Anyone working full time? Any thoughts on how to handle PCP?

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Aug 27, 2006.

  1. TerryS

    TerryS Member

    I'm on a two-week leave for my exhaustion. But I could tell my PCP was hesitant to even give me that. Says he'll reevaluate me after two weeks.

    My extremities hurt 24/7, my dizziness (which began a few months ago) is progressively getting worse and worse, and I feel like I've been run over by a truck most days!

    I work at home full time doing medical transcription, but it's been a real struggle for me lately with the fatigue, needing to take naps, brain fog, dizziness, etc. Housework, cooking, and laundry NEVER get done. My 67 year old mom comes over every other week and cleans and does laundry for me.

    I don't know how to approach this. I've rested all week, but I'm still very dizzy and have low energy. NO housework has been done, no laundry, no cooking. My hips and legs feel like they will fall off any minute!

    My lab work is abnormal (positive anti-DNA, chronic/recurrent epstein barr, and positive actin smooth muscle antibody). The ENT I saw for dizziness said he thought I have CFS. I am going to a rheumatologist next month (first available appointment).

    I suspect my PCP will want me to go back to work full time. Maybe he will agree to reduced hours for a while. I feel like he thinks I'm not really that ill because I've managed to work full time all these years. What he doesn't realize (even though I've mentioned before) is that it takes me from 8 am until 9 or 10 pm plus weekends to get my 40 hours done due to having to constantly stop and rest or nap.

    Can the medical community really expect me to continue working like this with no energy or time left to even take a shower???

    Any thoughts or ideas???

    Thanks,
    Terry
  2. GBHope

    GBHope New Member

    I can fully relate to your frustration. I too was a medical transcriptionist and had to quit working due to all the problems you are mentioning. Positive on and off RA, ANA, elevated sed rate, CRP, dizziness, pain, fatigue, quite elevated EBV titers, sore throats. I have had this for 10 years and tried to work starting in 2001 and got worse. If this is what is going on with you, you need to get your doctor to listen because you will go downhill. I also saw an ENT in the beginning because of the dizziness and he too felt I had CFS. I hope you get some help!!!

    GBHope
  3. TerryS

    TerryS Member

    But how do you justify that you can't sit for 8 hours a day and type??? Even though I feel horrible, I still have managed to get through it somehow...just can't manage to do anything else with my life. And my work production is much less than it used to be.

    Because of the fact that I have a "sitting" position and work from home, I feel like a prisoner!!!

    Terry
  4. bandwoman

    bandwoman New Member

    I am a full time teacher and have been working with FM for 16 years and probably more before DX. I am single and support myself so I pretty much had to figure things out for myself at first. Our of sheer terror at missing anymore sick days after having a neck surgery and then getting pneumonia shortly after returning to work I heard about even a tsp of sugar can supress your immune system for 4-6 hours. I actually heard this type of thing twice as I was home with pneumonia. On Thanksgiving Day in 2001 I decided that was going to be my last dessert. I have cut out sugar as much as humanly possible and in four days only I noticed my brain fog improving. I have not been diagnosed with CFS but fatigue is my biggest challenge in my job. I just bought the book Juicing for Life by Cherie Calbom and it talks about specific illnesses and what you can do to help. I also started juicing this last year. There is a whole section on CFS in this book. So, I guess what I am saying is to try to use your diet to help you. As far as the PCP that is a tough on especially if he is of the thought that it is all in your head. Do you have access to an alternative dr. I actually see both but my alt dr. does the most for me for the fatigue. I take a gazillion supplements but it does help. I do IV's every other week also and that helps a great deal. I sure will be thinking and praying for your situation. Hope to hear some good news soon.

    Nancy
  5. TerryS

    TerryS Member

    I was diagnosed with mitral valve prolapse and dysautonomia a few months ago. (By the way, my PCP doesn't believe I have MVP...I had the echocardiogram, tilt table, and treadmill records - with diagnosis - faxed to me this week so that I can take them in to him and show him).

    Anyhow, because of the MVP, I have cut out all sugar, all caffeine, and drink tons of water each day. I guess all of that helps my heart sputters and flutters to not occur so often, but it hasn't seemed to help the fatigue, extremity pain, or dizziness - all of which continues to worsen as the months go by.

    I'm at my wits end. I feel like I did during the second half of my illness with cytomegalovirus and rheumatic fever.

    I see a rheumatologist next month, so I'm hoping he'll be helpful. If my PCP doesn't get on board with this, I'll have to find another one. I'm going to appeal to him for reduced work hours for a while. I have STD benefits, so I don't want to just voluntarily go part time because I'll lose the benefits...but if he'll agree to keep me on reduced hours, I'll keep my full time status and the STD.

    I want to be careful not to lose my disability benefits at this point. I cannot afford to be out of work for years waiting for SSDI approval!!!

