Anything is possible

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My life had become a practice of patience.  I would tell myself,  “ I can stand this pain for two more months,” and I would imagine that during that time I would find the reason for my pain and a way to make it go away.  For the next two months I would practice living life in a very structured and predictable way.  I would try to sleep as much and as late as possible (which wasn’t easy!) and then I would begin my day of routine.  Each day was the same… I had found a few distractions that I could practice,  (walking to the mail box once a day; watch an old movie that was upbeat and I didn’t have to put any effort into following the simple story line; try to do stretching exercises on a yoga mat; sit in a hot bath with herbs and mineral salts, and see how many times I could walk from my living room to my dining room- back and forth)…all of which would help the day pass a little more quickly, until it was time to go to bed and then start the whole cycle over again the next day.

Every couple of weeks the routine was broken by a trip to see a new doctor and the visit was proceeded by a day of feeling optimistic that this time I was going to meet the person who could make my life return to normal.  As I would sit in the exam room waiting for the doctor, I would practice to myself the explanation I would present when the doctor would finally show up and ask me for the reason I was there.

I would begin telling my story, putting up a brave front, sharing my symptoms and my current treatment strategy… but would usually end up in tears, trying to get the doctor to understand how much pain I was in and how desperate I was for his/her help! Most of the time the doctor’s reaction was like seeing a deer in the headlights. I knew they saw a healthy looking woman, who seemed to not be coping very well, over reacting to something they didn’t understand. This misconnect would make my body hurt even more and my emotional state go from bad to worse.

I would ask myself, “Why did I get my hopes up?” As I walked out of the doctor’s office with a piece of paper that had the name and number of a local psychologist, I would tell myself, “You aren’t crazy! Your pain is real.  Someone, someday will have the answer. Try to stay positive and have faith.  This is just a temporary situation. Have patience, and remember…you just have to hang in there for two more months.  They have to have answers for you by then!”

It took more than two months for me to get a diagnosis of fibromyalgia, but when I finally found the doctor who knew what was wrong with me and told me with time I would get better…I told myself, “I’m proud of you! You held onto hope and never stopped believing that anything is possible” Lynne Matallana.


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The National Fibromyalgia Association has been serving the Fibromyalgia community since 1997.
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Comments

  1. Celia Foster  April 6, 2014

    After 3 LONG years I was finally “officially” diagnosed by a wonderful, caring specialist. I have progressively suffered with pain and depression for years but my symptoms came to a head in 2008 when my Mom was diagnosed with terminal lung cancer. My Mom and I were very close and so I took care of her, met her every wish, every need 24/7 and continued to work at my full time job as a care provider in an extended care facility for Alzheimer residents. Conveniently my facility is across the street from where Mom lived. So if I was not at work I was with Mom and “in my spare time” I tended to my husband and 2 boys. I was feeling pain increasing but ignored it because it wasn’t my priority. During the time my Mom was in hospice, I was diagnosed with a mass in my uterus that was suspect to be cancer. I refused to have it checked as I was busy with my Mom, even after the image technician pleaded with me to have the urgent MRI. The same technician called me back a month later, February 2009. At this time I relunctantly affects have the test. The test came back that the mass could indeed be cancer and I needed surgery asap. But of course I refused the surgery; my Mom was coming to the end of her life. My sister who came to help left so drunk that she had to be sent by ambulance to the er and then went home to Newfoundland, my 17 year old son had to have emergency surgery for a burst appendix and dear brother tried to help all the way from the east coast of the states. Mom passed away in my arms on March 24, 2009. I had surgery in June which was not cancer but was an unusual diagnosis of endometriosis. I went back to, work late July and then was in a car accident in which younger son and I were both hurt. Oops, I forgot to grieve my Mom’s passing. The pain has progressed rather quickly since then. Thankfully I have the best family doctor.we treated my depression and began testing me for all sorts of diseases. He made e wet attempt to get me into see a specialist but because of our flawed system, it took 2 and a half years. So here I am today, struggling. I now work part time which is very stressful because my husband lost his job a year and a half ago and has been struggling to start his own business. He is trying to understand everything that goes with a diagnosis of fibro but because it is “invisible” he struggled with it. My symptoms have exploded in the past 6 months. When I look at the list I have every symptom 24/7. I am trying everthing I can, conventional and alternative, they are all temporary. But I have my faith, My Lord will walk me through this.

