Can I get your advice / thoughts?

Discussion in 'Fibromyalgia Main Forum' started by kellbear, Apr 17, 2003.

  1. kellbear

    kellbear New Member

    Here is the list of notes I have for my first Rheumy appt. Do they sound OK and sound clear?

    Kelley R. Newman

    I have felt bad for so long that I actually forget what it feels like to feel consistently good. Which scares me. I can have a few days where I have more energy and less of my other symptoms, and I actually think that maybe I am coming out of whatever is making me ill, only to be even more sick the next day. This has caused much frustration because my symptoms come and go daily, but never completely.

    Before I became ill I was having some strange bouts with fatigue that would last 3-6 months. I have had these bouts off and on for about 4 years. I always shrugged it off as stress or hormones. It has progressively gotten worse in the last 1 ½ years to the point that I have very little of my pre-illness functionality left.

    My whole life has been affected by whatever is going on. My job and personal life is suffering. I consider it a “good” day if I don’t struggle to get out of bed and get dressed. I am frequently late or absent, and I have had to give up almost all of my personal life activities. I usually get home from work around 6:00, eat, and go straight to bed. It is a rare evening that I am up to 9:00 P.M. with my husband. My husband and I have also decided not to have children for now because my health has been so unpredictable.

    I try to get well. I watch what I eat and try to exercise. Most times, exercise sets me back due to the fatigue. I can take two steps forward towards some healing, only to take 5 steps back if I over-do it just a little.

    Before I got sick I was happy and healthy. I love my job and it is frustrating to me that I cannot do things the way that I vision myself doing them. My body simply will not allow me to be the person that I was. I was active and working a lot and enjoying my life. Now I struggle just to hold onto my career by a thread.

    I do not have a previous history of mental illness. I believe that I am depressed ONLY because I feel so bad. It is a symptom and not a cause of my illness.

    Below is a list of symptoms. I find it easier for me to keep a diary of my health so that I can show it to doctors. I have a tendency to forget things as a result of this illness as well.

    1. FATIGUE – I have had “suspicious” fatigue for 3-4 years. It has gotten so bad over the last 1-½ years that all I want to do is sleep. My sleep is rarely refreshed. I have a hard time waking in the morning, and I frequently fall asleep.
    2. SLEEP PROBLEMS – When I sleep at night, sometimes I wake up frequently. Other times, I sleep all night but my husband says that I move around a lot. I have very restless sleep
    3. BRAIN FOG - This is horrible and it goes along with the fatigue. The fatigue is so severe that it causes me to feel like I am continuously walking in a fog. I don’t even feel like I am mentally connecting to anything. I have had 2 car accidents as a result of this Brain Fog Fatigue and becoming disorientated from it.
    4. COGNITIVE / DISORIENTATION - This is a very frustrating problem. My mental state is only about half of what it used to be. The only way I can describe it is that I feel retarded all the time. I forget what I am saying, or where I am going. I misspell things and have a hard time following directions. At first it was thought I had ADD but I have only had these symptoms since getting ill. I have very poor short-term memory. This symptom has caused great problems at my work. I no longer can create reports that make sense. When I am disorientated, I frequently forget where I am going or run into walls or doors. It is hard for me to judge how far an object is from me.
    5. BALANCE - My balance problems have come and gone depending on if I am running a fever or not. I frequently have Vertigo at work. Where I get dizzy. I have fallen a few times because it is hard for me to balance.
    6. FAINTING - I have fainted 25 times in the last 8 months.
    7. HEART PALPATATIONS – I frequently have heart palpitations, which I guess may be MVP. It is worse if I am a very fatigued state
    8. Tender or Swollen Lymph Nodes – The lymph nodes in my neck and armpits become tender or swollen. If they are not swollen, I can still feel them because they hurt.
    9. NUMBNESS – TINGELING- I frequently have a numbness or prickly sensation in my hands feet and upper chest. It goes up onto my face sometimes and it feels hot.
    10. MUSCLE STIFFNESS / ACHES - My muscles ALWAYS ache. My neck and shoulder muscles are frequently stiff and sore. The front of my neck is always sore and if I press on it hurts up into my ears. Always feels like there is an infection in there. Almost all my muscles in my body are sore to some extent, even my tongue. My eye sockets always hurt like I am running a fever. Sometimes my temp is low but a lot it is low-grade fever.
    11. JOINT ACHE - My knees, Ankles, Wrists, Knuckles, Elbows, Shoulders, and back always feel like they are burning or sore. Sometimes it moves around and not everything hurt at the same time all the time. It is very unpredictable.
    12. CHEST PAIN – I have had this weird chest pain in the exact same spot for over a year. It hurts when I swallow, breath, move or lift my right arm. I have had CAT SCAN and X Rays and it shows nothing. I was told that there is a joint in there so I wonder if it is just another joint pain.
    13. EAR PAIN – I always feel like I have an ear infection although nothing other than yeast has been found
    14. EXTREME DRY MOUTH AND EYES – This can be very bothersome. My mouth constantly feels like someone put a blowtorch in there. My tongue hurts and my eyes get frequently dry like there are grains in them. My skin is dry and flaky
    15. NIGHT SWEATS – On nights when I run a fever, I always have night sweats.
    16. MENSTRAL CYCLE IRREGULARITIES – For the last 1-½ years I have had irregular cycle, more bleeding and horrible cramps.
    17. BLURRED VISION – I notice this more when I am having my Brain Fog and disorientation. When I am in a fog, it seems as though I am looking through milky glass
    18. FLU LIKE SYMPTOMS - This is horrible. Most days I feel like I have the flu or am coming down with the flu but I never quite get there. I ache and run fever and the fatigue is there.
    19. COLDS / ALLERGIES – I always feel like I am coming down with a cold. My nose runs and feels like my allergies are acting up. I have never had allergy problems prior to the last 1-½ years. Now I seem to be sensitive to many things.
    20. SENSATIVITIES - I notice that I am more sensitive to noise, lights, and smells. I have had to have some of the bulbs taken out in my office because they bother me so much. At home, we rarely keep the lights on because it bothers me. Sounds make me jump and I really don’t like to be in the sunlight too long.
    21. SKIN SENSATIONS – My skin feels weird. Almost like it is crawling. Sometimes I can’t stand wearing certain clothes because it drives my skin crazy. I have skin pain sometimes. My skin actually hurts
    22. SORE THROAT – My throat always hurts
    23. MIGRAINES - I have never had a real headache problem up until a year ago. Now I frequently get headaches or migraines.
    24. IBS – I have to watch everything I eat. I have diarrhea easier and IBS problems
    25. Depression – I hate to mention this one. In the past when I see a doctor and mention depression, they think that the depression is what causes all the rest of the problems. I am only depressed because I feel bad all the time

