Archive for the ‘Sleep Issues/Insomnia’ Category

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..

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.



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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

Instant Gratification

July 23, 2021

I know want what I want and I want it now.

I did some exercise before bed. Normally a little exercise drains me & nixes my RLS.. Normally. Not so last night. It backfired.

I couldn’t sleep for a few reasons:

  1. My Restless Leggs Syndrome kicked in despite the exercise. I had to take 1½ Trazadone to get them to settle..
  2. My mind could not shut off..Kept thinking about stuff, like my cub scouts and my plans for the weekend. I just kept going over stuff in my head – despite trying 3 different sleep meditations.
  3. The exercise reacted like it used to – negatively. In the last few years, basic exercise has not been the hindrance it was for the 10+ years prior. So imagine my surprise when in snuggling into bed & my leggs (in addition to RLS) start to hurt.. it was not good. I’ve not had this reaction (other than overdoing it) is several years.

No, the want for immediate gratification and instant response was not for sleep. In this case, it was for my pain meds to work. I had to run 3 courses of meds. The first one the regular evening maintenance pain regime. The second was more Tylenol about an hour later. After still not getting additional relief from the additional meds, I bumped it up, 2 more Tylenol, 2 Robax which includes another, but different, muscle relaxant & anti-inflammatory.

At 5 am I was still awake..

RLS then Exercise.. Uh oh!!!

June 29, 2021

On Friday last week, I posted about issues with my RLS, but that wasn’t the end of it.

As I said, on Wednesday night I was having problems getting to sleep, big problems due to restless leg syndrome in all four limbs – very rare. So I went on the treadmill for 20 minutes then snuggled nicely into bed.

Walking on a treadmill can help burn off the restless feeling when my RLS flares.

Thursday morning, I woke up & my legs had felt like I’d run before full marathon with zero prep the day before, instead of just 20 minutes.

So I started with the pain meds, the anti-inflammatories and the muscle relaxers that I do every day when I get up. The unexpected pain did eventually start to lessen more.

But Thursday nights are one of my cub nights with my third years, howlers from both packs. We’re helping them work on their Seeonee Award.

Fortunately, when this meeting was planned we weren’t aware if we were going to be in person or not so we planned a virtual meeting. The kids wanted to play Drawsaurus which is an online version of Pictionary. Lots of fun!

Drawsaurus is an online version of Pictionary! The boys love it!

So I didn’t have to do anything. I did not have to prep much, other than just set up the game which took about 30 seconds. We played 4-5 rounds I believe. We could do this because it was a smaller group, just the four of them tonight.

So as we started we are having fun and I’m relaxing. Silly me, I text my sister and ask her if she wants to go walking tonight after my meeting, which we normally do on Thursdays.. Of course she responded in the affirmative.

I was actually starting to feel better at the end of the meeting – Yay!!

I make it to my sister’s for 9:00pm and we leave shortly thereafter walking the dogs. Our pups were both very well behaved tonight, strangely enough – they usually do not start calm & maintain that for most of the walk.

So our walk was uneventful and we walked the neighborhood just south west of us. There was nothing extraordinary about our walk in the way of physical exertion.

There was a coyote but that’s a different story altogether.

One thing about that walk however was the length. It was almost 11:00pm by the time we got back to her house. In steps that is over 10,000 and about 5½ miles (no clue why my Fitbit is still in miles)

God Help Me! Five miles & 11,000 steps for one casual walk.

So take a guess how I felt afterwards. Horrible! My leggs were very painful. I’m thinking a 6 or 7 out of 10 on my pain scale..

I had a shower and the hot water was lovely- everything seemed to relax under the hot spray. Unfortunately it would return when the heat got moved to another spot. I think I need to go snorkeling in a hot tub! LOL..

So I medicated again, including my MMJ…

Guess how I felt the next day…


I was actually expecting to be in a flare the next morning… Surprisingly, my Leggs were sore.. pain at a 3, 3½.. was expecting 7 or so.

So, Yay! Not as bad as anticipated!

Extra Restless RLS

June 25, 2021

On Wednesday night I was having problems getting to sleep, big problems. I have Restless Leg Syndrome and when it keeps me up, I take a medication which usually relaxes my body enough to sleep.

Restless Leggs keep moving and can’t stop, making you unable to sleep.

Not this night. No way. I first noticed the issue in my right arm, oddly enough… (Yes. You can get restless leg syndrome in your arms but it’s not the most common place) Then my left leg I noticed was twitching and minutes later my right leg followed suit. All of these are becoming highly hyper-stimulated so much so that normally only one limb that sensitive I know is a significant problem.. But I had three.. I finally noticed my left arm tacked on for the ride, but was fairly ‘mild’ comparatively speaking.

After waiting a half an hour for the meds to kick in, and they didn’t, I knew I’d have to take drastic steps because there was absolutely no way I was going to be able to sleep with three very very restless limbs and one mildly restless arm.

