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!
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. 🙂
Yesterday was the perfect storm. Everything conspired against me.
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..
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.
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..
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.
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
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..
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
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 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:
My Restless Leggs Syndrome kicked in despite the exercise. I had to take 1½ Trazadone to get them to settle..
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.
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.
This is kinda like the get to know style of bingo, but it’s just for you. Check off what applies to you.
I originally just posted this on my regular social media, but choose to write about here.. The reason I do is the reaction of a friend of mine, Susan.
Late last year she was diagnosed with Rheumatoid Arthritis. Now, she has been struggling with acceptance that her life he’s been permanently altered through no fault of her own. Recently she say the post on my social media of my bingo card (see below) & noticed that she checked the few spaces I had empty. She then got curious & looked at the rest of the card noticing that she actually checked a majority of the boxes aswell.
This was her “Ah-ha” type moment. And realized “I have a chronic illness.” I think this realization, and acceptance of the hard truth has actually be a relief for her. She’s realized that there are limits and she has to learn where her limits are. But she’s no longer stuck and is able to move forward.
While I’m not happy that my post gobsmacked her in the face with the truth, I am glad she’s got the acceptance and is moving forward.
See where my 3 bingo lines are. How full isUis your card? I know someone who actually checks each box. 😦
This is a long read, but if you haven’t ever seen/read it, then it is most def worth the time. Because of it’s length, I’ve made it 2 posts. Fell free to use it for your own use if you so desire.
About Fibromyalgia
My Need for Massage Therapy– If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.
My Good Days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
My Uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else. (Keep an eye out for the reposting of the topic “My Fibro is Not Her Fibro”)
My Weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My body’s metabolism is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.
My Stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
My Depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
My Sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, textures, odors, food, etc.. FMS has been described as the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.
My Intolerance – I can’t stand heat, either. Or humidity. If I am a man, I may sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My Clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
My Forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My Fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My Pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.
If you suffer from chronic pain of almost any type, you are at risk for developing a physical “disuse” syndrome.
What is disuse syndrome?
Basically, it describes the effects on the body and mind when a person is sedentary.
Disuse syndrome was first characterized around 1984 and, since that time, has received much attention in relation to back pain problems, other chronic pain disorders, and other illnesses. It has been generalized beyond chronic pain problems and some feel it is related to “the base of much human ill-being.”
The disuse syndrome is caused by physical inactivity and is fostered by our sedentary society.
Effects of disuse syndrome
This disuse of our bodies leads to a deterioration of many body functions. This is basically an extension of the old adage “Use it or lose it.”
There are several physical consequences from disuse. These occur in many body systems, most notably those of the muscles and skeleton, cardiovascular, blood components, the gastrointestinal system, the endocrine systems, and the nervous system. For instance, consider the following:
In the musculoskeletal system, disuse of muscles can rapidly lead to atrophy and muscle wasting. If you have ever had an arm or a leg in a cast, you will be familiar with the fact that the diameter of the affected limb may be noticeably smaller after being immobilized for some time.
Cardiovascular effects also occur due to disuse including a decrease in oxygen uptake, a rise in systolic blood pressure, and an overall blood plasma volume decrease of 10 to 15 percent with extended bed rest.
Physical inactivity also leads to nervous system changes, including slower mental processing, problems with memory and concentration, depression, and anxiety.
A key factor in chronic pain
Many other detrimental physiological changes also occur. Disuse has been summarized as follows: “Inactivity plays a pervasive role in our lack of wellness. Disuse is physically, mentally, and spiritually debilitating.” Many experts believe that the disuse syndrome is a key variable in the perpetuation of many chronic pain problems.
The disuse syndrome can result in a myriad of significant medical problems and increase the likelihood of a chronic pain syndrome developing or becoming worse.
Unfortunately, common attitudes and treatments in the medical community often lead to more passive treatment without paying attention to physical activity and exercise (of any type).
The disuse syndrome can also lead to a variety of emotional changes that are associated with an increased perception of pain.
So, what to do?
So, if you are suffering from disuse syndrome, you may be wondering what you can do about it. It can be overwhelming for some people in chronic pain to consider how to get moving. In my next blog post, I will discuss some practical ways you can take some positive steps to get more mobile.
