02.14.2018

If I could give anything to people living with fibromyalgia, it would be …

This article was originally published on Prohealth.com. It is being reprinted here with permission from the editor. 

A few weeks ago, Prohealth’s fibromyalgia editor Cindy Leyland asked me to contribute to her article, “If I could give anything to people living with fibromyalgia, it would be…” When I read her email, I immediately responded back, “You know I could write an entire article on that, right?”

If I could give anything to people with fibromyalgia, it would be... | Fed Up with Fatigue

Besides a cure, there are so many things I wish for my fellow fibro warriors: lots of money so they can afford the medical care they need (including non-pharmacological treatments like massage and acupuncture); a warm, sunny locale for better healing; a chef to cook super-healthy and delicious food; a maid to keep the house clean; an assistant to run all those errands we never have the energy to get done.

All of these are really just pipe dreams. Most of us will never be able to afford them.

But some of my wishes are attainable. If I could give anything to my fellow fibro warriors, it would be…

….a good doctor who is patient and open-minded.

It can be difficult to find a good doctor because fibromyalgia patients don’t fit the standard 15-minute office visit scenario of step 1. diagnose the problem and step 2. prescribe a drug to fix said problem. Although there are certain drugs approved for the treatment of fibro, they don’t work very well for most of us.

When the standard pharmaceuticals fail, my wish is for all of my fellow fibro warriors to have doctors who won’t give up and who are open to experimenting with less conventional treatments like low-dose naltrexone, cannabis, memantine, antivirals and others. 

….the ability to channel your inner detective.

Once diagnosed, too many of my fellow fibro warriors stop looking for answers. Their focus shifts to managing symptoms because their doctors have told them there is no cure for fibro. I don’t believe that!

I’ve always thought that if we can get to the source of our symptoms, then recovery is possible. My wish is for everyone with fibromyalgia to stop accepting that label and resigning themselves to a life of pain and exhaustion. Keep looking for the underlying cause(s) of your symptoms! There are many things that can cause fibromyalgia symptoms, such as undiagnosed infections like chronic Lyme, mold exposure, structural issues within the body, heavy metal toxicity, food sensitivities, mitochondrial dysfunction, thyroid disorders, breast implant illness, antibiotic damage, etc.

Based on the results of one Canadian study, the chances are good that you don’t even have fibromyalgia at all! Misdiagnosis is extremely common in our community.

I believe fibromyalgia symptoms are the result of a deeper problem within the body. If you can uncover the source of the problem(s) and treat that, then recovery may be possible.

….the strength to stand up for yourself and be your own advocate.

Although fibromyalgia has been recognized for decades, many still think of it as a wastebasket diagnosis. Because of that, you’re likely to encounter people who think fibromyalgia is a fake illness.

If your physician, family or friends have accused you of being a hypochondriac or exaggerating your symptoms, it’s time to re-evaluate those relationships. My wish is for all of my fellow fibro warriors to find the strength and self-respect to walk away from the people in their lives who don’t believe in them, or if that’s not possible, at least limit contact with them.

Being sick is stressful enough without feeling the betrayal of those closest to you.

….the ability to celebrate small victories.

When chronic illness strikes, we have to redefine what we think of as success. Because we now have limitations, we can no longer gauge our self-worth based on how well we perform at work or the stuff we own.

Instead, we need to learn to celebrate the small victories. We got out of the bed before 9 a.m.! We made a dinner that didn’t come from a can! We walked to the mailbox and back! We watched our grandchild for an hour while their mom did errands!

In our former lives, these tasks may have seemed routine, but they can feel like major achievements when every ounce of energy has been sucked out of your very being. My wish is for all of my fellow fibro warriors to learn to be patient with their broken bodies and give themselves a pat on the back for making it through each day. We are called fibro warriors for a reason!

….an endless supply of hope.

If I let it sink in that the rest of my life may be spent in chronic pain, I very well may jump off that tall bridge near my house. What keeps me going every day is hope. Hope that I will eventually put together the right combination of treatments and get my life back. Hope that one day I’ll be able to compete in 5Ks again. Or travel to see my out-of-state family members. Or just go to the grocery store without spending the rest of the day on the sofa.

My wish is for my fellow fibro warriors to never lose hope. Sometimes scientific discoveries happen out of the blue. We could wake up next week with news that researchers have figured out the cause of fibromyalgia and that a cure is not that far away. It could happen. Let’s hope.

Now it’s your turn: If you could give anything to people with fibromyalgia, what would it be? Share in the comments! 