What do I do? I jump on the treadmill. Yes, the RLS can be hugely painful but it wasn’t too bad, achey but mostly just constant moving.. Normally with mild RLS I only have to walk for 5 minutes but this wasn’t mild. Also, my Fitbit doesn’t record exercise until you hit 15 minutes.. lol.. So I was on the treadmill for 20 minutes.. had another quick shower and hopped into bed nice and relaxed.

This is not the end of this story….

Could You Handle it? Constant Pain?

June 22, 2021

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?

How I Got Approved for Disability

June 15, 2021

I first started having Endometriosis symptoms in my early teens. I started having CFSME symptoms in my mid-teen. My Fibromyalgia was triggered by a bout of of mononucleosis at age 19 which got slowly got worse…

Endometriosis was diagnosed when I was 26, Fibromyalgia at age 33, and CFSME at age 37. You’d think all these large diagnoses would qualify me easily for ODSP.

Nope.

My initial submission for ODSP, Ontario provincial disability benefits included documentation for endometriosis, fibromyalgia, edible syndrome, TMJ, asthma, IBS.. All of these diagnoses…No love..

From there I hired a lawyer you turned out to be a real dick and didn’t do squat. To keep my application current, I would request reconsideration based on regular bloodwork until I was able to get the needed documents.

When I requested a change of attorney I had to go into the tribunal, on the day of a huge snowstorm, with a broken foot.. The person who denied me didn’t even bother to show so the tribunal granted me the new legal representation – Durham Legal Clinic.

By this time, I’d seen Dr Alison Bested at the Environmental Health Clinic & had just become one of her patients in her private practice. I had another diagnosis of CFSME by her staff..

The legal clinic requested additional information from Dr Bested. They sent her a very specific document. This document basically outlined what I can and what I cannot do.

It covered the four broad areas of physical limitation. Mobility issues are those such as how far I can walk, do I need assistance devices for movement, how fast I can move – slow shuffle to jogging to an (ROTFL) out & out run. Upper body tasks include how much weight I can carry, how well I can push or pull heavy objects. Stair climbing functions are how many steps I can take, how fast I can climb. Activities of daily living include my abilities to eat, bathe, dress, sleep, administer my medications, preparing food & personal hygiene. She described me on my worst day.

My worst day, my pain is high. I can not walk more than to the bathroom – sometimes not even that far. This can cause issues with elimination. I am, at that point, unable to take any stairs, or carry anything heavier than a small plastic glass of water to take medication. I can not prepare my own food, let alone eat. Showering, brushing hair, cleaning my teeth would be beyond me at my worst..

Issues with Mobility, Stair climbing, , Upper-body tests & Activities of Daily Living like eating, showering and sleeping.

If you then you add my mental health health into the mix, especially as there were suicide attempts by this time, I was finally approved.

This same documentation, several months later, was used to successfully get approved by CPP-D, the disability program for Canadians.

It took several years for this process to complete.

Christmas with Chronic Health Issues

December 23, 2020

The holiday season is supposed to be the hap-happiest time, the most wonderful time of the year!
Unfortunately, it comes with a lot of stress and expectations. Many healthy or ‘normal’ people can find it difficult. Those dealing with chronic illnesses like fibro, CFS/ME, lupus, etc have it worse.. Unfortunately, for someit is the worst time of the year.

Here are some strategies that can help when things get hectic:

