So, I’m home from my trip from FL with my sister.. It wasn’t too bad driving down. It was short days & I got to nap in the car. She did most of the driving. I dunno if she trusts my driving. Lol!
I had a blast! I thrive in the summer here in Canada and the average temperature was about 30°C.. so about 90°F or warmer some days.. So, I did really well, considering..
Lots of time laying in the sun relaxing.. getting tons of Vitamin D.. Only one sunburn on our first day down at the beach . Kept hydrated.
Did a day of shopping . “day” = 2.5 hrs including the ½ hour break.
Did Disney, Hollywood Studios.. Which is actually a fairly small amusement park for a major park.. Was way smaller than what I remember Canada’s Wonderland to be.. Did 4 rides, 4-5 shows, met Chewy, checked out alot cool Star Wars stuff.. Was awesome..
Sisters on the Loose @ Disney
Chilled the next day & went out for dinner theatre which was cool..
Dinner out the next night, with some provision & souvenir shopping.
So, not a huge amount of stuff, so I didn’t over do it.. But admittedly I was a little extra medicated all week, tho I don’t think my sister knew.
Hardest part was coming home.. 30° gorgeous & sunny in FL when I got on the plane, 7° overcast & rainy at Pearson in Toronto..
Now that I stopped the Resulti, I am no longer eating obsessively. However, despite better eating habits and resuming activities (was injured for a few months), I have found it very difficult to lose weight. I am still hovering at the 40-50lb weight gain.
This really sucks. If anyone has any suggestions I am open to hearing from you. See my next post about my exercise.
I started talking to a new fellow in October, and started seeing each other in late February. So he’s really only seen my Rexulti appetite.
Last weekend, for Canada Day I went over for pool, dinner & fireworks.
I grabbed breakfast on my way to his place. He was surprised that I had waited so long to finally eat cuz it was early afternoon. On the Rexulti, I was downing at least one full bowl of cereal the second I woke up, if not more. But now, I don’t have this passion, obsession, cumplusion to always eat.
He offered me snacks back at his place which I surprised him by declining. While dinner was cooking, he offered me nachos for a quick snack which the chicken was in the oven. He ended up making a small plate for himself & yes I had two chips. But I didn’t have a whole plate to myself like I have previously done. He was surprised I declined & then only had such a small amount.
For dinner, I was full after the salad & chicken. Previously I’d have been able to, and have gone back for seconds & thirds.
Afterwards, he offered cookies for dessert to which I agreed. I shocked the heck out of him by grabbing one cookie and eating one cookie, then *not* reach in for a second or third. He just looked at me & jokingly went to check my temperature on my forehead, saying “Are you feeling ok?” I laughed & said that my appetite has just snapped back & reply.. “Uh – Yeah!”
His thoroughly surprised response tells me he definately saw a massive shift in my eating habits. The last time he had made dinner, has been 3 weeks prior – before I stopped the medication.
This just adds more to my case that the problem with my weight was a direct result on the medication Rexulti.
So, since Christmas I have gained a total of 50lbs. I am not impressed..
I have been compulsively overeating, and I don’t know why… And it’s anything.. Be it something healthy like fruit, or smacking on candy, or going back for 2nds & 3rds for dinner..
Three weeks ago, I got a notification that one of my meds was up for refill. It’s a fairly new med, so I figured I’d check & 2 potential side effect: Increased appetite, weight gain. Well FFS.. I started it in December!
Too coincidental for my taste.
So, before I even saw the prescribing doc, I dropped the med about 2 weeks ago..
I’ve already had a change in my appetite. I’m no longer constantly graze, looking into the fridge and cupboards for food to eat, or stocking up on massive amounts of candy. My portion sizes are back to normal, not just my normal, but to normal people in general.
As of last Tuesday, at weigh-in, I had already lost 6lbs!
Which med you ask? Rexulti.
So it turns out, it was absolutely NO fault of my own that I ballooned up. Other than recognizing the source of the problem earlier, there is nothing I could do. The overeating was an overpowering compulsion. But it’s gone now. 🙂 & the weight-loss journey begins anew!
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. Read More.
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. ♥️
Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.
For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.
My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.
Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.
When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.
I know you’re trying to be helpful but your suggestions of yoga or CBD or massage or med XYZ, but I’ve tried it all already..
Medications.
In my case, I have tried all the meds. The only one I haven’t tried is one that’s available in the States but not in approved for use here in Canada. It’s called Sabella.. Specific medications for fibro include lyrica and gabapentin did not help and in fact, the gabapentin made me significantly worse – not good
I’ve been on any number of narcotic medications, starting at 20 Tylenol 3’s a month (that was a joke, way too insignificant) to high dosages of codeine contin & Fentanyl.. Fortunately, those were not at the same time.
I’ve also been on several muscle relaxing medications. Unfortunately, the one that works the absolute best is not covered my government benefits, but the one that is covered is adequate unlike many others.
i have been on anti-inflammatoriez for many many years due to Endo then the arthritis. Unfortunately, it seems to have started causing increased bruising in the last year or longer. As a result, my GP has taken me off my regular double daily dose. I now take an otc anti-inflammatory “as needed. “
I have actually been on various forms of medical marijuana and just as I’m finding the perfect balance to help, I start having issues, problems that might be due to cannabis products. We are still trying to figure out the cause because even tho I’m off *all* marijuana products, synthetics oils and otherwise, I’m still having regular issues. So the docs got no idea what’s going on. Read more here.
