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fibromyalgia

goldencurlygoldencurly Posts: 2,385Registered Users
I've been diagnosed with FM and am a bit overwhelmed by all the info about symptoms and treatments.

Tell me what you know, have experienced or anything you think might be helpful to me as I work my way through this.

Thanks.

Comments

  • BoomygrrlBoomygrrl Posts: 4,940Registered Users
    Don't know a lot about it, actually...but my niece and my aunt have it. My niece is trying to get more help for it. She goes to physical therapy, but my brother is researching other treatments as she seems to need something more. Both my niece and my aunt complain of hurting a lot.

    I get achy myself, but I haven't been diagnosed with it. If I have it, it must be a milder form, because they are suffering way more than me. I think mine is actually circulation and blood sugar problems...which I read an article one time that they might be related??? But I don't know for sure about that.

    I wish I could provide more info than just the limited experience from what relatives tell me. I hope you get the treatment you need and hope everything goes well.

    Oh yeah, I met another woman who has it. She admits she is achy but she somehow is able to block it out enough to be able to work. She said she'd rather be in pain working than in pain not working. She thinks by working, it helps take her mind off of it. That makes sense. I'm sure everyone's level of pain is different. For my niece, she has to be homeschooled because she is unable to go to school...well, it's called "homebound." A teacher from her school district comes to the house a few times a week, gives her her assignments. Luckily, she's a bright kid and doesn't need extra tutoring, so it works well for her. But I know she wants to go to school and be like the other kids. Her school has been very nice about including her in activities, though. She's enrolled at a school, but just doesn't take her academic classes there. She goes to an elective at school when she's feeling better. It's sad. She's young and she's experiencing this!
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  • cymprenicympreni Posts: 9,609Registered Users
    I'm sorry. I don't have personal experience, just what I've seen in my MIL. She seems to manage it pretty well last few years. When she takes her meds, and stays active then she does great. When she sits around and does nothing but meds, it bothers her more.
  • sarah42sarah42 Posts: 4,034Registered Users
    My sister was diagnosed with fibromyalgia several months ago. She has suffered with muscle and joint pain, insomnia, weight gain, and hair loss. She was tested for all kinds of diseases, including PCOS and thyroid conditions, but they all came out negative, and the doctor finally diagnosed her with FM. From what I understand of it, that wouldn't necessarily explain all of her symptoms (like the weight gain and hair loss), so she may have something else going on too. I believe she is taking an antidepressant and something else (maybe Lyrica? I forget).

    Good luck with your health--I know it is very daunting to have a chronic condition.
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  • sew and sewsew and sew Posts: 3,443Registered Users
    I've never been officially diagnosed with it because going to the doctor is too expensive for me, and I don't have any kind of coverage. But I've researched a lot about it online and would describe the pain I feel in the same way, and it occurs at the points FM is characterized to occur at. Mine flares up around my period, and while hormonal activity and FM is linked, it's something that I haven't seen discussed as much. It flares up at other times of the month as well, just not as badly.

    A lot of positive stuff has been said about increasing Magnesium and Malic acid intake. I've been taking a Calcium, Magnesium and Zinc supplement (no Multi-Vitamins...for some reason my body doesn't take well to them) and I did start to notice a little less frequency of flare ups and a little less intensity when I did have them. So that's been much appreciated.

    What has REALLY helped me...and might actually indicate a bigger underlying problem (which I have been told by a doc friend is probably what's up) is Iodine. It's helped so much that I've been meaning to post a thread specifically about it and see if others have found it beneficial.

    Iodine used to be found in food at greater levels than it has been in the last decade or so. Breads use to be a good source, now the levels are significantly decreased. Iodized table salt actually has less Iodine than it use to as well. The tie in for me appears to be that sometimes people suffer from low thyroid output if they're lacking in Iodine, as it helps the body synthesize Thyroxine, a thyroid hormone. It's certainly not always the cause of hypothyroidism, but it can be.

    My mom actually wound up doing the research on that and going out and getting some liquid Iodine, which I take with some water. It's been probably about 5 weeks of taking it now. At first I thought it might be placebo effect since in general I experienced a lot more energy, and it was almost too good to be true. I've felt like I'm a 23 year old in an 80 year old's body for so long. Then I had less flare ups of what I am pretty sure would be considered fibromyalgia. Around/during my period I still had some flare ups but it was definitely a lot better than before. It's something that I could manage okay with if working 9-5 for example, and before when I was interning on that schedule physically making it through the day was very daunting.

