newly diagnosed w/CFS

Discussion in 'Fibromyalgia Main Forum' started by Dogtired, Jun 25, 2003.

  1. Dogtired

    Dogtired New Member

    This is a great site! I am feeling isolated with this illness. I am still working part-time and particularly interested in how it is for others at their work, are some people supportive and others skeptical of your illness? Any tips appreciated.
  2. gail3942

    gail3942 New Member

    I was diagnosed 1 1/2 yrs. ago. My Dr. told me I needed to quit. My job was very stressful which aggravated everything. It really depends on what you do and what stresses. I have been fighting with SSD since 12/01 and have been tuned down 2x. Next step is a hearing. I found my employer to be very sympathic, and I could not work the forced overtime. You really just have to trust the messages your body gives you and go from there.

    gail
  3. catgal

    catgal New Member

    Hello Dogtired~~I'm glad you decided to join the Board. You will meet alot of kind, compassionate, knowledgeable people here and receive tremendous support.

    Unfortunately, it is difficult for people who do not have CFS to understand its mutiple symptoms, and the affects they have on us.

    I am 54, have had FM/CFS since my teens, and picked up other ailments through the years.

    I worked full time till 1993, and then went to work part-time (3 days a week) because my body could no longer hold up to the 40+ hours a week grind. I have worked at the same part time job now for 10 years, and this year I am finding myself worn out by mid-afternoon of the second day. I am really struggling to hang onto my job and keep working.

    I would strongly suggested you research, read, learn, and educate yourself as much as possible about CFS and all its potential symptoms and educate your friends & family so they will have a better understanding of what you are going through. Plus, you can learn alot first-hand from this site what people do to help themselves. But, you will notice that everybody has their own unique ways of dealing with CFS, and what works for one may not work for another. So, it is a process of trial & error to find out what works best for you.

    There is a vitamin you can buy on this website called NADH (Enada) that completely did away with my CFS until I had to stop taking it due to other medical problems. But, it literally worked a Miracle on my CFS.

    In order to really help you, we need to know what specific problems/symptoms you are experiencing with your CFS such as poor sleep, perpetual tiredness, complete exhaustion, blurred vision, waking up feeling like a herd of elephants ran over you, achiness, pain.....what are you experiencing?

    However, regardless of what specific symptoms you may be experiencing there is one universal aide that all of us with CFS require--and that is plenty of REST and getting quality sleep. Some other tips might be simplifying your lifestyle, recognizing and adjusting to your limitations, learning to say "No" when you are too tired to do favors or participate in activities with family & friends, stopping before you become too tired, resting the day before a major activity and the day after, learning how to truly relax without a hundred things racing through your brain, taking soothing body soaks in epsom salts/baking soda/& ecucalyptus oil (that's what I use--others have their own recipe), changing your eating habits--eating healthier and cutting back on sugars & caffeine, doing some form of mild exercise regularly, and basically treating each symptom that you have individually.

    Others will be along with more ideas, however, it would help us to help you if we knew what specific symptoms of CFS you are dealing with.

    Again, Welcome, and we hope you will "make yourself at home" and feel free to ask questions or respond to posts. Blessings, Carol
  4. Eve612

    Eve612 New Member

    Hi,

    I agree, this is a great sight, & full of supportive & knowledgeable people. I work at home, but the people that I encounter, if you mention that you have CFS, they ask "What is that", & then you try to explain, & then you get this look...it's amazing to me as many people that are afflicted with it, that so many never heard of it.

    Eve
  5. teach6

    teach6 New Member

    I have had gradual onset CFS and FM for 20 years. During most of that time I was working. At first it was only part-time, so the symptoms weren't quite as hard to deal with, although I was raising three kids with a husband who traveled a lot.

    I did notice an increase in fatigue when I began working full-time, but again assumed it was from working and trying to keep up with my kids' schedules. When my husband and I separated, and ultimately divorced, my symptoms really flared. Unfortunately only my therapist believed that it wasn't all emotional. So I wasn't dx'd or treated for anything except anxiety and depression until Dec. 2001.

