Tuesday, November 19, 2019
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Siobhan’s Story (Fibromyalgia, CFS)

Fibromyalgia / CFS Power StoryI am a silent sufferer of fibromyalgia and CFS. People think I am lazy. When I tell them that I am a sufferer of these disorders, they roll their eyes, let out a chuckle , or just try to appease me by saying “oh, really?” I would like to give these disorders more publicity. I think people think that they are fake.

I struggle to get through each day as the fatigue takes over. I am close to tears by 3 pm. I have to still perform the duties of mother and wife. My husband and kids get angry with me because I am always tired. I am fighting like a girl every day to do normal activities. There are probably 2 people in my life who understand and ask me how I am feeling. I need to bring some awareness of the pain and fatigue that I am suffering to all the people in my life.

Siobhan
Massachusetts
Submitted 2-9-12

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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12 comments

  1. I know what you are going through. I have alot of pain and fatigue everyday as well, it is hard for my family to understand why all I want to do is sleep on my bad days. Things that are easy for them to do quickly take me a lot longer because of the pain. I have Lupus. I definitely agree with you about bringing awareness to these diseases. Never give up, never give in and keep getting the word out. That’s the only way we are ever going win our fights.

  2. I too have Fibro and CFS and understand your situation completely. I have been able to manage my “disabilities” using a few simple and affordable techniques. When finally diagnosed I refused to let it beat me – I have too much I want to do to lay down and let my body rule the roost. I would be more than happy to share what I’ve done with you because I understand where you are at and would like to help you climb out, think clearly and function well on a daily basis. Life is far too too short to be forced to sleep it away. Hugs and hope. Pyper

    • Hi Pyper, I suffer from the same as you. Could you please tell me the techniques that you use? I have been looking for years for something to help and have yet to find something that works. Thank you for sharing. Teresa

    • Sylvia Fountain-Wilson

      Hi Pyper!

      I applaud you for your victory over this terrible disease that is hardly recognized, but thanks to stories like these, people are beginning to learn about Fibromyalgia. I suffer from this horrific disease as well as Degenerative Disc Disease, CFS, and RA; I was wondering if you would share what has helped, and list some of the foods, exercise, etc. that helped you?

      Thanks!

      Sylvia

  3. I have Fybromyalgia, RA, Lupus, Celiac, Sjogrens and I have that fatigue in my diseases I have no idea which disease is causing it because they all interact with one another. I am now to the point of sleeping 16 hours days often and so when I’m up I may be up for 8-12 hours and then back down – its bizarre and I never know the day or time when I wake up its really hard and the pain I go through is enormous sometimes. I am on all kinds of pain meds which doesn’t seem to be the fatigue because I sleep without them too either way I sleep. I used to be the woman that did it all took care of my family went to school full-time and worked. Now I can’t even keep up with the house. Luckily most of my kids are grown and only teenagers at home. I will keep fighting this as best I can. Maybe my drs will find something better to help. I hope they find a cure to all this.

  4. I understand what you are going through hun. I have chronic fatigue and I also believe I have fibromyalgia and I think it all stems from having Stage 3 endometriosis. I have a select few people in my life who I can speak with who understand my daily struggles but the people I really need support from (family, my bf) dont understand and often call me lazy among other things. People like to judge what they dont understand. I know the feelings of isolation and shame of not being able to do the things you used to, but please know you are not alone. If you ever need to talk feel free to email me. 🙂
    Pyper.. can you share the things you have introduced into your life that helped renew your energy and allow you to function day to day? I am always looking for new ways to cope… Thank you!!

  5. You are not alone kiddo. I’ve had it for 19 years.

    My cure for these people was to start emailing them anything related to fibro and chronic fatigue. I printed out pieces for those with no email. If just one message got into their thick heads it put me one step closer to them understanding.

    You need to look into the studies being done at Stanford University in California for Naltrexone.

  6. girl, I feel your pain literally! I was diagnosed with fms 17 yrs ago, I have disc degenerative disease and severe migraines, a lot of people cannot sympathize if they haven’t been there, stay strong there are new things coming out everyday, I am tired all the time as well,, pain wipes you out! When I have a good day I overdue it and end up worse the next, just stay strong, you are here and are going through this struggle for a reason. I feel this pain humbles us some how and makes you so thankful for the good, hang in share your story, people would much rather believe someone is lazy than in pain so they can be more comfortable, knowledge is power!

  7. I completely understand how you feel. When I first started having problems, I was in my early thirties and it was around 1991…finally went to the dr. after I passed out at work and was told other than being a little dehydrated that everything was normal and it sounded like I may be depressed! I was extremely fatigued all the time; my joints were starting to hurt and I just felt like I had the flu all the time (dizziness, nausea, headaches, etc…) Well, a few yrs later and I’m still feeling bad….I finally had a dr. that did some different tests as I was having low grade fevers etc… My ANA titre was positive and was told then that I may have Lupus but they weren’t sure….at that time I was diagnosed with fibromyalgia; more problems and more testing and was told I had signs of sjogrens syndrome; more testing showed connective tissue disease and finally in 1999 I was diagnosed with Lupus (systemic) when anti-DNA testing came back positive. It was a very long process for me….I feel lucky in many ways that the Lupus is not “severe” and has not affected my heart or kidneys, just mainly my joints…but I am in constant pain (some days worse than others) and have already had surgery on my shoulder and a complete knee replacement and am looking at more surgery for the other shoulder and knee in the future. I have constant sinus issues that they say may be due to the Lupus also…oh, and also have degenerative disc disease! I am 55 now and take each day as it comes and try to stay positive each day about something! I have three grown children and a granddaughter that give me a reason to try to take care of myself so that I can function as “normally” as possible~even though I no longer know what normal is…. Stay strong for you and hopefully your family will come around and understand that you are not just “lazy”! I fight like a girl every day!!

  8. hello,

    i know so much how u feel, it sounds just like you are telling my story, except i’m not married, i am a single mom of two, my kids are understanding, but i do think s’time they dont’ realize how bad it is. i wish you the best, i would like to help in any way to publicize this diagnosis, and it’s issues.

    good luck,

    Linda

  9. I understand completely, Siobhan…I have been fighting CFS since 1989…in the beginning, I could barely walk without help….couldn’t do anything for myself. It did get better over the years but I have never felt like I did before this illness. It is a life changing disease, and because its victims look healthy, they are often accused of being lazy or hypochondriacs…but this is as real as anything could be, and it feels awful. In my case, it robbed me of my career and in a large part, my self esteem! I was lucky enough to find a doctor at the University of Miami who offered support and suggestions, even thoug she was not able to cure me. And my family was pretty supportive, althoug there were the ones who acted like I was just exaggerating…this is a terrible disease, and my heart goes out to you.

  10. I’ve had Fibro for years too and have a hard time getting people to understand. I had cervical cancer last year (beat it like a girl!) and it seems to be a hundred times worse now. They say it’s scar tissue. I don’t sleep well at all and am in a lot of pain when I get up. The only thing, ironically, that helps me is constant movement–no matter how limited. It’s hard when you’re so tired all the time though. A regular catch-22. Good luck in your fight and know there are a lot of us out there with you!
    Annette

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