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Fibromyalgia Syndrome (FMS): The Lonely Disease

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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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18 thoughts on “Fibromyalgia Syndrome (FMS): The Lonely Disease”

  1. HAPPYY says:


    1. dogz4life says:

      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,

  2. dogz4life says:

    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…..

    1. Sarah-Beth says:

      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 !

    2. Sarah-Beth says:

      Well it is evening for me anyway.

      Good to hear from you as well, I enjoy having someone to talk with seeing as how my friends have lives and I don’t. LOL.

      I am 34 and I was diagnosed in Jan. of 06′. I was diagnosed with Epstein Barr, which causes the CFS, first then a few months later when the muscle and joint pain increased they said ” oh, well it’s not uncommon for CFS patients to also have FM “. As if I should have known.

      The only thing they could connect it with was stress as an onset. I have had an extreme amount of tramatic stress in my short life (had a few car accidents myself,not my fault and not as bad as yours, sorry to hear about that) my stress was more mental than physical, so I guess instead of going insane my body decided to get sick, sometimes I would rather be out of my mind, atleast then I wouldn’t be aware of what was going on…lol.

      My meds so far are Wellbutrin for the CFS and depression, furosimide(Lasix) for the swelling, gabapentin(Neurontin) for the FM, diazepam(Valium) for the anxiety and the newest is Cymbalta for the FM.

      I went to a new family practice doctor today. He’s great, he has about 30 CFS/FM patients and his ex-wife has it too. He’s the first one to agree that I cannot work. In order for me to get cash assistance from welfare until I win my SSD I needed a doc to say I am unable to work and my other quack said he didn’t know enough about it to say whether I could or couldn’t work (so much for listening to the patient).

      This doc is going to see how I do on the Cymbalta before he considers me for pain management.

      Sorry to hear about your knees, mine have been hurting bad for a while now, I have to sit and stand slowly, you know how it goes. I don’t wish that on anyone, my elbows are bad too.

      Well time to go lay down, keep in touch.

    3. loveme2 says:

      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


      1. chrissy69 says:

        hi love me 2 .i understand excatly how you 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

    4. loveme2 says:


      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..

      1. deerheart says:

        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.

      2. moose934 says:

        l was completely with her until the end when it came to medications. Over my years (im 51 yrs and male) lve had 3 concusions and knee pains and the next symptom for me was loss of the center of gravity. At times l would stand putting something in car, standing at my desk or black board (was a teacher) ld have to grab something before l continue to slump and blackout. Finally found a Dr who is a FMS Dr. He does seminars along with his practice. Before lve had all tests too. He started with the usual medication and nothing was helping me. I was textbook and all the conditions was not being treated so there was a LOT of breakthrough. Now l on a Fentanyl patch (50 mmg now was at .75) and vicodin and psychiatrist for depression, l was diagnosed back in ’88 after a couple knee operations and was told that one day l will have osteoarthritis and will probably need a wheelchair–just what l needed to Just a cane now when l am out–IF I GO OUT!!!
        With the pain and fog and other symptoms lm not emotionally positive to do anything,
        One thing I used to do is to go and seek autographs from football players and over the years lm so far away from that hobby. I try and force myself to continue a form of it but it isnt as easy as l thought…
        The quality of life is under the basement and l know the massive statistics of relationships staying together after diagnosis among many sufferers and lm am very very blessed that she has stayed and been so supportive in every possible. I can really see the strain on her with the added responsibility of doing some of my chores and OUR lives together that should be on me and l cant do my part anymore. Im praying one day soon l can get the depression and FMS together and calm them down enough to be healthier mentally and physically.
        Thanks for starting the letter for me and l can so completely understand your journey.
        Good luck and try and stay positive!!!


  3. dogz4life says:

    Hello Sarah,
    Your right! Im so sorry you were treated so poorly I know how that feels. I too have had a couple doctors like that and it makes me so angry. We suffer so much with pain, discomfort, fatique etc. and for a doctor to say ” were faking” that really burns me up! Who is your attorney? What State? I hope and pray they can push your case through. Mine is at the Appeals stage for the third time. This time I wrote all my Senators asking for help, because the judge denied me because he said “I was overweight and overmedicated!” My attorney was furious and filed the appeal with several reasons why it should never be denied. I did receive 2 calls from Senators who are going to contact the Appeals Judge on my behalf, so God willing this time it will be approved. If not, Im going to hire Jeffrey Rabin from JR & Assoc. He is in another State but said because SSI is federal he can represent me and he “Specializes” in FM cases. My original file date was March 2004 can you believe it? I have been fighting this so long. I dont only have FM and CFS I also have 2 knees with degenerative muscle tissue disease so I live in horrific pain 24/7 so bad that I have to have the morphine patch just to walk.My knees are so bad from the disease and the car accident that started all this that one of them needs to be replaced but I cant until my SSI is approved. My attorney cannot believe everything that has happened and has been fighting for me all the way. Hold your head up high and if you are denied fight, fight, fight! Dont give up! I have lost everything, my home, all the money I ever had,etc…I now live with my 83 yr. old father and he supports me and I pray everyday for my case to finally be approved. I wont give up, there are too many people who abuse the system and make it tough for people like us to get approved but we have to just stay strong and fight and never give up! Im with you Sarah its a very ignorant world but hopefully with all the FM and CF sufferers out there we can make a difference for the future generations. Hang in there!!!!
    God Bless you, Bari

  4. Sarah-Beth says:

    Wow, I’m so sorry that you have had to go through all that. I am prepared for the worst but I will never give up. I’ll be in jail if the judge tells me it’s because of my weight !!! I wasn’t overweight before I got sick. My attorneys name is Carl Kasunic in Willoughby, Ohio. He has seen cases won before and understands the ignorance of the system and the medical field so I am hopeful, for now. The stress of it all sure isn’t helping, is it ? Take care and thanks for sharing your story with me.