    Teaching is a very demanding and stressful job, especially for the first quarter of the year and at the end of the year. During the last few years I worked I was frequently told that "We all feel like that at this time of year." Towards the end I knew that was just not possible.

    Other people had energy to go and exercise after school. I would go home and fall asleep on the sofa reading the newspaper every afternoon. Even after I was diagnosed they did not really "get it." They just thought I was a little tired. A few came to visit me and left saying they couldn't believe how bad I was and they went to tell my principal that I neeeded a long term substitute.

    She would call, or ask the assistant to do it and ask when I was coming back. I didn't have a dx, so I had no idea when it would be and that is what I would say. So they mistook my answer to mean I would be back soon, when I really meant it would probably be a very long time.

    Right now I have been trying to get disability retirement for over a year. The criteria for this are that I am unable to perform the job for which I was hired. With both CFS and FM along with NMH that makes it difficult to walk or stand, this is a no brainer. At least it should be.

    But even the medical review board for the state of Virginia has no clue. The last time I appealed they responded in their denial that they had sent my new information to an independent psychiatrist for review. DUH! My problem is not in my head. I have plenty of objective medical evidence that shows that I am physically ill, but they are clueless.

    So, if doctors don't get it, don't expect your coworkers to understand. The sad part is they really don't want to know about it either. You are better off talking about your health problems with only close friends. Others will just tune you out and eventually leave you out of their circle of friends.

    Barbara
  6. toots2

    toots2 New Member

    Barbara, I can only say I hope your hearing goes well and that you get the disability benefits you definitely deserve. Would you mind telling me about NMH? What is it? Thanks. Toots
  7. Shirl

    Shirl New Member

    Glad you found our little world here. As you have already been told, there are some terrific people, as well as some well informed members here who are more than willing to help you in anyway they can.

    Just stopped to welcome both of you............

    Shalom, Shirl
  8. Dogtired

    Dogtired New Member

    Hi!
    It was so encouraging to get your replies, many thanks!
    It's 3am and I can't sleep (what a shocker), so I wanted to check in. I am going to look into the supplements that were mentioned.
    Otherwise, I am struggling to find a doctor to oversee my treatment. I called TEN rheumatologists in my network within 50 miles yesterday and 1 will see me in August! Several told me flat out that they don't see CFS patients. As one receptionist with great bedside manner put it, "We can't take any more fibro/CFS patients because they don't get better and take up all the appointments". Gotta love our health care system.
    The rheumy I was seeing who is an hours drive away and who specializes in fibro/cfs (!) got weird on me and started venting about his frustrations about treating fibro/cfs. He was very unprofessional/abusive about my inability to attend his group therapy sessions because of my work schedule (i.e. "I bought the most expensive, comfortable chairs I could buy, and NO ONE is sitting in them!".."you people are all addicts", etc.) I ended up leaving in tears. Since that time I have heard other stories about his abusiveness...and he is the best game in town.
    Has anyone else experienced this?
    Thanks for being 'out there'.
    -Kristi :)
    [This Message was Edited on 06/27/2003]
  9. tulip922s

    tulip922s New Member

    Hi Kristi,

    And welcome to the board....the Yikes is for the way you have treated by rheumys. There is a good doctor list on this site you may want to check out or post your city and state and ask if anyone knows of a good doc in your area.

    I have had CFS for 2 years and my situation is a little different than yours. I am bedridden 16 - 20 hours a day, so working is out for me. Good to hear that you can at least get out there parttime. It can sure be a lonely illness.

    Again, welcome and keeps us posted on how you are doing. Tulip
  10. Mikie

    Mikie Moderator

    Thank God, my rheumy left our plan and I have replaced him with a very knowledgeable physiatrist (doctor of physical medicine, not a shrink) as my specialist. Rheumies are not the best docs for treating CFIDS. See if you can find another type of doc in your plan who does specialize in CFIDS, perhaps an internist whose specialty is infectious diseases (people with CFIDS almost always have chronic infections). If you have a lot of pain, try a pain specialist. We needn't confine ourselves to one specialist. I have both FMS and CFIDS and believe me, I consider my CFIDS to be the more difficult of the two to treat. I has also been the more debilitating.