In bed, for the most part.. Seriously.. The fog’s been thick and the healing sleep has been damn near extinct, thus the pain’s been rather nasty.
Doc takes me off my sleep meds & has me double up on my melatonin while he waits for blood results. This switch did squat to help.
So the bloodwork comes in & there’s not much there that’s a problem except thyroid levels are still too high. So up the thyroid meds & try new sleep meds..
New meds are a psychiatric medication. They made me sleep all damn night & most of the day! And none of that sleep was good sleep.. I have to thank God for the patches. & the pain pills I’m on.. So they psych meds last about a week & he put me on a medication I am already on, prescribed by my gp.. So back on nothing at all new & taking pain meds & oodles of melatonin..
So here I am.. Back on the clonazepam, waiting for it to work & over doing life yesterday was not the best choice.. Hope the current sleep meds kick in & help.. My body just wants to finally feel improved, preferably w/o extra pills..
Fibromyalgia Pain at Night – 10 Tips for Better Sleep
WebMD Feature By Jeanie Lerche Davis
Do you toss and turn at night because of fibromyalgia pain or discomfort?
“People with fibromyalgia tend to have very disturbed sleep,” says Doris Cope, MD, director of Pain Management at the University of Pittsburgh School of Medicine. “Even if they sleep 10 hours a night, they still feel fatigued, don’t feel rested.”
Research shows that with fibromyalgia, there is an automatic arousal in the brain during sleep. Frequent disruptions prevent the important restorative processes from occurring. Growth hormone is mostly produced during sleep. Without restorative sleep and the surge of growth hormone, muscles don’t heal and neurotransmitters (like the mood chemical serotonin) are not replenished. The lack of a good night’s sleep makes people with fibromyalgia wake up feeling tired and fatigued.
The result: The body can’t recuperate from the day’s stresses — all of which overwhelms the system, creating a great sensitivity to pain. Widespread pain, sleep problems, anxiety, depression, fatigue, and memory difficulties are all symptoms of fibromyalgia.
Insomnia takes many forms — trouble falling asleep, waking up often during the night, having trouble going back to sleep, and waking up too early in the morning. Smoothing out those sleep problems — and helping people get the deep sleep their bodies need — helps fibromyalgia pain improve significantly, research shows.
Medications can help enhance sleep and relieve pain. But doctors also advocate lifestyle changes to help sleep come naturally.
Tips to Get Better Sleep With Fibromyalgia
Creating a comfort zone at home is key to better sleep, whether you have fibromyalgia or not. It’s all about easing into bedtime feeling relaxed — and staying relaxed so you sleep through the night.
These 10 tips can help people sleep better:
* Enjoy a soothing (warm) bath in the evening.
* Brush your body with a loofah or long-handled brush in the bath.
* Ease painful tender points with a self-massage device (like a tennis ball).
* Do yoga and stretching exercises to relax.
* Listen to calming music.
* Meditate to tame intrusive thoughts and tension.
* Sleep in a darkened room. Try an eye mask if necessary.
* Keep the room as quiet as possible (or use a white-noise machine).
* Make sure the room temperature is comfortable.
* Avoid foods that contain caffeine, including teas, colas, and chocolate.
Therapies to Treat Insomnia When You Have Fibromyalgia
If you’re still having sleep problems, several therapies can help, including biofeedback, relaxation training, stress reduction, and cognitive therapy. A psychologist who specializes in sleep disorders can discuss these therapies with you.
The therapies help people handle stress better, which helps control fibromyalgia episodes, Cope says. “Fibromyalgia comes and goes,” she tells WebMD. “When you’re stressed out, that’s when it’s worse.” That’s when you’re most likely to have insomnia, too.
Medications can also help ease fibromyalgia pain at night, or directly treat insomnia. Medications to ease fibromyalgia at night include antidepressants, anticonvulsants, prescription pain relievers, and sleep aids.
No one therapy will control fibromyalgia pain 100%, Cope adds.
“Medications help some. Exercise helps some. Stress reduction helps some. Cognitive behavior therapy helps some… If you can get restful sleep, you’re going to function better when you’re awake.”
Fibromyalgia 
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