need an opinion on my e-mail letter to my friends and family-help

Discussion in 'Fibromyalgia Main Forum' started by jane32, Nov 22, 2005.

  1. jane32

    jane32 New Member

    I feel the need now that I am finally diagnosed to just get the word out about what I have been going through and to try to explain it. So many people were so skeptical that I just want to write something and be done with it. I think it would help my recovery. It is long but please offer your opinions. It is a work in progress....and so many of them have no clue what CFS is.

    Finally a diagnosis
    So as most of you know, I went to 22 doctors that told me there is nothing wrong. I heard everything from you are depressed, (I am a therapist and I never knew depression to cause fevers!) to vegetarians always get sick, to 101 could be your normal body temperature. I also had various specialists tell me that I could have a rare form of cancer, multiple sclerosis (MS), or some other illness that can be seen and treatable before doing a series of CT scans and MRI’s. When their tests came back negative, once again I was told to just rest or go back to work. They seemed to think exercise would work, but when I did do more work, such as working a wedding all day, or running errands, I would just crash – unable to even drive home without resting. Their language and negative comments made me feel like I was a person making this up – yeah, like I want to feel tired all day and not be able to function like a normal person! I was left to think that there is nothing wrong with me, which means there is no hope at the end of the tunnel. I am not the type of person that wants to wait around to see if I will get better. I needed to take matters in my hands and become my own doctor, so I continued searching for one that would actually listen to me.

    Luckily after 9 months of feeling horrible and much research, I met with my final doctors who were a rheumatologist and a cardiologist. Both diagnosed me with what I felt I had all along: CFS (Chronic Fatigue Syndrome) – sometimes called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). They put me on a few mineral supplements and gave me a script for physical therapy. They didn’t have a cure or an answer, but they gave me a list of contacts.

    In a matter of a month and a half, I have read over 15 books that deal with my illness. Over 900,000 Americans suffer form this mysterious ailment. More people suffer from CFS/CFIDS than MS, lung cancer, or AIDS combined. Its symptoms appear suddenly with in a matter of hours and then never seem to disappear leaving its victim to wonder, “What has happened to me?” The name itself does not do it justice as the illness is characterized by profound exhaustion, substantial problems with memory and concentration, headaches, multi-joint and muscle pain, tender lymph nodes, unrefreshing sleep, post-exertional fatigue, and recurrent flu-like symptoms. CFS/CFIDS varies from person to person, and just like every illness, no two people will ever experience the same symptoms since no two people are alike. Most of us have had the flu and the aches, chills, fever, sore throat, etc….now imagine having that every month for 12-15 days. This is what I have been experiencing for the past 9 months.

    Luckily I was able to find help, in what some CFS patients would call a very short period of time. The average diagnosis takes 3-4 yrs. I have started going to a center in King of Prussia called the Fibromyalgia and Fatigue Center. They are popping up all over the US. These centers focus on the symptoms and complaints of their patients relating to CFS/CFIDS. They took 40 vials of blood and determined that my Epstein Barr (associated with mononucleosis, ‘mono’ for short) has reactivated, my hormonal levels are off balance and my natural killer cell activity is very low along with a few other major things that the past doctors underestimated. Basically, the concept is once your immune system is down and your body is stressed it invades every other system in your body throwing it all off course. My protocol for treatment includes a very high dose of an antiviral drug three times a day, plus an anti-fungal along with 15 vitamin/mineral/hormonal supplements. On top of that, I get weekly vitamin IV’s for the next 4 to 12 months. The center I am being treated at takes an aggressive approach to treatment – one that may not be seen as "mainstream" medicine, but "mainstream" medicine doesn't have any solutions.

    Todd and I are confident that this new treatment will at least bring me back to some level or normalcy. The majority of my days were around 30% and I am now averaging 50% days. I am told that the recovery process is long and hard. I will probably feel worse before I get better and I will probably never be running around at 150% like I was prior to becoming ill (nor do I think I want to again!) But, I am learning to manage and adjust to this condition. Todd and I take it one day at a time. In the past most patients with CFS suffered for 4-10 yrs., and some progressively got worse or never recovered. But with this new experimental treatment, I am confident I will get better sooner then later.

