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

Be Cognizant of Your Behaviour.

I’ve mentioned this before and some may not be clear with what I mean. I’m not talking about being rude or nasty, but that is unacceptable aswell. I’m talking about the things you are not subconsciously aware of.

Touch.

^{Casual touch can be excruciating}..

This is probably the biggest issue. People touch people. It happen. Even when sometimes you are trying not to. Like on a crowded buss or subway car, especially during rush hour. There’s also touching that you may not be aware of. An intended gentle affectionate touch like a hand on the shoulder could easily cause excruciating pain. While you can’t help the contact on a transit system, you can be aware of how you express affection to someone with Fibromyalgia or any other chronic pain condition. The easiest way to know is to simply ask.

There are times when you will forget. My mom forgets and I’ve had fibromyalgia for over 20 years & chronic pain for another 10 before that.. So if you forget, if you remember as your doing it or right after, apologize. If they mention it to you later, apologize. If they don’t accept your heartfelt apology, then they are just being jerks. But if they don’t comment, then either you likely had very little impact, or they just don’t feel comfortable to discuss it with you. Only you’d be able to tell.

Scent.

There are many scents people react to. Anything from expensive perfumes to little Jimmy’s upturned stomach. Many people with Fibromyalgia, Fibromites, do react to various smells may of them synthetic. As a result we generally can not be around the source of a scent.

^{Longing Perfume. My very first non-allergy reaction to a synthetic substance.}

Perfume, even the expensive stuff is an excellent example. While you may think you are smelling like the bee’s knees, but in fact you could be harming someone else’s quality of life. Other examples include moisturizers, bath products, tobacco smoke and laundry soaps/fabric softeners. Reactions are similar to an allergic reaction and while not anaphylactic it can cause anxiety which could result into a panic attack. So if you must make yourself smell ‘pretty’, Please use a light hand cuz the person with fibro who rides up on the elevator with you at work, would very much appreciate it.

There are some more natural scents that tend to both us as well. I am fortunate that I don’t react poor to natural scents, except onions but that may have more to do with my aversion to onions.. 😆

Sight & Sound.

While not as much you can do about this, just be aware that many of those with fibro also have sensitivites to bright lights & loud noises. So no going into their room to wake them up with opening the blind & the window with a 20 piece band. That could severely thaumatize them – I know it would for me.

Taste.

Well there’s not a lot you can do suits you are not actually feeding them or forcing food down the throat.. lol.. You can simply be aware and take into consideration food sensitivities if you are aware of them. The last thing anybody wants is for someone to spend the evening in the bathroom, stinking it up.

General rule of thumb for me, the more natural, the better.

Meds Crash

As I mentioned in an earlier post, I have a pain/fibro doc who gets it. One of the things he did was to put me on a pain patch.

Some of you may know that I have funky allergies including products found both in food and adhesives. For those who didn’t know, you know now.

I’m sure you’ve figured out where this is going.. The pain patches are stuck to the skin via an adhesive. Now, fortunately I’m not allergic to all adhesives..

But, the default brand my pharmacy is called Sandos & I am allergic to it. How’d I find out? The hard way. These patches are supposed to release a constant dosage into the bloodstream, but when I react, I get itchy and the local area becomes inflamed, red and raw. When the skin is inflamed, red and raw, it doesn’t absorb well. So I get the lovely sensations not only from withdrawal, but also from the increased pain levels cuz I am not getting my meds. Now you’d think that after the first time they’d be diligent and ensure that I don’t get the ones I’m allergic to, but no, they didn’t save anything on file *eyeroll*. Also, you’d think that *I* would also be super diligent. Nope! I realized when I woke up Saturday (put it on Friday night) that I was reacting, again. And of course didn’t realize the withdrawal thing until an hour or so ago. Since the original patch is pretty much useless for me now, I’ve yanked it off & disposed of it. I’ve also put on a fresh one in a very different location. Hopefully that will help the withdrawal & pain issues until I can get the ones I’m not allergic to tomorrow. I’ve already had my pharmacy order them, just need the corrected script from my doc..
Yay. *sigh*

Brain Fog

Brain Fog
By Kristy Bassett

Brain fog is possibly one of the most frustrating symptoms I have, not being able to think clearly can lead to major problems. It can not only be embarrassing not being able to think clearly, it can be dangerous.

