My Name is Fibromyalgia

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

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 anyhow I please. I can cause severe pain or, if I’m 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. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you 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 recovered from, or that car accident, or maybe it was the 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 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. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends 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 they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use 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, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️

I’m Fine

“I’m fine” is the biggest crock of shit going on out there.

If I ever say I’m fine, call me on it because I am lying. Lying blatently through my teeth.

I’m fine can mean so many things:

• I don’t want to talk about it.
• I’m trying to ignore it.
• I’m not able to deal with people today, and unfortunately (don’t take it to heart) that includes you.
• I’m in agony & don’t want to inflict my pain on others.
• Brain is mush. Thanks to my meds! & Thanks to fibro fog
• I honestly don’t know the answer
• My mental health is screwed up not the physical.
• My mental health is screwed up in addition to the physical.
• I’m getting pain from multiple directions and can’t focus

It’s most likely the first one or last two, but can be anyone of these. If I make emphasis of “I’m fine” please don’t push it.

Cognitive Issues with this Project

I have been sewing to some extent, all my life starting with Brownie badges & Barbie clothes.

In Jr high I made a denim pencil case, some board shorts, & a couple of pillows. Growing up I helped Mom with her sewing projects

Over the years I’ve branched out on my own projects. I made myself clothing as some of the plus clothing in the stores just didn’t suit me or were poor quality. I’ve made pants, overalls, capris, dresses, camp ponchos, Halloween costumes, etc.. I even helped my mom make pajamas for my nieces. Then there were covid masks – lots of COVID tri-layered home made covid masks.

I’ve made alterations of different types including simple hems, preplacing elastic waist bands, reinforcing hems, adjusting the fit of dresses, mending of many a dog toy, not to mention tons of buttons & camp & uniform patched &:badges.

So, needless to say, I have had a decent grasp of the concepts with sewing.

Recently, my sister asked me to help her sew slip covers for her outdoor furniture. I agreed before I found out there were 28 cushions to cover.

Now, I know I’ve had cognitive impairments that have impacted my ability to function. Family members have not noticed to what extent this has impacted me, until this project.

Both my Mom and my sister are stunned with the amount of problems I’ve been having. We all agree I am not stupid. I’m quite intelligent but there are so many other ways I’m having issues.

Poor Communication : I think I’ve told someone something that I thought I had. I also have trouble explaining concepts, ideas, solutions in a way that others can understand I will bet I’ve not explained the problems accurately or succinctly enough below to make most people understand issues I encountered. Then solutions to problems (see below) that my sister recommended were the same as mine but just from a different angle but somehow I can not able to explain it. It happened so many times & I was so frustrated with myself that I just let her do what she wanted, sometimes even if I knew it was wrong and I couldn’t explain why.

Ability to Remember / Relearn : I should know basic sewing skills like how to thread a bobbin, which way to sew a hem, how & where to place a seam, knowing what stitches do certain functions, how hard to pull the material through, how quickly to run the machine. These are all basic skills I had and in some cases have taken up to a week to remember or relearn.

Poor Problem Solving Skills : With sewing from our own pattern, I’ve encountered multiple problems, many due to missing the skills above. I had taken me days to figure out solutions to some of the problems for example, seams. I keep reversing my seems and putting the seem on the incorrect side, putting the rough on the outside instead in the inside resulting in many seams being removed and redone. Another is sewing only the fabric required & not accidentally overlapping other parts of the material – I still did this a week after starting. My sister even said my problem solving skills were so bad that I probably would not even be able to work at a job as basic as McDonald’s.

Inability to make corrections: This goes with the problem solving skills. I had a piece of material with one side of velcro on it. I sewed the piece on correctly. However, I had seen it on incorrectly. I had though I’d put the velcro on the wrong side, so I ripped it off. This made the initial blunder even worse, because after I’d switch the velcro to the top, I was then able to see that I had sewing it correctly to begin with, but had reversed the seam. So I had to remove the piece and the velcro again. I had to replace the velcro to the original correct side and resew the side piece coorectly. I was so frustrated and almost in tears because I never would have made this massive double blunder when I was younger.

Spacial Impairment : First, I have a good background in mathematics including social orientation and had even earned a small scholarship as a result, but my sister never had that as a strength. So, as I mentioned above, we were sewing from our own pattern, nothing pre established. It was based on a YouTube video my sister watched. I’ve had alot of problems understanding the way she has wanted me to sew certain pieces on & how they should work together. The only way we were able to visualize how things should be done was by actually putting the fabric on the cushions. Neither of us could get the orientation in our heads. For my sister, that was fine, but for me, it had been a strength and I felt so useless.