  2. pam byrd  July 7, 2014

    Sounds so familiar, but it took years to get diagnosed back in 1988. Because we don’t look sick, people don’t recognize our constant pain. So frustrating.

  3. Tx.Co.  July 7, 2014

    You mean I’m not the only one who feels this way?
    I hate it when I break down in tears in front of the doctor. I just get tired of being tired.

    Thanks for sharing your story.

  4. Lindsay  July 7, 2014

    Absolutely we don’t look sick and that’s so much of our downfall. A therapist asked my husband what he would do for me if I was losing my hair or going through chemo, he’d be there in a second. However, because I don’t look the part (I still have plenty of meat on my bones) his mentality is different and seems to think I’m ok most of the time. I’m not. It took me 2 years to get my diagnosis and 2 years with treatment of Ibuprofen. I never had necessary testing to rule out other diseases. I guess it was a lucky guess. I’ve learned to embrace this disease just recently, yet I still do struggle sometimes. I have to do it day by day.

  5. nfadmin  July 7, 2014

    No you’re not! I was told that I just have a gluten problem and I’m not sleeping enough. HELLO! I can’t sleep cause I hurt so badly. All it takes is a doctor who listens and who cares that’ll help remind you of those doctors who look stone cold in the face and dot understand how we really feel.

  6. Mary  July 7, 2014

    You said the doctor whom diagnosed you with fibromyalgia said you will get better. I assume he meant by acceptance and change in your daily routines? He didn’t actually say you would get better and not have fibro anymore?

  7. Suhail Valentin  July 7, 2014

    I felt such comfort reading this… not because of your pain but because it always feels good to hear someone who understands. .. thank you for sharing

  8. Amy Stone  July 7, 2014

    I was diagnosed in 2002 and I’m still looking for a “better” explanation for the pain. It’s beyond difficult to come to terms with a diagnosis that is so poorly understood. I feel like I can’t talk about it freely, and therefore I have to pretend that everything is okay.

  9. Mandee  July 8, 2014

    I was first diagnosed with FMS in 2002 after 8 months of chronic, severe pain, sleep depravation, and an inability to recover from major surgery in 2001. I had been a generally healthy 27 year old with some back issues from a fall at 18 y/o. I had never heard of FMS before my doc brought it up. In looking back at my childhood I always had “mystery pain” and by 13 I was always wearing a wrist brace, elbow band, or a knee brace to play sports. The pain never stopped me… Not until 4 years ago, anyway. That was when the pain was widespread, throughout my entire body and no OTC could touch it. Script meds like Codiene, Ambien, Flexeril, and Cymbalta barely took the edge off. My doc, a fantastic rheumatologist, started looking at blood work, specifically for inflammation and ANA levels. An unfortunate trend started to appear and within 9 months I was diagnosed with Lupus (2012).

    Now, I was no stranger to Lupus. My mom was diagnosed in 1996 and at every annual physical I requested a lupus panel be done. I had 16 years of data to refer to when my rheumy started looking a little more closely at my panels. We had all thought I had dodged the SLE bullet. But I didn’t. Fortunately I was diagnosed quickly and put on meds immediately and have so far not had any major organ involvement. But, the question these days is “lupus pain/fatigue or FMS pain/fatigue? We often don’t really know. I generally don’t look “sick ” to the outside world, but inside I am literally battling for my very life against pain and an immune system at war with itself. I work full time as an educational psychologist and have two adopted sons with emotional issues. Each day is a battle to get up and move, let alone get the kids out the door to school and myself to work. But, I do it because pain has been a post of my life forever and I can’t let it win. I’ll be 41 on Wednesday; young enough to do be vital and involved in life… even if I feel 81 and like life is over.

