Posts Tagged ‘Fibro’

Crash and Burn II

August 16, 2022

So I overdid it on the Civic holiday weekend and crashed as a result. I’ve been in a flare ever since.. This is a continuation of Crash and Burn.

As I said, Monday was about the same, pain-wise & still working on my sister’s project, but finally got a decent amount of work done on with this project. I think there was no improvement on Monday because I went to soccer.

Tuesday morning showed some more small improvement. That afternoon was my appointment with Dr Sithaparanathan at Neupath Pain Clinic (formerly CPM). Got my full shots & she gave me big trouble for over doing it. She asked my why I overdid it cuz she knows I’m pretty in tune with my body & it’s pain. I had lidocaine infusion on the Tuesday prior & the pain relief was still in effect which is why I didn’t feel any pending problems I guess the impact work off Sunday night/Monday morning while I slept.

So Tuesday afternoon was better, and was spent again at my sister’s.

I noticed significant improvement in weight bearing on Wednesday. The week prior, I was unable to pick up the sewing machine, even just to lift it from the table My brother-in-law had to come over and pick it up to take it to my sister’s. Today, however, I was running errands, one of which was to get the light bulb changed which required me to take the machine with me. I was able to carry it now. It was a bit of a struggle, but I was able to do it, take it out to the car. Yay!


A set of ushions for my sister's outdoor love seat, one of you have been working on

As you can see, we are getting it done & here’s a view of one of her love seats in case I didn’t share before. This just shows the look we are going for with this completed loveseat.


I got some of my own stuff done that day cuz I was not at my sister’s doing stuff, tho several of my errands were related.

At this point, I was still having trouble getting moving in the mornings – usually afternoons right now. Pain levels are still higher when I wake and still having problems getting decent sleep Sunday – 6hrs, Monday – 6 hr, Tuesday after my shots was good with almost 7½, Thursday – 5¾hr, Friday – 4hrs.

While I’m *in* bed by midnight, I am not tired til at least 2am, some times up until 4am. There are also where I wake in the middle of the night wide awake. None of this helps my sleep. Thursday was bad with a combination of both. I was in bed shortly before 1am attempting to sleep. According to my Fitbit, I dozed off at 3:30am & up at almost 5, wide awake and unable to get back to sleep until 8 but even then for only 3 hours before being wide awake. And people wonder why I am completely exhausted some days.

So, overall, pain got better and better, but I was still getting exhausted each day.

i also began to have problems with my ankle &: my knee. Being on vacation, my knee has been fine.. was even good on Sunday after being off seeing since Thursday. However, being Wednesday of my week off, I’m pretty sure the peddle usage has aggravated my gout. I’m icing it & tossing it in my tensor when I’m doing any significant walking.

Let’s hope, with us not starting back up after the long weekend that it starts to heal up on its own. 🙂

May 12th

May 12, 2022

Today is May 12th..

Awareness Ribbons

On this day we try to spread awareness of three debilitating and chronic medical conditions. I have all three of these conditions & I have to say, they all suck.

FMS – Fibromyalgia Syndrome

CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

MCS – Multiple Chemical Sensitivities

May 12th is Coming

May 10, 2022

Each year on May 12th, we observe International Fibromyalgia Awareness Day. Globally, we also acknowledge Awareness for Chronic Immunological and Neurological Diseases (CIND), typically considered Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME) and Multiple Chemical Sensitivities (MCS). This does include other conditions such as Multiple Sclerosis, Addison’s Disease, Lupus, Chronic Regional Pain Syndrome (CPRS), & Irritable Bowel Syndrome to name a few.

Awareness Ribbons

Fibromyalgia affects 2-4% of the population. For context that’s up to 13 million of the US population & 1.5 million of the Canadian population  It is a musculoskeletal syndrome and causes a variety of symptoms. Common to all Fibromites is chronic widespread pain and debilitating fatigue. Additional symptoms can include:

  • anxiety
  • depression
  • migraines/chronic headaches
  • irritable bowel syndrome
  • irritable bladder
  • insomnia
  • hypersensitivity to cold/hot
  • swelling
  • fibro fog (inability to concentrate/focus)
  • difficulty remembering
  • numbness
  • stiffness
  • decreased energy
  • noise, light and odor sensitivity
  • skin sensitivity
  • See a more extensive list here

Symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. While there is no cure for fibromyalgia, a variety of treatments and therapies focus on reducing the amount and frequency of pain. They also aim to improve sleep. Therapies such as exercise, massage, acupuncture, and chiropractic care aim to manage symptoms without pharmacological interventions. Prescriptions manage pain, improve sleep, and combat depression, too.