It just upsets me, writing this post, to actually write down how many problems I have, how many intellectual skills I have lost. I’m almost in tears. Frustration? Grief? I don’t know.

So because of how obvious it has become, my mom & sister have both suggested I talk to my doctor about these issues Because I can not explain the issues well, my Mom is coming with me, and I’ve asked my sister to write up her opinion. She actually asked me if she wanted her to write it in a way that won’t hurt my feelings. I know it’s bad, so I told her to be blunt & straight up. I know she has great communication skills, so she will be able to express my problems in a way I can never do.

I asked Wendy to write something up for my doctor & accidentally got the date wrong so this is the quick blurb she wrote for my GP.

"So working memory… able to hold things in head to process them, general memory.. asking questions that u had asked a few minutes before, making same sewing mistake many times e.g side sections.. still sew up past stop line after 8 corners, doesn't occur to you figure problem solve this e.g double pin… you came up with solution but I brought up the idea to problem solve this."

I’m pretty sure the issues are due to fibro because I *have* had assessments done and even several MRIs because of it.

I have blood work which I have done and I’ve scheduled a cognitive and memory test for the 29th of August. I follow up Dr Uju I’m September 6th

Cognative Issues, Test Results

Bloodwork:

Thee tests I had done were all negative, except that my hypothyroidism medication was at too high a level because of my weight loss.. So that’s been reduced

COGNITIVE IMPAIRMENTS TEXTING

The testing, imo was inconclusive. His word memory test was too easy to remember.. Dog. Tree. Ball. They’re related. Dog pees on tree, dog plays with ball. The shape he had me draw was a symmetrical pattern over lapping itself. With my math background that kinda thing is easy & not sure how it impacts my memory

NEXT STEPS:

So the meds are changed with a follow-up in three months.. if there’s no improvement, I’ll explain why I thought the test was inconclusive & request a redo

Cub Camp with Fibro – First camp after COVID

This weekend is Cuboree, which is our first in person overnight camp since February 2020. This means most of our kids have never camped in-person as a Cub. Of 21 youth, we have 2 who have.

Normally each group would be running independently with their own food and kitchen and supplies and such. Fortunately the Cuboree Committee decided to offer a meal plan The Scouters who are in the participating groups have planned the menu, supplies, equipment & food. The kitchen is being organized & run by council level Scouters who have no group . From us, they only require one Scouter from our group to help with food prep. Not me! Yay!

Normally for camp we would plan the menu, organize our equipment, shop for food and supplies as well as having food preparation done with the youth. We have, fortunately, none of that this year. We’ve been flying by the seat of our pants this year’s so I just gotta say Thank God The most prevalent leaders both have Fibromyalgia & the related cognitive issues so it’s been an interesting year.

& its supposed to rain on Saturday. *Sigh*

my apologies if this doesn’t make sence cuz it’s a busy week & my brain is now fried & I still gotta run the camp!

Could You Handle it? Constant Pain?

Yes, I live in pain every minute of every single day. It is the Nature of the Beast..

If someone tells you they have fibromyalgia or CFS/ME & are pain free, they are wrong. Pain free days do not happen. If someone is pain free they are either lying to you, lying to themselves or they were misdiagnosed.

Like all Fibromites, I have pain every single day. Some days is really great at 1-2/10, but it has been as bad as 8/10 for my kidney stones. Lately, I’m typically at 3 or 4.

The best I’ve been is a 1.. but a zero? No I have zero pain or painfree days.

^{I have Fibromyalgia. I live in sin every day. Yes, Every Single Day}

So, do I wake up in pain? Yes.

Do I walk my dog in pain? Yes.

Do I do groceries in pain? Yes.

Do I write my blog posts in pain? Of course.

Do I exercise while in pain? Ha – tricky one. Yes, if I can do so without triggering a flare.Do I snuggle up & watch TV or movies in pain? Yes.

Do I socialize in pain? Yup, otherwise I’d be a hermit.

Do I participate in personal adult extra curricular activities while in pain? Unfortunately, yes. There is 2 posts about this topic in the works.

Do do my Scouting in Pain? Yes, I do. Only one person in each group has any clue about how I’m doing Raksha 13 & I have become good friends through Scouting & Rainbow I’ve known grade 8 or 9, but through guiding & scouting.

Don’t I take meds to help with the pain? Yes, but he important word there is *help*.

Now think about this.

Would you be able to handle never-ending pain? Knowing that it will never, ever end? That it could flare-up & knock you out with, if you’re lucky, only a moment’s notice??

Could you handle the negative prospects, knowing that most Fibromites do deteriorate? It means you will likely get worse, not better.

