Fibromyalgia Community

I've been diagnosed with Fibromyalgia for several years now and I'm sure, beyond doubt, that I've had it for MUCH longer than I've been diagnosed. One thing I learned was there is a difference between migraines and "Fibromyalgia Headaches" (which, by the way, are only recently listed as a "symptom" of Fibromyalgia). If your headaches start in the back of your head, it's a Fibro headache. If it starts at one of the frontal lobes, it's a migraine. (I found this out when my Neurologist looked at me like I was crazy when he asked me which side of my forehead my migraines started on).
When I was originally diagnosed, I was tried on Savella. It was still a brand new drug on the market. Almost NO pharmacies would even order or carry it. When I found a pharmacy that would, my insurance refused to cover it because of the cost. I was able to get physician samples for a while. I didn't notice it made any difference in any of my 'fibromyalgia pain or fatigue' and seeing as it was near impossible to get and keep a running supply, I was weaned off of it shortly after. However, whenever I spoke to any physicians, including a Rheumatologist about the medicines I've tried, I told them "The only thing I really noticed about the Savella was that I didn't have a SINGLE migraine the ENTIRE time I was on it." And every one of them told me the same thing; that I was crazy; That I didn't know what I was talking about; Savella isn't a migraine medication - But NOW, Years later, I find out that I didn't have *Migraines*, I had FIBRO Headaches.
I have found NO information in my years of searching to suggest that Fibro is genetic or genetically Linked BUT, I have found studies that *SUGGEST* it CAN be ...(Searching for the correct word) "LINKED"?? to Low Vitamin D3 counts - Along with a Multitude of other horrific conditions. (Check out the official website for Vitamin D3 for complete, accurate and proper information). This is actually HOW I ended up Diagnosed. The test scale is 20-100 with 80 being the 'Optimal" level. I was doing a research paper on the Pros/Cons of "Avoiding sun to avoid skin cancer/Lack of sun and lack of natural Vitamin D3 production in the body" - What I found out astounded me and it just so happened it was time for my annual physical and bloodwork. I ASKED my physician to check my Vitamin D level. Mine was a 6. That's NOT a typo. Turns out my sister also has a low level and within the last year was diagnosed with Fibro. I don't think it's Genetic. I think it's circumstancial. Most people have become Vitamin D deficient b/c we no longer work out in the fields doing hard labor all day in the sun. We work in buildings with no windows or UV blocked glass. Even the windows on our cars are UV ray blocked. And without the UV rays, we don't make Vitamin D. I'm not saying Vitamin D is the CAUSE, I'm just saying, I think it plays a part. I'm willing to bet you have a low count. And the farther you live from the equator the higher your chances of a low level. Most physicians have started testing now. It's come to the forefront and gotten attention. Unfortunately, getting your count up doesn't seem to help any either. I had hoped it would. I think it's a 'too little, too late' thing but, still - get tested, and if low, talk to your physician about a suppliment. You also cannot absorb calcium without Vitamin D. You can drink all the milk you want or take all the Calcium suppliments you want but it won't make a difference if you don't have the Vitamin D. Also know that there is a difference between D3 and D2. You need the D3.
AND..... I AM NOT A PHYSICIAN... Just someone who's had Fibro a REALLY long time, with a severe, advanced case, who has done a LOT of research, looking for answers and relief.
I hope this has helped - and I freely admit that ANY of the above COULD be totally incorrect. But, I have written what I fully and truly believe to be 100% true from my own personal experience.
Best wishes and good luck
Alix

Hello Courtney and Alix...and welcome...MiMi in NC...I am glad you both have found this unique FM support group and I am sure you will find some good info here..

Alix, I would like to encourage you to try to space your long posts next time...some of us...(me for one) have eyes problems and it is very hard for me to real them when they are so long...

We have discussed the genetic issue and yes...I think this is possible. So with reading your post Courtney, I guess the common person would be your father and his side of the family. So are there any others on your dad's side who also has FM? I also feel like stress can be a factor in FM also...I know that stress has certainly caused me to have more issues...and stress is so hard to try to control.

There are all kinds of *tools* that you can try...some are very simple...learning how to get enough sleep..I take a hot shower using lavender bath salts which help my body to relax so that I can sleep better... and doing gentle exercises and stretches each day...learning how to pace, pace and pace even more is also important....drinking plenty of water every day and watching what we eat is also important..keeping stress down...(I think this is my hardest one to deal with)...

Using a heating pad when needed and using Stopain Spray as needed (found at walmart)...perhaps finding a memory foam topper for your mattress might improve your sleep...I tried this but it did not make a big difference for me...I have slept in a recliner now for years...to limit my aches and pains. I do not like this especially but it sure does make a difference for my body.

