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-   -   Headaches and Fibromyalgia (https://www.quiltingboard.com/general-chit-chat-non-quilting-talk-f7/headaches-fibromyalgia-t170111.html)

QuickStitch 11-30-2011 09:03 PM

Well, after suffering most of my life and going to doctor after doctor, and being diagnosed with fibro too, I finally found a doctor that was able to help me find the real diagnosis. I am gluten intolerant, and it can really mess you up bad, which include auto-immune diseases and others to numerous for me to write about here. You can read about them at: http://www.glutenfreesociety.org. This is an incredible site for someone just to learn about it, and it can give you info to take to your doctor so that you can at least be tested for this. It took me 13 long years and I literally almost lost my mind, which is another symptom, if your sensitive to gluten, you can really be in trouble like I have been. Good luck to you all and I hope your flare ups stop.

gzuslivz 12-01-2011 01:06 AM

I, too, have fms and headaches. Both are difficult to treat, as each one of us is different and responds differently to medications, treatments, etc. I stay away from aspartame. Drink lots of water. I take magnesium and malic acid. The best advice I have been given is to pace myself. When I feel good, I don't do more than 3 things a day. We need to stop before we wear ourselves out, or we will pay for it for days. I have an incredibly understanding husband. He works full time and then comes home and does the majority of the housework, laundry and gives me very good massages which includes helping me stretch. I don't know what I would do without him. We must be proactive about our health care. We know our bodies. Find a doctor that will listen to you and respect what you say.

Tropical 12-01-2011 03:07 AM

I had weekly acupuncture treatments for allergies one summer. They did nothing for my allergies, but a benefit was that it did wonders for my fibromyalgia and osteoarthritis. Then my insurance company refused to continue to pay for the treatments. I am medically retired and my husband has incurable cancer so we can't afford acupuncture on our senior income. If your daughter can afford it or her insurance will cover the cost, it might be something she can try.

My oldest son was just diagnosed with both fibro and arthritis, along with restless leg syndrome (I have that, too) and his medication is causing him to gain weight and not feel well. He wants to try natural remedies because like me, medications cause severe side effects. We both get severe headaches and migraines.
Most often, I continue to work through my pain, but lately, I find that I just can't keep up with the dusting and vacuuming. Sometimes I just don't know where my day has gone because it is over and I have accomplished nothing. My DH is wonderful and always pitches in and helps and never complains about anything. Sometimes I just want to cry because he is fighting cancer and he still takes such good care of me. We take care of each other and try to laugh a lot. We hug a lot, too. We use the treadmill daily now that it is colder and our beach walks are out for a while. We drink our daily water requirements. We also talk about our conditions and Praise God for our blessings. I will include all of you with fibromyalgia in my prayers so that each of you can continue to deal with both the physical and emotional pain of this condition. I feel that this forum has been a blessing because when I can't sleep (Chronic Fatigue and insomnia) I can come here and visit with all of the wonderful members. :)

IBQLTN 12-01-2011 02:21 PM

Ditto for everything folks! I found what helped me best with the headache part of my fibro treatment was trigger point injections. When I told the NP I wanted her to inject the back of my head in addition to my neck, back and shoulders she agreed to try it. It worked great!

I was getting ready to have the next step, botox injections (laughed about my back looking younger than my face) when my insurance benefits ran out. I am now one of the uninsured, uninsurables who has to live with the pain. I dream about days when I could stay home and rest the fibro but we need to eat, so off to work I go because my job has no benefits, no sick time, no insurance. I'm counting the down the seven years, twenty-five days until I hit 66 and can receive medicare and social security benefits ... if there is such a thing by then.

The 'fibro fog' is the worst thing for me when I'm working. Some days it's just really hard to be productive. It was actually on this board that I first heard of "The Fog". Just knowing it is 'normal' for fibro made me feel better ... at least I know it's not my age! LOL

Prayers for all of you.

alikat110 12-01-2011 02:39 PM

I do have continually, too. Exercise IS effective tx for fibre....I'm living it!!!!!

greenini 12-01-2011 06:04 PM


Originally Posted by IBQLTN (Post 4740724)
when my insurance benefits ran out. I am now one of the uninsured, uninsurables who has to live with the pain. I dream about days when I could stay home and rest the fibro but we need to eat, so off to work I go because my job has no benefits, no sick time, no insurance. I'm counting the down the seven years, twenty-five days until I hit 66 and can receive medicare and social security benefits ... if there is such a thing by then.