Chronic Fatigue Syndrome/ Myalgic
Encephalomyelitis (CFS/ME)
affects ¼-¾ of 1% of the population For context that is up to 2.5 million of the US population & up to 300,000 of the Canadian population. It is a serious, long-term illness that affects multiple body systems. Symptoms of CFSME are severe fatigue, and sleep issues. Additional symptoms commonly include: post-exertional malaise (PEM), problems with thinking and concentrating, pain, and dizziness. Like fibromyalgia, symptoms may come and go, lasting a few minutes, an hour, a day, a week, a month, or a year. There is no cure and no real recommended treatment plans . Individual symptoms may be treated or managed and like Fibromyalgia, they may provide relief for some but not others. Coping strategies, like learning new ways to manage activity, may also be helpful in some.

Multiple Chemical Sensitivities (MCS) is a syndrome resulting from a reaction to environmental factors such as tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, food chemicals an preservatives. Symptoms can vary extensively and can include:

  • Headache
  • Fatigue
  • Dizziness
  • Nausea
  • Congestion
  • Itching / Rash or hives
  • Sneezing
  • Sore throat
  • Chest Pain
  • Changes in heart rhythm
  • Breathing problems
  • Muscle pain and/ot stiffness
  • Diarrhea / constipation
  • Bloating & gas
  • Confusion
  • Trouble concentrating
  • Memory problem
  • Mood changes

Treatment typically is to avoid the irritant

AWARENESS DAY HISTORY

Fibromyalgia, CFSME, MCS Awareness Day was first observed in North America in 1992 in honour of the birthday of Florence Nightingale.

Why Florence Nightingale?

During in the Crimean War on the 1850’s with the English army, she established the training of women, organizing them to help care for the wounded soldiers, establishing the basis of modern nursing.

During the war while working on the front lines, Florence suffered a traumatic collapse which resulted in most of her life to be in debilitating chronic pain, often unable to walk or leave her bed. Documentation suggests her symptoms to be similar to fibromyalgia and chronic fatigue. 

SPREAD AWARENESS

To help spread Awareness of Fibromyalgia and these other conditions please use the following hashtags in your social media:

  • #May12th
  • #FibromyalgiaAwarenessDay
  • #CFSMEAwarenessDay
  • #MCSAwarenessDay

As the month of May is also dedicated to Fibromyalgia Awareness you can use these additional hashtags

  • #FibromyalgiaAwareness
  • #FibromyalgiaAwarenessMonth

 

Spread Awareness

May 1, 2022

May is Fibromyalgia Awareness Month

Pain Is Up!

March 29, 2022

i had originally scheduled a different post with the same title.. One that should have posted in December, but some of it isn’t relevant anymore, and I’m in a different place, so I am changing it..

Why? Cuz for the first time in years my pain is at a 7/10.. Keep in mind, I picture 20/10 to be the equivalent of having my limbs cut off with a full chainsaw without the benefit of anesthesia or passing out from the pain.

Whats making it worse, is I had an epidural a few weeks back, so my lower back & my pain due to Osteoarthritis is pretty much non-existent. That means, I have fibro pain & *just* fibro pain at a 7/10. Normally when I hit a 7, it’s a combo of fibro & OA. When that happens, if I can dull out the OA pain, I can deal with the fibro.

Pain Scale 7-8/10
Pain Scale 7/10

So, its *all* fibro pain & last night I was almost in tears, even with extra (Double) muscle relaxers & narcotics – even a good chunk of alcohol. So there’s not much more that can be done for it, and *nothing* they will do in Emerg to help. They won’t given me any meds stronger than what I am on. Narcotics or a muscle relaxer.

When I do visit the ER, I typically get a toradol shot & a Xanax. Tonight that won’t do anything to help.

The only good thing is that I see my pain doc. Honestly, not sure my shots are even going to help I expect she’s going to recommend a lidocaine infusion, the one treatment I’ve not tried. I think I’m going to say yes this time.

Why so much pain?

Simple, if you read my previous post about CBD, you’ll know my GP thinks it’s my medical marijuana. So I’ve been off the MMJ since February 17th. While not as bad, I’m still nauseated and I am still throwing up. I’ve been on this medication for about 4 years now & it was a huge help getting me off fentanyl..

Due to the extreme bruising, he, my GP, also yanked me off the arthrotec, an anti-inflammatory, a few weeks before that. But I still bruising.. I have been on this medication for decades, since my mid 20s…

So I’ve lost two of my treatments that were helping my fibro, but do not seem to be resolving the problems I took to him.

As a result my pain has been slowly creaping up & I’m experiencing allodynia again. Basically, it is a sensitivity to touch. See next week’s post for more about this & how it’s been impacting me..

Flaring! Flaring bad!

November 23, 2021

Yesterday was the perfect storm. Everything conspired against me.