    I felt the need to explain this to you all in hopes that you can understand, as best as you can, that I can’t pick and choose the days I am going to feel good. Moreover, this is a very weird and mysterious illness that I know most people have never heard of and if you did you probably didn’t realize how life altering it was – I know I didn’t. Consequently, there will be plenty of events that I will miss and there will be some I can attend. Please know that I will always try to be at the birthday parties, showers, dinners, housewarmings but I can never guarantee how I will feel until that day. Also, the biggest cliché of the illness, and almost what every person hears is, “But you don’t look sick”. What most of you don’t see are the repercussions of my energy level after being out, or at an event. When I am really down with my fevers and chills, I look like a person with a bad case of the flu that should be in the hospital. When I am out with everyone, I don’t come off this way, but just a night out talking with friends tires me and can put me in my bed for a few days… but it is always worth it!

    Lastly, thank you to everyone that has offered kind words, get well wishes and prayers. It truly has made a difference.

    Love, Jane

    ‘Our health is as a voyage: and every illness is an adventure story and so mine begins”

    [This Message was Edited on 11/23/2005]
    [This Message was Edited on 11/25/2005]
  2. getfitat40

    getfitat40 New Member

    You certainly have a way with words. I am amazed at the way your words illustrate this DD in a way that is simple, heartfelt, and thorough. I pray that your family and loved ones not only read it, but make the time to understand it and ask you questions. Thank you for sharing this....Nancy
  3. pamj

    pamj New Member


    I feel like I could have written that myself! I can't believe how much that describes exactly what I went through in the beginning and exactly the treatment that I've been receiving for the past 3 years. I said the same thing in the beginning about depression not causing fevers, when my PCP thought I was depressed. I wasn't depressed, I was scared because I had a fever of 101 for over 2 months!

    I think you really explained it well. I felt like crying as I read it and realized what your daily life is like... and then I was reminded that mine has been exactly the same. I wish I had written something like this 3 years ago so people would have really understood. They are only really understanding the full picture as of the past few months. I think you are right in feeling that it will help your recovery to let them know what has been going on. It is so exhausting to try to explain this "mystery" illness to people who think we're some kind of hypochondriac, and your letter shows that it is a very real & debilitating illness.

    I have the same trouble you have with social events. I rest up for days to get ready to attend, and I look "good" while I'm there. Everyone thinks I must be getting better when they see me, but then I'm very sick for 3-4 days after. My husband just had a 40th b-day party for me on Saturday night, and I had a blast with my family & friends. Towards the end of the party, I got very pale & was trembling. Since then I've had the fever, chills, bad sore throat & swollen glands, and body aches. It's the same routine every time I attend any event.

    I had my IV on Monday, and I'm resting & drinking lots of fluids to get ready for Thanksgiving dinner... after that, it will be the same recovery period. It's just something that we have to plan for. Just like you, I always feel like it's worth it.

    I hope you have excellent results from your current treatment. I'm glad to hear that you feel an improvement from how you felt before. It is definitely a slow road, but it's very helpful to remain as positive as you are.

    I also love your quote... My husband & I have always believed that everything happens for a reason, and we are still on the path to see where this illness will lead us.

    I'm glad you finally got your diagnosis so that you know what you're dealing with, and you can move along your path to better health.

    take care,

    p.s. Your wedding picture is beautiful!
  4. Dalphia

    Dalphia New Member

    Pam, I noticed your post indicating you had been in tretment for three years at one of he FFC's. So, how are you doing??? After three years have you never gotten into remission??? I'm sorry you had to give up your career, I know how you feel.

    Was wondering if you your blood work reflected any other virsus/bacteria like so many with a diagonsis of CFS / Fibro. Sue would like to hear from you.

    God Bless,
  5. Rosiebud

    Rosiebud New Member

    you explain everything, you dont accuse them of not understanding, you're not asking for sympathy - yes, no-one can find fault with this that I can see. Very well written.

    I hope your family and friends all read it and it brings them to a better understanding of what you're going through.

  6. XKathiX

    XKathiX New Member

    You are very articulate, yet your email is not just a text book explanation. You have written facts along with the emotional aspect. If anyone in your family can't understand what you wrote, they will have difficulty understanding it in any form.

    I'm sorry you are going through what you are going through right now. Also, your wedding picture is very beautiful, you look like a very happy couple.

    Good luck in sending this note out.

  7. pamj

    pamj New Member

    I don't actually go to a FFC, I'm treated by a holistic MD who has a lot of experience with CFS & FM. She regularly attends seminars & conferences, and keeps up with the latest research and treatments.