Comments

  1. JULIE ANNA Kolankowski says:

    MY NAME IS JULIE I HAVE TRIED ALL SORTS OF PAIN KILLERS THEY JUST DO NOT WORK. I AM STAYING NATURAL TAI CHI, YOGA, STRETCHING, HOT TUB, ART THERAPY, COUNSELING, DIET, PT, POOL THERAPY ETC. LIDOCAINE SHOTS, ITS NOT EASY BUT I AM STICKING WITH IT AND I THINK YOU ARE ALL SO GREAT WARRIORS ALL OF YOU AND I JUST WANTED TO SAY HOW PROUD I AM OF ALL OF YOU AND HOPE THAT YOU HAVE A GREAT PAIN FREE MONDAY. THE ONLY PROBLEM THEY HAS CREPT UP IS A PINCHED NERVE MY LEFT HAND IS TURNING BLUE AND MAN ITS REALLY HURTS AND WHEN THE FEELING COMES BACK CREEPY CRAWLIES. RAYNAUD’S SYNDROME. ANY ONE WITH THIS STAY AWAY FROM THE COLD. JULIE

  2. Jean Price says:

    After reading these comments again…I think we all would wish for ALL that’s covered in them to BE OUR WISH!! So much is needed, and so much stated here WOULD make such a difference to a person with Fibro…or really to any person with a long term disease that brings life limiting pain and overwhelming fatigue! May we be blessed by all of these comments becoming a REALITY…for each person’s needs!

  3. Jean Price says:

    I would give each person a Bemer pulsed electromagnetic therapy unit…and even have them first use it at a gathering at a beach house…while they also received change and loss information to help them understand and cope with all the feelings of grief a long term illness brings! They would learn how to grieve in healthy ways, too!

    I believe BOTH things…and also EITHER thing…the Bemer therapy,..and a good foundation about change and loss and grief…can change a person’s life for the better, (I would chose Bemer over other brands because of what a nurse I know has seen for herself regarding the results of many clients, and because its wave length works well for pain, even the competition says so!)

  4. Karen Milano says:

    Just found your blog, I am so frustrated – finally diagnosed with fibro after years of mystery symptoms and a myriad of tests, chest and back pain, anxiety, worsening to all over body pain, weird symptoms like pins and needles sometimes, heat sensation or cold sensation sometimes… muscle soreness always,everywhere. Ever specialist I see or even my GP – they all have differing opinions, too. Some don’t even believe Fibro is a thing!!… I am also hearing impaired.. it started when I was 27, I’m now 52. Severe hearing loss and ringing in my ears that no one has ever been able to decide why… but I suspect an early sign of the fibro to come.

    Anyway, It’s a relief to share experiences and learn from others who have been down this road, like you. Thanks for sharing.

    • Donna Gregory/FedUpwithFatigue.com says:

      Welcome, Karen! I hope you find the info on FedUpwithFatigue.com useful. Here’s an article that I wrote for those who are newly diagnosed. I wish I had something similar when I was first diagnosed: https://fedupwithfatigue.com/newly-diagnosed-fibromyalgia/

    • Cynthia Smith says:

      One of the best articles on what Fibro Warriors go through! It brought on much needed cleansing tears. I am blessed to have a deeply caring boyfriend who lives with chronic pain. He truly understands what severe pain, debilitating fatigue, unrefreshed/ poor quality sleep, brain fog, IBS, depression and anxiety does to a person day in and day out. Having someone in your life who truly understands is priceless.

      Thank you for all you do!

  5. First of all I hit the wrong button and subscribed to your blog again sorry. I am from Southwest Missouri where the temps can go just insane. For instance it is 72 today tomorrow will be 37 as most of you know what that does to us that suffer from severe Fibro. But to get to the main subject. I would wish for all of the sufferers a day with no pain at all, a sunshine day to sit on your porch and soak in the sunshine like a sponge and a night of sleep like a baby. Im almost 75 and I havent had those things in many many years. But Im never ever going to give up hope! I just know out there somewhere someone is listening to us and is working for a cure or to at least make us feel a lot better than we do. Besides that me and the Lord have a talk every day about this stuff. Take care and many blessings.

  6. If I could give anything to people with Fibro it WILL BE…… something I have been working on for the last 7 years. I would like to open a place where adults can come to learn/teach different crafts/arts. When I do open this center…it will be a place where my fellow Fibro Friends can take their minds off their troubles.
    AND it will also be a place where I can invite my fellow Fibro Friends to special sessions/workshops where they can share what they have learned about their condition, their successes with treatments, lists of people that can help them work towards feeling better.
    I have had Fibro for more than 20 years and it has only been the last TWO years that I have found a great doctor, a great therapist to deal with the anger & sadness that goes along. I want to share the facts that day by day there are more things out there to help.
    TWO years ago, I was thinking “to be or not to be…” I want to help others that are in “that place”. Bring others away from that place.
    I’m not cured, but I have been feeling and doing better.
    One day I truly hope to be able to do week long workshops to teach people how to eat, how to gently exercise their bodies and chase their demons.