    Good luck to you.

    Love, Mikie
  11. Dogtired

    Dogtired New Member

    Hi Tulip and Mikie,
    Thanks for your replies. Tulip, so sorry to hear how badly CFS has affected you...what kind of treatments are you using? And, I do feel fortunate that I can still do some of what I used to. It must be quite lonely, my heart goes out to you.
    Mikie: thanks for the ideas on expanding the search for a doc. I got so desperate, I just started calling general practitioners (women this time), so I do have 2 appointments scheduled within the next 2 weeks. I guess I will just keep getting as much input as I can til I find the right one.
    It is so overwhelming to try to decide the right course of action, as there are so many ways to try to treat this. With the old weird rheumy/osteopath I was taking T3 daily and giving myself injections of magnesium and B12 weekly. His protocol was very heavy on psychological factors such as shame/inner critic and how this leads to stress and CFS. It was like a college course: numerous tapes, books, etc. NOT what I (we) have the energy for! Has anyone had any luck with this type of treatment? I'm very curious.
    THANKS again for caring enough to write. Our energy is like limited sand in the hour glass - so I appreciate you spending a little "sand" on me! :)
    -Kristi
  12. Jen F

    Jen F New Member

    AH....I'm sorry, but after dealing with this illness for over 6 years and losing a lot of relationsips, your question makes me laugh in a bitter and sad way.

    Thank God SOME people understand. Like my homemaker. [Others would come to my door, see a young person --I look about 10 years younger than I am -- and wonder where the sick person is they have come to help out. I look okay why do I need their help? What a lazy young scam artist I must be...were the thoughts in their eyes, or for some just plain confusion.]

    And there is this board. What another god-send. Thank you Pro Health for this site!!!

    I think you will find a lot of helpful info here and it is so nice to connect with people who understand.

    I found a CFS support group was a wonderful addition to my life with this illness.

    I still don't know what to say/not to say to new people I meet about my health. Especially men. I am single, slim and from their interest, I would say attractive. but, the disappointment in their face when i tell them I'm sick and/or have these problems... Or they just don't get it and think i can still date like other people my age. They don't realize that there are many things I can't do cause of fatigue, and I always have to consider how I am going to get the food I need since I don't eat wheat [well, try not to] or much sugar or M.S.G., etc. so dining out can be problematic. Blah blah blah, I could go on and on but I am getting a little off topic, aren't I?

    I would be careful about your work if I were you. They may try to fire you because you are sick. it's not legal in Canada but happens all the time and would have to be fought under the Persons with Disability Charter of rights [iirc?]. It's a good idea to document well your symptoms and your situation, have a really good GP and/or specialist. aND really consider if you need time off.

    I pushed myself to work too long and it negatively impacted my health. I should have applied for dis through my work. but, hindsight is 20/20. Now I am on social assistance and the 3 years of applying then fighting for benefits and the stress of having very little money did not help me improve my health. I was able to work part time previously but then declined to where I am now- not even able to keep up with housework and cooking.

    But, knowing how to balance keeping your job vs fighting for your rights or knowing when to stop working is a very tricky area, fraught with important consequences, so only you can know what you need to do.

    So sorry to hear about the rheumy's awful treatment of you. Maybe he's sell me one of those nice chairs for cheap. I could use a good one for sitting at my computer. Cause sounds like he shouldn't have many patients sitting in them anyways if he's going to be abusive on a regular basis! That's a problem we face with some people who are in a position of power-- we're too tired to fight adequately for what we need.

    Anyhow, this post is sounding alarmingly negative and I didn't mean that.

    There are a lot of people who have improved their health and functioning, so there's a lot of hope.

    Welcome!