    Bless you all who suffer pain. May you feel comfort in knowing you are not alone. I know that doesn’t ease the pain but at least you won’t feel so very lonely and sad when you hurt to much for a hug.

  10. Joy Boyd Colhoun  July 8, 2014

    So much of above I can relate to however I pushed myself all my life (apparently had Fibro way back into my childhood) and I advise younger sufferers (I’m 72) to do part time work of possible(!) especially over the menapause yrs because chances are you could end up like myself forced to retire on medical grounds

  11. Anna  July 8, 2014

    Thank you for sharing your stories, each and every one of you. I suffer from a different kind of pain 24/7 I have severe degenerative osteo arthritis through out my body. It started when I was a teen, and really struck when I was 25. At the age of 50 I have both hips and knees replaced and my neck has been fused from T1 up. The pain is never ending and sleep never comes and I understand about looking normal. People that don’t live with constant pain, don’t understand it. Luckily for me I have a great supportive family!! Take care each and every one of you.

  12. nfadmin  July 9, 2014

    My Doctor (my current one, anyway) listens to me and is pretty much happy to give me any referral for things I come up with on my own however we have been going in circles and he always goes to medications as the answer. In no way do I want to be on tons of medications, I have heard the horror stories, and the ones I have tried don’t work. Anyway before I end up on an off-topic rant what I am trying to say is it takes much more than a Doctor who will listen. My Doctor is usually (not always) compassionate and understanding, but I don’t really think he has much clue as to what he is doing concerning FMS. I have made leaps and bounds compared to where I was once at but I do not believe statements like “FMS does not get worse” because I know first hand it does with time and I worry about where I will be at in a few years or even months time. You just never know what you are going to get, but you can’t tell an employer so you are screwed either way. If you somehow got “better” with a miracle Doctor, please enlighten me and I am sorry if I sound a little bitter but I don’t get it.

  13. nfadmin  July 9, 2014

    Oh I should have added: two months? It took me almost two decades! I had Mono and it all went downhill from there

  14. nfadmin  July 9, 2014

    This is so exactly it! You are told to “own it” but you can’t tell an employer, you can’t tell every single person you know without stigma or them looking at you like you are crazy. You CAN try to educate the people in your life, but you certainly CAN NOT talk about it freely. It is not understood, it is not considered a disability so there is no help and you just have to “deal with it”.

    Not sure what makes it less valid than other illnesses and disabilities.

  15. Regina  July 9, 2014

    Thank you for sharing. The hardest part is no one undersranding. My family tries but I know they dont understand. I’m always so tired. I work 40 hours a week by the weekend I can’t function. It takes me the weekend to even recover.

  16. nfadmin  July 14, 2014

    This is my first time looking at this website. I’ve been diagnosed with FM over the last 2 years, but I think I have suffered for quite sometime without being aware that it was FM. I have had chronic pain for more years than I want to mention, but have just lived with it.
    This past year a rheumotologolist put me on cymbalta which seemed to help at max dose, but then I had terrible side effects: halluncinations, horrible vivid dreams and some brain zingy feelings that I just could not tolerate. Now I’m at 60 mg and feeling miserable again. My body feels heavy, tired, and achy all over. I’m not sleeping well at all. I feel like such a complainer…hate it. Going to go back to the rheumotologist and see what else we can try.
    Thanks to others who have posted. It helps to hear what you have experienced.

  17. nfadmin  July 14, 2014

    What kind of doctor have you found most helpful?

