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Fibromyalgia Syndrome (FMS): The Lonely Disease

  [ 1530 votes ]   [ 17 Comments ]
By Jean Rosen • www.ProHealth.com • September 26, 2000


I'm a retired dairy farm wife, mother of five and grandmother of nine. Since my diagnosis in 1998 I read everything I can find about Fibromyalgia. From what I've read I think I might have had a mild form of FMS for decades, maybe even in childhood. Some writers claim childhood "growing pains" are a start of arthritis. I had many growing pains, was always clutzy and slow moving. As a young mother I frequently had leg and back pains by the end of the day.

When the kids were small, my exhaustion was thought to be a normal result of having babies fairly close together. Extra vitamins and a couple of B12 shots were prescribed. A few years later when leg and back pains became a serious problem, my doctor shrugged and told me it was just arthritis and said to take aspirin.

Next came a diagnosis of allergies and years of weekly shots. When aspirin no longer controlled the arthritis, the doctor ordered weekly shots which weren't compatible with the allergy medication and resulted in excrutiating crampy pain through my back, hips, and legs for 12 hours following each one. So I stopped both shots, against the doctor's advice. "You'll be back! " he declared.

Over the next decade, nervousness, extreme sleepiness and always feeling as if I were packed in ice was thought to be hypothyroidism and low doses of thyroid supplement was prescribed. This helped a lot until a new doctor replaced the former one and ordered other tests. These showed me to be just over the line of normal so no more supplement was available.

Later hypoglycemia was suspected because of light headedness at times; these tests also proved to be normal. When I first sought help for the crazy-leg discomfort, the doctor spoke of neuritis or maybe fibrositis and prescribed B complex vitamins.

I've heard FMS referred to as "the lonely disease." I agree. Over the years I've had symptoms, tests and medications for allergies, heart problems, flu viruses, hormone deficiencies, anemia, and others. One doctor giggled, "My goodness
you're a mess." I can still see his smirk. After negative stress test results, a heart specialist shrugged and said, " Just make more laps around the block!" Evidently both of these doctors thought it was all in my head and I began to wonder too...but if it's all in my head, why does every muscle in my body hurt so much?

Specialists believe FMS flares are brought on by stress. I've had very stressful times in my life. ..too numerous and severe to describe. My most recent flare came after knee replacement surgery July 5, 2000. The first days I was kept comfortable with narcotic pain killers. But the prescribed medicines ofUltram and Sinemet that had been controlling the almost unbearable crazy-leg misery going up through my back and into the pit of my stomach wasn't compatible with narcotics, and so I had to stop the FMS meds.

The next weeks I gradually substituted Tylenol for the narcotics, underwent strenuous therapy, and waited until I could resume my FMS meds. Now after six weeks I'm completely off the narcotics and getting the FMS back under control.

I find Malic acid and Magnesium give me more pep than I've had in a long time. Glucosamine and Chondroitin help the general arthritic pain better than any prescription drugs I've tried. I also take MSM...I remember when I was a child my Dad took pure sulfur powder for his joint pains. Sam-E helps my fiber-fog and depression. By day three after taking Sam-E I felt like a black cloud had lifted.

Recently I bought "FM RELIEF which combines the above products except for the Sam-E, and the Neuro-Bl2 will replace the Sam-E. I haven't used it long enough to know the results but I'm hopeful!

I'm trying to learn all that I can. about Fibromyalgia, and I'm so thankful that a FMS support group was near when I needed one.

Thank you for putting me on your mailing list; there's so much information in your newsletters, flyers and catalogs.



