Hi, I'm new. / Are you taking any medication for CFS?

Discussion in 'Fibromyalgia Main Forum' started by urmiladd, May 20, 2006.

  1. urmiladd

    urmiladd New Member

    Hi Everyone,

    I'm new to this board, suffering from CFS for 8 years. For the past two years it’s been really bad and I’m lying flat most of the time with this terrible poisoned feeling all over my body.

    I was wondering if you could give me some advice in regards to medication that might give some relieve or a little energy. I live in Germany and doctors here seem to be even more ignorant, not suggesting anything at all, especially since all my blood tests and other check-ups are normal. Therefore I’ve only tried natural therapies, however, with hardly or no improvement at all.

    Due to CFS I’ve become pretty isolated, as I could not keep in contact with many friends and acquaintances and can’t go out anymore. I used to be a social person travelling a lot. Today is my 32nd birthday and instead of receiving emails from friends as I used to I only received birthday mails from online pharmacies and vitamin shops where I spend thousands of Euros over the past years. Fortunately, I’m not getting depressed about this. I actually had to laugh...

    Hello to everybody; and it’s been nice reading your postings.

    Urmila




  2. Marta608

    Marta608 Member

    Yes, CFS can be a very isolating illness.

    You don't mention a doctor or what, if any, meds you're on now. Sleep is paramount to healing, of course, so you want to do what you can to get good sleep. I suspect you aren't sleeping well at all. Diet is also important: no sugar, lots of veggies, fruit in moderation, whole grains IF you're not allergic to wheat as I am.

    As tiring as it sounds, your best bet is to keep reading posts, check out the Library here and read up. That said, don't submerge yourself in your illness. Find some things you enjoy doing - reading or taking slow walks in nature where you can breath deeply. Try affirmations of good health. Think positively. Avoid stress whenever possible. Tune in to your thoughts enough to be aware when you're thinking pessimistically or with anxiety. Change those thoughts to peaceful ones. Meditate if you can.

    I hope this gives you a start.

    Hugs,
    Marta
  3. KMD90603

    KMD90603 New Member

    Hi Urmila, welcome to the board. Although, I'm sorry that it's under these circumstances. Unfortunately, CFS can be extremely isolating because of the nature of the disease. And what's worse is that there is no magic pill we can take to lessen our symptoms. Many of us just end up suffering with the fatigue and kind of trying to ride it out.

    For myself, there's not much I can do when I'm relapsing. If I find myself feeling sick, I try to rest as much as I can. I listen to my body's cues, and take the time I need to recover. For the fevers, muscle aches, joint pain, sore throats and headaches, I'll usually take Ibuprofen. Usually, once I can get the fever under control, the pain ends up going away. So I take 2 to 3 ibuprofen for the fever and I feel better in that respect. But, for the fatigue, I just lay down and get some rest, just as you would do with any virus or infection.

    gentle healing hugs. I hope this helps. Oh, and Happy Birthday. It's my husband's birthday today too.

    Kim
  4. rockgor

    rockgor Well-Known Member

    for 25 years. I take an antidepressant for the depresssion. I used several and they all helped. Been on Effexor for some years.

    Have not found anything to help the other symptoms tho.
  5. Adl123

    Adl123 New Member

    Dear Urmila,
    Hello, and welcome to the board, and to a whole new group of caring friends. I know how isolating this illness can be. I've had CFIDS since at least 1970, and , while I was able to work for some years, now I am lucky if I can leave the house a couple of times a week.

    Do you think you could find an alternative or homeopathic Dr.? My diagnosing Dr. was one, and she saved my life.

    I take megadoses of supplements and I rest. That is what she told me to do, and it has kept me going for 13 years.
    I also eat fresh veggies, not too much meat, and drink only mountain spring water (8-10 glasses), and I keep away from all grains except Millet and Quinoa, because of the gluten..I meditate and go for acupuncture treatments, which have really helped me.