The first thing to learn when you suffer brain fog is to never participate in any activities where you could be a danger to yourself or to others while it’s there. For me this has meant avoiding cooking and driving when the brain fog is a problem, this may be unavoidable at times, but where possible stick to this rule!

So what can be done? Unfortunately there are no miracle cures to lift the fog, but it can be managed. It’s worth investigating what is causing the fog in the first place.
Possible causes:

poor sleep

autoimmune disorders

hormonal imbalance

chronic fatigue/fibromyalgia

pain medication or the pain itself

allergies

iron deficiency and other nutritional deficiencies

blood sugar drops

dehydration

If you are able to pinpoint the cause, it may be possible to treat it simply. For others, the cause may not yet be known, or if it is known there may not be any more that can be done about it.

Managing Brain Fog:

Try to avoid activities that are beyond your capacity, if possible rest is advisable

Caffeine: If there is no choice but to be able to function, it is the one time where stimulants such as tea or coffee may be a good idea to get through. This shouldn’t be a routine, but can be a crutch if necessary. Remember that once the caffeine has worn off you will likely feel worse than you did before the caffeine consumption. Warning: regular caffeine consumption is not recommended for those with fatigue.

Supplements: MAY help if there is a deficiency to improve energy: the most beneficial to energy are B vitamins, iron and coq10.

Manage your pain: (if this is the reason) as well as you can

Make notes as reminders: if you have to remember a lot of things in a day, it may be handy to write a list on a notepad to carry around with you, so things can be ticked off and not missed

Set reminders: this can be in a calendar, or diary, or through a computer program, whatever is going to be something you check often. Reminders can be for events such as a birthday, or when a bill is due as an example.

Take regular time outs: even if you are busy, it’s possible to take 5mins to shut your eyes, or do some stretches. This can help clear your head and stay focused; if your mind isn’t well focused the last thing you want is to overwhelm it.

Be sensible with your activities: Finally tackling some great written work may not be the best idea at these times, reading can be a good idea, but keep it something you can easily focus on, don’t add to frustrations just because you’ve always wondered if Dickens really is that good.

Work when you’re at your best: If it’s possible, try and work at the best time of day for you. Some people may find that the brain fog is worse earlier or later in the day.

Eat regular meals: avoid high sugar meals when you eat. A sugar spike means your sugar will drop. You don’t have to be diabetic to have sugar spikes and drops.

Avoid known allergens: both environmental and food allergies.

Drink plenty of water

Avoid chemical exposure: If you are chemical sensitive, be sure to avoid chemical exposures from creams, cleaning products, etc. Those with chemical sensitivities may find exposure triggers brain fog

Open a window if in the car: I cannot actually explain this, but even being a passenger in a car has been a trigger for brain fog for me personally, opening the window a touch can help this.

Deep breathing: It could help to clear your head just to do some simple deep breathing, it helps to swing your arms above your head as you breath in, and slowly lower them as you breath out, the action will help open the diaphragm and allow for deeper breathing.

Exercise: This recommendation comes with a warning, for some people with certain conditions this could be a very bad idea. If the fog is a side effect of extreme fatigue, physical activity could make it worse, in these cases rest is what’s needed. For others a short walk may clear the head.

It may be helpful to keep a diary; this is helpful to monitor any symptoms. Keeping a record of when the brain fog occurs can help identify possible triggers. It also allows you to identify what makes it worse and what makes it better. A little trial and error of techniques to manage it such as those mentioned above will be needed to find what works best for you.

Source: The Recovery Room – http://www.recoveryroom.com.au

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My own comments:I agree with most of What Kristy has said..

