Posts Tagged ‘Fibromyalgia’

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 X

October 19, 2021

The one other thing that many Fibromites have is common, but varies greatly is MCS – Multiple Chemical Sensitivities.

MCS is considered, in the most part, an environmental illness – a condition activated by the things in the world around us . Possible triggers that set off people’s symptoms vary including tobacco smoke, auto exhaust, perfume, insecticide, new carpet, chlorine, and more. Other chemicals that can set someone of are also in food or beauty products like moisturizers, or facial cleaners..

But there are also chemicals in our food.. Some of those chemicals are pretty scary.. I’m allergic to a binding chemical in food, but its also in the adhesive in bandaids & the other is found in moisturizers.. So makes you wonder..

My MCS issues in the way of food are Xanthan Gum, Guar Gum & Carrageenan.. This limits my food so I cant eat:

  • Ice Cream / Frozen Yogurt
  • Breaded foods like Chicken fingers & fish sticks
  • Sauces including mayo, bbq sauce & salad dressing
  • Most dessert
  • Most premade meals
Foods most take for granted that I shouldnt even touch

I also react to certain products but i dont know why such as KD. The brand name Mac & Cheese does a number on me, but other brands dont.. Another example is Campbell’s Chunky Soup – Beef, but I can eat any other chunky soup by Campbell’s.

As you can see, I cant eat alot of pre-processed food.. Whats sucks the most is the Ice cream & desserts. Only ice cream I can have is Haagen-Dazs.

And yet every one is different. Some people react to sulphites, some to food dyes, and others are sensitive to certain products like milk but not cheese. It makes no sence but there it is.

The Princess & the Pea

October 1, 2021

For those not familiar with the story. See Below. It was also made into a movie in ’02.

The princess slept on a pile of twenty mattresses and twenty feather beds and still did not sleep well due to the small pee in the middle of the bed under all those mattresses .

I am convinced that the princess in this story had some sort of chronic illness.. From the description, she could have any of the following: Ehlers-Danlos Syndrome, Fibromyalgia, CFS/ME, Rheumatoid or Osteo- Arthritis, Allodynia, Complex Regional Pain Syndrome, Sensory Processing Disorder (In conjunction with or due these other conditions.

The American National Library of Medicine says “Possibly the princess in Hans Christian Andersen’s ‘The Princess and the Pea’ suffered from FMS since chronic sleep disturbances are typical in FMS. These sleep disturbances have been attributed to a dysfunction in the systems regulating sleep and wakefulness resulting in loss of deep sleep. ” That can be said about the other conditions I mentioned as well..

If you do a search of “The Princess and the Pea, chronic illness”, you will get a long list of articles believing that the lass in the story wasn’t just ‘sensitive’, but had a chronic illness. While all of the conditions I mentioned above, it seems Fibromyalgia to be the most common conspiracy theory..

What do you think? Does she have a chronic illness? Which one?


The Story – The Princess and the Pea

A pile of 40 mattresses with a pra under the bottom one

Once upon a time, there was a prince who lived in a wealthy kingdom. When he had reached the proper age, his mother, the queen, decided the time was right for her son to find a bride.

The prince, however was determined not to marry just any girl, but that his future wife should be a “real” princess. So he traveled the world and searched in all the kingdoms and met with all the princesses, but he still wasn’t satisfied.

One evening there brewed a terrible storm, with thunder, lightning, and rain. It was really frightful! In the midst of it all came a knock at the town gate. The old king went to open it.Who should be standing outside but a young lass, and what a sight she was in all that rain and wind. Water streamed from her hair down her clothes into her shoes, and ran out in the heals.

She claimed to be a real Princess. Although no one believed her, she was invited in to stay for the night.

The queen decided to test the young girl’s claim of nobility – without saying a word, the queen went to the bedroom stripped back the bedclothes, and put a single pea in the bottom of the bed. The queen then took 20 mattresses and stacked them on top of the pea and took 20 eiderdown feather beds and piled them on the mattresses. Up on top of all these the princess was to spend the night.

The next morning when the girl woke up, the queen asked how she slept. “Oh very poorly!” she said. “I scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, and now I am black and blue all over my body. It’s horrible!”“

They saw at once that she must be a real princess when she had felt the pea through twenty mattresses and twenty feather beds. Nobody but a real princess could have such a delicate skin.So the prince took her to be his wife, for now he was sure that he had found a real princess

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.



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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

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?

Myth Debunked VI of VI

June 6, 2021

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..

Fibro Sucks! But My Friends Don’t!

May 31, 2021

so we have finally reached the 31st of May, the final day of fibromyalgia Awareness Month. I know I’ve been posting a little extra and almost exclusively about fibromyalgia this month but but else would I do? LOL

what I would like to thank all the people in my life who support me. I made masks for those closest to me as well as myself. I would like to thank each and every one who wore these masks & I hope will continue to wear them until we no longer need them.

This lad is on of my guy friends whom I am fairly close to, but I was surprised when he said he wanted a mask. Apparently he knows others (including 2 mutual friends) with Fibromyalgia.

Tony.

The only one I made a mask for who I do behave an image of is my nephew cuz he couldn’t find his (not surprising, cuz his mom’s wearing it!) But my sister, her 2 daughters, and my Mom & Dad. I thank my family for their support

Cassie & Kyah, Wendy, Dad and Mom

My best friends and their partners.. I’ve known both Catherine & Gerry since high school. I’m lucky to have maintained their friendships after 30 years. I thank them & their partners. Cath’s masks read “I wear purple for my BFF” & “I wear purple for ME”.

Catherine & Brett and Sara & Gerry

As many of you know, I’m involved in Scouting & I had some of my fellows outer request masks as they know how much it impacts my daily life.. I worked with Rainbow 13th directly for 2 years in Beavers & she is our outgoing group chair for one group. Raksha 13th has worked with me at Cub level for 3 years now& is out incoming Ng chair. She has seen how it impacts me and the improvements I have made over the last few years. Rainbow 1sy, well.. I’ve only been working in tandem with her since Covid hit & we initially amalgamated the groups, but like the bffs, I’ve known her since highschool and we did Venture Scouts together as youth.

Rainbow 13th (Charlene), Raksha 13th (Jen) & Rainbow 1st.(Jenn)

& I support me. Some days I have to remember that.

i have 4 masks.. 2 that say Fibromyalgia Awareness, but different patterns.. one that states “I wear purple for my BFF” (cuz my bff has fibro too) & “I wear purple for ME”. Mine, I will have in regular rotation – good thing purple is my favourite colour..

4 different days 4different masks.. & Yes, each has been worn several times over the last few weeks. Very rarely was I not in a fibro mask. & If not, I had purple butterflies!

So everyone who supports someone with Fibromyalgia, on their behalf, I thank you. Whether it’s doing our groceries wearing a mask for Fibromyalgia Awareness or just checking in to make sure we’re ok,, we do appreciate you & your support.

Thank You!!