How could you handle additional fibro symptoms like debilitating fatigue matched with bouts of insomnia? What about a loss of cognitive function where you can’t remember silly stuff like the phrase “tug-of-war’ during a game of Pictionary with the kids. How about feeling useless cuz you are unable to help your kid with his math homework because you don’t remember how it works – all you can say is the answer is wrong, but unable to explain why, made worse cuz you had a partial scholarship in Mathematics.

What about the other “smaller” symptoms? IBS? Thyroid issues? Sjorgens Syndrome? Sleep impairment? TMJ? Reynauds Syndrome? Muscle spasms or reoccurring ‘Charlie Horses’? Costochondritis? Muscle weakness? Myofascial Pain Syndrome? Migraines? Allodynia (touch sensitivity)? Chemical sensitivities? Light, noise or smell sensitivities? Restless Legg Syndrome? Paraesthesia?

Admittedly, you won’t have all of these all the time, but they can spontaneously come & go without warning. But is that something you can handle, with the never ending pain & fatigue?

Very few friends can identify how much I’m in pain. My bff can usually spot it a mile off. My sister & occasionally my Mom can tell by looking at me.. I have other friends & family who have learned some of the more obvious signs of higher pain levels.

So yeah, I’m in pain, even as I’m snuggled up in bed, relaxing & medicated. I am still in pain. Always.

Could you handle it?

30 Facts!!

Originally written for the 25th Anniversary with 25 facts,, this is a list of things you should know, from someone with Fibromyalgia. From someone who experiences it, not just studies it. I have taken the original, modified it and added to it from *my* perspective as my experiences with fibro are not the same as hers. OP info available at the bottom.

1. Every morning is a tough morning.
2. I can sleep all day and still feel like I just ran a marathon.
3. If I went out last night, I need a day or two or three to recover — its okay, it was worth it.
4. When i’m tired, let me sleep.
5. Certain foods make me flare up, For me that’s items like Ice cream breaded food products (like fish sticks or chicken fingers), mayo & salad dressing, KD, etc.. Some I know why, others no clue.
6. When I’m in a flare, leave me alone in a dark room but please check in, even if I don’t answer. It makes me feel cared for & loved .If I am flaring and I am responding, I’m likely asking for a ride to the ER.
7. Yes, diet matters, but in flare mode, all bets are off.
8. Yes, my face is swollen. No, I didn’t gain 5 pounds overnight… Well I could have gained, but not on my face.. So, Yes, that is a tell that I am in a flare.
9. I have many different sizes of clothes in my closet to accommodate flare vs. non-flare days. I currently have clothing from a medium ( very generous medium) to 3x.. I’ve lost weight, so likely only a few items & eventually they will go too.
10. Fibro Fog sucks. Ya know when you get absent-minded every once in a while? Misplaced your keys? Misread something? Forgot to water the plants? That’s Brain or Fibro Fog. While it happens to everyone at some point, it not the norm. For people with Fibromyalgia this is the norm. Every day. I have even lost my train of thought, mid-sentance. It happens enough that those close to me don’t bat an eyelash when it happens. Some even see it happening & will remind me of what I was saying. The worst, is fogging out when I drive & I love to drive, but have to be super careful to make sure I am clear minded.
11. Ask before you touch. Some days, I can barely tolerate the feel of clothing or even my hair on my skin. When I’m ok, give gentle hugs please — my skin & muscles may still be tender. But if I give you a bear hug, you can give me one back!
12. Bright lights, loud noise and too many smells can overload the senses and can cause nauseous (or worse) or kick in a migraine.
13. Allergies play havoc on my body. Scented products like perfumes & body products are typical culprits Sometimes I don’t even know I’m allergic until I experience it, So it’s a bit of Russian Roulette when I go into public because I can’t control what scents other people wear. Food allergies/sensitivities do not make life any easier either, especially when eating out.
14. I am a human barometer ( there’s a post around about that.. I can typically tell it’s gonna be too cold, too wet, too hot.
15. Yes, i am on medications, sometimes even alot of them. I have a decent relationship with the pharmacy staff, and I know exactly what all my medications are, the dosage, and why I’m on it & how it helps.
16. To me, car rides are joy rides cuz I really love to drive. I need to stop every hour or two to keep my legs from going numb or seizing up. It, for me, is so worth it! But so many with fibro feel differently than I do & equate it to a highly painful roller coaster ride.
17. Some days it’s OK to let my Fibro win. It’s a marathon, not a sprint.
18. I can get moody. You would be too if you were in pain all the time, be patient with me.
19. Don’t be surprised if I can tell your mood as soon you walk in the room. My Fibro/spidey-senses are tingling.
20. My day, week and month are carefully planned to accommodate my Fibro. Only important events & people like you are scheduled.
21. If I cancel my plans with you, don’t be mad.. Remember, I made plans with you, because you are important to me. I am trying and obviously want to hang out with you, so please keep any nasty commentator yourself as I already feel guilty.
22. Your friend with Fibro that says they have no pain doesn’t make me feel any better. Plus if they have no pain, they may not have fibro cuz *all* Fibromites have *some* level of pain at *all* times Alternatively they could simply lying either about having fibro or about being totally pain-free. Also, just cuz someone says they are “Good” that’s does not mean pain-free
23. “You should exercise.” ROTFLMAO. Have you considered going to the gym while you are in the middle of the flu with body-wide aches & pain, fatigue? Didn’t think so, so how can you expect me to when I have body-wide aches & pain and fatigue? Yes, I do exercise, but I’m not a hypocrite. Do you know how long it took from me to go from bobbing in the water during aquafit to get to my current level of exercise? Years!! It helps, that I have lost weight. Before you use me as an example of of someone with fibro who is ‘fit’, remember that I started my journey to become healthier & to increase my fitness level in the winter of 2012, almost 9 years ago. And I would not consider myself ‘fit’
24. Going to the doctor makes me sad & sometimes overwhelmed— it’s a reminder of my condition. And it doesn’t help that I have at minimum a half dozen medical appointments each month – GP, Pain Doc, RMT, Physio/Osteo therapy, Gyn, Neuro, Dental, Psych, mental health support groups, and one offs for tests like bloodwork, ultrasound, x-ray, MRI or CT.
25. There are zero no-pain days, but my low-pain days are my happy days. So if I’m looking good and acting good and I’m social, I’m better, right? No, just a good *low* pain day. Fibromyalgia is chronic & will not go away
26. Because of Fibro, the mandated downtime gives me the opportunity to write this blog, and I’m grateful. Unfortunately, some of that downtime does not even permit blog writing because the pain or fatigue is*too* intense, so I have missed posts.
27. Because of Fibro, some Fibromites get to spend more time with their families than if they were healthy.
28. if i am being a dick about my health, you will not change my mind. I have to figure it out myself. For those in my life who put up with that for years, I am sorry.
29. Because of Fibro, I’ve become part of a strong, supportive community that reminds me I’m never alone.
30. Yes, I have depression. No, it’s not because of my fibro. My depression started at age 16, but fibro, we believe, started from Mono when I was 19-20. So, obvs they started at different times plus I do know the triggering event that started my depression.

