbear New Member

    I don't know where to begin. I am feeling like I am running out of options and people who will actually listen to me. I hope I can find some help here.

    I have had some extreme bouts with fatigue over the past few years. I noticed that these started after I had Mono in highschool. I never had any other symptoms up until last year.

    I was working very hard at the time and had little time for myself. I started getting extremely fatigued to the point I was almost lethargic late in the afternoon. It was almost like I was walking in a never ending fog and I could not concentrate. By the time I got home, I had no enegy left to do anything else except sleep. I was irritable, moody and had no stamina.

    I was in need of losing weight so I started weight watchers in April of last year. I lost 40 pounds and was feeling a lot better. I thought that eating healthier is what my body was needing.

    Then in July, everything went downhill. My husband wanted a divorce which totally blindsided me. He said that he couldnt tolerate us anymore. This threw me in a down spiral of extreme stress and anxiety. I have never been through stress like that before. I started smoking again after I had successfully quit for almost 3 years and started noticing the fatigue and ill feelings coming on with full force. I totally ignored my body because I was trying to do anything to please him to save my marriage. And it worked, we are doing much better, but at a big cost. I have not recovered from that stress and have noticed these strange problems creeping up everywhere.

    It started with a pain in my chest that shoots through to my back. It hurts when I move, swollow, breath, but it does go away sometimes. I had several chest x-rays that said nothing. My doctor at the time looked at me like I was nuts. Then the flu like symptoms started. I usually feel pretty well in the morning and early afternoon but by the time I am done with work I feel horrible. Totally drained. The fog came back. My work was suffering cause I couldnt concentrate. I was having short term memory problems. I wouldnt always have the flu symptoms, but when I did I would be in bed with the chills, aches, and a general sense of off balance.

    I went back to the doctor and she ran some blood tests and sent me to a doctor to check my esophogus and colon. Everything came back OK. She said I had excellent blood count so that possibility of lymphatic cancers was very low. I have had my thyroid tested, blood sugar tested, and a variety of other tests that have all came back ok. Then the neck pain started. It was on the right side by my larynix. It hurts to press and move my neck and at one point I had very generalized pain when I swollowed. I always felt like I had someones hand around my throat choking me and it is hard for me to wear turtle necks and anything that restricts my neck. I have had nose drainage and all kinds of allergy problems that have suddenly arose out of nowhere. I have never had allergies before.

    I was hitting the end of my rope. I remember one time when my husband was driving home from work that I started to cry and said that I was so mad because I was really trying to enjoy my marriage for once and it was hard for me to because I feel so bad. I am so tired of feeling bad all the time.

    The doctors have been so bad. My first PCP kept saying that I was just stressed and sometimes us females get worked up. I asked her if there was any other test to do on my chest because it still hurt and she looked at me like I had asked her to give up her new born and she said that there is a cat scan but considering my age (28) she didnt think it was necessary. I told her that I had insurance so she better write me an order. By the time I left her office, I was so mad and immediately found another doctor.

    Before I went to my new doctor, I went to the ER twice. I thought for sure they would find something. I had aches, chills, my throat hurt and my lymph nodes were swollen. My ankles and wrists even hurt somewhat and they found nothing and sent me home. I didnt even have a fever.

    My new doctor isnt promising either although she seems to be more aggressive. She did say that I may just be stressed or depressed. I told her that I find it amazing how you need to be almost dead for anyone to take you seriously and that I find it degrading that doctor's are so quick to blame everything on stress and depression. I told her that I was not stressed anymore and that I am depressed because I feel bad all the time. She ran tests for lupus, epstein bar, arthritis and more blood screens. Everything came back great. She scheduled me for a cat scan with contrast of the chest and neck. Called me to say that everything looked great.

    I asked her that I have been doing some research on my own and wondered if it was possible that I have CFS and she paused saying, "Well that is next to impossible to diagnose". She didnt even want to pursue it.

    I went to the ENT doctor last week who said I have some enlarged lymph nodes under my jaw and he gave me antibiotics for 2 weeks. If the antibiotics don't work, he will biopsy them but he said it is highly unlikely that it is anything serious since my blood work is so great. He did feel a lot of neck fullness but said that could be because of the glands.

    I have been off work for 6 weeks because of an ovary cyst removal. I have relaxed and lot and slept a LOT. The more I do during the day, the more fatigued I get. I had another bout with achiness a few days ago and I am dreading going back to work because that means all my energy will once again be spent there and I will have none at home.

    Physical excertion tires me so much. I have to force myself to excercize.

    I no longer smoke and am back on the weight watchers.

    I know you cant diagnose, but does anyone else with CFS have these symptoms? Am I nuts? I am getting so down and don't see where I will ever feel better again. How can I find a doctor who is more familiar with CFS who is on my health insurance plan.

    [This Message was Edited on 02/06/2003]
  2. Dara

    Dara New Member

    first of all I would like to welcome you to this message board. It's a great place to go for information and I know you'll be getting lots of responses. I do not have CFS but I do have FMS. There are a lot of your symptoms that sound just like mine did when the FMS kicked in full steam ahead. I had it for years off and on but then several years ago I had a lot going on in my personal life, plus working full time, the whole bit. I also had never had allergies and I have them constantly now. I am allergic to several anti-biotics, molds, and things I don't even know about. My fatigue was so bad that I would fall asleep at my desk at work or while sitting at a red light. I finally had to go on disability in Nov. of 2001. As far as doctors go, did you check out the "doctor referral" listing on this site? I hope you can find a really good doc that can help you. Also, I too had the feeling of choking and felt like I couldn't swallow, couldn't wear anything close to my neck. They had checked out my thyroid levels and they were normal but then did a ultra sound of my neck and found a growth on my thyroid, have they checked that out for you? Let me know how you're doing, and again, welcome to the board. This board and it's wonderful members have been a great blessing for me, I was so glad to have found it when I did.

  3. teach6

    teach6 New Member

    Your symptoms sound very similar to mine, including the onset. I was slowly going downhill and then I had the summer from hell that pretty much sealed the deal. I couldn't keep my eyes open when I was at school. I would find myself walking with them closed! I was putting my head down to rest whenever possible. Finally I left school one day to have some tests run and that was the end of my career!

    Your symptoms do sound very much like CFS, and while it is difficult to diagnose because it is a diagnosis of exclusion, your docs have already doen the excluding. A good CFS doc would probably give you the dx with the info you already have. I replied on your other post about finding a support grouop. They can also be a source of doctors.

    Good luck in finding the right doc. It took me years of hearing it was all anxiety and depression before I finally found the right doc and got the right dx.

    Please check the post to dlj2002. It has info about a doc in Cincinatti.


    [This Message was Edited on 02/06/2003]