I am one of the FMers here who has learned how to *control my FM pain* by taking vitamins and supplements and doing other things as well......and yes...Vitamin D is important...it does take time and effort though to get the level back within the *normal range*....it took me well over a year to do this...and it did make a BIG difference for me...low Vitamin D can cause additional pain and it can also affect other illnesses as well...I would suggest that you do your own research on Vitamin D....as I am not sure that all doctors understand the process and what it takes to get your levels back up within the normal range..

I also take magnesium malate or Fibro Response, Omegas, Super B Complex, Calcium which I think helps me...plus others since I also have other health issues...
I have found nothing which I can say has helped the chronic fatigue that I have....but I continue to try things for this as well...my fatigue is worse than the pain.

Again any change in whatever you do takes time...there are no quick fixes...

I hope that both of you will continue to hang out here and post...I am sure you will soon find something that will help you cope better.



MiMi

I believe fibro is hereditary. After learning more about fibro, I know that my Mom suffered from it - although it was never officially diagnosed. She also suffered from RA.

I know in educating myself by reading of different books on fibro that some Drs suggest that it is hereditary.

FM is defintiely genetic in my family. My sister also has it. Interestingly enough, I believe it also comes through my father. He has very similar symptoms as my sister and I and his mother was also diagnosed with it.

Thank you for replying. I will definitely look into the Vitamin D issue and ask my doctor to check my level. As far as the fibro headaches, that's exactly how mine are and i had the same problem trying to get the doctors to understand. They almost had me believing that it was all in my head. Thank god I finally got a doctor that believed me and took the time to look further into my symptoms. I'm a pretty optimistic person but being only 22 years old and knowing this will be a lifelong condition makes it very hard to keep up with the positive attitude. I haven't suffered from any serious depression just the occasional "feeling down" for a day or so out of the month, I just need to try to find ways to stay on the positive side without being on medicine. Any suggestions?

Thank you for your reply. I was just curious if the medicine made you feel like you couldn't fully wake up or if that's just another lovely symptom of fibro? Also I have noticed I've put on about 3lbs since being on the medicine, but my doctor said i wouldn't see an increase in my weight unless I was taking a much higher dose. I'm going to try to eat a lot better and get at least a little bit of exercise in my routine also. Do you think that it's harder to lose the weight being on the medicine?

Hi Courtney2618: I am 48 now and after a very busy life as a fitness instructor/outdoorsperson/physical rehabilitation assistant I was diagnosed two years ago with FM after a serious viral illness. I already have had family diagnosed years ago with FM (aunts and cousins) and also my brother has a rare disease that is similar to lupus. From what I have been reading in the research articles (you might try checking medscape.com) it definitely is tied to genetics - if you have family with it you are WAY more likely to have/get it yourself.

At first I could not walk a flat city block, but now I even go to my local Curves gym and hike a bit, canoe some, and cross country ski. I am not taking any medications (my choice supported by my MD who is also into natural and alternative therapies). I have tried magnesium malate and extra calcium but they have not worked for me. I do take a megamultivitamin, CoQ10 (for the problems with the energy system in the mitochondria - helps my fatigue) and Red Reishi (a fungus extract that helps for energy balance). They seem to be working for me. I only seem to wake up at night when I have to turn over/change positions and then I generally fall back asleep quickly. My main problem right now is staying on a gluten-free diet (my IBS symptoms are almost nil if I do this) as it also lessens my muscle pain and trigger points. I also am having issues with cognition and I've always been an A student, even in my physio classes. Aargh, makes getting and keeping a job an issue right now.

Sorry I've been so wordy...perhaps there are some ideas and info you can take from my post.
Best wishes on your FM journey.

Hi Canadjineh,

If you're getting no results from calcium, start with checking your vitamin D3 level. Calcium won't do you any good if your D3 level is low. Your body won't even absorb it.

Best of luck to you.

Alix

Thanks for the reminder Alix1972, I also take multivitamins and have no trouble with D levels and calcium absorbtion and have very healthy bone density readings too. BTW dairy products are off my food list and I am getting better quality, more absorbable calcium from vegan choices right now without the side effects of dairy - http://healthybodydaily.com/dr-oz-health-conditions/dr-oz-are-you-a-food-addict-dr-ozs-food-addiction-quiz

something others may find interesting - the casomorphins in dairy products and their effects on our bodies.

Just a thought about Fibro headaches - Trapezius muscles in our necks reach up quite high with connective tissue over the top of the skull and around the eye sockets. We also have jaw muscles that can be affected - TMJ probs are rife in FM. So the head aches are likely related to the sore muscle issues as opposed to the blood vessel constriction/dilation issues of migraines. I seem to get them more on the left side of my head and face but that could be due to the damage to my neck from a car accident many years ago. Anything like that will come back to haunt you later in life lol.