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?

My Fibro Is Not Her Fibro

I’ve written on this before, but that seems to be one of the lost articles in the gap of time. So, I’m taking another stab at it

Do not compare your health with anyone else’s. They are not really comparable beyond the basics.. Yes we may both have fibromyalgia, but my symptoms & treatments are different from everyone else’s . It not like comparing apple & oranges, but more like apples to apple.. a Delicious vs a Granny vs Macintosh. They all have the same basic characteristics, but are still significantly different.

Fibro, like apples, have different but similar forms..

For example, a friend also has Fibromyalgia. Her diagnosis happened alot quicker because she knew me & I had alot of the same symptoms.

Now, while we both have fibro, we experience it differently and treat it differently. Our symptoms overlap with the obvious: pain, fatigue, IBS, fibro fog, sleep impairments… But from there they differ. I have mental health issues, significant cognitive issues, chemical allergies, speech impairment, & TMJ .. Her issues include balance problems, vertigo, chronic migraines, difficulties maintaining body temperature .. This is by no means an exhaustive list for either of us.

She is able to take some of the pharmaceutical treatments.. They work for her. She also sees a chiropractor on a regular basis. This helps her. She is able to work full time. I’m not saying she does not have pain or fatigue or anything else. I am also not saying she has less pain or less fatigue than I do. I’m saying we experience it differently, we react to it differently, and we treat it differently.

Myself, no, I am unable to work due to my symptoms and have been for many years. I am currently on long-term disability . It has taken a long time to get my symptoms under control with a very different treatment plan than my friend. I’ve tried the pharmaceutical route & most of those medications do not work, or work well for me. In addition to regular visits to my pain doctor, I have alternating appointments (well before & after COVID19) with an Osteopath & RMT ATVs local health clinic. I also go to the gym. (Before you jump on me, read my post about my activities at the gym))

So, you can see, two very different people can have very different symptoms, very different treatments, and very different results.

We both have Fibro but we are not the same.

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.