First visit nice to meet you all

Discussion in 'Fibromyalgia Main Forum' started by vulcan, Jan 5, 2003.

  1. vulcan

    vulcan New Member

    Recently found this site so this is my first posting. I am a 57 year old UK male and have been diagnosed at various times over the years with (and for more years than I can remember have suffered from) ME / CFS / Fibromyalgia / Depression / Stress or whatever seemed to fit at the time.
    I have had more blood tests than you can shake a stick at and at times have seen specialists of various sorts including Psychiatrists and even a Professor of Tropical Medicine. It was thought that maybe I had been inoculated with a bad batch of Yellow Fever or Typhoid or the like (prior to one of my many trips to far flung places) and it had left something nasty in my body

    Anyway all to no avail I spend my life feeling like I have flu all the while with the added bonus of nausea / fatigue and since last August (2002) following an attack of Vertigo, dizziness and a feeling that my head is either in a vice or about to explode
    It is sometimes difficult to put into words exactly how I feel other than a total feeling of being unwell ( how does a doctor treat that ). Do other people I wonder have the same trouble explaining just how one feels ?

    I have tried various forms of medication including anti depressents, but I seem not to tolerate drugs well and finish up feeling worse than ever.
    Some three years ago I was put on a course of Prozac to supposedly help my sleep pattern and finished up off work for seven weeks with a allergic reaction.

    I still work part time but have to say its gets harder and harder keeping it all going , but then again if I stop it means I have let it beat me and that’s the last thing I want.

    And then again people always say how well I look………..ah well must all be in my mind !

    Anybody out there with similar CV any tips / advice will be gratefully received.

    Best of luck to you all
  2. layinglow

    layinglow New Member

    I can totally relate to your question, concerning explaining how we feel to others. I, have used the feeling totally unwell. I have tried, I feel like I am dying a slow death. I have even in sheer desperation used expletives I don't think I can mention here.
    Have you noticed the knee jerk reaction, that happens most of the time? Patient mentions symptoms, and overall unwellness. Physician eyebrows raise. :)

    I have CFIDs, too (think it stands for Can't Figure It Disorder, and FMS (Forever More Symptoms). Like you, I keep plodding along, trying not to throw the towel in, inspite of the temptation. I know how hard this is for you, to continue working with the flu symptoms, nausea, vertigo and fatigue.

    I was referred here, by another sufferer, hoping to find some support and offer it, too.
    LL
  3. 1maqt

    1maqt New Member

    A very warm welcome to you! There are more sources of info here than any other place. Have had this DD for 28 yrs.

    Am 58 yr old mother of 6 grandmother of 18, and can relate
    to your post very well. In 1975, they didn't even recognize women had anything other than too much work frustration.

    Have been researching FMS/AUTOIMMUNE sesease for 4 months.
    here on this site. Reading what others have to say helps to
    create a sense of belonging somewhere.

    Went to MD Thurs with my info, and she agreed w/ me! She started me on Cipro(Antibiotic 500mg 2x day for 2 wks, then 2oomg 2x day for 2 wks, then 200mgs 1x a day for 4 wks.
    I was already taking Doxepin(anto depress) Soma(muscle
    relaxer)... Then the Dr. added to the Cipro, Neurontin (used for Parkensons, epelipsy, and other neurological maladys.)
    and Aambien( which works on the stage 4 sleep, which is a problem w/us.

    There aare many others who are more knowledgeable than I , so read, Read Read..... Everyone here is very kind and gentle to the soul> 1maqt
  4. pam_d

    pam_d New Member

    Nice to meet you, too! You said it---one of the toughest things we have to do as FM/CFS patients is try to describe what we are feeling to doctors, who look at us like we have three heads! Putting some of the bizarre symptoms and sensations we tend to experience into words can be totally frustrating. And you also make another good point----if we LOOKED like the hell we often FEEL like, we might get a little compassion and respect! Instead, we spend a lot of time justifying how we feel to our nearest and dearest, or grinning and bearing it, or covering it up with our bosses or coworkers. That's why this board is so great---everybody here has had similar feelings and experiences; when you describe something, people here actually GET it!! It's nice to have that instant understanding that you will find here! Plus a lot of excellent help regarding supplements, diet, exercise, just general things that have worked.

    I'm like you, in that I have tried a few drugs, but have had a poor tolerance; I tend to have drug allergies or can't tolerate the side effects. So I generally just use supplements, no regular meds. Right now the biggest benefit for me is the magnesium; I had tingling & muscle twitching as part of FM, and this has helped me; hasn't eliminated it, but has reduced it. There are supplements like ZMA that can help you get better sleep, if that's a problem, available from this site's store. Others will chime in and tell you what has helped them; I think it's pretty common for many of us to not tolerate prescription drugs well.

    Ask questions here (everyone's helpful) and run a check on topics posted previously; there's a wealth of information in the archives!

    I'm glad you found this site; I've only been here a few months, but I've learned so much in that time!

    Welcome again,
    Pam
  5. Annette2

    Annette2 New Member

    You certainly are in the right place. I know how you feel about not being able to explain exactly how you feel sometimes. I also have that "unwell" feeling a lot, and can't explain it. Sometimes I just sit on my couch and don't want to move not even a muscle. It's pretty horrible, isn't it? Especially when you finally realize it won't go away. But we do plod along, don't we? I also work part-time. I just returned to work after 7 weeks of sick leave due to surgery. It was hard returning, especially since they asked me to work all day the first two days I was back. I came home exhausted at night! But I've been resting up this weekend and I'll be okay tomorrow. Anyway, we all welcome you here - you'll find a lot of people like yourself and we all share ideas and information! Happy and Healthy New Year!

    Annette2