  5. dogz4life says:

    Hi Sarah,
    Nice to hear from you and thanks! I will be praying for you that your case be approved! Ya, the stress from all of this literally mades me sick to my stomach at times. What was kind of ironic was that right before I appeared in court I lost 80 lbs so I then weighted 230 and im 5’9 tall, and I was only taking 5 different meds per day!! I now take 7 meds a day and my weight is about the same. What a terribly reason to deny me huh? I think that judge was 120 years old too!
    Hope your feeling good!

  6. Sarah-Beth says:

    How funny…I too am 5’9″ and I weigh 235. I was 185 when I was diagnosed. I am only on 3 different meds so far, actually 4 but I only take that as needed for the anxiety. I would put you in my prayers but I don’t do much of that since I lost my mother to lupus 10 yrs. ago, but you are definately in my thoughts. Imagine my depression when those dumb ass doctors initialy diagnosed me with lupus, I thought for sure I would be dead by 55 like my mom. To think I was actually releaved to hear it was only CFS, HUH ! if I only knew then what pain I would be in now.
    Hope you had a good day.

  7. dogz4life says:

    Hi Sarah,
    Its nice to hear from you, I look forward to it. That is funny, our height and weights are so similiar.Could you imagine the judge denying me because of my weight? Insane! ..Im sorry to hear of your mothers passing,..I too was mis-diagnosed like you, with lupis darn stupid doctors.Thank you for keeping me in your thoughts. Can I ask, How old were you when diagnosed? How old are you now? Do you know what the cause was to bring the FM on? What meds do you take? Im just curious its always intresting to hear how others developed the disease and what meds help…..

    ..Im 47 , diagnosed in 2004 after a car accident. The stupid man who hit me hit so hard his back axle of his truck flew across the highway. I had just paid off my Saturn one week before. That day was the change of my life and the man who hit me had no insurance and no injuries! He had a ticket that was it!

    I have FM, CFS and also 2 badly damaged knees that need replacement so Im on the morpine patch, plus Neorotin (for FM), ultram(for FM), zoloft(Depression), prevacid(Stomach issues) and restoril for sleeping. The knees are extremely painful all the time so the patch saves me from taking other pain meds during the day. Im hopeful when SSI is approved I can have the knee surgerys and get off the patch.

    I look forward to hearing from you and I hope your having a nice day and not too much pain!!

  8. dogz4life says:

    Nice to hear from you! I agree with you its nice to be able to chat with someone who can relate to what your going through. My friends are supportive but really have no clue how much pain we all live with on a daily basis.

    Im so sorry life has thrown you so many challenges. The good thing is your still here. I know it can be very tough with FM I cant imagine Epstein Barr also, your a very tough woman! Your doing good and the fact you have a great doctor will help you allot, just the fact he understands the disease will be so helpful for you, thats good news!! Thats really good that he understands you cant work and the pain that goes along with the diseases, I hope he can help you to get the SSI approved.

    Thank you for the info on your meds. I have heard of them but havent tried a couple of them. I sure hope they help you! You had mentioned your knees are painful, and your elbows too, ouch!! I found a product that helps allot. Its amazing because you wouldnt think it would help but it does. I never thought it would help my knees because cortizone shots, therapy, nothing ever helped the pain except pain pills but this product did, it is amazing.Coupled with pain meds it does wonders, especially at night….. The owner of the company is Gene. He is a really nice man that will spend time explaining how the product works and also give you some other good remedies too. Its a clear gel, non staining, no scent, and it only takes a little bit to work! I know it will help your knees and elbows too! Trust me, it will help! I was very skeptical but since the first time I bought it over a year ago, Im sold on it now.

    Its called Pain Med, by GMI. I dont sell it but I believe in it so much that I know I can help others if they just try it. It comes in a tube 1.5 oz.It has nothing harmful in it..There web site is: and phone is 800/228-9850 there from Billings Mt. Ask for Gene and tell him Bari suggested you call, he is a nice man and will explain how it works. Its a homeopathic Pain Relieving External Gel, that Works!! Its a bit costly but I assure you its worth every penny!! I know it will give you some relief and Gene will mail it to you right away…..Its not like all the other stuff you see on tv, its totally different and Gene is compassionate hes not doing it just for the money, he cares about people and their health which is nice too. You can ask him to mail you his story and his info its very intresting how he got started.

    I hope today your pain has lessened, and know im always here for you! Give Gene a call, I know you wont be sorry!! Hang in there !!!

  9. AK_Rose says:

    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!

  10. sadsuzy says:

    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.


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