Anyone out there with similar experiences.

Discussion in 'Fibromyalgia Main Forum' started by ahccha, Oct 24, 2002.

  1. ahccha

    ahccha New Member

    Hi,

    I haven't posted on this board before. My post will be quite long - I apologise in advance for that.

    I have been unwell for over 2 years now and I still don't have a diagnosis since the plethora of tests I've had have revealed nothing. I want to know if there's anyone out there who's had problems similar to mine.

    10 years ago, I contracted genital herpes. Up until a couple of years ago, it wasn't a problem - I would get 'typical' outbreaks approximately every 20 months, they'd last for a couple of weeks and then I would be fully recovered. Then, about 2 years ago, I started to feel increasingly unwell. At the time I was my usual active self (had been so for many years) and was running several times a week. However, I started to have strange gastrointestinal problems - explosive bowel movements towards the end of a run which, on two occasions, were accompanied by severe rectal haemorrhage. A subsequent colonoscopy found nothing. At the same time, I began to feel increasingly tired and my herpes started to become more active.

    As the months went on, my health deteriorated to the point where I wasn't doing any regular exercise - every time I did any, I'd start to get an outbreak a couple of days later - and I had enduring fatigue. I started suppressive therapy for my herpes which helped keep it under control, provided I didn't exert myself physically in any way. Most days I would have some degree of prodrome symptoms and when it was bad, I'd have painful red bumps at the location. However, they never materialized into typical herpes blisters.

    I've been referred to numerous doctors - gynocologists, infectious disease specialists, gastroenterologists, internists and a psychiatrist. Those who have seen the painful bumps say they are not herpes. One of them told me to stop my suppressive therapy to see if I then got an outbreak. I didn't get a typical outbreak - I just had the pain and bumps almost constantly. So, noone believes that these symptoms are related to my genital herpes and the latest ground-breaking diagnosis is that I'm wiping myself wrong.

    All I know is that I have almost constant neuralgia and soreness 'down there' and that, although I've had herpes for 10 years, I only started getting these persistent symptoms 2 years ago, at the same time as I started to feel extremely fatigued. I am convinced the two are related.

    I don't know what to do because noone believes me and if noone believes me, they can't help me. My entire life has changed - I'm 29 years old and have gone from living in a great apartment in the city, dating and doing triathlons to living at home with my parents, barely able to hold down a job. I'm afraid that I'll be fired - last Thursday and Friday I didn't go to work and basically slept 20 hours both days - I was exhausted. I'm also terrified because my life's on hold and all the plans I had for the future have gone down the toilet. My parents are also having a really hard time coping with it and I have guilt about that.

    I'm sorry this post is so long and self-pitying but I really do feel at a loss. I'm afraid to go to doctors now because I'm tired of having them tell me I'm wrong and feeling like I have to convince them. Why would I make something like this up? Do they think I like my situation?

    If there's anyone out there who's had similar experiences, especially relating to herpes, I'd be very grateful to hear from you. Herpes is pretty common so I'm figuring there must be someone out there who's had these problems.

    Thanks,

    ahccha
  2. ahccha

    ahccha New Member

    Hi,

    I haven't posted on this board before. My post will be quite long - I apologise in advance for that.

    I have been unwell for over 2 years now and I still don't have a diagnosis since the plethora of tests I've had have revealed nothing. I want to know if there's anyone out there who's had problems similar to mine.

    10 years ago, I contracted genital herpes. Up until a couple of years ago, it wasn't a problem - I would get 'typical' outbreaks approximately every 20 months, they'd last for a couple of weeks and then I would be fully recovered. Then, about 2 years ago, I started to feel increasingly unwell. At the time I was my usual active self (had been so for many years) and was running several times a week. However, I started to have strange gastrointestinal problems - explosive bowel movements towards the end of a run which, on two occasions, were accompanied by severe rectal haemorrhage. A subsequent colonoscopy found nothing. At the same time, I began to feel increasingly tired and my herpes started to become more active.

    As the months went on, my health deteriorated to the point where I wasn't doing any regular exercise - every time I did any, I'd start to get an outbreak a couple of days later - and I had enduring fatigue. I started suppressive therapy for my herpes which helped keep it under control, provided I didn't exert myself physically in any way. Most days I would have some degree of prodrome symptoms and when it was bad, I'd have painful red bumps at the location. However, they never materialized into typical herpes blisters.

    I've been referred to numerous doctors - gynocologists, infectious disease specialists, gastroenterologists, internists and a psychiatrist. Those who have seen the painful bumps say they are not herpes. One of them told me to stop my suppressive therapy to see if I then got an outbreak. I didn't get a typical outbreak - I just had the pain and bumps almost constantly. So, noone believes that these symptoms are related to my genital herpes and the latest ground-breaking diagnosis is that I'm wiping myself wrong.

    All I know is that I have almost constant neuralgia and soreness 'down there' and that, although I've had herpes for 10 years, I only started getting these persistent symptoms 2 years ago, at the same time as I started to feel extremely fatigued. I am convinced the two are related.

