FM AND CFS

Discussion in 'Fibromyalgia Main Forum' started by SHYPAGIRL, Dec 30, 2002.

  1. SHYPAGIRL

    SHYPAGIRL New Member

    I have fibromyalgia, and CFS. I am only 17, almost 18. Its really hard being this young, with this problem. I cant do the things I use to. Its very depressing, iam sure alot of you guys can agree, and relate. I am seeing a specialist hes telling me to exercise, walk regularly. I am so tired though, and its soo tough. I know that I need to get a job, but I dont know how I am going to do it, feeling the way I do. Do you guys have any tips and hints as to what has helped you through this?
  2. catgal

    catgal New Member

    Hello, and I'm so glad you joined us. I am 53 and have had FM/CFS since I was in my late teens. It is always so sad to hear of someone as young as you having to deal with such a debilitating illness.

    I would encourage you to read and educate yourself as much as you can about this illness and stay updated. Come to this Board often, ask questions, give responses, and look things up on the Search slot on the main post page. For example, type in Chronic Fatigue Syndrome, and it will bring up all the posts that have been written on CFS. But, don't let that stop you from asking all the questions you want.

    I am in a post-holiday FM/CFS flare now with all my other ailments flaring up at the same time.

    I know what it is to wake up from a fitful sleep and feel like a herd of elephants ran over you, and so tired you can barely move. CFS can have alot of other symptoms to it also, so read up on them. The more you know about this illness the better prepared you are to deal with it.

    Depression if a major synptom of CFS, and it can really get us down if we don't know how to handle it. It is normal for us to "grieve the loss of ourselves" for a while. Not being able to do the things we used to do; not being able to do the things we want to do; not recognizing ourselves anymore, and dealing with people who don't understand how we can look alright--but don't feel well.

    You will find a tremendous amount of information on this Board. There are many knowledgeable people here who are willing to help all they can. There are no strangers here--just fellow sufferers.

    You will also find that everybody has a different approach for dealing with FM and/or CFS. What works for one may not work for another. It is alot of trial & error to find what works best for you.

    For 30 years I spent a fortune trying vitamin regimes, various diets, herbs--an endless list. I got no relief. Then, I started taking 10mgs of Enada (which you can buy on this site) first thing every morning on an empty stomach. I didn't hold out much hope cause I had tried to so many things, and for the first 7 days--I saw no results. Then on the 8th day--it was like a Miracle!!! The fog lifted, my mind cleared, my attitude became positive, I physicially felt lighter, and as I continued to take the Enada--I started getting unbelieveable energy. It was incredible. It worked a Miracle on me. I could get up & go and do things again. I laughed easily; I smiled again; my sense of humor returned; life returned.

    I still had the occasional CFS flare, but they weren't as often and not as intense. I would encourage you to try it. However, some people on this Board have gotten amazing results from it--some got nothing. I think it depends on what specifically is going on in your body.

    Others will be along to add suggestions and helpful tips.

    I was doing much better on the Enada until two years ago when I was diagnosed with degenerative disc disease which has caused me a great deal of pain and disibility. The strong medications I take for the pain seem to override the benefits I was previously receiving from the Enada. So, now, most mornings I wake in pain and drag myself through the workday. However, to me my work is important. I'm a psychotherapist and helping others takes my mind off all my aches & pains and gives me a sense of purpose, accomplishment, participating in the world, and being useful. Work keeps me going. I'm afraid that if all I did was stay home all day that I'd just focus on all my aches & pains and become more depressed.

    You're young with the Adventure of Life just beginning to unfold for you. There is a difference between "accepting" this illness and "giving in" to it. Make the best of your good days and rest on your bad days. If you don't already have one--find a good physician who is knowledgeable about CFS and how to treat it. Though exercise and walking regularly is important, it isn't enough to treat this illness. You need good, restorative sleep. Find something herbal like melatonin or valerian that will help you sleep or get a script from your physician. You may also want to cut back on sugar and caffeine. Make your bed a Wonderful place to sleep & nurture you. Lots of comfy pillows to support you. Create a bedroom that feels relaxing, stress-free, and dreamy....a place that feels good to be in.

    Come to the Board as often as you like and ask all the questions you want. There is also information to help your family and friends understand this illness. Take care of yourself, and let us know how you are doing. Best Wishes, Carol....
  3. pam_d

    pam_d New Member

    I can't add much to Carol's excellent advice, but I just wanted to welcome you to our world! Please read & post often, I've only been here a few months, but I nearly everything I've learned about FM, I've learned either from reading recent books, or from this board (as opposed to knowledge gained from "informed" doctors---haven't met many of them yet, though they are out there!) As for exercise, it is literally one tiny step at a time for us---many here have built up to an impressive amount of exercise, but begin slowly. I'm so sorry you are having to deal with this at such a young age---I'm hoping that others here who are close to your age will respond and offer helpful suggestions & support, too, and I'm glad you found this site, you can learn a lot here!

    Hugs,
    Pam
  4. Mikie

    Mikie Moderator

    Welcome to our board. I'm so sorry for the reason that you are here, though. I have both FMS and CFS and of the two, the CFS is the more debilitating.

    Exercise does help FMS, but if you are fatigued, it can set people with CFS back, so be very careful to not overdo it. I got some stretches and flexes from physical therapy which helped me even when I was bedridden with the CFS. They can be done in bed.

    We have had others in their teens here and some here have children diagnosed with our illnesses. My Mom had FMS and both my daughters have it.

    This is an excellent place for info and you need to learn all you can about your illnesses so you can be involved in your own healing. We can't depend solely on our docs to help us.

    Love, Mikie
  5. evileva

    evileva New Member

    I agree with the other gals here, learn everything that you can about cfs and fibro. I have both also and I have read everything that I can about these illnesses. (Even though I have trouble remembering them, lol) I think that with these illnesses, knowledge is power. I hope that you can find a good physician who is up to date on both of these and if you have any questions, this is the place to come and ask. There are a lot of good sites out there, so good luck.
    Eva
  6. Shirl

    Shirl New Member

    Hi Shypagirl, welcome to the board, but so sorry to hear you have these two illnesses. I have Fibro, not CFS, but I do have some cross over symptoms, especially the fatigue. I can't imagine working with this.

    You have already received such good advice, that I just stopped to welcome you.

    Feel free to ask questions, we have some great knowledgeable, friendly people here who will try and help you have a better quality of life.

    Again, welcome!

    Shalom, Shirl
  7. SHYPAGIRL

    SHYPAGIRL New Member

    Thank you all for taking the time to help me out. Its just very rough, as I am sure you all can imagine. Thank you so much everyone! :)


    God Bless ..


    ASHLEY
  8. joannie1

    joannie1 New Member

    I just wanted to welcome you. I feel so bad that at such a young age you are having to deal with this. My heart goes out to you. I wish there was some magical cure to offer to you. I hate seeing people at such a young age having to deal with this.
    I hope that you feel welcomed here and feel free to turn to the board with anything that you need help with. Or you just need to vent. We are always here to try and help one another even if it is just for some support.
    Take care and welcome again.
    Joannie
  9. SHYPAGIRL

    SHYPAGIRL New Member

    How is everyone here? Today was one of my better days, except for the migraine. We are suppose to get 4-8 inches of snow, and that is my favorite so I'll definately be outside playing even if I pay for it the next day. Hope you all had a happy new year! :)


    God Bless ..


    ASHLEY