RLS then Exercise.. Uh oh!!!

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!

Gammy

My best friends Granma died earlier this week. Likely from complications due to a stroke.

^{RIP Gammy.. You are already missed.}

I’ve actually know Gammy for a long time. Cath’s Mom passed early so Gammy was her mother figure in her life.

For a while, Gammy actually rented the basement apartment in Cath’s townhouse. So, since I was there several times a week, I got to know her fairly well.

She was happy friendly woman. She loved her granddaughters & great grandchildren & a great great Grandson.. It was very obvious to anyone.

Gammy was just shy of her 90th birthday and had a long life. Having had three husbands, Gammy was a survivor.

She will live on in our thoughts, our prayers & our memories.

RIP Gammy.You are already missed.

Extra Restless RLS

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?

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

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.

24 Ways to Ease Up

With apologies to Paul Simon, there must be… 24 ways to ease your living.

Why 24? Why not? It’s a start! That people have to go online and type the words “How to relax” into a search engine should be indication enough that modern life may be getting too stressful. Why, with all the innovations and timesavers, do we feel more and more rushed?

Time is a constant – it always remains the same. What changes are our expectations of how much we can accomplish in that same old time. It’s scientifically proven that stress can lead to sickness and that relaxation is one of the things that can soothe the savage beast.

Hopefully everyone has at least one favourite way to wind down, because not every stress soother will suit every single person. Next time you feel tense and uptight, try out one of these ways to relax. Perhaps some will work for you, while others might inspire you to write your own list of ease-up ideas.

1. Dance.
2. Mono-task, as opposed to multitasking.
3. Progressively tense each muscle, holding each for 5 seconds then releasing.
4. Stretch.
5. Go for a walk.
6. Play a game. Sudoku, crosswords, hopscotch, whatever.
7. Soak in a bath.
8. Laugh.
9. Turn off your electronics. Enjoy the quiet.
10. Read.
11. Take a 5-minute break to clear your mind and breathe.
12. Cover your eyes with an eye pillow. Allow your anxious eyeballs to feel like they’re floating rather than gripping.
13. Play with your pet.
14. Drink a cup of hot tea. Or iced if that makes you feel better!
15. Take a whiff of a favourite soothing scent, maybe citrus or lavender.
16. Clean out the drawers of your dresser. De-cluttered can equal destressed.
17. Soak your feet in Epsom salts.
18. Listen to your favourite music.
19. Light a candle and watch the flame flicker.
20. Write in a diary.
21. Talk to a friend.
22. Make everyday activities more meditative. Like walking, for instance. Rather than rush down the hallway, place one foot in front of the other and really feel your feet ground into the earth with each step.
23. Unplug (or turn off) your phone.
24. Strive to take deep breaths to reach the tight spaces of your body – try to feel your breathing in your lower back and your shoulders

Source: PC Health by Shoppers Drug Mart

My Apologies

I had so many posts last month I forgot to get some set up for June!! Oops . My apologies.

It didn’t help that I spent the last week getting ready for virtual cub camp, our Council Cuboree.

There *will* be a new post later this week.

Myth Debunked VI of VI

FIBROMYALGIA DIAGNOSIS IS THE END OF THE ROAD

Many find it hard to accept a fibromyalgia diagnosis, not just because of the condition itself but because of what it means. It can feel like the healthcare professionals are saying ‘there’s clearly something wrong with you but we have no idea what it is… there’s nothing more we can do for you’.  This ties into the point of the trashcan / umbrella diagnosis.

Lack of information and fibromyalgia-specific support at the time of diagnosis can leave many feeling like the diagnosis is the end of the road, but that doesn’t have to be the case. The OP was personally told by her rheumatologist not to go online because she’d ‘fall down the rabbit hole’. I imagine the doctor wanted her to go home, give up and stop bothering doctors.

Acceptance, often a difficult and ongoing work-in-progress for many, can be done in conjunction with keeping open mind, still being open to new developments, diagnoses and tests and treatments while working to manage fibromyalgia in day to day life.

Myself, I knew my diagnosis before my doctor’s did (Did the same with my endo), so acceptance was never much of an issue for me. I think my GP had a harder time accepting it than I did.

While there’s no cure, a multi-disciplinary approach can help to some degree. The likes of pacing, pain self-management therapy, massage, acupuncture, gentle exercise, gadgets, self-help books, medication, supplements and so on will work differently for everyone; both the experience of fibromyalgia and its management will be different for each person. It’s often a case of trial and error for each individual to develop a routine and to find the tools that work more effectively for them. 

My regime is a multi-disciplinary approach as mentioned above. I have a muscle relaxer, an anti-inflammatory, low level narcotics, MMJ and a small selection of vitamins. I also regularly see a physiotherapist /osteopath, RMT, pain physician for trigger point injections, & my dentist because of my TMJ, I participate in exercise which prior to covid was Aquafit for the most part. I try to watch my dietary choices, but I know I still fail there- addictions to sugar & McDonald’s. I am also involved in chronic pain support groups in my area which are currently virtual.

What hasn’t worked for me includes Lyrica, Gabapentin, Cymbalta, Fentanyl and Codeine Contin. I have given acupuncture several tries but have not found it helpful for me & occasionally detrimental. My best friend sees a chiropractor but I found that they were less helpful for me. I also still need to be very careful in the way of exercise so it’s not to over do..