  7. Jane K. says:

    I would wish that each of us find ways to brighten our mood when we are having a bad Fibro day. For example, buy a couple of magazines that interest you or a few DVDs that you’d like to watch, and save them for those days. Reading the Bible helps, too, as does counting your blessings.

    • McKenzie Lindgren says:

      Perfect wishes- I agree completely & need to remind myself & take, no, FIND the time to read my Bible. In the early years of having FM, when I was 18-21, the Bible was my salvation in the constant frustration I had with God & every healthy person, why me? What did I do that to get sick right as I was moving into my Baylor dorm room & be forced to come back home? Why was I completely bedridden while I watched my friends & everyone in my grade/my age I knew go off to college & share on FB how great their college life was & having independence (especially when I was losing my independence while they were gaining more and more)?
      Well I’d turn to my journal & pour down my feelings and questions & things I wondered about. I’d write when I needed to clear my thoughts on an important problem/situation & write down all the different outcomes or consequences, as well as the pros & cons. However, it was my Bible that gave me strength and understanding & help in living life now suddenly chronically ill. I wavered w/ the strength of my hope. Some days I decided hope was the worst thing possible because it always set you up to get hurt or disappointed or… u guys know… I kind of got off topic, but I do like your wishes.

  8. Yvonne Detres says:

    I live with a partner who has fibromyalgia and the strength, courage and determination she has is incredible especially that she gets up pushes her body to go to work. At night she cries herself to sleep with the pain she feels all over, the sluggishness and mood swings due to no energy and pain. When you don’t suffer from the type of symptoms our fibro..family and friends do it’s hard to imagine what agony and frustration they are living.with especially when doctors don’t understand and only care for their less then 15 minutes of patient doctor moment. She was denied a handicap placard application by her doctor telling her she needs to walk more as if she doesn’t push herself already. She takes no medication for her fibromyalgia pain. I myself suffer from CRPS and must deal with doctors who don’t even know what that is and they don’t bother to educate themselves. My sister and aunt both suffer from fibromyalgia each with different levels of pain and issues. Like their bodies are diteriating. So that said I would give them doctors who really care and is educated on how debilitating, depressing and how lonely the fibromyalgia makes people feel. I wish to give them another body and more people to understand their agony…

    • Jane K. says:

      Could she lessen her work hours? That would help. Also, there are many natural supplements out there for pain as well as energy boosters. Would she be up for that? If you’re interested, I can advise you of what I’m taking which I know helps my Fibro, or you can ask Donna what she takes. God bless both of you.

      • Yvonne Detres says:

        Unfortunately she cannot lessen her work load. They only have 3 employees in the mailroom and if she is out to long they will replace her. We cannot afford for her to be out of work. It takes 2 years or more to be seen by a Judge on Disabilty claim and with my income I cannot cover both our expenses. I am on disability and the 2 years I was waiting for approval she took care of me, at times we did not have enough for food. We would go to my mom’s to eat when ever my condition allowed me. I am scheduled for surgery in March and this has put more stress on her. Her pain level is high at the present.

        I would highly appreciate any information on the energy boosters and the natural supplements you can share with us. My email is y.detres@yahoo.com or if you would like to message me on FB brokenwngs64@gmail.com.

        Thank you, I really appreciate the help.

        Yvonne

  9. Sheila Trombley says:

    It’s not our fault 😢 I think we all at some point blame ourselves.

  10. I would wish everyone outwardly supportive family, friends and church family. Since that is what I do not have other than my mom and husband, I know how crucial that support system is in making it through this Disease day after day.

  11. Mary Erickson says:

    AMEN to every point in your article. It is refreshing to hear the concept of HOPE amidst all the pitfalls of this disease. Since receiving this diagnosis in 1990 ( the year the AMA officially recognized it) I’ve done everything short of enrolling in medical school to try to understand it. Because my symptoms read like a laundry list and as much as I’d like to just suck it up and pretend I’m ” normal”…aside from actually being normal, my wish is that those close to me would care enough to educate themselves on fibromyalgia. Because they don’t I feel even more isolated and withdrawn.

  12. My wish for fellow fibro friends is that everyone would be able to see how much of a struggle having fibromyalgia is that they can see the pain we all suffer through that it’s not an invisible made up disease. Fibromyalgia is real!

    • McKenzie Lindgren says:

      Yes! It is not invisible! These jerks that say “well u don’t look like you have a chronic illness…” or actual professors who have said to me “well, I have to be fair to the rest of the students, because you don’t look ‘sick’ so if I made exceptions for you & not them they would all be asking my why & it just wouldn’t be fair because we can’t tell that you have a disease because it’s invisible”. Well, 🤬 first, & second, you don’t see me when I’m suffering so badly I cannot attend class/ event/ work/ etc… bc I can’t get out of bed from the agonizing symptoms, which some are very visible. I guess a wish I have for all of us is to see the ignorance in the people who say these things & know it says more about them then it does about us or us having a disease or how much we suffer.