Exercise!
You’re kidding me, right? Do you know how hard it is to exercise when your body is screaming at you? Even Yoga.. Or swimming.. Or walking.. Even these simple every day activities, when you have severe Fibromyalgia can be unbelievably difficult. While it can help some it does impact others in a negative way, deteriorating their health.. I am lucky. I made a decision 10 years ago when I hit 303lbs on the scale at my doctor’s office. So I did start the long and painful, excruciating process of doing a smidge more activity, very slowly increasing what I was doing.
So yes, now I can go swimming.. well, walk in the pool, lol.. Before COVID I could participate in an aquafit class, but sometimes no more than bobbing in the water but I made the effort to be there.
Yes I can walk further, but that happened with great encouragement from my sister. Over the last six years, we would get together weekly to walk. On some days I can’t walk very far, but I try. This encouragement has led us to talking and we have become very good friends now. An excellent side bonus!
Yoga can still be very painful, depending on the speed, the instructor, the modifications, the positions we use and the flows (God I hate flows). I do have favourite positions like bridge & pidgeon that surprise people. But it took me 10 years to get to this point and it can still very much hurt.
Was at the gym, stepping around in an Arriba class earlier this week and crashed out that night… Barely made it to the time I take my night meds. Even took extra early pain meds to help dampen the pain so I could sleep.
The advantage of me having the gym membership at my local YMCA is the plus membership I fork out the extra for the plus membership because it includes additional99lounge, steam room & the infamous hot tub. The hot tub is my life saver. Can’t wait for my tat to finish healing so I can send all the way in to my neck
Diet.
These include gluten free, Keto, vegetarian, vegan, anti-inflammatory, Noom, high protein, Mediterranean, Weight watchers, diabetic, South Beach, intermittent fasting, paleo, raw foods, Aktins, etc… While some of these would works for some, none of these really helped me or could help me. Between complexity, my will power (or lack thereof), cravings and food sensitivities, none of these actually worked for me. My choice of “diet” is moderation and avoiding a lot of prepackaged foods. The closest to this would probably be the weight watchers program but I found their point system to be complicated especially with the cognitive issues with my Fibro. This adaptation has also helped me lose weight. So I still do drink Coke, probably still too much, but significantly less. I’ve almost 100% restricted out the xanthan gum, guar gum and carrageenan additives as they typically cause my IBS to flare which would start putting me in starvation mode, which makes maintaining, let alone losing weight even more difficult. Not to mention get some of these diets require me to eat foods with these additives in them.
I do treat myself every once in a while with a bowl of sorbet. Very infrequent use of these chemicals it is permitted because my body can tolerate them in very very small doses.
Alternative treatments
We’re talking massage, acupuncture, physio, osteopathy, chiro, etc. Physiotherapy does not really help the fibro other than adjusting exercises that could be beneficial to help increase strength, endurance or flexibility. In many cases this does not improve the pain due to fiibro in patients.
While chiropractic medicine helps some with fibro, it actually made my situation significantly worse.
Osteopath does help but it mostly treats my other conditions like post concussion syndrome, migraines or endometriosis and general health and wellness. Does not help fibromyalgia specifically that I know of.
Acupuncture does absolutely nothing for me or any of my medical conditions. I have tried it a number of occasions and hasn’t worked with any of the practitioners. One lady treated my Endo & gave me migraines. Any further attempts for any other issues have resulted in absolutely not relief
Massage can wonderful. If you get an appropriate RMT who understands fibromyalgia and will listen to you & adjust when you say “Ow!” it can help. Unfortunately it also tends to be very short-term
Injections.
For 15 years now, give or take, I have been getting injections of a medication called Marcaine which is a sibling medication to lidocaine. These I get with my pain physician who was initially in Scarborough and is now in Oshawa. These shots have helped over the years for anywhere between 4 days and 4+ weeks depending on the level of my pain
In the winter I also get epidurals up to three times each winter depending on my pain levels at that time. This tends to treat my osteoarthritis in my lower back, not the fibro pain. In doing that however, it reduces the OA pain, making the fibro pain more manageable.
lidocaine infusion. This is the one last treatment I know of. This is when they attach an IV and add lidocaine to your blood system. This is my next course of action for treatment. I have an ECG scheduled for next week so that I can access this treatment. Once it’s been verified that my heart is ok, I can and will book the treatment. I will let you know how it went.
Thank You, But..
Thank you for your concern for me and your helpful intentions, I’ve been dealing with this a long. Thank you for your pearls of wisdom persistent unsolicited advice is actually inconsiderate & thoughtless. I *do* know my body & I do know what works for me. It comes across to those of use dealing with these issues like we don’t know anything about my fibro and that you know more than me & my doctor. Honestly, in most cases, I do know more than my doctor. So please stop making suggestions cuz what worked for your friend’s cousin, Sally, I have already tried. or that your Dad’s friend’s daughter was cured, because it can’t be. I don’t need anyone telling me how other people’s treatment going to work for me because her fibro is not my fibro.
Fibromyalgia 
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