    Also, I've been on Zoloft for several years for depression...sometimes I wonder myself if it's all in my head and I'm just THAT DEPRESSED! But I don't really believe that.

    Terry
  6. GBHope

    GBHope New Member

    I'm no expert, but what you're describing is not all in your head. I agree that unless you can get your PCP on board, you may have to find another. I went through many doctors in the beginning and finally found the one I have now who has been my doctor for 10 years. He isn't perfect, but he believes me when I tell him how bad things are. He is very supportive about my disability. I have been on disability since December 1996. I agree that the sugar is a big problem. I have struggled with yeast after about a year into my illness. I have tried supplements and regular medicine as well. I too have had a positive tilt table study and take Toprol XL 12.5 mg for that now. In the beginning, I was so toxic and sick that I couldn't take it. Things I couldn't tolerate before I can now, but still struggle with the fatigue, pain, dizziness, yeast, etc., etc. As the other lady who posted said, there many different things that can help and sometimes the alternative docs are very helpful if you have the money for them. Changing my diet was a big help for sure and staying away from sugars and things that go immediately to sugars helped me a lot. I wish you the best.

    GBHope
  7. TerryS

    TerryS Member

    But I'm scared to because it supposedly lowers your blood pressure and mine's normally only about 90/60. The heart flutters aren't too bad except for two extreme episodes that I've had in the past year, so I thought I could just do without the Toprol.

    Do you have any thoughts about the Toprol???

    Thanks,
    Terry
  8. kjfms

    kjfms Member

    I am a Medical Transcriptionist at the moment too and have a medical coding background.

    The medical profession is one of the hardest to work in my opinion because they expect us to be at all times unless we have our death certificate in hand...LOL

    You might try being a little more firm with your PCP in explaining how bad the dizziness is unfortuantely physicians do not understand transcription is more than just typing.

    Tell your PCP that a transcriptionist has to be an expert in medical terminology as well.

    Explain that if you are dizzy and confused you can not do you your job properly.

    Ask him how he would like it if one of his transcriptionists were to make mistakes with his dictation which is a legal document due to the fact the her PCP did not take her illness seriously.

    I hope you find a solution and feel better soon.

    Take care of you,

    Karen
  9. GBHope

    GBHope New Member

    I have found the Toprol to be very helpful and like nanjee, mornings are the worst. I get up very slowly and sit at the edge of the bed for a minute, then stand up. I started off on 25 mg of Toprol, but that was to much and now the 12.5 mg is perfect. It was hard letting my body adjust to it, but I just kept with it and it finally kicked in. I have always had racing heart, adrenaline rushes, etc., and that is much better now. When I had my first tilt table when I was really, really sick, they wanted me to take like 50 mg and that just didn't agree with me at the time, but this is working great and I will stay on it permanently. I happened upon the medication combination I'm on right now by accident when I had a hysterectomy and developed temporary hyperthyroidism. The Toprol was for the racing heart you get with hyperthyroidism and also she gave me lorazepam which I take at night and that has been a Godsend too. I'm not perfect, but these meds have helped some. I still have dizziness everyday though. Just not as bad and the fatigue and pain are still there too. For those, I take naproxen, Tylenol, and Skelaxin as needed. I can't take the naproxen all the time, as it would tear up my stomach. If I didn't say so before, I was diagnosed with MVP when I was pregnant with my son in 1989. I really hope this helps. Like everyone else said, this is NOT in your head!!!!

    GBHope
  10. TerryS

    TerryS Member

    Maybe I'll give the Toprol a try.

    I have been to the Mitral Valve Prolapse Center in Birmingham. They are wonderful people and are the ones that diagnosed me with MVP and dysautonomnia. Just a long drive for me to go back (4 hours one way).

    As far as the medical transcription, I do take my job very seriously and the last thing I want to do is make a mistake in a patient's chart. Ours is a gynecologic oncology practice, so many of our patients are extremely ill. From time to time lately, I've ran across errors (mostly omitted words) in some of the charts I've transcribed, YIKES!!!

    Like I said, I'm going to see about doing some reduced work hours for a while and see how that works out. After I've been up a couple of hours and my head has cleared, I can usually work for 3 to 4 hours before I have to stop and take a nap or rest. Fatigue wise, it gets harder to work after that. Afternoons and early evenings really stink for me. I sometimes get a second wind in the late evenings.

    You guys have been so very, very helpful. Thanks for everything!

    Terry
  11. TerryS

    TerryS Member

    But I am aware that I need more salt. I'm adding more to my food...doesn't sound like a very refreshing way to drink my water, though! It's hard enough to try to drink at least 1/2 gallon a day.

    I do love the MVP Center of Birmingham. It was more than worth the drive. My teenage daughter also has MVP and we took a joint trip there...were seen on the same day.