      • Yvonne Detres says:

        I agree with you. Just because we are not crippled, or crying due to our pain does not mean we are not. Some of us like me that I have a physical disability and just because I push myself but im screaming inside people think im fine. I hate when they compare their simple back pain to mine. If I can give them my pain both at my good day and at my very worst then I think they worst treat me different. Doctors and people have no idea the ordeal I go through having CRPS. They know what fibromyalgia is but ignore the pain people with the disease go through. They still think it’s a mental issue not physical. I feel bad for my ppartner when she is in pain and no energy. Sometimes she forgets what it feels like when I am in crisis which it’s 24/7 imagine that.

  13. Maureen Mollico says:

    Donna, Thank you for one of your best writings ever! Love it! It hits the nail on the head over and over.
    I get so much care, support and gained knowledge from your site. I wish for ‘you’ all that you wish for us.
    And I wish for all of us to be healed…and in the meanwhile… to find comfort, good and normal rest, energy and love. I live alone and it is very difficult to help myself at times.
    So, I have empathy for all without an in-person support system, such as myself. I do everything…on my own. Therefore, I also wish us better support. Maureen Mollico

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you for your kind words, Maureen! It really means a lot!

      • Yvonne Detres says:

        It sad you have to go through that alone. I admire you. The sad part is if you get home care and you own property they put a lien on your property so when you sell it they take a big part of it. Something has to change. The system is corrupt. Take care.

  14. Jeri Finn says:

    More people like you.! Because of your compassion I no longer feel isolated and hopeless. The wonder is
    how you find the strength to post this newsletter.
    Please know how very grateful I am for all that you do.
    Surely there is a special place in heaven for people such as you.
    May God bless you and keep you.
    Shalom and love,
    Jeri Finn

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you, Jeri! I get so much motivation and strength from my readers JUST LIKE YOU! That’s what keeps me going!

  15. If I could give anything to those suffering with Fibro it would be the courage, resilience and stamina to never give up. Keep moving forward searching for whatever might give you relief, be it an advocate—an understanding and compassionate friend, physician, complementary or alternative approach to wellness. Leave no stone unturned. Read, research, and trust your intuition to guide you.

  16. Arrielle says:

    Sleep. Truly restful sleep.

  17. Very well said. I am blessed that I can go grocery shopping and some without getting exhausted right away. But I do reach that point where I have to plop on the couch with my heating pad and not move for hours or even the rest of the night and I hate it. I am a type A personality and always have things to do. I am a wife, mom, horse lover and the owner of a small online business. I have been to countless doctors and none of them have been much help. They pretty much have tried everything they know and don’t know what to do with me. I have also been to massage therapy, physical therapy and a chiropractor. ONCE! Most of my pain is in my upper back, neck and head and I thought he was going to kill me when he worked on me PLUS he told me Fibro isn’t real.
    Hope really is key because I have my moments where I cannot even fathom living decades like this or even feeling worse. I am 46 and have a lot of life left!
    I can identify with fellow warriors who feel misunderstood. My husband is healthy and lucky that he rarely has any pain at all so he cannot understand what it is like to live in this body of mine. I get mad when my family don’t help out as much as I need them to. Sometimes I wonder if they really just don’t GET it or don’t care. I would LOVE to be able to hire a cleaning lady and a personal chef!
    I just bought Dr. Liptan’s Book and love it. I have learned a few new things in there and hope one day I can find a doctor who actually understands Fibro.

  18. Nancy says:

    I would give us a test/scan that would definitively diagnosis fibro the first time and then a complete cure.

    • Jessica W. says:

      I have just found out that THERE IS A BLOOD TEST FOR FIBROMYALGIA!!!!!!!!!!! It is very expensive, but most insurances cover part or all of it. Apparently, hardly any doctors know about it either. Everyone needs to check it out online: http://www.fmtest.com When you receive the results from the test, and it is positive, then you can choose to participate in the GENETIC STUDY and CLINICAL TRIALS for a CURE!!!!!!!! It has been thought that the tuberculosis vaccine may be the cure we are all looking for!!!!!!!!! Unfortunately, the TB vaccine isn’t given in the US anymore so it isn’t available. This is because TB is more prevalent in other countries, and we have all but eradicated here in the States. Please go and read about it on the website. I have already signed up and have dropped off the physician certification form at my Dr.’s office.

  19. What a great wish list for all of us. I would wish for everyone a loving, understanding, patient and encouraging partner like I have.

    • Kathryn Hylton says:

      Your wish is just what I was thinking, except I wasn’t necessarily thinking partner, though that would be great. I wish everyone had someone caring, compassionate and loving enough to actually listen to them and try to understand what they go through everyday.

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