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Open letter to those with Fibromyalgia

Jan 19, 2016 2:54 PM

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fibro letter

Beth Griffin
to tessawauson
Dec 28, 2014Details
Dear Miserable Human Being:
Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!
In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
Have a nice day!! (ROFLMAO)

This is an excellent description of what fibromyalgia does or can do. Just thought I would share it with you.

Jan 19, 2016 2:55 PM

Ignore the first part of it. I copied this from an email.

Jan 19, 2016 3:57 PM

Yes. I wish I could copy this and put it on my Facebook page. This is great.

Jan 19, 2016 4:05 PM

Amazing, nails most of my life anyway , lovinlife85 I would love a copy also to put on my fb wall but I can't copy and paste from here even if its allowed. Take care and wishing you easier days ahead ,thankyou for sharing this fab letter with us. 😊

Jan 19, 2016 4:59 PM

Yes, excellent discription!! Wish I too could share! I hope to make Fibromyalgia & CFIDS friend here! 😞 so far no luck....

Jan 19, 2016 7:01 PM

So accurate! Fibro sucks

Jan 20, 2016 4:59 AM

All of it's truly right I goes through it everyday.

Jan 20, 2016 5:08 AM

Hi Lovinlife85 , I just emailed you for a copy of the letter

Jan 20, 2016 2:32 PM

TiredOfPain, you're one of our community family members. Why would you think you have no friends here. We are all here for one another. We pray for each other, comfort one another whatever it takes to help each other through. I'm sorry if you feel left out. Is there anything I can do to make it better?? By the way, my email is Ladygirl94@aol.com if you want to get hold of me any time. {{{Hugs}}} 💕🙏🏻🌻

Jun 04, 2016 1:07 PM

This is awesome. I just read this and it perfect. I was just diagnosed with fibromyalgia a few months ago and well, it's been a struggle. Having a rough day now. My whole body aches and pulses and it's an almost trembling like feeling. Insomnia is starting to act for a few days now and I just feel drained but I cannot sleep. Exercise does help a ton. Does anyone know any other tips to relieve the pain and trembling feeling! I would appreciate it. Thank you!

Jun 04, 2016 2:08 PM

Hi, I noticed you just posted about fibro an hour ago, but the post before yours was 4 mos ago so . . . I just want to say Hi! I have fibro+++ too. And I emailed for a copy of that description also.

Jun 04, 2016 2:31 PM

I really don't know much that helps besides what meds can do. I'm on gabapentin, tramadol, and other mild doses of stuff that helps with the pain and trembling. I was dx in 2003.

Fibro and other dx (see my profile) definitely has changed me. It's taken over my entire life, my friends, family, home, job, and entertainment, plus peace of mind. But I say: Never! Never give up! Do not surrender. Though I have felt on the verge of it many times. No judgement for feelings.
At least we have each other to understand and support us.
Anything you need, just ask.

I'm a California girl, living in Utah. And as weird as that is, I have my daughter, son in law and grands here. For me, it's not completely horrible being awake at night, at least it's quiet. Disruptions take me off course but I manage.

I go to a pain clinic and see my PCP regularly. What do you do?

Jun 04, 2016 4:59 PM

I have already been diagnosed with sciatica, but I just found out from my neurologist I may also have Fibromyalgia or rheumatoid arthritis. I have accepted the fact that this is my new normal. Although, I cannot fully control the pain, I can control my response to the pain and I can control if I am going to let this health challenges steal my life and joy. Don't get me wrong I have flare ups every few months , so I really know the struggle to stay focused. It's frustrating and challenging. Neverthheless, I plan my mood. Almost every morning, I listen to music that lifts my spirit, and since I am a Christian I watch Joseph Prince, Joyce Myers and T. D. Jakes on the Word network (still, what works for me, may not work for you, so you have to find out what works for you 😊). I don't want the pain to determine my day, because if the pain or my health challenges determined my day it would be depression and hopelessness. It would be letting go of all my goals and dreams in life. It would eventually be suicide. That's why I chose to control my mood and my thoughts.

Now going back to the flare ups. The reason my flare ups hit often is because I change my exercise routine. In the pass, I would add leg weights, a higher walking incline, etc. Now, I have decided not to add anything else to the routine. I don't deal with fatigue, but I have been exercising for a few years now. Along with the meds; physical therapy, aquatic therapy and the spa (whirlpool) does work. Physical therapy and aquatic therapy will take a few weeks for you to feel a positive difference, but it does work. I also use deep heating rub and/heating pad when I am having a difficult pain day.

The truth is chronic pain never goes completely away, but you can have more good day than bad day. I have found I deal with more intense pain when I don't exercise. If I go a week without exercise, the pain is unbearable. So, now I don't go more than 2 days without exercise. Lastly, the best part for me is with exercise I can reduce my medication intake and I have more energy.

Lastly, speaking of energy, some medications take away your energy. For examples if you take a muscle relaxer more than once a day, it with deplete your energy. Now, I only take my muscle relaxer (Tizanidine) at bedtime when needed. If I have a flare up, I may take it twice a day, but I know I won't have a lot of energy that particular day.

Jun 11, 2016 9:42 AM

@autoimmunes @Shell

Thank you so much for the kind words. They really help! :) yes, I was just diagnosed I. January of this year for a few reasons. I have severe carpal tunnel in both my wrists and arms and thought it was due to my job, where I type all day and it was just a ramifications of it. But, I had gone for carpal tunnel testing the EMG? I get them mixed up. I didn't have carpal tunnel at all! My mother has fibro. And I got dx by the neurologist there. I feel just drained. I don't take any medicine yet. I might have to down the road but for now it's just Tylenol and warm baths and yoga. Which helps a ton.

Well, actually I believe I had fibro since October. My BC failed. U began to go migraines constantly and ache all over. Anxiety at insane levels and mood swings. Got off my BC and things leveled out.

Also, I noticed extreme weather makes things worse! I live in AZ. When I had posted it. It went from 90 degree weather to 117 overnight! Plus humidity. It was awful.

I try to relax as often as possible. And keep my spirits up with drawing and reading and listening to music. Most days are easy. Some are just a little tough and you push through. Even though you just want to cry. The brain fog makes things worse. I get anxiety whenever I get brain fog. Maybe because I'm just not used to it? I keep thinking something else is wrong and his can't be normal. Am I ill? It's sucks. But, you get through! Humor is the best medicine. I tend to watch Whose Line Is It Anyway whenever I feel blah and down!

Hm. I do have to exercise more. That should clear things up more. I will try it. Thank you for the advice! It's really appreciated.

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