S.M. asks from Dallas, TX on February 08, 2011
MIL With Fibromyalgia.
Hello ladies,
My MIL was diagnosed with fibromyalgia a few years ago. She still works, but it is really hard for her. She doesn't sleep well, has chronic fatigue syndrome, is depressed etc. etc. She is on an adequate medical regimen, but is continually doing worse because of her deconditioned state. She hardly moves at all when she gets home bc of her pain and fatigue. She has very few good days anymore. I want to poll the readers that have fibromyalgia...what things do you do that make your condition livable? If you exercise, what do you do? If you've made diet modifications, which ones have you made that you feel were beneficial? Are you in therapy? Keep a pain diary, have hobbies, surround yourself with family, support systems, patient forums? I know the medical regimens, I know what is suggested by medical literature and I know the demographic information. I would just like to know, from other fibromyalgia patients, where you have been successful while simultaneously avoiding narcotics? Thank you for your time and your input.
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So What Happened?™
Thank you ladies for all your help and suggestions. I am definitely going to do the reading that was suggested and make some suggestions for her. I just don't want her to become debilitated early when she is still pretty young (early 60s) and she is currently on that track. The gluten sensitivity is something I will need to look into. It might be a tough sell to get her to completely change her eating habits when she doesn't currently carry this diagnosis, but it sure can't hurt to try. Once again, Thank you!
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J.S. answers from Dallas on February 08, 2011
I can't answer much because I have a host of other issues besides fibro. We are also in a bad, bad period as well. However this website has great information for the ill person, the families, caregivers etc.
www.butyoudontlooksick.com
And I know you will great advice from the other ladies with fibro and those who take care of a loved one with fibro from Mamapedia!
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J.S. answers from Boston on February 08, 2011
My mother has been dealing with this for 15 years (she's 65) and she swears largely by alternative remedies. I honestly couldn't tell you what kind of supplement cocktail she's on now, but she researches this stuff all the time and is forever trying new things. There is no magic solution, unfortunately. I know that she swears by high-quality fish oil, vitamin D and b-vitamins and beyond that, it's something new all the time (iodine, whatever the key ingredient in Mucinex is, whey protein, vitamin C, probiotics etc.). She has done a yeast-free diet, gluten-free, dairy-free, etc. I think that all of her supplements and dietary changes do help her and make her functional (or at least don't make it progress) and it gives her hope and a sense of control that she can always try something else. She never stops searching for something better.
For exercise, she does swimming and walking, and very gentle yoga.
Probably the biggest difference for her is to know her limits and adhere to them. For example, she knows that she can't go to a function on a Saturday night and then do something on Sunday. More than one social event or work shift on a weekend would knock her on her butt for a few days. It's not worth the exhaustion and pain to push herself.
Many years ago, she was going through this at around the time she was going through menopause and the lack of sleep was just killing her. As much as she avoids conventional medicine (ironic because she's a nurse in a nursing home and dispenses meds all day), she did use a low-dose anto-depressant for a while, which helped with sleep and mood. I think she also used melatonin and St. John's Wort for these symptoms too.
Your MIL is lucky to have someone in the family try to understand her health issues who can validate and advocate for her. Sometimes just knowing that other people believe her and know that her pain and fatigue are real will be helpful. Hopefully you'll get clearer info from other sufferers!
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J.T. answers from Dallas on February 09, 2011
Fibro is a painful condition that due to the long term pain usually comes with depression as well. I see many patients with this condition as well as other autoimmune disorders (RA, Lupus, chronic fatigue, etc.). Has she ever been evaluated nutritionally? If not, that's the place to start.
In my experience these conditions just don't start overnight. They begin years, possibly decades earlier with digestive disorders. Everything from acid reflux to IBS symptoms. This is where the inflammation starts.
If you haven't read before, the gut is considered "your second brain". It actually contains more Serotonin (a neurotransmitter) than your brain. Serotonin is the main neurotrasmitter that antidepressants address. If you don't have a healthy gut then you cannot have a healthy body as your gut also contains the majority (80%) of your immune system.
I have had much success in getting folks to where they don't feel as though they need their medications anymore or need very little. I like to work with their MD's in an effort to heal the underlying CAUSE of the problem and not simply cover up symptoms with dangerous narcotics.
If this is something that sounds appealing to you, I would like to extend an offer to you and your MIL to come in for a consult.
You can go to my website to see what we are all about and give us a call if you want to explore this more.
Email me directly at ____@____.com if you have any further questions.
God Bless, Dr. Jenn
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G.B. answers from Oklahoma City on February 08, 2011
I use ice to minimize pain, do stuff in cool pools not hot tubs, use Tylenol for pain, and sometimes just sit and hurt.