I am really sorry you have no health care. it shouldn't be like that in one of the wealthiest countries in the world.
Unless the politicians in office or who are elected mess with things pretty badly, it and Social Security will be there to pay out at least 75% of what you should have gotten for a good many years. There truly isn't much of a crisis if the money that has been taken out of the SS fund and is now in US bonds in the general fund is returned to the SS fund! The fear mongers want SS and Medicare to go away so part of their campaign is to say things that aren't true. I think you might be ok, I forget when the lack of money hits, but last estimate I saw was at least 20 or 25 years from now and if they make a few tweaks like fully taxing all income, that might be enough to put it back on track.

lab fairy 12-01-2011 10:44 PM

Has vitamin D3 checked lately? Below normal levels the symptoms can mimic fibromyalgia and is easy to miss.

Dixiejar 12-02-2011 10:01 AM

I agree about having your daughter checked for Lyme Disease. However, the tests for Lyme are not accurate because Lyme spirochetes invade tissues and do not stay in the blood stream. A lab test may show that she has Lyme antibodies which indicates a past infection. I had an active Lyme infection in 1992. It has been a long and difficult road with various health problems. This link should get you to Dr. Burrascano report and treatment guidelines if she does test positive for Lyme Antibodies.
http://www.ilads.org/files/burrascano_0905.pdf.
Also, you should have her tested for the following viruses: Epstein Barr, Human Parvo Virus, and HHV-6, the latter has been found in many people who tested positive for Epstein Barr.
Eating a mainly alkaline diet will help with headaches and body pain
Plus Cymbalta can help will the pain relief.
We will say prayers for your family.

nancia 12-03-2011 12:35 AM

i've had fibro since i was 18. my mother thought i was just a complainy neurotic whiner hypochondriac. they kept testing me for ra and lyme and everything else, until one very intuitive dr started poking me and i was jumping out of my skin with pain. and that's when i was diagnosed at age 35. i'm 60 now and feel 102. but i look great for 102! lol. a little saggy baggy for 60, but when and if i get to heaven they will know i used what God gave me! 8-) my dr was very smart! altho he diagnosed me with fibro he did not put it in my records as such. if he had i could have been refused various health coverages in the future. also, when you have a disease that is not accepted as real there's no need to claim officially that you have it. i am able to take lyrica, and becasuse of it i can get out of bed most mornings, or nights when my schedule gets upside down from not being able to sleep. i've come to like keeping 'vampire hours'. but i can feel my depression increase from lack of light. i struggle to balance everything and end up usually with nothing. i had a headache for 3 months. the pain shot from the back of my head thru my left eye. nothing touched it but morphine. i don't want to become a prescription addict, so i try not to take it all the time and just live with the pain. now at least, the headache comes and goes. when i do sleep it's often for 4 - 12 hrs., and i often wake up with the headache. it's not the worst pain i've ever had, but it is very wearing. i can honestly say that this is one misery that does not love company-- i don't wish fibro on anyone! i never know what my next day or night, will be like. still, it beats the alternative, but some days, just barely. i have so many other things going on, that i find it pretty funny. for instance, i've developed a tremor in my hands. i have to be very careful when i eat out as it can look like i'm trying to start a food fight. peas go flying, or hopping across the table. my fork will suddenly hit my dh in the head, etc. not as bad as animal house, but pretty embarrassing. i try to laugh about it and eat at home. the harder i try to control it the worse it gets, so laughing about it helps me bring it down a notch. good thing i have a warped sense of humor! i've needed it! with your headaches, try ice if heat doesn't work. i have so much inflammation that i use more cold therapy than hot. everyone has to find their own way. good luck on your journey!

wvdek 12-06-2011 12:53 AM

I was diagnosed about 20 years ago after many doctors said they could not find anything and that it was in my head. Finally found a doctor who was trained in it.
I used to have it really bad and was on alot of diff. meds such as the Lyrica and Cymbalta. However the side effects for me were not worth it.
I had massages every week for years. chiro., and such. I still use the rice bags for my shoulder and neck area as that seems to be where most of my pain is centered now. DH massages me whenever I ask for it.
I stay away from artificial sweeteners, especially aspartame as that has caused me severe headaches in the past. My DH and DD get headaches from it too.
I also have to stay away from MSG which comes in more foods than you can imagine. My DH gets a headache for three days if he has it.
I changed from regular milk to Goats milk because of a lactose intolerance and I believe it has helped many other things as well such as my calcium intake.
The biggest change was the doctor who told me to start taking 1500 mgs a day of Feverfew to help the aches and pains. I have a bad flareup about once a year, but only lasts about a week if that.
The days of lying in bed for days on end, the depression, and most of all the pain are pretty much a thing of the past for me.
I learned I had to do positive thinking, alot of praying, and make myself get up and do a little bit at a time. Gentle stretches several times a day, staying flexible, and staying active are very helpful. The old saying of 'use it or lose it' applies to this disease.
I learned I had a diagnoses but that I did not have to give in to it. I was not going to let it ruin my life or keep me from doing the things I wanted to. I have earned my Phlebotomy certificate and finished all but one class for my degree as a Medical Assistant. Keep fighting it.


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