    There's a lot of research out there about a thyroid and fibromyalgia connection, which is worth looking into. Hypothyroidism can be the underlying cause of a lot of symptoms that have been taken to indicate Chronic Fatigue Syndrome, FM and other illnesses. I'm just grateful to my mom for isolating what was likely a big part of my problem, and she came across that because she has hypothyroidism herself. What's weird is that I'm underweight and most people with HT are overweight as I understand it (there are some exceptions) but other than that the symptoms do seem to match up. Now I just need to notch up how much I exercise...now that more energy is there, and hopefully that'll help out even more.

    One other thought to throw out there is that the daughter of a friend of my brother takes Whey protein because of her fibromyalgia, which is pretty intense for age, think she's only 14...and that has apparently been really helpful for her.
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  • goldencurlygoldencurly Posts: 2,385Registered Users
    Thanks for all your responses - this gives me some new info to research.

    I had a bazillion tests performed, one of which was to check my thyroid, and it was fine.

    My doctor is open-minded and recommended some non-traditional treatment options along with meds. I am taking a bunch of supplements for inflammation and FM: magnesium, vit E, evening primrose oil, fish oil, borage oil, flaxseed oil, along with a multivitamin and extra B vits. I also am taking chondrotin (sp?) with something else in it.

    She also recommended looking into yoga for FM and massage, maybe even accupuncture, but I'm having no luck finding an accupuncturist locally.
  • sew and sewsew and sew Posts: 3,443Registered Users
    Thanks for all your responses - this gives me some new info to research.

    I had a bazillion tests performed, one of which was to check my thyroid, and it was fine.

    My doctor is open-minded and recommended some non-traditional treatment options along with meds. I am taking a bunch of supplements for inflammation and FM: magnesium, vit E, evening primrose oil, fish oil, borage oil, flaxseed oil, along with a multivitamin and extra B vits. I also am taking chondrotin (sp?) with something else in it.

    She also recommended looking into yoga for FM and massage, maybe even accupuncture, but I'm having no luck finding an accupuncturist locally.

    Well I don't want to harp too much on the thyroid connection because it could easily be something else going on with you. But I also had a blood test from Kaiser a few years ago and my thyroid seemed fine. Apparently a lot of people have tested fine in basic tests, and more comprehensive and targeted ones tell the real story. [URL="http://<br /> http://thyroid.about.com/cs/fibromyalgiacfs/a/fibrothyroid.htm&quot;]Talks about it a little bit[/URL].
    To them, if a patient has a normal TSH level, and especially if the patient's symptoms don't improve with replacement dosages of T4 (levothyroxine), her condition cannot possibly be related in any way to thyroid hormone. Recent scientific research, however, has shown this belief to be false. T3 is actually what's key and it's rarely tested.

    Studying up on FM is interesting because it's being actively researched, but at the same time that makes it kind of frustrating. Not too long ago it was finally recognized as not being psychosomatic...I feel sorry for the people who had it when that was the general lay person assumption about it. Now many researchers are jumping in and trying to figure out the base cause. It seems like everyday something is uncovered about it which is nice, but at the same frustrating for the people who have it and want to figure out the best steps to take in dealing with it.

    This newsletter/journal can be helpful. ProHealth profits off of sales of their supplements and such but they do publish genuinely insightful articles. ME/CFS and FM Brochure.

    It sounds like your doctor probably understands the nature of FM research, and it's nice that she's open about things. Good luck!! :)
    “It was only a sunny smile and little it cost in the giving but like morning light it scattered the night and made the day worth living.” - F. Scott Fitzgerald

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  • roseannadanaroseannadana Posts: 5,632Registered Users
    I was diagnosed with FM many years ago (early 1990?), when few doctors recognized it as a real disorder. It was only after I consulted a rheumatologist that it was finally given a name. It's not acute anymore and I rarely have flareups <knock on wood>. I'm curious, did you have psoriasis in childhood? Seems there is a correlation since they are both autoimmune disorders. Many with FM have also had mononucleosis.

    Anyway, visit fibrohugs.com for support and more education about the disorder. Treatment options are available and what works for some will not work for others. Best advice I can give is try to avoid stress, (hard, I know!) do some good stretching exercises (yoga as mentioned is very good), enjoy therapeutic massages or invest in a good therapeutic home spa.

    Good luck!

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