Pace yourself at all times, and rest as needed. Rest is taking at least fifteen minutes to relax, preferably laying down with your eyes closed, otherwise you are not truly giving your body a break.

Water is awesome – it helps clean the toxins out of your body, a natural flush so to speak. 8- 8oz glasses of water. Myself I can stomach that much straight water.. I half juice with water when I can.. Makes it easier.. But not too much cuz juice can be high in sugar & calories.. An alternative to crystal light or other 0 Calorie powder if you can tolerate the sugar substitute.

Skip the caffeine.. In addition to the crashes & everything Kristy mentions there is also the fact that if you drink too late (& how late is too late depends on the caffeine & sugar content) it will keep you up and be detrimental to your sleep..

Eating regularly is my biggest problem. The recommendation is three small meals a day with three snack in between.. This allows your sugar levels to be more consistent over the day that sparatic eating, as well as the simple 3 squares a day. You are also less likely to snack. If you are going to snack, try & make it veggies.. Keep pealed carrots & celery in the fridge and have a stock of fresh fruit around. I usually avoid raw veggies, ignore the fruit & go for cookies. I do find it easier to make salads at night with dinner than a 2nd veggie because I keep a greens salad mix in the fridge that is ready to go & you can add more if you want; cucumber, radish, pepper, apples, celery, or cheese are options here. Just a tip to make things a bit easier.

Reminders are necessary for me.. We’ve tried also of different plans and tricks to help with this. We’ve used a white board. We’ve used an automated to-do list on the web. We’ve used an online calendar, as well as a local (on my pc) calendar – this helps keep my appointments organized as well as birthdays/anniversaries, but not daily stuff around the house. We tried post-its, and notebooks but I’d loose them or start a new book/list. I currently have a written to-do list that we re-evaluate daily or every other day to keep me on track, to adjust for pain & fatigue, and to prioritize tasks.

Avoid allergens – I think this is a no brainer.. gets tested if you haven’t already. I have my environmental testing done.. need to get my food testing done.

Exercise, in my opinion is necessary, despite what Kristy says. I try to do yoga & aqua fit regularly.. I agree that some are not able to do that much, so even a walk around the block, or one of those exercise videos specifically for Fibromites. I have one and it’s all based in a chair. There is also chair-based yoga in some areas that are available, usually for seniors.

Kelli

Welcome !

Welcome to my Blog!

My name is Kelli.. But I am also known online as Neon Rose and it’s variations (I answer to the name Neon, IRL).. I am also known, in scouting circles as Koolaid – yes, as in the drink (long story, I’ll tell ya some time)

This blog is about my life, my medical issues and any information I can share thereof.. I have been diagnosed with Fibromyalgia, Endometriosis, Allergies, Sensitivities, Asthma, Irritable Bowel Syndrome (IBS), Depression, Chronic Fatigue Syndrome (CFS/ME), Hypo active Thyroid, Restless Legg Syndrome (RLS),  Osteoarthritis (OA) and a host of other issues that are part and partial to go with the above mentioned. The focus here is going to be mainly on Fibromyalgia (hence the title), but will also include fibro-related issues and Endometriosis.

Why, you ask, primarily on Fibromyalgia. Well, cuz Fibro is the most significant issue at the moment.. My endo is under control, as is my asthma, RLS, allergies, etc.. Also, Fibromyalgia is also the least understood, most misdiagnosed and under treated condition that I have. If I can just help one other person, then, I’ll feel awesome cuz I have helped someone. (Why do I suddenly have a girl guide song in my head? *shrug*).

What aspects am I gonna cover? Everything I can. If you look at my categories you will see I plan to cover many areas of traditional and non-traditional medicines including Eastern medical philosophies, faith, as well as non-medical areas of life. I also plan to cover support (financial & emotional) and daily living and coping.

If you have questions, please feel free to ask.I will do my best to answer.

Note that all my content does not necessarily belong to me, however sources are always listed and author if available, if it is not original content. Please see disclaimer post for copyright information.