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?

When it’s Not Fibro Pain

Over the years I’ve dealt with a lot of different kinds of pain. I’ve had broken bones, pulled muscles, sprained ankles, torn muscles, chronic Charlie Horses/nasty muscle spasms, concussions & even thrown out my back. Each of those feels different from each other, right? Before a Fibro diagnosis, they are dealt with appropriately.

I’ve also dealt with pain due to endometriosis, irritable bowel syndrome, CFS/ME, fibromyalgia, osteoarthritis, regular arthritis, kidney stones, gallstones… And each of those feels different from each other. I can even differentiate between IBS pain & Endo on my bowel pain.

I’ve dealth with all sorts of different types of pain..

But once you hit that one diagnosis, many doctors don’t bother looking past it. This happens way to often for those of us with Fibromyalgia & even ME/CFS.. When you go to the ER or even just to your family doctor with a new pain issue, many of us are spoken down to and even dismissed saying the pain is due to fibromyalgia. The one time I’ve have a pain that I said wasn’t fibromyalgia but it actually was happened when I had chest pain. It was costochondritis & while this is a Fibro issue, it’s understandable the first time or three that I freak out & head to the ER thinking heart attack.

Now, I’m lucky. I have had a great support system & have over recent years learned to be my own advocate without being a bitch about it.. I have not experienced this problem much with fibromyalgia. I did however experience this at the beginning of my medical journey in my 20s.

I kept having abdominal pain.. After being put off by my GP once or twice, him thinking it was just gas, he sent me after a 4 month wait, to a gynecologist. She did an exam & sent me back to my GP telling him to send me to a GI doc.

So, GP sends me to a gastroenterologist.. After a 6 month wait there, I was scheduled for a colonoscopy (that was fun..not) and was determined to have Irritable Bowel Syndrome.. After getting it settled down by diet & medication, I was still having abdominal pain. GI tells my GP to send me back to the gynecologist.

I had another 2 month wait to she her agai,n over a year after my previous appointment. She tells me, “you don’t have endometriosis”, because my symptoms were atypical, despite still being consistent with Endo. She did agree to do an investigative laparoscope to shut me up & “just in case” she was wrong. She Was Wrong. I had Stage 3 Endo across my abdomen. So the investigative laparoscoped turned into a treatment laparoscope where she tried to in size and burn off any visual endometriosis cells. She has to go back in 6 months later to get the remaining endometrial cells higher in my abdomen that she missed the first time because she “didn’t have long my enough tools”.

So I learned early on to be an advocate for myself, with support from friends & family. If you feel your are being dismissed, say so. Cuz yes, your pain *could’ be from your fibromyalgia, but it ‘could’ also be something else.

So, my doctor’s know that if something’s not right, I will stand up and say so, not taking no for an answer.

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Those who know me personally, would probably say to me, yeah, but what about that issue with your shoulder? To be honest, that is still a work in progress. Now that physio is back available, I’ll be asking my GP for a prescription & get that set up. Yes, it started in March, and I’m just getting to treatment now. But remember, alot of things closed here in Canada for quite awhile, so yeah, it’s taking a little longer to get things dealt with in this issue.