    Wish I could find a CFIDS or FM center like that somewhere in the southeast.

    Terry
  12. kirschbaum26

    kirschbaum26 New Member

    Dear Terry:

    I agree with you...if your PCP does not agree to put you on 50% time for at least 1 month or so, you should find a new doctor. Do you have a dx of FMS? Or CFS? Or are you having weakness and dizziness that has not yet been diagnosed.

    You do not mention if this is a particularly good doctor, or if he believes in and treats FMS/CFIDS? Do you see your PCP soon? What about your Rheumatologist? Do you have a dx of some kind of Arthritis? All this could be causing your fatigue and weakness, not sure about the diziness, if that is a side affect of the MVP.

    I hope that you can work it out with your current PCP, especially if you trust him.

    Good luck to you.

    Ingrid
  13. TerryS

    TerryS Member

    I have a history of rheumatic fever, reactive arthritis, cytomegalovirus, bilateral thyroid nodules, and now MVP/MVPS - all with definite diagnoses.

    My dizziness and fatigue were horrible. My PCP was just kind of shrugging his shoulders. He did give me ONE B-12 shot, but that was all and it didn't seem to help (my B-12 level is at the very bottom of normal range...somewhere around 200).

    Anyhow, went to an ENT who did thyroid surgery on my mom. Thought maybe it was my thyroid making me exhausted. He's a WONDERFUL doctor who was very concerned. He felt confident it wasn't my thyroid, and he didn't find any ENT reason for my dizziness.

    He ordered some blood work. It came back positive recurence/chronic epstein barr (marker for cytomegalovirus and mono), plus positive Anti-ssDNA, and positive Actin smooth muscle antibody. He said looked to him that I have CFS and that is why I'm exhausted.

    He is referring me to a rheumatologist, but my appointment isn't until 9/20. In the meantime, went to my PCP to try to get something to help me sleep from the pain in my extremities. He was going to give me Lunesta, but forgot to write the script for it. But he did give me two weeks' leave.

    I think my PCP might get on board if I can get a positive diagnosis from somewhere else. Hopefully, the rheumatologist will be helpful.

    Terry
  14. kirschbaum26

    kirschbaum26 New Member

    Dear Terry:

    You might want to ask your new rheumatologist about possible dx of FMS. Especially if you are having pain. Are your joints affected? Not sure what reactive arthritis is...but I am guessing it is a form of arthritis. I have RA, and it is kicking my butt these days. I have managed to work full time plus for the past 10+ years with RA controlled, FMS, DDD, asthma, etc. Now in a bad RA flare that is making it tough to much of anything with my hands. I used to type about 110 wpm, but now have slowed way down to about 60 or so. Finger and wrist joints are becoming more and more deformed and stiff and for some reason they are not responding to my commands.

    I am on HUMIRA for RA, but it keeps on giving me bad respiratory problems. I have had bronchitis all summer and one bad bout of pneumonia. Doctor who took the x-rays said I had scaring in my lungs, and he wanted to have a radiologist check out the x-ray to be sure that it is nothing new. How comforting is that?

    If you can wait to see your rheumatologist then have him/her put you on 50% time. Seriously, getting disability from a specialist somehow makes it more acceptable to some companies as well as disability companies.

    Glad your ENT ruled out anything that would be causing your dizziness. Have you had your blood pressure taken? Is it low? You said you can work 3-4 hours before having to stop from fatigue. That is how many hours you should be working...that is what your body is telling you, and you really should listen...or it will decide that you cannot do anything...and then what would you do?

    Good luck, and keep us informed.

    Ingrid
  15. TerryS

    TerryS Member

    I don't know what an MMA test is, and I don't think that was part of what he ordered last. He did say that NOW we will start looking for the out of the ordinary. I remember he said he wanted to look at my vitamin D, and there were several other things he mentioned, but I don't remember now.

    He stuck his head in at the end and said he was also ordering an echocardiogram to look at how hard my heart is pumping. All this, but no mention of CFS or FM. Don't know what he thinks of it, but I didn't even bring it up because I knew I going to see a rheumatologist, which he agreed was a good idea.

    As far as possibly having FM, my ex-mother-in-law sent me an article way back in the 80s about it because she thought I might have it. BUT, what I don't seem to have is the tender pressure points...or at least nothing seems tender to me.

    It's funny you mention pernicious anemia, Nancy, because my maternal grandfather had that. I'll have to research that again and see what it is. And what do you mean by "bouncing off the walls"?

    My blood pressure usually runs pretty low, around 90/60. This is why I haven't taken the Toprol that my PCP and the MVP doc both want me to take. I understand that Toprol lowers the blood pressure, and I really don't think I could handle a lower blood pressure - talk about getting dizzy!!!