    I don't know what to do because noone believes me and if noone believes me, they can't help me. My entire life has changed - I'm 29 years old and have gone from living in a great apartment in the city, dating and doing triathlons to living at home with my parents, barely able to hold down a job. I'm afraid that I'll be fired - last Thursday and Friday I didn't go to work and basically slept 20 hours both days - I was exhausted. I'm also terrified because my life's on hold and all the plans I had for the future have gone down the toilet. My parents are also having a really hard time coping with it and I have guilt about that.

    I'm sorry this post is so long and self-pitying but I really do feel at a loss. I'm afraid to go to doctors now because I'm tired of having them tell me I'm wrong and feeling like I have to convince them. Why would I make something like this up? Do they think I like my situation?

    If there's anyone out there who's had similar experiences, especially relating to herpes, I'd be very grateful to hear from you. Herpes is pretty common so I'm figuring there must be someone out there who's had these problems.

    Thanks,

    ahccha
  3. Shirl

    Shirl New Member

    Hi, I don't have much information on Herpes, but will try to find out some information for you.

    I am so sorry you are so young and ill.

    This is the FM/CFS board, and maybe someone can relate to your problem here. But I think you would find more help from a board that is related to your illness, if that is what you have.

    If I can get any information, I will let you know.

    Take care, and hopefully you get some serious medical help soon.

    Shalom, Shirl
  4. lindasue

    lindasue New Member

    Ahccha,
    Well, I started getting "fever blisters" that's is what they were called back in my younger years..Now I know it is a strain of herpes virus. I don't know but I think there may be a link with this virus and Epstein Barr/CFIDS/Fibro.
    DON'T STOP going to doctors until you find one that can dx what is going on with you......I don't know what area you live in but there are many, many friends here that may just live close to you and know of a GOOD DOCTOR in your area. One that acknowledges this illness and will help you with your life.....Proper meds and overall understanding of what you are going through! I have found one, FINALLY! And he leave's no stone unturned in the care and welfare of me and my problems......ie.....PAIN and EXHAUSTION....I have had to stop working completely.....this was a hard one for my EGO......I loved my job and the $$$$. But, I am blessed with a good husband and supportive family. And my pets (three cats and a dog) love having me home all the time....They just climb into bed with me and we have a really great cuddling time.....They all get jealous of one another being too close to me.....and that is really pretty good for my EGO!! HA!
    God's Blessings and DON'T give up!!!
    this battle may have been lost but we will win the WAR !!!!!
    Love and soft hugs,
    Linda
    [This Message was Edited on 11/03/2002]
  5. ahccha

    ahccha New Member

    Thank you all for the responses. I am located in Ottawa, Ontario, Canada. So yes, if anyone knows of an understanding doctor, please pass on the info.

    Thanks,

    ahccha
  6. Shirl

    Shirl New Member

    Ahccha, it went to the next page, busy board this evening.

    Hopefully someone will be able to help with a doctor for you in Canada and your symptoms.


    I wrote someone I know that maybe able to relate to your symptoms, am waiting for a repy from them.

    Hang in there young lady.


    Shalom, Shirl
  7. karen2002

    karen2002 New Member

    I have had herpes for at least 25 years. I have outbreaks about 3 times a year, always during stressful times, either emotionally or physically. I think that herpes, urinary tract infections every 2-3 months, since I was 13, kidney stones, a renal mass, and many other factors--all added up to be the final straw that broke the camels back--resulting in FM/CFS.

    Please don't give up on finding a doctor--I know I almost did. You just plain run out of steam when every appointment is so frustrating, and another dead end. I know.
    I have spent over $22,000....since May ....trying to get some help. I have no insurance.....I have been through the whole spectrum of specialists, mri's, cat-scans.....and a whole slew, of uncaring doctors, and nurses.
    After finding some Doctors through referral, I phoned each ahead, and asked questions of the receptionist, before ever making an appointment. I wanted to know how many FM/CFS patients they were currently treating, and if they treat conventionally, as well as with alternative medicine. A very important issue for me, was that they be willing to prescribe meds for my pain, and lack of sleep. I have to drive 2 hrs. each way, now, but I have finally found help.
    Don't give up--keep searching. I did check the Co-Cures Good Doctor List...and didnt see any in your area, but I'll bet someone will be along shortly, who is in your area.
    Keep bumping this forward...
    Karen
    [This Message was Edited on 10/25/2002]
  8. pam_d

    pam_d New Member

    I checked to see if there was a local support group for CFIDS in Ottawa (with the extreme fatigue you describe, it seems reasonable to assume that there is more going on for you than herpes alone). There is a group called MESH Ottawa & they have a website you can go to for location & times. (I'm new to this group, too, & I don't know if I'm allowed to post a web address, but just do a search on MESH Ottawa, you'll find it). The reason I mention a support group is that you will meet people who can give you lots of info on specific local doctors (not to mention the support you will get from being with people who understand---like on this board). I'm in Kansas, and there were no doctors on that Good Doctor List either---but I found a local support group & came away from my first meeting with several doctors names that other group members were enthusiastic about.

    Karen makes an excellent suggestion, too-- ask about how many FM/CFIDS patients a particular doctor sees when you call--if you get silence, followed by stammering on the other end of the phone, it's probably not the doctor you want! But keep trying, you will find one eventually.

    Good luck to you, Ahccha, & I hope you find a good doctor who can help you & some relief!

    Hugs,
    Pam