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Article Comments Post a Comment

YOU NEED SOMEONE THAT CAN HEAR YOU.
Posted by: HAPPYY
May 3, 2007
HELLO EVERYONE MY NAME IS: KAREN . I HAVE FIBROMYALGIA FOR 5 YEARS NOW AND I CAN TELL YOU THAT EVEN SOME DOCTORS DON'T WANT TO BELIEVE THAT FIBROMYALGIA IS A REAL CONDITION, THEY NEED TO BE EDUCATED WITH SO MUCH INFORMATION. WHEN I FIRST STARTED WITH MY ILLNESS THE PRIMARY CARE DOCTOR THAT I HAD DIDN'T KNOW ANYTHING ABOUT THIS FIBRO ISSUE BUT HE DID A ONE GOOD THING, HE REFERRED ME TO A PHYSICAL MEDICINE SPECIALIST WHO KNOW VERY MUCH ABOUT IT, AND HE STARTED TO HELP ME DEAL WITH IT, AND SINCE THAT I STILL HAVE HIM AS MY PHYS.MED. AND I DON'T NEED ANY OTHER. IS GOOD WHEN YOU FIND SOMEONE THAT CAN LISTEN TO YOU.BUT ALSO YOU NEED TO KNOW THAT YOU HAVE TO LEARN HOW TO DEAL WITH THE FIBRO EVEN IF YOU THINK THAT YOU CAN'T DO IT. YOU ARE NOT ALONE BECAUSE IS ALWAYS SOMEONE THAN WILL LISTEN TO YOU.GOOK LUCK.
Reply Reply

 
Hello Happy/Karen
Posted by: dogz4life
Sep 13, 2007
Your so right!! So many doctors feel FM is not real and its so upsetting. The first time I learned about my condition way back in March 2004 I read and read to learn everything I could and I still do and your right it does help. When I had Medi-Cal my doctors were fabulous and understood the disease but then when I lost that insurance I had to change doctors and they just dont get it because there county doctors they are not very helpful. I have been blessed by being approved to go to a local Government hospital because my meds are covered but its a real learning experience trying to get the doctors to understand us. Thank you for your kind words and support, everyday is a challenge but im hopeful for the future. God Bless, Bari

 


It is a cold world out there....
Posted by: dogz4life
Aug 28, 2007
I had very good doctors that understood the disease. Bu then I lost my medi-cal insurance so now im forced to see a County doctor.When I first met him and told him I suffer from Fibro he rolled his eyes as to say, their is no such thing! I cant go see another doctor because I cant afford it. I dont like the fact this doctor is not educated on the disease and its a shame that doctors treat Fibro sufferers like dirt. I basically have my meds refilled by him and thats it. I have a couple close friends that understand my pain but my parents forget it, the depression is unbearable sometimes.....
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Ignorant world is more like it !
Posted by: Sarah-Beth
Sep 13, 2007
I suffer from FM/CFS, I had a similar situation, my insurance changed so I was forced to switch doctors. The new one admitted to knowing nothing about either illness so he referred me to a rheumatologist, what a joke, she looked at me and said "if your only coming here to get me to sign off disibility papers you may as well go to another doctor". I had never mentioned disibility to her so I asked why she would say that, she said that too many people use this illness as an excuse to get on SSD and that it isn't severe enough to qualify. I haven't worked in 2 yrs., I was diagnosed in 2005. I have been denied twice for SSD and now have a lawyer who is very confident that we will win. Don't give up !

 


fm and oa
Posted by: loveme2
Oct 13, 2007
Good Afternoon, Sat I posted a note earlier but for some reason i lost it somewhere in cyberspace. It was about Chronic Pain..of Fibromyalgia and osteoarthritis and i also have a few more complaints. One thing i want all to know is to find out as much as possible about all that is wrong and do the best you can trying to explain these symptoms to your Dr's. You may have to inform them and bring in literature for them to understand that what you are saying (it is not all in your head) like so many Dr, do, because they know very little and when a patient has more than one illness and depending on the medication they are taking to be functional we are stigmatized. and of course treated differenty than none ppl who are at the Dr. office for a cold. If i only had a cold and not all this, i would be one happy woman. Many Dr. I remember once i neeeded to find a new Dr. and i had to see 21 Dr.GP's and the 22nd Dr. i suppose had pity and took me on..Thank goodness. I am the one having difficulty walding and getting around, so yes there was some discrimination. and i still have all those appt's listed at home. I do not get out much anymore, and now i require homecare because of the lack of ability to do the simplest things, the pain and being this way now for over 30 yrs. Friends are hard to come by, seldom does my phone ring except for medical appt's. but friends and anyone who would help me 0000. Since i lost my Mother last yr. of course stress of that nature did not do me any good and my family abandoned me. and on and on. I have lost of desire for most things and even going out. I find myself sliping away and i find it in some ways comforting, because everything seems to be a chore, even deciding what to wear is at times overwhelming. And i feel safe, no one can hurt me anymore, and when my Mother passed away, That was my biggest loss. for now I am truly alone. I miss her very much, Without getting sappy, I wish all out there ,HAVE A GREAT DAY. Take care loveme2
Reply Reply