    As far as the reactive arthritis goes, it was a really weird episode that lasted a few months with tender swellings that came and went all over my body (in the soft tissue and joints). It concluded with my left knee swelling up about four times its size. They pulled green fluid out of it and thought I had an infection. An orthopedic surgeon did surgery on me that very day. Turned out NOT to be an infection. He diagnosed me with "reactive arthritis" which was something of a new thing to the medical community back then (90s). He put me on minocycline and it totally resolved. So far, it has not came back and hopefully never will. Don't know what my body was "reacting" to.

    I've had so many weird and unusual diseases/illnesses over my life...sometimes I feel like the biggest freak! It sure does help to hear from people like yourselves.

    My husband doesn't say much negative to me, but I can tell that he's not pleased. He is the world's biggest workaholic and works from the time he gets up at 5:00 until he goes to bed at 10:00. He's in corporate senior management, plus owns 10 rental homes that he maintains himself! I managed to get my real estate license last year in order to help him list any properties that he wants to flip (keep the money in the family, you know). I wanted to go part-time with the transcription at that time in order to grow my real estate business, but his response was that I could only do that once I was making as much money in real estate as I do as a transcriptionist -- in other words, work full time at both jobs!!! I told him to FORGET IT!!! (He's a lunatic!)

    THANKS TO ALL OF YOU FOR THE SUPPORT, ENCOURAGEMENT, AND SUGGESTIONS! I get another B-12 shot tomorrow afternoon and see my PCP again this Friday. I'll post a followup Friday evening and let everyone know what happened. Who knows, maybe I'll be back in the swing of things by then!

    TERRY
  16. bpmwriter

    bpmwriter New Member


    can you explain how rough mornings are related to MVPS? i have dizziness problems as well as a tough time in the mornings. probably just the usual CFS but your comment made me wonder. i also have spells where my heartbeat becomes very noticeable, sometimes in my chest, other times in my head or ears.

    does MVPS show up on your basic EKG or does it require more sophisticted testing?

    eddie
  17. TerryS

    TerryS Member

    Your noticeable heartbeat, I would think, is because of your MVP. That would make sense. The reason I sought help for it was because I had two extended episodes that lasted for several days of my heart fluttering, sputtering, and flip flopping day in and day out. I was pretty scary. I don't know how long I've had this problem. I would say that it was probably due to my having rheumatic fever years ago, BUT my father also has it, as does my teen daughter.

    My daughter, Briana, was having a lot of problems with dizziness and sudden extreme fatigue last year. She had a heart murmur that was noticeable when she was around age 2, and also had many fainting spells at that time. I had our PCP listen to her heart and he heard nothing. In the meantime, I had the ER visit and the ER physician heard my click and said it was probably MVP. Then I had our GYN listen to her heart and she heard the click and said it sounded like MVP. I took Briana with me to Birmingham to the MVP Center. They diagnosed both of us with MVP/MVPS.

    Mitral valve prolapse itself will show up on an echocardiogram where they can actually see the valve.

    Mitral valve prolapse syndrome (MVPS, aka dysautonomia) does not. They base the diagnosis on your symptoms plus tilt test and treadmill test. It's thought that MVP does not cause the MVPS; rather, they're both caused by a "glitch" in the nervous system.

    Mornings...well, they stink. As far as my dizziness, it's present day and night. BUT my energy level is very, very low first thing in the morning. After I've been up and around for a couple of hours, I usually have a decent amount of energy, and this is when I must do my work. After a few hours, I'm exhausted and have to lie down and often have to nap.

    After awaking from my nap, I have to go through the low energy level process again. I tend to start feeling better again later, maybe around 7 pm or so, and feel pretty decent until bed time.

    Of course, right now, my energy is totally zapped and I feel a lot like I did when I was recovering from my rheumatic fever or the cytomegalovirus.

    I have NO IDEA if the MVP/MVPS is causing my fatigue and dizziness in general, or is it because of the chronic epstein barr (which is why the ENT thinks I have CFS). Probably both!!!

    Do you test positive for epstein barr, or have they ever checked it? Apparently a lot of CFS/FM patients do.

    Terry
  18. TerryS

    TerryS Member

    Sorry, EDDIE, I thought your post was from Nancy...sorry Nancy!!!

    In my defense, I am real brain issues this morning...CAN'T I GET ANYTHING RIGHT???

    Terry
  19. TerryS

    TerryS Member

    Dang, I just want to know what's going on with me!!! I'm so tired of feeling like crap...is it CFS? Is is a relapse of CMV? Am I just THAT depressed that I can't cope with housekeeping any more???

    Terry
  20. TerryS

    TerryS Member

    To come up with a plan -- you'd think I was responsible for world peace or something, because it seems overwhelming right now.

    Tell you what, PLAN #1: Take a shower tomorrow and wash my hair!!! (That's a great idea...hope I follow through!)

    Thanks,
    TERRY