    In conclusion, my doctor has sent over my lab results. I have had a LOT of tests that have all come out normal; although I feel quite horrible. 3 of my doctors have suggested that it could be CFIDS or another problem like that.
  2. marta

    marta New Member

    JUST kidding, Kelley. But your symptoms sure sound like mine and I have CFS.

    Now to the matter at hand. I'm not sure how you're planning to present this list to the doctor. If you're going to use it yourself as a reminder, fine. If you plan to hand it to him/her to read, I'd be more objective, i.e. Fatigue, unrefreshed sleep, usually tired. Joint pain. Difficulty sleeping, awake unrefreshed. Do you see what I mean? Just the facts, mam. No elaboration. We can sound a bit neurotic when we elaborate. Let the doctor ask you questions.

    That, of course, is just my suggestion and I have no good doctor to be able to report success so take it for what it's worth.

    Good luck to you.

  3. pam_d

    pam_d New Member

    Just a suggestion......if there is any way you can, try to edit this document to one, concise, easy-to-read page! You are very well-spoken and describe things well, but (of course, this very much depends on the doctor) MOST doctors will not want to read through such a lengthy document due to time constraints----but I have used a one-page document (briefly describing my symptoms, prioritized from worst to least bothersome & tests that have been already run in the past) myself at my last few appointments, and find that most doctors are willing to read that, and make sure that that document is prominent in your file. Just something to consider since doctors give us such a small window of time, and while you want to be thorough & not leave anything out, you also want to balance that against giving the doctor something he actually WILL read & not disregard.

    Good luck & hope your visit goes well!

  4. npack

    npack New Member

    Hi, I am new to the board, but you could have been describing me in your post. It sounds exactly like what I'm feeling, right down to the flu-like symptoms, but you don't actually get the flu. That's the way I describe it to everyone. I never get sick with a cold or flu it just feels like one is coming on and it never does.
    The only thing I don't have that you mentioned is allergies.
    Right now my throat is sore and has been for about a week.
    I wish this thing would just go away.
    I hope you don't mind me asking a personal question, but how old are you? I am 31 and feel like I'm 80.
    I am not overweight at all, so it has nothing to do with that. I'm 5'5 128lbs. Anyway, I just wanted you to know that you're not alone and if you want to e-mail me I'm at

  5. pegasis

    pegasis New Member

    If you have seen this doctor before, you should know weather or not he/she will read it all. Otherwise, shorten it up. I have fibromyalgia. They said that they think I have cfs but, never told me anything about it, ran anymore tests, or anything else. I feel like I have been dropped like a hot potatoe. Have alot of other medical problems so once they are taken care of, will go back. Just remember to keep up on them and don't let them blow you off. All the symptoms that you have are identical to mine . I know that there is help out there for them. You just need to be presistant with your doc about it. Biggest hugs and will keep you in my prayers!! Pegasis