Original published by Puja Rios on May 11, 2007 at https://www.huffpost.com/entry/25-facts-for-fibromyalgia-awareness-day_b_59148663e4b01ad573dac1c2

A Letter from Fibromyalgia

^{A Letter from Fibromyalgia}

Hii!! 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 anyhow I please.

I can cause severe pain or, if I’m 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. Try to have fun now! I also took Good Sleep from you and, in its place, gave you 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 recovered from, or that car accident, or maybe it was the 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 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.

^{Pain pills, sleeping pills, energy pills, anti-anxiety pills}

You will be put on pain pills, sleeping pills, energy pills, anti-anxiety pills, antidepressants, anti-epileptic or anti-convulsant pills. You will be told you are suffering from anxiety or depression, given a TENs unit, get massaged. You will be told that if you just sleep and exercise properly I will go away, told to think positively. You will be poked and prodded. MOST OF ALL, you will not taken as seriously as you feel when you cry to the doctor how debilitating it is to live your life, every single day.

Your family, friends 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 they will say things like “Oh, you are just having a bad day” or”Well, remember, you can’t do the things you use 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, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

Ultimate in Fibro Fog

The best example of Fibro Fog:
My best friend’s Birthday is this week.. & as usual, I bought her gift ages ago. I have one problem, well two actually..

1. I don’t remember where the heck I put it.. I know it was ‘someplace safe’. I should know better – if it’s not in my line of sight it’s not safe! Lol..
2. Unfortunately I’m not even sure where to even start looking because of problem number two. I don’t remember *what* it was.. I don’t recall what I bought her. ☹️

God help me.

---

Edit16/04/21: I finally remembered *what*, now I have to figure out where, but I think I’m good. 👍

Ongoing Holiday Crash

Most of the time when I have a crash in the holidays I end up in the hospital because of how bad the pain can get.. I usually manage for a few days at a level 7 or 8 out of 10 and after that, I’m in the ER.

This year, while the pain has been up, it hasn’t spiked to that level yet. And I hope it doesn’t. But unfortunately I have been in less higher level since the 26th of December – so, 17 days days now, which is unusual, for me… A severely sucks..

But I called my pain physician in Scarborough for an appointment on Monday & see my other pain doctor Tuesday. . With pain levels at a 5 or 6, I can deal, but only to a point.. after more than 2 weeks, I’ve hit that point..

Wish me luck!