She can take Styrofoam cups and fill about 3/4 full then freeze them uncovered. When she is having pain and inflammation she takes out 1 cup and peals away the top edge so the hump of ice is exposed. It's the part that puffs up while the ice is freezing since ice expands when it freezes. Then someone can take the ice cup and rub it on the pressure points and the cold reduces the inflammation inthose areas and also numbs it some.
If you don't know what a pressure point is please google it. They are all over the body in the worst possible places that get in the way of everything when they hurt.
Doing stuff in the pool at the Y is very helpful to mebecause the cool water acts like the ice but more comfortable and all over instead of just certain spots. The weight of the water against the skin also helps with swelling and other health issues.
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J.S. answers from Dallas on February 08, 2011
I can't answer much because I have a host of other issues besides fibro. We are also in a bad, bad period as well. However this website has great information for the ill person, the families, caregivers etc.
www.butyoudontlooksick.com
And I know you will great advice from the other ladies with fibro and those who take care of a loved one with fibro from Mamapedia!
1 mom found this helpful
M.D. answers from Boston on February 09, 2011
Hi, S.,
I have had Fibromyalgia and Chronic Fatigue Syndrom since I was about 23 and was diagnosed properly at 25. My symptoms waxed and waned for years. I would have to be careful but in general as long as I got enough sleep I was okay. However, as time went on and certainly after I had my children my Fibro has become worse. I completely agree with the Vit. D 3. That has eased a lot of my pain. I had to stop working in 2001 and have been on disability since 2004. I read Gamma G.'s post and realized that, although we all have the same diagnosis, different things work for different people. I, too, have done the ice in the paper cups. However, heat is what helps me the most. So, what I do is take a hot shower and then my husband will use the ice cups on me. I have to warm my muscles up first or they just contract even worse. I am on some conventional medicine but I have found massage to be a huge help. Yet, it is not very affordable. Right now I am taking a good B-Complex, Liquid Vit. D3, Probiotics (goes along with what Dr. Jenn was saying about our stomaches) and I am seeing an Integrated Awareness Practitioner. I have used acupuncture and homeopathic and Chinese Herbs, too. However, I am finding for me that this Integrated Awareness work is doing wonders for me. It is a long process, but I think it will be well worth it. If you google Integrative Awareness you can click on Practitioners and see if there are any in TX. I believe there are. I also use therapy because all the pain and fatigue and debilitation can become very depressing. Gentle yoga (Kripalu) has been great for me. I am unable to exercise at this time but will, I'm sure be well enough again soon. I also get a lot of comfort from forums. Someone else mentioned the website butyoudontlooksick.com AWESOME website! I have 2 young children which makes it really difficult but whenever I can I rest or sleep which makes me feel better. Oh! one more thing......Tiger Balm has helped me immensely. Some people prefer Arnica, China Gel, etc. But, for me I love Tiger Balm and you can buy it at any Drug Store. It's a rub on analgesic. Best of luck to your MIL and bless you for caring enough to ask questions and get info for her! M.
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G.H. answers from Chicago on February 08, 2011
Recently a Dr was trying to diagnose me with fibro but I don't think I have it or at least not that bad yet. After convincing him to let me have an MRI I ended up having a herniated disk (like I told him). But in the meantime when he brought up fibro, my MIL looked up a ton of stuff (she's really into living healthy & homeopathic methods). I read a huge article about fibro & the benefits of taking magnesium phosphate. Whole foods also has a magnesium spray, you spray all over your body, that she just bought me. Magnesium is a nutrient that most people are severely lacking.
My MIL has a book that I started reading to help my inflammation, Healthy Bones & Joints. I was recently watching Dr Oz, that I have never watched before, and he named a couple things on there that I just read in the book that are suppose to be excellent for our bodies.
I know your question wasn't about what I wrote but I thought I would throw in my 2 cents anyway.
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A.L. answers from Las Vegas on February 09, 2011
I second what Jennifer T. wrote.. she is right on the money in terms of looking at one's nutrition.. IF your mil can have that looked at , I think she could possibly feel so much better and heal from this condition. Definitely read up about it and you will find, much of this is about one's over-all diet .. which is good news because that means your mil can get better and gain control over body and even just knowing this might perk up her spirits. I wish you all the best..
please keep us posted !!
S.M. answers from Dallas on February 09, 2011
I'm reading a book called "Clean" www.cleanprogram.com by Dr Junger
he refers to this disease and references successful treatment with his program. I have other issues so I have no experience with Fibro but it is worth a look in my opinion!
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