My CFS story warning, long post

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Apr 23, 2006.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi everyone

    As you all know, it is awareness day on May 12th. I am planning to send all my friends and family members an email on this day, with a document attached that tells my CFS story. I have finally finished the first draft today.

    My objective is to educate the people in my life about CFS and tell my story. The challenge is to try to get my story across without sounding whiny.

    I would appreciate any feedback from those that feel up to it - I must warn you though - its 3 full pages long.

    Thanks everyone
    Michelle
  2. Michelle_NZ

    Michelle_NZ New Member

    Today, May 12th is ME Awareness Day. M.E stands for Myalgic Encephalomyelitis.

    I am sending you this email because you are my friend, and I want you to know what I am going through at the moment. I have recently relapsed badly into this illness and the effects on my life have been quite devastating. It would mean a lot to me if you could take 10 or 15 minutes to read this, and the web pages listed below:

    http://www.anzmes.org.nz/what_is_me.htm

    http://www.chronicfatiguesupport.com/chronic-fatigue-syndrome-understanding.htm

    http://www.ahs.uic.edu/ahs/files/ot/bookler/CFS_Website/cfsdefinitions.htm

    So,what is ME? Well for a start, it is known by a number of different names.

    ME is also known as Chronic Fatigue Syndrome (CFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Post Viral Fatigue Syndrome (PVFS), Tapanui Flu and (the offensive term) Yuppie Flu. They are all the same illness. For various reasons (which I won’t go into), it has many different names. You have probably heard some of these terms but not really known what they are.
    The most commonly used terms are ME (used in the UK) and CFS (used everywhere else).

    CFS / ME is a debilitating condition characterised by severe fatigue and profound exhaustion that cannot be explained by an underlying medical condition. The fatigue in CFS is extreme and it bears no relation to the fatigue a healthy person feels as the result of a busy life. People with CFS also have extremely poor stamina and find that normal daily activities eg. Showering or making the bed, can cause them to become exhausted and out of breath.

    The illness involves every part of the body, and has many other symptoms as well, including impaired memory or concentration; sore throat, tender lymph nodes, muscle pain, multi joint pain; headaches, nausea, unrefreshing sleep, insomnia, post exertional malaise, alcohol intolerance, IBS, food sensitivities, and neurological symptoms (eg sensitivity to light / noise). There are other symptoms too, but the ones I have listed are the ones that I experience. CFS varies a lot from individual to individual.

    Currently there is no cure for CFS but the latest research confirms that people with CFS / ME have genetic abnormalities that predispose them to developing this illness – often as a response to a viral infection, stress, injury or trauma. About 60% of people with CFS believe their illness started with a viral infection (and so do I).

    Because there is no proven cure, medical treatment primarily focuses on treating the symptoms of the illness (generally this means prescribing medications for sleep and pain). Recovery is not guaranteed, and it is a slow process. About 30% of people with CFS will recover to a “good” degree within 5 years, and about 48% will recover within 10 years. Some people will have the condition for the rest of their lives, some become completely disabled, housebound or bedridden, unable to even look after themselves at a basic level.

    CFS is a long term, chronic and debilitating illness. People severely ill with chronic fatigue syndrome have a functional level that is significantly lower than that of someone with cancer undergoing chemotherapy, someone with heart disease or multiple sclerosis. In the latest CFS research, published in April 2006, Dr. William C. Reeves stated the following:

    "They (people with CFS) are as impaired as people with multiple sclerosis or AIDS or who are undergoing chemotherapy for cancer," Reeves said. "They don't die, but they are severely debilitated."

    I would like to share with you my journey into this illness over the last 2 ½ years.

    I was diagnosed with CFS in February 2004 after a number of months of unexplained sickness, including bone crushing fatigue, extreme tiredness, aching body, nausea, intense headaches, heart palpitations and dizziness. It started with a viral infection in November 2003. I had a week off work with flu like symptoms, body aches, headaches, nausea and extreme fatigue. I have no idea what the virus was, but I went back to work still feeling very weak. For the next 6 weeks I suffered unbelievable exhaustion - I was going home sick at least 3 times a week, and taking sick days every week. I felt so ill with painful headaches, nausea and this awful incapacitating fatigue. The fatigue was so bad I felt like my body was literally shutting down. My arms and legs felt like concrete and some days I could hardly barely keep my eyes open to drive home from work. Basically I just didn’t recover from the initial viral infection. I was so exhausted at work I felt like crying, and I would go and hide in the toilets to cry, and try and rest. I was taking about 40 – 50 painkillers a week, and eating anti nausea pills like Tic Tacs.

