its all so confusing!!!!

Discussion in 'Fibromyalgia Main Forum' started by custard, Sep 18, 2003.

  1. custard

    custard New Member

    I'm sorry to post so soon after joining the group but after being DX for only two weeks i'm finding it all really overwelming...

    my consultant basically said all that i could to to help myself was to loose weight excercise and eat well.......take amytriptalene(sp) to help me sleep and that there was no need to go back and see her!!!!
    After reading some of the posts on here i'm finding it all so much to take in............can any one reccomend a'beginners guide' to fms available in the uk so that i can be pro active and try to improve my standardof living

    Any advice would be greatly appreciated

    Thanks in advance
  2. kathybwi

    kathybwi New Member

    Hi Catherine,

    There are several degrees of this illness. Some of us are worse than others. Some cannot work some can. Even some of us have pain everyday and others can go days with relief. But if all your Doctor gave you was an antidepressant I think I would find another doctor. I am in a lot of pain and I am very tired all the time. I am trying some new meds right now. It really does take a doctor that knows what FMS is and how to treat it. But don't get overwhelmed. Take it a day at a time. I just wish I had an option of not working but I live paycheck to paycheck and make more money than my husband so I have to suffer all day at work until I get to go home and sit down.

  3. HuggyMummy

    HuggyMummy New Member

    I can recommend a book poblished in UK: Living with fibromyalgia by Christine Craggs-Hinton. It should be available at most large bookshops and at Amazon UK.

    Also do a UK websearch for Arthritis Research Campaign. They do a very good leaflet on fibromyalgia, which can be printed off or ordered from them.

    As for drs, sorry, I can't give you much help. Those on the NHS seem to know less than thier patients, and most seem to deny its existence. I know there are private drs, but unable to afford them myself. Others may be able to supply you with names. (Try doing a search here for Dr Hyams, I know he is one that has been mentioned.) I have yet to get a dx for FMS/CFS that I have suffered since childhood; am now 42 so just about given up hope!

    Hope this info helps

  4. tlc8858

    tlc8858 New Member

    is one of the best books I have come across yet. It really goes in to detail on every type of treatment and some common thinking patterns of doctors and family members. It is simple and easy to understand and answered so many questions for me.
  5. Susan07

    Susan07 New Member

    Don't apologize for posting questions, that's what we're all here for. You'll get some great help.

    The amytriptalene will help you sleep and that is one of the biggest helps your body needs. The books others mentioned are good to help you become proactive. There is also gobs of info on the internet. Plenty on this site as well. If you do a google search for Devin Starlanyl she has a lot of info and checklists and letters for doctors, etc.

    Most important, slow down, do things in small doses and keep looking for a doctor that will help you or go the natural way - you'll get plenty of help from members here.
  6. carole128

    carole128 New Member

    Hi Catherine
    My sister in UK must have the same doctor! My sister is short and overweight and in terrible pain. She is a cook and stands on her very painful feet and legs all day. She is waiting for an MRI scan. Her Dr tells her to just keep on working because she needs the exercise. I got the impression that he thinks because she is overweight it's her own fault. I live in New Zealand and have a understanding doctor. I told my sister to find a nicer doctor.
    There are 100's of good doctors out there, just keep looking until you find one near you.
  7. Shirl

    Shirl New Member

    I am not in the UK, but I must agree with the others here, you need a more compassionate doctor.

    As for as weight is concerned, I have FM now for over twenty years, and I have never been over weight in my life.

    Weight has nothing to do with the pain, I was 100lbs when I got this, and I am 120lbs now. The pain is no more or less where weight is concerned. Thats a bunch of bull!

    Exercise is good, but most of us can't do anything strenuous, the best I can do is walk, and not too far at that.

    Eating well is a good idea, fast food, sugar, white flour, and artifical sweetners, soda drinks, are really not good for us or anyone else for that matter.

    You can go to the 'Home' and 'Library' links at the top of this board, there are all the latest research on FM/CFS there. That would be a good beginning for you to start with.

    As for a good book, I would recommend; 'Fibromyalgia & Chronic Myofascial Pain Syndrome (a Survival Manual)' by Devin Starlanyl, M.D.

    Devin has four books out, all are good, the one above to me is the best, but I have all of her books. She also has a website full of information too.

    She is a doctor that suffers from Fibromyalgia, and had to give up her practice because of the illness.

    We have some of her articles here at Pro Health, just type her name in the search box on the 'Home' page to read them.

    Please feel free to ask all the questions you have, thats what we are all here for, to help and support one another.

    Take care, and let us hear from you often, and don't be overwhelmed with all of this, just take it one day at a time!

    Shalom, Shirl
  8. Mikie

    Mikie Moderator

    First, welcome to our board. Second, Sweetie, you never need apologize for posting. We welcome the opportunity to help.

    Yes, it is overwhelming in the beginning. The initial learning curve is HUGE. Don't worry about it. You'll be very knowledgeable in no time. You've done the right thing by coming here. We have very knowledgeable people here and they are very supportive and caring too. Read posts and use the search feature if there is something in particular you want to know about.

    Our library here contains more than 3,000 articles written by some very knowledgeable physicians and researchers. The library also has a search feature. You can get books from the library or buy them online or from your bookstore. Don't discount articles on CFIDS as there is so much overlap in symptoms that CFIDS info can be valuable to those with FMS too. Many with FMS also have CFIDS even though it is not always diagnosed.

    Find a better doc if you can. There is a lot which can be done for our illnesses. Lazy docs and those who are not knowledgeable are the ones who say there is nothing more to be done.

    Finally, good luck to you and don't be too anxious about getting up to speed. It will happen very fast.

    Love, Mikie
  9. Fibrolady37

    Fibrolady37 New Member

    What have you been dx with catherine?
    I have been Cfs,Fibro,Asthma,Multiple allergies,Arthritis & have had them for 7years.
    I was bedbound for 3 years & it was pure hell.
    I had a 2 year old baby & I was soo scared that I wouldnt be able to look after her,but I did it!.
    She"s now nearly 10 & I"m soo gald I "ve been blessed with this gorgeous child,she"s my world.
    Just rest as much as you acan because you"ll be soo tired.
    soo good to hear from you.
    Very soft hugs sharon d