  18. Lynne  August 16, 2014

    It took me 15 years to get a diagnosis. In that 15 years, I’ve been diagnosed with major depression and hospitalized x 3. My pain is all in my head. I been told that I am not “complying” with medical advice. The medications I was given made me sicker. I’ve been told that I “doctor shop” ….with the false implication that I am looking for drugs. I’m only looking for a doctor who will sincerely help me with this. I don’t want drugs unless they are prescriptions that will actually help me increase the quality of life for me and subsequently for my family.

    I finally was diagnosed by a neurologist with fibromyalgia, but he could not treat me because it was “not his turf”. He sent me to a rheumatologist who blessedly diagnosed me with the fibromyalgia and told me that I was not crazy. I felt so relieved! Relieved because there was a name to my pain and anxiety.

    Then he left the area to teach in his home state and handed me over to my current doctor. She, through the last 11 years, effectively wiped out my fibromyalgia diagnosis and treats me for things like diabetes, cholesterol and other straw-man diagnosis instead.

    When I bring up the fibro, she offers me cymbalta or lyrica. I have no confidence in her abilities to treat my FM effectively because she seems to avoid talking about it. She never asks me about how I feel and does not address what I do tell her.

    Changing physicians reinforces their “doctor shopping” statement about me.

    As somebody who has been burnt badly by antidepressants, I am not totally opposed to cymbalta, but my doctor does not exhibit very much knowledge about the medications she offers me.

    I have been surviving on small doses of flexeril and clonopin at night for rest and she is taking that away from me without any other remedies that I think she is knowledgable about.

    I feel very unsettled about what to do now. I seem to have come full circle without adequate care for this awful illness.

  19. Maw T  August 25, 2014

    this is my first time to even talk/write about my fibro diagnosis. My husband of 35 years is such a supportive man…I’m so blessed.

    for years I have been diagnosed with RA and Lupus but never felt better. 8 years after the Lupus diagnosis, 6 years with the RA I had to move my husband closer to a VA hospital due to his disability. But in all the craziness of moving I had to change rheumatologists who diagnosed me with fibro….it all makes sense.

    The fatigue, the pain, the mental fog, etc. came to a head when my son was diagnosed with brain cancer 4 years ago (thank the Lord my son in now in remission). Along with the brain cancer came a diagnosis of Huntington’s Disease, a disease my husband also suffers with. I could not function…seriously. I have not been able to recover from the fatigue, the pain, etc. since then.

    My doctor put me on 2500 mg of Gabapentin…what a difference already~~but the weight gain OMG! I’m already taking Pristiq for depression, Ambien for sleep, Mobic for chronic pain (which BTW is not working) and Norco 10 which works wonderful but I’m so afraid to ask for more for fear of being tagged as a drug addict.

  20. Jessica  August 29, 2014

    I was recently diagnosed with FM and thought that really doesn’t mean anything, the just diagnosed me with FM because they had nothing else to name it. And all the sypmtoms are random and don’t make sense… thinking perhaps I might have multiple things.. but after going through this site and especially the symptom part… the list of symptoms basically listed off MY symptoms.. It seems more real now… I don’t know if I make sense but I feel better about the diagnosis.

  21. Denise  September 15, 2014

    I could have written this almost word for word, because it so well describes what I have gone through all these years. Thank you for writing this!

  22. Pam  September 16, 2014

    Lynne, Did you ever get better? Since you started this web site/association I would guess the answer is yes. This is encouraging news. I just found this site… Thank you!

  23. Susan Daley  September 18, 2014

    Thank you so much Lynne for sharing your journey. I’ve had FMS for 21 years. I haven’t been able to exercise the past 9 years because of an accident where my nerves were crushed in my foot. Exercising did helped. I needed to hear a positive story today.

  24. Bertha  September 20, 2014

    Help!!!

  25. Regina  September 20, 2014

    What’s going on?