    During this time I went to the doctor almost every week in utter despair. The ran all the tests but they couldn’t find anything wrong (this is actually common for CFS patients, blood tests are usually normal). This was extremely upsetting – especially when I would be at the doctors in tears telling them something was wrong with me, that I was too exhausted to work, yet they didn’t know what the problem was. After talking with others who have CFS, I now know that this is a common story – pretty much everyone with CFS goes through this. Most GPs know very little about it and because they can’t really treat it, they are wary to make a diagnosis.

    Anyway, all up, I ended up having about 2 – 3 months off work. On some days I would spend up to 16 – 20 hours in bed. The symptoms were intermittent, and at times I was bedridden and housebound, too sick to do anything. The thing with CFS is that you also have good days – this is when you do go out, and to others you don’t look sick at all. It’s when you are really sick, unable to leave the house, too exhausted to shower, and hobbling around like a geriatric that people don’t see you, so they don’t really understand how bad it is. They also find it hard to understand how you can be good one week or one day, and not the next – and let me tell you, it’s been hard for me to accept it too, but that is just how it is.

    So, in Jan 2004 I found my way to a naturopath who said I had Leaky Gut Syndrome with chronic fatigue, I did an 8 week expensive detox programme, and I started to improve. I don’t know if the detox helped, or if I just got better naturally, but by Feb 2004 I was back at work half days. Then I went to a CFS specialist who gave me the medical diagnosis of Chronic Fatigue Syndrome. I didn’t really understand what this meant for me in the long term, but by March I was back at work almost full time. I thought I was “better”, but as I’ve now learnt, that is not how it works with CFS. I didn’t realise how lucky I was to have gone into a level of remission so early in the illness. I was just relieved to feel normal again and to be back at work. I went back to the business of getting on with my life – working, exercising, and dating!

    My first inkling that I was not fully better was just a month later in April 2004 when I got drunk at a party - the alcohol caused a “relapse” and I couldn’t go to work for nearly 2 weeks! I was shocked. I now know that alcohol is known to cause relapse in people with CFS. I was again incapacitated with fatigue, nausea, headaches, sickness and body aches for about 10 days. I know some people thought my “10 day hangover” was a bit of a joke, but it was a very scary experience for me.

    So, fast forward 5 months or so to September 2004, I was doing much better and I was on a fairly even keel - things were going well with work, I was going to the gym, and again, apart from some mild manageable symptoms, I thought I was mostly rid of the CFS. Then I did something really stupid – I got horrendously drunk (some of you will remember the bowl of Punch at the O’Neill Street Party – I was puking up mint all the next day! ). This caused another full blown relapse even worse than the relapse 5 months earlier in April – this time it was 2 full weeks off work to recover. It was at this time that I realised alcohol was toxic to me and that I really needed to be careful to avoid getting sick again.

    So, since September 2004 I have had periods of remission and relapse. This seems to be common for many CFS patients. It seems to be a condition that waxes and wanes. Many people have cycles of relapse and remission, and this was the case for me until about June last year when my health starting deteriorating. A relapse would usually last 1 – 2 weeks and then I would slowly return to my former level of wellness. (I have never regained the level of health I had before I got sick in November 2003 however).

    During a relapse, there are a number of symptoms, but as the name suggests, the primary symptom is fatigue. But this fatigue is not like anything that most people have experienced. It is NOT just being tired. The CFS fatigue makes me so exhausted that sometimes I can’t leave the house, in fact, I may stay in the same clothes and not shower for days - because I can’t – I have no energy to do so. It hurts to walk around the house. I get out of breath if I take a shower, and need to rest afterwards. The fatigue is so bad I feel like I could not run out of the house even if it was burning down. In addition to this I have headaches, migraines, nausea, heart palpitations, dizziness, body and joint pain, brain fog (can’t think properly), and (ironically) chronic insomnia. My blood pressure is so low that I can actually hear my heart beating and at night when I put my head on the pillow I can hear my blood pumping past my ear.

    The thing I am struggling with most right now is learning to pace myself to avoid getting sick. “Too much” activity (and “too much” is actually very little now,) causes “Post Exertional Malaise”. It’s hard for me to describe what post exertional malaise feels like, but I’ll try. Have you ever gone for a huge run for the first time in a year and then felt dizzy and like you were going to puke? Well it’s a little bit like that, but throw in the fatigue, a migraine headache and an aching body and you have some idea. It is the sickest I have ever felt. It’s awful and I hate it.

