I need your guys help

Discussion in 'Fibromyalgia Main Forum' started by amy24co, Oct 8, 2006.

  1. amy24co

    amy24co New Member

    I was diagnosed with FM a year ago and since then have done alot of research on it. I feel I am pretty knowledgable on the subject somewhat. My roommate, Lindy, has had serious issues for the last 3 months now. They are sending her to a rheumatologist in a few weeks. Her symptoms cannot be explained it seems. what do you all think? I count alot on you guys..
    Fatigue, achiness all over her body, serious weakness when lifting arms to even change the TV station on remote. She has fevers periodically, has lumps in her legs, near knees and on arms. they feel like these small nodules. to touch them is painful. She cant sleep, tosses and turns, cant keep her legs still. Has cramping made worse at night. Her bloodwork showed high ferritin levels, but they ruled out so many diseases. They ruled out rheumatoid arthritis, bone cancer, hemachromatosis and others. The doctor originally said she in no way had FM. I cant help believe she's wrong. She has all the symptoms. I guess they would still have to rule out MS and ALA. she is pretty worthless. Barely manages to work. She tried to work in the yard saturday and was left in exhaustion and pain.......can you all give an opinion???? her appt. with the rheumy isnt for a few weeks. This poor woman thinks she's losing her mind.
    thanks to all you great people out there! :)
    Amy......Denver, CO
  2. findmind

    findmind New Member

    Wow! They have ruled out some really important things, and I'm no medical person, but think she needs more tests; there is something going on here.

    It may be CFS attacking her all at once, or maybe Lyme...she really needs to be tested for Lyme I think. Is Lyme a problem in Colorado?

    Tell her to trust herself, no matter what the drs. "rule out" and to keep searching. Maybe make an appt now to see an Infectious Disease dr....that way, if Rheumy says, No, that's not FM, she'll have an appt already.

    Maybe she should try to do less activity for awhile, to see if these symptoms run their course and see how she feels. Yards can wait; she may need to rest to see if she feels stronger by doing so.

    Tell her we care and hope she finds answers to this puzzle soon...someone here may have more pertinent advice, I just want to encourage her to keep trying to find answers!

  3. amy24co

    amy24co New Member

    Do you think something in this house we share can be making us ill? I never considered that. The house is 100 years old and out here in colorado it's consistently dry and there is no humidity. Dusty, ever so dusty. I never had allergy problems till I moved to Denver. I'm originally from Ft. Lauderdale where I was very very healthy. I forgot to mention that Lindy has crohns disease also. She's had that most her life and has been living a fairly normal life after a illeostomy 25 years ago. she is 58 years old.
    what are the symptoms of lyme disease? isnt that from a tick bite?
    I appreciate all your help and anything else you all can come up with would be greatly appreciated! we are at a loss!!!
    love to you all..... Amy
  4. wkirk87

    wkirk87 New Member

    No one can say for certain yet, of course, but given that she's female, 58 years old, they've ruled out so many other things already, and all the symptoms you listed I would say it's probably CFS, FM, or both. :(

    4 times as many women as men develop CFS/FM.
    Most people that develop CFS/FM are between the ages of 40-60.
    The diagnosis for CFS/FM is made by simply ruling out everything else.

    Nonetheless, continue being tested because there is a chance it's not CFS/FM and she could be cured of it!!

    I also agree that it's extremely important she be tested for Lyme Disease. It's probably also a good idea that you and her see an Infectious Disease Specialist (Doctor) for the reasons previously mentioned. :/

    Good luck!!
  5. carebelle

    carebelle New Member

    Oh My, Amy and Roomie

    I have been seeing a lot on TV lately about the affects of Mold on our body's .If you live in an old house you need to have this checked out.
    Mold can kill you and make you Really sick. Your symptoms are very much like what we have from CFS/FM .You also should bring this thought to her Doctor and have things checked out. Tell him the home you live in is very old. ANY kind of water damage within that home can cause the mold damage .