  1. Poor Sleep. According to my fitbit, for the last several weeks, I’ve been getting usually between 4 & 6 hours of sleep a night, average rating poor-fair. There’s the occasional longer, better sleep in there, but not often..
  2. Forgotten Medication. When I left for the cottage early this morning, I forgot all my meds at home. Admittedly I didn’t need them all today, but there are certain ones that I do have to take at certain times for them to be effective. Unfortunately, those got left at home. I did have limited or weaker alternatives which I suppose is better than nothing.
  3. Emotional Stress. I am currently having problems with my current relationship. I’m not sure if it’s something I can handle and accept or not, so there’s alot going on there..
  4. Poor Diet. Due to the aforementioned stress, I haven’t been eating.. I haven’t been eating well & I haven’t been eating much. Neither is good, both is worse.
  5. Activity. Spent the day in bed.. with my boyfriend, not sleeping. While this is usually a good thing, due to stress, I was unable to truely relax and enjoy it. So I was getting the workout without all the longer term benefits
  6. Physical Stress. After I’d started going down hill, I had a horrible drive home. What would normally be a nice relaxing 1½ hour drive home from the cottage turned into a 3+hour nightmare. Between accidents causing an entire highway to shut down for over 14hrs, excessive detours, multiple accidents on said detours, snow.. The body begins to tense up more & more & more.. and with me being in the car I wasn’t able to like stretch or anything creating more physical stress

For the first time in over 3 years, my pain turned to a solid 8/10.

After 2+ hours, 4 Tylenol3, 4 muscle relaxers, an anti-inflammatory, my CBD oil, prescription edibles, and a backrub with A535.. the edge started to come off, but I also started feeling the effects of over medication too..

I just can’t win..

Food Choices with Fibro VII

September 28, 2021

The study also showed that low alcohol drinkers have lower severity of fibromyalgia symptoms and better quality of life than non-drinkers.

Alcohol intolerance is a rarely seen symptom yet most people who have FM or ME/CFS find that they can no longer drink much, if any, alcohol.

Alcohol, no matter the kind, can be devastating to Fibromites.

While a few are able to occasionally have one or two drinks with only minimal problems, for others even a very small alcoholic beverage can trigger a severe flare or relapse that may last for days, weeks or sometimes even months.

So, for most, alcohol is so obvious that it’s was not even originally in the list. So, you have to stop drinking alcohol.

On that note, I also have a fairly high alcohol tolerance (when not mixed with THC) that I inherited from my father.. I used to be able to drink most of my friends under the table.. For the most part I still can. But I have noticed at the club I am toast for days afterwards but have since realized that it’s the dancing at the club, not the alcohol that is responsible for that.. My BFF, as she has increased in weight has been slowly had her alcohol tolerance increase. I don’t know if she realizes that it from the weight gain & when she loses it again her tolerance will drop. ☹️

My Hair Hurts

September 17, 2021

I owe an apology to many of the ladies is some of the various fibro Facebook groups I’ve been it. There have been many conversations over the years about Fibromites whose *hair* hurts. Turns out it’s a form of allodynia

I always assumed that they were talking about head pain but not the sensation that it actually does feel like your hair actually hurts – not your scalp. You see, over the years I have had a bunch of concussions.. Three of those concussion inflame on occassion, so I will have swelling & tender points on my scalp. I can even tell which incident it was.. One of my bike accidents? Falling on the ice at school? Accidentally bashing my head against a wall?

Well, nope, that is not the feeling it turns out. Those repetitive reactions are *not* what these women mean. I found that out today.

I was brushing my hair like I normally do, and decided to wash my hair. When I do this because my hair is so thick I tend to flip my hair over and back brush to get the hair to relax so I can more effectively clean it. Well my head felt weird bending over and putting my hair down.. I started your back brush from the base of my skull and I was good until I got about 4 in down then – Oh! My! God!! My hair was in agony.. Not my scalp – My Hair!

So I stopped brushing my hair stood up flipping my hair back & again – Oh My God! More excruciating pain. I had to have a shower because I was stinky from heat sweat, I still had to do something with my hair. I put it in a quick loose bun that was clipped in not elasticized in.. I found that was the least painful option for hopping into the shower..

I can still brush my hair normally and it doesn’t bother me but if I could try to do anything else for my hair right now, I’m f**ked..

So I owe these ladies an apology cuz I was thinking their issue was not so bad cuz my version wasn’t too bad. I should know better.. Cuz my Fibro is not her Fibro & her Fibro is not my Fibro.

A little research yeilded this information:

Apparently the number one culprit for this kind of pain is not washing your hair.. The oils that your scalp produces naturally accumulate around your hair shaft, and if not cleaned can promote an overgrowth of yeast on the scalp. It is apparently the region around each hair, pore, or follicle that is becoming inflamed, which translates to sensitivity that can feel like your hair hurts.