 
fibro
Posted by: chrissy69
Dec 5, 2007
hi love me 2 .i understand excatly how you feel.it has tken me years to get an answer from the doctors ,kept putting it down to my weight .unless they suffer they dont know whats it like and cant understand

 


fm and cfs always together - WHY?
Posted by: loveme2
Oct 13, 2007
OPEN FOR ALL I wonder why that whenever there is anything written on the subject of FM an CFS are always used together ?. I know they are similar. for me my primary is osteoarthritis that started at age 17 or so. Then came, Major surgery which i think at this pt that the Fibromyalgia kicked in and then with the chronic state I was in things continue to worsen now with CFS which zapped all energy from me and to date..I am in constant pain. and there is little left for me to try. You name it. i have tried it and the one that i found to be the most effective is Accupuncture..but for me i am not covered and the Gov. who supplements my income monthly does not cover these holistic natural remedies..It is a shame, because that DENIES me and many others lives,because it works and the best part of all of this is ,is if we were covered there would be less sick people, more productivity, action and enthusiam for joi de vive will return sronger and able to be more involved with society. people and places are also meant for us to have , some happyness,,not staying at home alone , and knowing that is very sad. I try to excersise but find it difficult but if i do one or two or as many as possible i get the feeling at least i am doing my part. and not just depending on the med's to pick me up. Not a good idea. Everyone have a good day..
Reply Reply

 
fm and cfs always together
Posted by: deerheart
Apr 29, 2008
In my "healthcare"throughout the past 10 yrs or so, I have never had a Dr. ackowledge me as having cfs or diagnosing me with cfs, just fibromyalgia, osteoarthritis, myofacial pain syndrome, depression. I've been told it's all in my head too. The pain you learn to live with, the debilitating part is cfs. agree? yet I still feel like no one is listening, no one cares or undrestands, people just think it's pure lasiness. If I could do more I would, my motto is I do what I can when I can, and that's all I can expect of myself or anyone else to expect from me. What else am I supposed to do you know, push myself to the extreem and feel worse later. You speek of lonliness and no friends, I can relate. I have no man in my life and and been that way for a very long time.

 


lonely; man in your life
Posted by: AK_Rose
Jun 2, 2008
Yes - I hear you all on the loneliness side. I just dropped my daughter off at Vacation Bible School and cried as I left b/c I want to help, and I can't right now. It's hard to commit to anything, so people stop looking to you for help. I'm a nurse, and used to be a pediatric intensive care nurse, at that. I am used to "leading", and now I feel like an invisible, irresponsible person (since I'm usually late for things now). Regarding having a man in your life: I'm married and have a 6 yo. But I feel like I let them down all of the time. My husband was just saying that "we always find an excuse not to do stuff". I think what he was really saying is: We never do anything b/c you can't. Don't get me wrong, it's great to have them here and to know they love me, but it breaks my heart to let them down. Sometimes I think if I just stay invisible they can live their lives and enjoy them, rather than having me as "deadweight". So I guess I'm just trying to say that there are probably pros and cons to both when it comes to be married or in a relationship. Instead of having "wife swap" they should have a "married/single swap" and have people see if the grass IS greener on the other side! :) Just kidding... But it would be a pretty crazy show, eh? Stay strong! Brenda
Reply Reply

 
hope you read this rose
Posted by: sadsuzy
Jul 14, 2008
i understand the useless feeling, deadweight, like they would be better off without you. i go thru the same kind of things everyday and espesially the loss of financial help. i feel awful that we have to live they way we do because i can't work. it has been 8 years since your posting, i hope things have improved for you.

mary

 



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