    One of the major supplements that I take is CoEnzyme Q10, It gives me energy. I also take antioxidents and probiotics, as well as red miso, for intestinsal health.

    Good luck to you. Please don't hesitate to call on us for support. We are always here.
    Hugs,
    Terry
  6. KelB

    KelB New Member

    Hi there. Sorry that you have to join our ranks, but you're very welcome.

    Unfortunately there is no conventional drug treatment for the fatigue of CFS. Terry has posted great info on supplements above and you can try a range of herbal/homeopathic approaches. Bear in mind that everyone seems to have their own personal sub-set of symptoms, so what works for someone else, will not necessarily work for you. You might have to try many things before finding something that works for you. I've been looking for 2 years and still haven't found what works for me.

    I would caution against things that are supposed to "boost" your energy, like caffeine drinks (coffee, tea, cola, Red Bull etc) and herbal energy supplements (guarana etc). These don't actually "give" you energy - they speed up your metabolism and give you a short-term burst of energy, but this energy has been robbed from your own (limited) supply and you may be sent into a crash as your system tries to recover.
  7. UnicornK

    UnicornK New Member

    In addition to LOTS of supplements, I also take 200mg of Provigil every morning (or whenever I get up. LOL). It is a medication for narcoleptics but he has had success with his CFS patients too.

    One thing you will discover. What works for one person may not work for another. So never give up looking!

    God Bless.
  8. urmiladd

    urmiladd New Member

    Thank you all for your reply.
    Terry, how much Q10 do you take? There are so many different dosages recommended and many times I made the experience that I took too much of something and then had a total relaps. But also I'm aware that my body is deprived of a lot and needs high dosages on the other hand. Presently I'm very down energy-wise.
    Also could you let me know more about the probiotics. What kind are you taking? I've heard that most products available only contain one or two kinds of probiotic bacteria and that they are actually useless as unless all bacterias are included no healthy balance can be created in the colon. That's why I havn't taken any (even though my digestion is one of my main symptoms) as my body reacts so sensitive towards anything I put inside.

    Also I was wondering if anyone has made the experience that a certain herbal product or supplement works a little for a while and then suddenly it has no more effect and whatever I do and however long I take it, it doesn't work anymore. I'm so tired of these repeated setback.

    Urmila
  9. dellalvn

    dellalvn New Member

    I am new at this site too. But not new at fibro sad to say. But I have yet to find a legitimate doctor that is willing to give me pain meds. I can pay lots of money to pain mgmt doctors who will dole out as much dope as I can stand but I want my family doctor to treat me for all of my ailments, including my pain. So I shall suffer until then, I guess. I apologize that I am unable to help you. But I hope you had a little less pain on your birthday. Della
  10. Adl123

    Adl123 New Member

    My Dr. prescribed 100 mg. of COQ10 , with each meal. sometiimes I go down to 75mg., depending on what I can find at the store.

    The probiotic I take is Primadophilus Reuteri, by Nature's Way. I had a reaction to regular probiotics, so I was told to take this, which is a powder and is really meant for children. It is so gentle that I tolerate it very well. It is a full clinical dose, and seems to work just great.

    I also take the red miso, which has really helped my colon. I make a chicken or turkey based vegetable soup and keep it on hand. Almost every day, for lunch I have a bowl of that, with the miso.(I make the soup with no salt, because the miso is salty).

    Alor vera juice has also helped my intestinal tract. I drank a cup a day, and now need only a cup a week, or so. Walgreen's and Kmart, and various other discount sotores sell a very good, natural, and high quality juice, for only $10.00 a gallon. They only carry one brand, so it's easy to find. It's usually on a lower shelf.

    Some herbs need to be taken on a schedule. For instance, Echanacia cannot be taken consistently. I take it one week on and one week off, just to make it easy for myself. I think the opotimum is 17 days on and several off. Maybe the herbs you are taking are in that category. Your local health food store should have one person who is specially tained to advise you. They are usually free and quite knoledgable.

    Good luck,
    Terry

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