Wearing your hair in the same style, like a high ponytail, cornrows, buns, or braids for days at a time, can also contribute to more pain.

How can we help it? It all depends on what hair type you’re starting off with. Finer hair can’t go multiple days, because it produces more oil, Yet curly or gray hair can, as it produces less. As a rule of thumb, people with oily hair should shampoo every day or every other day. Dry or coarser hair should do every three to four days.

I know we tend to be exhausted an washing one’s hair is an exhausting chore, but consider that it might be worth it.

Food Choices with Fibro III

August 31, 2021

Aspartame is synthetic sweetener, also recognized by the brand names Equal and NutraSweet, is used to sweeten some frozen desserts, beverages, yogurt, and some other foods without adding calories.

Artificial Sweeteners including Equal & Nutraseeet

There have been a case information connecting aspartame to fibro. In one of these, a fifty year old lady who had been living with fibro for ten years experienced development of her painful symptoms when she vacationed in overseas and didn’t use aspartame. Though, her symptoms reemerged when she got back home and started aspartame use again. In the other occasion, a forty-five year old man found that his hand, wrist, cervical spine, and forearm pain stopped when he stopped aspartame use.More study is required to approve these conclusions, however it might be a wise idea to avoid aspartame if you have fibromyalgia.

Try using a small amount of natural sugar instead. Apparently, you can even add beets to some dishes for a hint of mellifluousness.

If you have to use synthetic sweeteners, try using sucralose, which is derived from calorie and sugar-free.

Personally, i can not stand the taste of the stuff

Are you getting enough sleep?

August 10, 2021

How much sleep do you really need? In general, most adults need about 7 hours of sleep per night. Children and adolescents need even more – around 9 or 10 hours per night. However, the amount of sleep people need varies widely, ranging from 5 to 10 hours per night. The important thing is to find out how much sleep you need to stay healthy and alert, and then try to get this amount of sleep each night.

People like me, with fibromyalgia have this problem. We require more sleep & rest than the average person.

At my worst I was in bed by midnight, with several extended & cognitively aware wakeup. I’d wake at noon to my alarm. I’d have a nap as well between 1 & 4 hours. I was still exhausted & non-functional.. Currently I am getting about 6ish actual hours of sleep at night as per my fitbit. I generally wake on my own, but use a alarm of I need to be somewhere at a specific time. I, generally, no longer take naps.

I am still exhausted, but because my health is better overall, I am… functional.

The right amount of sleep is the amount that lets you wake up feeling refreshed and well. You may be able to function on the amount of sleep you are getting now, but it still may not be enough for you to reach your full potential. Here’s how to tell if you’re not getting enough sleep:

  • You need an alarm clock to wake up.
  • You sleep longer and better on weekends.
  • You have trouble getting out of bed in the morning.
  • You feel tired during the day.
  • You have bags or dark circles under your eyes.
  • You doze off while sitting in a public place, such as a movie theatre or meeting.
  • You get drowsy while driving.
  • You have trouble concentrating.
  • You have early morning headaches.

I’m sure many fibromites have several of these signs of poor sleep. I laugh at the suggestion of waking feeling refreshed and well – Doesn’t happen much for us..

These are the issues *I* experience:

  • I still need an alarm clock on occassion, for something important
  • I have trouble getting out of bed feeling sluggish & pain spikes just after I wake.
  • I frequently feel tired during the day.
  • I’ve bags and dark circles under my eyes.
  • I don’t usually doze off while sitting in a public place but it has happened.
  • I have only been excessive drowsy while driving three times.
  • I have trouble concentrating, but this could be fibro fog.

Like the last point, all of these signs could be caused by Fibromyalgia or it could be caused by poor sleep. It is very difficult to differentiate as signs & symptoms are very similar as are the forms of treatment are also very similar.

If you notice any of these signs, you may not be getting enough sleep. Try to gradually increase the amount of sleep you get each night until you find the right amount – you’ll know that you’ve got it when these signs start to go away. If you haven’t been getting enough sleep for a long time, it may take a while to recover. If you’ve tried everything and still have trouble getting a good night’s sleep, talk to your doctor. You may have a sleep disorder.

I agree, if this is a persistent & reoccuring problem, it might be a good idea to see your GP & get a sleep study done to see what’s up in your actual sleep.. I’ll try & post about my sleep study experiences.



.


I pilfered this from PC Health… but all material copyright of MediResource Inc. 1996 – 2021.  Original Source :  www.medbroadcast.com/healthfeature/gethealthfeature/Sleep-Getting-a-Good-Nights-Worth