I would like to visit with anyone about CFS and what to do with i

Discussion in 'Fibromyalgia Main Forum' started by cofinny, Sep 1, 2002.

  1. cofinny

    cofinny New Member

    Hi,
    I had a retail business for over 10 years...then after surgery came down with CFS and a few other things...very hard to deal with...if you would like to e.mail me. cofinny@cs.com[This Message was Edited on 09/01/2002]
  2. cofinny

    cofinny New Member

    Hi,
    I had a retail business for over 10 years...then after surgery came down with CFS and a few other things...very hard to deal with...if you would like to e.mail me. cofinny@cs.com[This Message was Edited on 09/01/2002]
  3. MicheleF

    MicheleF New Member

    Welcome to the boards. Generally, we post first & get to know one another. Some people do like I did & "lurk" at first, we read but wait on posting till we feel more comfortable.

    Putting your e-mail address in your post is allowed but not necessarily advisable, as sometimes we get people who are selling things...the moderators are usually very good at banning people who try to sell things (it's frowned on by all), in the meantime someone could use your e-mail address to bombard you with offers.

    We are here for those who need support, so don't hesitate to ask us questions. Michele
  4. Sweetmia

    Sweetmia New Member

    I too developed CFS after surgery--I suppose it is the stress of surgery on ones body that causes the CFS to develop--If I had only known--my surgery was elective.
    I presently take 600mgs of Provigil for fatigue. This is rather a high dose but it is the only way I can get through the day. I also take Effexor XP 75 mg--this is an anit-depressant. At night for a sleep I take 1/4 of a tablet of Remeron (dispensed in 30mg). I sleep so soundly.
    My husband is a physcian and he takes Remeron too when he has trouble sleeping.
    I used to run every day 5 miles non-stop and at a 7 min 30 sec pace. Now I have to run alittle then walk. But I still do my 5 miles. I work full time as a sales rep. so fortunately my schedule is flexable (however, I will be working all this afternnon and tomorrow). Most importantly is not to give into this disease--fight it all the way--take vitamins, eat properly and have a postitive focus. I think Ihave had CFS for 18 years that was undiagnosed until recently when I became very ill. CFS is a very depressing disorder--I would be happy to let you know blood work that has been ordered for me and supplements that I take. Take care.
  5. teach6

    teach6 New Member

    Obviously not all of us are affected the same way. I am unable to walk even a quarter of a mile without becoming overwhelmingly fatigued. I cannot imagine running even that far, let alone walking/running for five miles.

    Just this morning I was thinking about how much my health has improved in the past nine months. At this time I doubt I will ever be able to run again. I wouldl be satisfied to walk a mile a day, to stroll along the beach again, to hike a mountain path.

    At this point I highly doubt that will ever be possible again. I've improved, but I seem to be at a standstill and I am just thankful to be able to do the things I am still able to do independently.

    Barbara
  6. Shirl

    Shirl New Member

    Hello, I already welcomed you by email, but am welcoming you again.

    Glad to see you found our board, and hope we hear from you again soon.

    Shalom, Shirl
  7. TiredbutWired

    TiredbutWired New Member

    I am not sure if I was already sick and the surgerys pushed me over the edge,but I am looking forward to standing up to take a shower and a walk without so much pain would be great.But I do get 15 minutes painfree in the pool.Glad you found us and we will help you through this,don't ever feel alone.Tracey
  8. garyandkim

    garyandkim New Member

    Many surgeries and stuff. Hope you decide to come here to post. It is great to hear from so many and to get info and help from one another. I find theat Ritilin helps me and Gary gets some help from Adderall. They are stimulents. hope to see ya around this is one great place.

    Welcome, Kim and Gary
  9. TaniaF

    TaniaF Member

    Welcome Cofinny to our board; as the other people said, don't be afraid to post questions--this is how we all learn from reading each other's posts.

    To Sweetmia--what blood tests did your dr order for CFIDS. I have been trying for years to get any of my doctors to order tests. Their reply is that if you have CFIDS--there is no cure so what's the point. My point is I would like to know what's going on for my own piece of mind. Yes I have FM and MPS but what else? I finally got our nurse practitioner to order an Epstein Barr profile and CBC. Doing test this week. Where do I go from here? Is there any meds for CFIDS or just supplements?
    Thanks all,
    Tania
  10. Sweetmia

    Sweetmia New Member

    My doctor ordered the following:
    Thyroid including TSH, free T4, free T3, TPO antibody,
    a.m cortisol
    ACTH
    Iron
    magnesium
    growth hormone
    DHEA S
    Cytomegalovirus
    Epstein-Barr Virus
    Ferritin
    Folic Acid
    Testosterone
    Vitamin B12
    Calcium
    Heavy Metals
    Estrogen
    Progesterone
    My results showed low estrogen and progesterone--no surprise since I had a hysterectomy and high antibodies to Epstein-Barr virus--again no surprise since I had mono in my thirties.

    The supplements I take are:
    multi
    B, C, E,
    MSM
    Malic acid
    Bovine Colostrium
    Calcium, Co Enzyme 10
    Magnesium
    Hope this helps--Mia By the way I am 46 years old--have CFS no symptoms of FMS.
  11. Sweetmia

    Sweetmia New Member

    I forgot to list that I had CBC--full blood count completed too. There are meds that can help with CFS.
    I presently take 600 mgs of Provigil for fatigue--it has been a tremendous help. At night for sleep I take 1/4 of a 30 mg tablet of Remeron--wonderful sleep. Mia
  12. tired42long

    tired42long New Member

    Hi! Just looked through your list of testing and wondered if your husband helped to sort through these or other doctor ordered. I guess i have to wonder if we don't have a somone looking out for us that is in the medical profession, if lots of tests are overlooked that may be a Key. Was this just normal protocol ordered by a family doc, Rhuemy, or other? As far as Provigil...what IS this? You sound like you have slowed down a little, but still are on top of this as far as energy renewal. I am hardly able to walk partway down the street and back. Can't drive much...too exhausted for many social activities involving kids. I am so looking for answers because I am missing so mych of life with them...they just don't deserve this. Thanks so much! Eileen
  13. TaniaF

    TaniaF Member

    I have had most of these tests--a few missing. Tomorrow I take the Epstein Barr profile. Do you get the sore throats and swollen glands? What does your doctor do about this? My throat cultures are always negative and I don't think I should be overdosing on antibiotics. I have already taken too many this year.
    My fatigue is moderate, but I always have this fluish feeling.
    Thanks,
    Tania