How different/simular are our symptoms

Discussion in 'Fibromyalgia Main Forum' started by auntcon, Sep 7, 2005.

  1. auntcon

    auntcon New Member

    I've just heard a ton of info from a loving relative that would really like to help me.

    You know the kind--read an article or two talk to a person that has fibro and you're an expert.

    How can anywone really know anything about how to help others with this illness? I really appreciate everyone here because you just tell what has helped you. Several of the themes -- allergies, sleep problems, tender points,etc. have helped and then again a good night's sleep is like chasing a butterfly for me.

    Anyway, do you agree that one person has no idea what the other person's degree of pain, sypmtoms etc can be or can be compared?

    My uninvited helps were to get out of bed and get a shower 1st thing. (Some days that's possible some days I get the kids out of the house and go back to sleep)
    OR massage... sometimes if you touch my back I'll knock you into next week... if I do it it's better.

    It just makes stress on a good relationship because of all of the HELP I get.

  2. Rose_Red

    Rose_Red New Member

    Try reading up on it. Carry a FMS book with you everywhere you go. then you can say that the help is either supported by the latest research or not.

    I know it's irritating but try to rmember that these people love you and are trying to help you. It's very simple to say "Thank you but so-and-so does not have fibro as severe as mine." Do yo ureally want people to stop because you might find a few gems mixed in with the well-meaning advice. It's OK to tell people that they are helping a little too much sometimes.

    I have to disagree that people have no idea about pain levels and symptoms and such. Understanding, knowing, living through it is one os the things that bind us together here because the rest of the world really doesn't get it.

    Massage done correctly by a trained professional is one of the greatest things you can do for your body. Doing anything the second you jump out of bed is just asking for too damn much. I can't even raise my arms up to wash my hair till the morning stiffness eases off.

    Obviously you feel as horrible as a lot of us here. We really do understand. Finding others that are also living through it can be very helpful if you let it. You're not alone. We all suffer to varying degrees here.

    Have you tried any medication for sleep? Not too many of us can sleep without pharmiceutical help. Have you tried Melatonin? you can get it in 300micrograms up to 5,000 micrograms. Mt 9 yr old takes the 300mcg and I take the 5K mcg about an hour or two before bed.

    Melatonin is awesome because it breaks down into seratonin while you're sleeping so it also helps repair daily muscle damage.
  3. pearls

    pearls New Member

    I cannot get along without my two books by Dr. Devin Starlanyl, who herself suffers from both fibromyalgia and chronic myofascial pain: 1) "Fibromyalgia and Chronic Myofascial Pain: a Survial Manual," and 2) "The Fibromyalgia Advocate: Getting the support you need to cope with fibromyalgia and myofascial pain syndrome."

    They are both very large paperback volumes that you can get least expensively on Amazon.com. Both of mine are all marked up and filled with sticky notes. I use them like Bibles, returning to them again and again, finding something new every single time. As soon as Dr. Starlanyl comes out with new editions, I will be lined up along with everyone else to buy them so I can keep upp with the latest. That will be true even if I have to eat only beans for a month!

    The first book deals with the disease, the factors that perpetuate it, and how to deal with it. The second has to do with those "helpful" relatives, friends and associates, as well as the various members of the healing profession, who often don't understand this DD, either. (Don't you just love the ones who tell you how tired THEY are, and how many of your symptoms THEY share - invalidating what YOU have while they do it?!)

    Dr. Starlanyl's website is easily found using a Google search. She has some up-to-date articles there, including ones you may copy for your, hopefully, willing doctors and therapists. These articles are about fibromyalgia as it pertains to various medical specialties. My orthodontist skimmed through the lengthy article I gave him and asked for a copy, exclaiming, "This is good stuff!" That copy was meant for him, anyway, but he hadn't heard that part, I guess. (I must warn you, though. Some of my health workers have accepted their articles with a look that pretty much tells me, "Yeah, yeah, yeah..." though they have sometimes accepted them with more enthusiasm after they've come to know me better. I hope that works for all of you, too.)

    Always happy to share about books,
    Pearl
    [This Message was Edited on 09/07/2005]
  4. pearls

    pearls New Member

    Once in awhile, a relative will give me a small brochure she picked up in some clinic 200 miles away from here, about Doctor So and So, who has set himself up as a FMS specialist. But one quick look at the brochure shows he is just a Local Yokel who, favorably - at least, wants to help FMS patients - but that it most assuredly won't do ME any good to travel 200 miles to see him!

    Best wishes,
    Pearl
    [This Message was Edited on 09/07/2005]
  5. auntcon

    auntcon New Member

    Thank you for the input. I LOVED the response with the big words I'LL use that.

    I know how well intended these comments are-- they think I'm going to get better. I'm very confident that at some time THEY will come up with something to help us.

    I'm going to try the Melatonin I had no idea that it turned into Seratonin THAT will help as I need help in the area of sadness and depression.

    I'll also check out the books. I have done a lot of research and go to a local support group and all of these things help. I just get tongue tied and can't get it through their heads that I'M NOT being lazy.

    THANK YOU for your replies and encouragement.
    Connie