  26. DNieka Pearson  September 23, 2014

    Hello, my name is Dnieka and I have Fibromyalgia. I have had Fibromyalgia since 2009. I am a 29 year old and a single parent of three and my youngest is 6 months old. I was pregnant with Fibromyalgia from September through March 2014 and and voluntarily withdrawn all my Fibromyalgia prescribed medications. During that timeframe of my pregnancy my Fibromyalgia symptoms decreased to only severe nausea. I was astonished that my Fibromyalgia symptoms had decreased tremendously. I notified and requested to my OBGYN that Fibromyalgia could possibly be linked to hormone levels, since my Fibromyalgia symptoms were very minimal. About 3 months after the birth of my baby the Fibromyalgia symptoms gradually returned. Today my symptoms are somewhat visible, even though i try to push myself past the pain, the illness is invisible. I pray for a cure to this life changing and draining illness, because it is not easy to live with while being a single parent of three small children. I hope my testimony helps in someway. Have a good positive thinking day. 😉

  27. Regina  September 23, 2014

    D NEIKA I praise you for having to raise kids with this.
    I’m 47 and just could not do that. I can barely walk now and I’m suppose to return to work Oct 6. Not sure what I’m suppose to do.

  28. Linda Mcneill  September 25, 2014

    Very hard to stay positive, 11 years of pain, 7 years to get diagnosed after seeing so many doctors and been admitted to hospital so many times and I’m still in pain . I’m on a strong dose of Lyrica twice daily and was on cymbalta which didn’t work . All my energy is taken up looking after my four kids. I am house bound most of the time. All the other things that come along with the condition is hard to deal with, the sleepless nights, the breatlessness when your trying to walk , the gynecological problems and recovering from all the operations, every little cut or bang feeling like you broke something. My family members don’t understand and the kid’s just expect me to be able to do everything and they dont understand when I cant , but I dont blame them because I don’t understand even after 11 years. I have very few good days but I try and pretend for the kids sake. I feel sorry for my husband. I was diagnosed with lupus around the same time . All his holiday’s from work are spent taking me to hospital appointments . I am only 41 and I feel like I’m 81 . There are people worse off than me but some day’s it’s hard to think that , everyday I think maybe tomorrow will be a better day but it never comes

  29. Regina  September 25, 2014

    It’s really hard to stay hopefully but I keep faith but admit I have felt hopeless. Today for some reason is a bad day. I’m not sure why. People just don’t understand this disease. There needs to be more awareness so people can understand.

  30. DNieka  September 25, 2014

    The most complicated part of fibromyalgia is the pain, fatigue, and restless nights. I still have all these most commonly symptoms plus more, but I have to try to think positive in the mist of it all other ill just indulge myself in self sorrow and self pity. I live in a state that has snowy cold winters and rainy warm summers and the mental transition to prepare my physical and emotional wellbeing for this upcoming winter seems impossible with fibromyalgia, but I know that positive thinking helps my inner strength to fight harder against this illness in order get by the next day by day basis. I have to fight for the sake of my children’s wellbeing. It does suck for my children to have “high”(normal) exspectations for me as their mother, provider, teacher, and caregiver living with fibromyalgia but the best part of it all is the extra motivation and determination my kids give me to fight without even c

  31. DNieka  September 25, 2014

    Considering at times that mommy doesn’t feel well “right now”. I just realize and acknowledge more daily of me having this illness of fibromyalgia. I wouldn’t wish it on my worst enemy. We were dealt these cards because we must be a few of many strong, I guess.

  32. Alissapurda  September 30, 2014

    I cannot thank you enough. What you have done has made a huge impact on my life and giving me hope and a feeling like I’m not crazy your book is wonderful, the fb page is fantastic and I can’t imagine having to deal with fibro without your story and resources to help me feel that I am not crazy, I am not alone. When I was diagnosed I never told people what I had because I feared I would be viewed as a crazy, depressed almost 40 year old. My husband at the time told me this is an illness an should never be ashamed to tell the truth. I am very grateful for your work to make fibro visible. Thank you

  33. Regina  September 30, 2014

    What is the name of the book?