    Let us know what you find out. I hope things get better for both of you.
  6. cct

    cct Member

    I am in Denver too!

    Do you know that we have a Chronic Fatigue/Fibomyalgia support group that meets on the third Saturday of the month at National Jewish Hospital? Our next meeting will be on October 21 at 1:00 pm in Heitler Hall. You, and Lindy, are welcome to join us. We will be watching two DVD's; one from from Dr. Klimas (Florida) and one from Dr. Bateman (Utah).

    Also, I wanted to mention that a couple of years ago, I read an article about mychoplasma infection and its relationship to CFS/FM and Crohn's disease. The article was published in the September 2001 issue of Alternative Medicine magazine.
  7. amy24co

    amy24co New Member

    Thanks for the info on the fibromyalgia support group in Denver. I will definitly be coming to that. How often do you guys meet? I think I'll wait till my roomates appt with the Rheumy on the 23rd before I go. I sure hope they can help her. She's a mess! She couldnt even go to work today.......up all night with severe leg cramps and arm cramps! fever too......I am stumped! thanks to all of you for your support. This is soooooo hard.....
  8. amy24co

    amy24co New Member

    sorry about the bump....just was hoping cct would read this.
    where in denver are you? I'm in englewood.....
  9. wkirk87

    wkirk87 New Member

    I hate to be the bearer of bad news, but when you see the Rhuemy, make sure to mention how she was up all night with leg cramps and arm cramps and the results of this "test."

    I'll explain it, but I must warn you that it's best your roommate NOT read this message of mine because I STRONGLY expect her to start having panic attacks if/when she does (and you'll see why).

    Fibro Myalgia is basically Arthritis of the muscles, and that's why I'm suspecting she might have it based on that description of yours. Furthermore, some people with Fibro only get about 12 minutes to 2 hours of sleep per night, and not necessarily just because of the pain (which your roommate hopefully just missed sleep due to the pain and doesn't have the immense sleeplessness symptom of Fibro!!).

    What you want to do now with your roommate, to test if she has Fibro Myalgia and CFS or just CFS, is set up an appointment for your roommate with a Trigger Point Massage Therapist!! That is by far the most beneficial treatment for Fibro Myalgia, and if it helps your roommate's physical pain significantly, she has Fibro Myalgia. If it just helps her relax and "feels nice" like a massage would for a healthy person, then she doesn't have Fibro Myalgia. This is the "test" I referred to in the first paragraph of this post. Does this make sense?

    Here's a copy-paste explaining Trigger Point Massage:

    "Credit goes to HayleyCole for posting this:

    'Hi peacebaby:

    Here's a copy of one of my standard posts on myofascial pain.

    I can't tell you what a huge difference learning
    trigger point massage has made in my life!!! I'm able to control the pain 90% of the time without pain meds. I truly believe in my case 95% of my pain is/was myofascial.
    It sounds like you have chronic myofascial pain syndrome going on.

    If you aren't familiar with it, it's where the muscles get knots in them that refer pain to other areas of the body. The knots are called trigger points and have to be deactivated with massage.

    I used to have soooo much pain in my legs I couldn't sleep. My feet burned, my Achilles tendons throbbed, had a dull ache in my calves, back of my knees burned, and stabbing pain through my thighs. And that's just the pain in my legs!!! Once I learned trigger point massage, and started doing it, I've been able to keep the trigger points under control and the pain is pretty much gone.

    Look for The Trigger Point Therapy Workbook by Clair Davies along with either a percussion massager [two-headed], massage balls, Thera-Cane or something similar. I find the percussion massager the easiest as I don't have to worry about finding specific muscles, if it hurts, I massage it.

    True confessions: did have to take half a Flexeril last night as I managed to activate every TP from my ribs on down the other day when I tried a new 'move' on the rebounded. They just weren't going to give up the ghost. Did work them half to death before bed, so between that and the Flexeril, am feeling fine today. Won't be trying that move again!!!

    If you're interested in reading more, check out my profile.

    hope this helps.

    Good luck!!