• Pace yourself. Conserve your energy and taking it slow.
• Say “No”: You can only do so much. If you overextend yourself, that can & usually does instigate a flare in symptoms.
• Ask for help. Again, you can only do so much. Ask someone else to help out with what you can’t do like stringing up the lights
• Stop the crash by stopping before it happens. . If you go until you’re too tired or too sore or too stressed to do more then you most definitely will crash. “Just do one or two more things, or visit one or two more shops, or go down one or two more aisles'” – this thought process only leads to decreased health..
• Keep it simple. —Decorate but not as much, celebrate—but not as much, cook if you can—but not as much.”
• Put some extra thought in any travel plans (well, not a an issue this year, but in the future) traveling during the holidays. A busy travel schedule can be hell. Give yourself the time you need .. To recover from a travel day.. To rest between flights& have sufficient layover.. & Bring what you need to travel. Be it snacks, water, ear plugs, eye mask, medications . Plan ahead and pace yourself.
• Prep food ahead of time. Get the veggies ready to throw in the pot, make the potatoes the day before, roll & fill the pies a week or two before & freeze.. If you do breakfast, mix up your eggs, or pancake mix or French toast egg dip prior.. the night before so it ready on Christmas morning.
• Organuze. Set the dinning room table the week before, or the kitchen the night or two prior to whatever extent you can.
• Leave guilt behind! Take a reality check. You have a chronic pain illness which limits what and how much you can do. Do not blaming yourself because you can’t provide the same elaborate holiday festivities you once did. Don’t even try to do everything you think your family expects from you. Don’t put those expectations on yourself – they are not realistic aspirations.
• Set priorities. You can no longer do every single holiday traditions you used to. You now have to determine what means the most to you & consider the energy levels required. Some can be modified like I stead of going walking to check out Christmas, you take a drive to check out the lights. So, again, be realistic.
• Avoid overnight visitors if you can.. If you can’t, set the expectations like ‘I’m not making you breakfast, but help yourself’ or ‘I don’t get up until 10am so they know not to knock off n my door unless it’s an emergency.’ or ‘Can you please strip the bed before you go – just toss them into a pile on the floor for me to wash.’
• If you are hosting, you can (again, not this year) ask each one to bring one or two dishes, So my sister brings the turkey, my be CES do the stuffing & gravy, my brother brings the vegetables, Mom brings the desserts.. This leaves yourself only one or two simple items to prepare. In this case bun’s & potatoes. OR just go somewhere for dinner or even a family vacation together over Christmas .
• Organize your gift giving. Keep a list of who is getting gifts & what, so you won’t have the foggy moment of ‘Did I get this for Uncle John, Cousin Sue, or my brother?’ I even make note on where to get things so I’m not heading the same time 3 times. Plus My cookie list: I make 3 different sized bundles of cookies every year. A small ½dozen to the little guys or extended family, 2 doz to the nieces, nephews, godchildren (no, Kaden, my Godson and my nephew does not get two no matter how much he’d like that), & 3 doz to bff’s, my pain doc, & the bf’s…
• While it may be more expensive, the extra cost may be worth it to shop online. You avoid the stress and exhaustion of holiday shopping in crowds of people & lots on scencury impact. Gifts can sometimes be sent directly to the recipients, saving you the hassle of finding a box, packaging the gifts and waiting in line at the post office.
• Use gift bags instead of traditional wrapping or there are decorative boxes that you can just drop something in, tape it, add ribbon & done. It is physically stressful on the body to wrap gift after gift.. My back always gives out.
• What your diet!.. Do not over eat. Take home leftovers for later instead. If you eat too much, especially too fast, you just know your body will retaliate in some manner. And avoid all the extra sugar available at this time of year, cookies, cakes, candies, pastries…
• Change your schedule as little as possible. The changes on Christmas Holiday & especially Christmas day frequently send our bodies out of whack,. Try & keep your normal activities going.. Keep up with an exercise regime. Stick, to a relative amount, with your regular diet. Keep your sleep schedule as close to normal, if you have your book club meeting stops for 2 weeks, schedule a chat with on of your friends at the same time so that you are still doing something in lieu..
• While I keep seeing the recommendation of avoiding Eggnog, I can’t agree with this, but you do need to be careful. Egg Nog has both milk/cream & eggs in it so those sensitivities need to be confirmed. If you are buying your eggnog, be aware there a ton of preservatings, thickeners & other chemicals in it. If you make it from scratch – eggs, milk, sugar & vanilla, and while it tastes better, you can not keep it around forever, even in the fridge.
• Take time for yourself.Even if it’s just two slow deep breath’s, or an hour meditation, or ordering dinner in or doing your nails.. Self care at this time if year is just as important, especially with the limitations & upcoming 1 month lockdown here where I am.

With everything going on at Christmas time, it’s inevitable that while you may not X ash, you’re not going to feel great on Boxing Day. . If possible, just stay home and rest. The more time you can take, the better.

It’s also pertainent that these tips you need not only be aware of during the holidays, be the rest of the year throughb as well.

Merry Christmas

It’s OK To Not Be OK

December 14, 2020

My sleep schedule is screwed up again, not a surprise. So my intention was to get up early, relatively speaking, today.. That did not happen.

When my alarm went off yesterday, I kept hitting snooze and hitting snooze and hitting snooze. My brain didn’t want to get up yet.

So when I finally did get coherent, I really did not want to get out of bed. I don’t feel like I’m in the mental space to do much. So I canceled all my plans for today which included pickups for items for my Cubs, a run around the dog park with my pup and a visit to a friend.. all I’ve done today is let my dog out and go to the bathroom.. I still need to grab a bite to eat though and that will be something quick and dirty.

But it’s okay. Some days it’s just hard mentally, emotionally. Some days it’s just more difficult to cope. And for me yesterday it was one of those days.

it’s OK to not be OK.

Just recognize it for what it is and be aware. If it’s just a one-off like mine tend to be, you could just bounce back and be yourself tomorrow. Sometimes it takes a while.. couple of days.. a week to get out of the funk. If it goes more than a week though, consider talking to someone. Even just virtually, it can help..

Getting No Sleep..

August 22, 2020

It is 4:45, AM. & I’m still awake.. I don’t get this..

I had the same problem last night. I could not sleep. Finally dozed off at 6am & was up shortly after Noon.. So I got about 6 hours of sleep whereas normally I try for a good 12 hours..

So, given that had a short sleep last night & the physicality of filling, then emptying the car for the cottage, I figured I’d be out all night long.

I’m not that lucky.

Anyone got suggestions on how to get to sleep?

Edit: Started getting stomach cramps about 10-15 minutes after posting this.. Ended up dozing on the bathroom floor by the toilet for about 1½hr.. finally my system rejected whatever was the problem was & was able to sleep for about 5 hours..