  34. Pam  October 1, 2014

    I don’t know which book she was referring to, but I read 2 others that were helpful. FibroWHYalgia by Sue Ingebretson. And…. The Fatigue and Fibromyalgia Solution, by Jacob Teitelbaum MD.

  35. DNieka  October 1, 2014

    AlissaPurda I don’t know what book or who you are replying to? Pam those books` titles make the books sound very interesting. I will definitely have to look for them to read. 🙂

  36. nfadmin  October 1, 2014

    Hi Regina,you are right about the need for more awareness about this disease. We need to start with our Doctors and nurses because most of them Know very little about the disease especially the old school doctors. Medical staff, need to be better educated. I am sick of having to explain my disease to them and it is a disease. For example 6 weeks ago I had an accident, I shattered my heel, I have never felt pain like it, to the extent of passing out . I had to have a 8 hour operation and stay in hospital for 2 weeks to have it put back together with plates, screws, bolts, but because of my bodies reaction to the pain and to pain killers meaning they didn’t work, and having to explain why I was like this to doctor after doctor and them having to give me enough painkillers that would kill a normal person, so they told me but the fact that they did not know what I was going through pain wise and how to deal with it was so frustrating. I have a long recovery ahead and a’lot of pain in the heel and because of the pain and muscle tiredness in my arms and everywhere else I cant use crutches, so I am in a wheelchair . The recovery time is about a year without fibromialgia. So I have a long road ahead to learn to walk again. The medical community needs to wake up to this disese

  37. Regina  October 5, 2014

    Does anyone ever have a fever with a flare?

  38. Angie Busbee  October 30, 2014

    Thank you for sharing, you told my story doctor after doctor tears every visit and no compasion from any of them I was diagnosed 6 yrs ago and I’m still searching for treatment . It is such a struggle and so many times I have wanted to just give up.

  39. nfadmin  November 20, 2014

    I am so glad that I decided to become a member of NFA today. Reading Lynne’s blog and everyone’s responses made me realized that I am not crazy, that the pain and fatigue I’m feeling are real and not just in my head. I am 44 years old. I was diagnosed with FM last year after 4 agonizing years and 5 specialists. I used to be a store manager ( a good one) for 18 years until FM destroyed me. I am currently taking Lyrica, Norco and Oxycontin for pain among others for the other symptoms. I am very tired of feeling pain and fatigue everyday ( from the time I wake-up till i go back to sleep again). I don’t feel like Me anymore. How long before I feel normal again? Will I ever? I’ve been told to see a psychiatrist but I never did. Did anyone of you see a psychiatrist? Did it help? I was told to exercise but I feel too tired to exercise. Please advice of what worked for anyone of you.

  40. nfadmin  November 20, 2014

    Yes. Fever went up to 102.4 I usually feel feverish, doctor didn’t say anything about it.

  41. nfadmin  February 27, 2015

    I was glad to see your comments. As someone who is also 72 I can relate to have had Fibro back into my childhood. I have struggled all my life with “pushing myself” thinking this was normal. I’d like to know if anyone out there has pituitary problems or a high prolactin level. I am wondering if this can contribute to Fibro and if so what helps.

  42. Joy Boyd Colhoun  April 4, 2015

    Please refer to above ‘share’ its obviously a bad brain fog day and I have made a mess of this together with my being technophobic!! Gosh! This has me wondering if its the FMS yet another symptom; my friends and family have great ‘fun’ tho all in fun at the difficulties I experience thereto??

  43. Regina  April 6, 2015

    I had a flare up today. It really affected my legs. I had to leave work at lunch. My boss just couldn’t believe I was sick enough I needed to go home. How do you make them understand? The bad thing is she an occupational therapist (OT). Where is the caring she is suppose to show? I’m at my limit I just can’t cope with it all. Need help?

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