    The thing that makes pacing yourself really difficult is that you don’t feel the sickness or fatigue while doing the activity – there is a delayed response from your body. It usually occurs 12 – 48 hours AFTER and then you find yourself bedridden again for days or even weeks. I can no longer do any aerobic exercise at all because of this – I cannot do anything that causes me to get out of breath. Exercise, quite literally, makes me sick. It’s a vicious circle because the more inactive you become, the less stamina you have, and the less you can do and so on and so on.

    Since January 2006 my condition has got progressively worse and it’s fair to say that I have fully relapsed into the illness. I am no longer “in remission” and now I experience most of these symptoms (or a combination of them) on an almost daily basis. It is virtually impossible to plan anything as I can feel okay one minute and then suddenly be very ill with full blown CFS symptoms within the hour.

    Once of the worst things about having this illness is that it is very misunderstood by most. Some think it is depression, a psychological illness, or worse - that the person is just lazy. This really upsets me. There IS a psychological component to CFS but it is all about managing your own emotional response to the very real and horrible PHYSICAL symptoms. About 50% of people who have CFS will experience depression at some point. However it is a SECONDARY symptom – i.e. it is as a result of having CFS that the person gets depressed, not the other way round.

    People with CFS will agree that one of the hardest things to accept is that you cannot live your life in the same way you did before you got sick. This is what I am struggling with right now. I just can’t do the same things as before, and it’s gut wrenching to feel every aspect of my life as I know it, literally getting the crap squeezed out of it – sounds dramatic I know, but that is how it feels. My world is getting smaller and smaller.

    This illness is affecting every part of my life – career, social, personal. I feel like I am losing myself to it. Having CFS has been the most difficult thing I have ever had to endure in my life. I am struggling to learn my new boundaries, and how to pace myself to avoid being sick all the time. I miss going for walks after work, I miss work, I miss going out to dinner, I miss going to the movies. I miss not having to worry about how much of my precious energy I am using up by doing the menial things we all take for granted. I miss not feeling tired and sick every day. I miss the old me.

    So, what is the prognosis for me? I don’t know. Apparently I am still in the “early” stages of CFS, given that it has only been 2 ½ years. This means that I still have a 30% chance of getting to a functioning level of recovery within another 2 ½ years. Sounds like a lifetime to me and I am finding it hard to get my head around. I am trying to remain positive though. I am hopeful that because I have been in remission once before that this means I have a good chance of a second recovery. In the mean time, I am just trying to get by one day at a time.

    So, if you have made it this far, and you’re still reading, I want to say “Thanks”. It means a lot to me that you have taken the time to read my story, and learn about CFS and how it has affected me.


  3. sues1

    sues1 New Member

    You said it well.........Bless you.........Susan
  4. Michelle_NZ

    Michelle_NZ New Member

    Thanks Susan - I'm really nervous about sending it - I dont want to sound like I'm whinging and moaning, but I really want to be heard.

    Best wishes
    Michelle
  5. ritatheresa

    ritatheresa New Member

    You don't sound whiny at all. Your story is so similiar to mine. For me the fatigue has always been the most debilitating.

    I'm struggling with my family and friends, I feel so let down.

    I would never wish this on my worst enemy.

    At least we all have each other, take care, Ritatheresa
  6. julieisfree05

    julieisfree05 New Member

    One of the things I never hear about is that "fatigue" can also be "orthostatic intolerance".

    Small studies (by Cheney, I think) have shown that PWCFIDS are about one pint low in blood. When given the extra blood via transfusion, the body "re-adjusts" within a week or so, and we are low again.

    This can cause the feelings of dizziness, or "blacking out" when you try to stand up or do any type of activity. Kind of like when you stand up too fast and get that "dizzy" feeling.

    I suffered from this problem for years. It was not "fatigue", it was my brain not controlling blood flow properly.

    I had a NeuroSPECT scan in '96 that showed I had very little blood flow to the frontal lobes of my brain - consistent with the research about low blood volume, and the research from Dr. Lawrence Bradly in Alabama.

    Hope this helps,

    julie (is free!)

    Forgive
    It's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
  7. Michelle_NZ

    Michelle_NZ New Member

    Thanks for your comments everyone.
  8. zion1971

    zion1971 New Member

    brilliant michelle!

    would you mind if i include your story in my awareness day campaign? i plan on doing what you will do: share my story with everyone on my email list. they will love it i am sure :) it will be hard. not everyone has been supportive of my struggle, some have said i am a selfish complainer when i tell my story. go figure.

    nevertheless, i will do this for all of us who suffer. the stories need to be heard.
  9. bunnyfluff

    bunnyfluff Member

    Your story is very similar to my feelings- the post exertional malaise is perfect! I have been sick 6 years! I feel more and more slipping away every day. I want to give it to every one I know, and hope they will take 5 mins to read it and try, please just try to understand what we are going through. I think if I thought anyone really heard me, it would be better. On some small level, it would be better.
  10. Michelle_NZ

    Michelle_NZ New Member

    Yes, you can use it - actually, I consider it an honour!