    The treatment plans that we have used seem to be the same as the FFCs, but I can't say that I've had any remission. The only time I started to feel a bit better was last summer when I drove to do some errands by myself. So, actually I had several "good" days. Other than that, I feel that I've remained in the same condition - not great, but somewhat stable.

    It's much better than in the beginning, I was bedridden for about the first 6 months. I'd faint when I got up to use the bathroom & couldn't even shower myself sometimes. After that first few months of dealing with my traditional docs, I found a holistic doc who did more thorough testing & started me on IV treatments, along with anti-viral (valtrex), zoloft (to help with my panic about fainting too much), and several vitamins & minerals based on tests that showed deficiencies.

    When we moved back to Massachusetts 3 yrs ago, I continued treatment with another holistic MD, and we've been trying different things every few months or so. We keep re-testing everything each year or so, to see if we've missed anything, but most tests come back OK. The only things that show any problem is an active EBV, and my ANA titer has been 1:64 since the beginning. The biggest documented symptom to show that there is a problem with the traditional docs is that my temp is usually at least 100 when they examine me. So, we just keep trying to find answers. I'm currently seeing an endocrinologist who is very concerned and seems to be determined to find an answer to why my fevers aren't normal. He's pushing for our infectious disease docs at our hospital to do a very involved fever workup.

    In the meantime, my holistic doc keeps me from being bedridden. The valtrex only helped to reduce the viral symptoms, but after 3 years, we decided to stop while we do the new testing. It didn't actually make the virus go away. I still need the zoloft, when I tried to come off a few months ago, I was in a panic for a couple of weeks. The IVs seem to keep my blood pressure up enough so that I don't faint as often. Also, I'm sure that the vitamins & minerals in the IV have helped a lot, since my digestion is very poor. I lost 15 pounds during the last few months because of diarrhea, and I only weight 116.

    So, sorry this is so long, but even though I haven't attended one of the official FFCs, my testing and treatments have been along the same lines. Many of the patients that I have treatment with have been to similar clinics in Switzerland, and Mexico, before the FFCs became more well-known. I'm glad that they seem to be growing, and hopefully many people will benefit & the traditional docs will realize that these treatments can be very helpful. Even though I haven't had any remission, I know that I would be very sick without the treatment options that are available to me. It's much better to function at 50% than at 20-30%...and hopefully it will continue to climb, even if it's slow! :)

    let me know if you have any other questions.

    take care,
  8. hopeful4

    hopeful4 New Member

    You said it so well! Your words echo my thoughts and feelings. I hope that putting it on paper has helped you feel better, and that in sharing it with your friends and family, they can begin to understand what you are going through.

    Throughout your testing, have you ever been tested with the Igenex Western Blot for Lyme Disease? It might be worth it, since you have been treating for so long with only some improvement.

    I started at FFC in March, and have not improved. In March I was given a Quest test for Lyme, it came back negative. Due to my persistent symptoms and some specific ones, my doctor requested an Igenex Western Blot for Lyme, which is considered much more reliable. It came back positive, so now I can begin treatment for what may have been the major underlying cause of my CFIDS/FM.

    Take care, and keep up the writing! Your wedding photo is beautiful!

    Best wishes,
  9. hopeful4

    hopeful4 New Member

    Thank you for sharing your CFIDS/FM letter and your I Need To... Part of what is so difficult about this illness, is trying to explain it to others in a way that they can really hear it, and begin to understand, and at least care.

    There have been times that I have been so fatigued and brain-fogged that I couldn't even put a sentence together, let alone try to answer the question "How are you feeling?" You have expressed so much of my experience.

    At the same time, I have had to learn to let go in a big way. Let go of my expectations that others will understand or help, and letting go is an ongoing process for me. I have had to face the fact that some, maybe most folks, just won't get is much better for my own energy and sanity.

    Then, I take that energy and time, and focus on my goals, if only mentally, and use visualization tapes and affirmations. Here are 2:
    I am filled with radiant good health, energy and vitality.
    I invite people into my life who nurture and support me.

    Hugs to you,

  10. jane32

    jane32 New Member

    I just had my husband look over it too and he just tweaked a few things. Thank you so much for the compliments on my picture as well. That was taken 6 months before I got sick. I can't wait to feel that happy again:)

    I am hoping my family and friends now understand a little bit about what I have been going through and if they can't too bad for them. I only want to surround myself with people that are positive:)