    I have also found that not everyone has been supportive.

    I have recently had to move back to my mums as I can no longer work. About a month before I moved, my friend that I was flatting with had been away for a week, and when she got back she asked me "How are you?"

    Well, I responded with the truth "Actually, not well, I've been really sick and have relapsed into CFS".

    Her response? She didnt say a word, turned her back, and started doing the dishes! I just walked away. This has happened on a few occasions now.

    Take care
    Michelle

  11. kholmes

    kholmes New Member

    Very detailed and well-written, Michelle! I can't tell you how much I can relate to your story.
    I'm a bit envious of you living in NZ. South Island or North Island?
    Kholmes
  12. Michelle_NZ

    Michelle_NZ New Member

    I feel the same way - I am so desperate to be understood!

    I want some validation for this experience I am having. It hurts so much to feel that no-one in my life really knows what I am going through.

    It is hard enough being sick, but having to deal with disbeief, disinterest and skepticism from all those around is just too much!

    Take care
    Michelle

  13. Michelle_NZ

    Michelle_NZ New Member

    I'm in the North Island - Auckland. Have you been to NZ before?

    BTW - your namesake has just had her baby!
  14. cats2595

    cats2595 New Member

    Michelle,

    Your story could be mine except that I got sick in 1990 and was quickly diagnosed by a neurologist as having CFS. It was about 5 years or so into my illness that I started having muscle pain and was then diagnosed with fibromyalgia. Since then, I'm not sure that all the doctors/specialists I have been to believe in CFS/fibro, they just try to find some other cause for my myrid of symptoms.

    I hope that you do get better. I have had major ups and downs, but over the past 2 years, have pretty much been incapacitated by my illness. All in all, I have had CFS for 16 years and only feel it is getting worse.

    One symptom that I don't believe you mentioned that restricts me so is muscle weakness. If anyone has this, I would love to hear from you.

    I am able to work because I work from home as a medical transcriptionist but I am a single mom and I know I work entirely too much to have the illness I have but I have to support myself and my son.

    This is the first time I have gotten on the message board so I'm new to the "group." I try not to get obsessed with my illness but do learn a lot from others who are experiencing the same thing.

    Good luck to you.

    cats2595

  15. Roseblossom

    Roseblossom Member

    I'm glad you found this place.

    I've been too sick lately to post much, but I have read a couple of your posts with interest.

    Best,

    Roseblossom
  16. Michelle_NZ

    Michelle_NZ New Member

    It's good to know that other people know exactly what I'm going through, but I do think its awful that anyone has to feel like this.

    Thanks
    Michelle
  17. rockgor

    rockgor Well-Known Member

    There are a few things wrong w/ your report:

    1) it's so well written, people won't think you're sick.

    2) in the paragraph ending... Oh brain fog, I forgot. Well, you have a "not" where you shouldn't in the sentence where you say you have to plan how to expend your energy.

    3) it's too long.

    People are raised on TV. Most of them can't read anything longer than directions on a package.

    My aunt did a lot of research on the family and sent out a booklet about 20 pages long. She said only two people showed evidence of actually reading it. (One cousin said she "Planned to read it sometime.")

    Good luck.
  18. lovethesun

    lovethesun New Member

    It was wonderfully clear.I have fibro.I also have a low tolerance for any activity.If I even take my wheelchair and am out for 5 hours,it takes at least 3 days to recover.Is this still fibro?-what you are doing is very brave and a lot of work.Linda
  19. UnicornK

    UnicornK New Member

    I changed a few things to make it "my" story...didn't have to change much though! LOL...and I'll send it out on May 12.

    I'm also doing more for Awareness Day. On Monday I have an interview with my local paper. I've also copied several other articles and Prickles' flyer. I'm going to distribute them out to doctors offices, our senior center, and post them at grocery stores.

    We NEED to get this info out! There are people out there who have these DDs and don't know it! There is treament for them, although no cure...yet.

    Thanks so much for writing this.

    God Bless.
  20. neen85

    neen85 New Member

    Thanks for sharing! It was very well written and I would not shorten it any. I had no trouble reading it and I assume you will be sending it out to mostly people with no health problems. GREAT JOB! Daneen