Tuesday, October 29, 2013

Blah


If I just sit here and think about how bad I'm hurting right now, I can barely stand it. My eyes are watering from the pain, and it's all over me, even my face and teeth and the tips of my toes. My scalp where my hair is growing from the follicles is in piercing pain.

Normally hurting this bad I probably would not blog it, just because this is very difficult to put into words and even type and focus. However this needs to be documented. This is the best way to really describe it, while it's actually happening. Maybe I can go back and edit later, because I'm not sure how much sense I'm actually making right now.

When I woke up this morning I literally said "God, Why me?" I'm so sick of feeling yucky. When I have many days of this in a row it's really hard to even get out of bed. I am out of bed today though and I call that an accomplishment. It's the little victories like that, that keep me going when it gets really tough. I will need to shower today too, so that will be another victory once it finally happens. (Probably after a long soak in the bathtub.) Feeling like this, I doubt I will get much of anything else done, which always puts me behind on life.

Usually if I can find ways of keeping my mind busy I can tolerate the pain much easier. The trick is finding the ways that don't involve making the pain worse. Right now everything hurts, so there aren't many things I can do besides, tv, because even clicking the mouse and typing is difficulty right now so no computer, and I'm not getting around very well, so walking isn't helping. Focusing my eyes is giving me issues too. This is a very miserable day.

The weather is cold and rainy... I love fall... I hate what it does to me now though. They are calling for this the rest of the week, so maybe if it stays consistent my body will acclimate to it and I'll feel better?


  • head, face and neck pain level 8.5
  • shoulders and upper back pain level 8
  • arms, wrists, hands and fingers pain level 7.5
  • lower back, hips, butt, legs, knees, ankles and feet pain level 7
  • abdominal pain and cramps pain level 4
  • watery eyes
  • sore throat
  • acne 
  • blurred vission  

Monday, October 28, 2013

Part-time Wife, Full-time Fibro Sufferer

Weather changes suck. I'm about 99.9% sure that is what is making me ache so much. It's been pretty rough the past week or so and it's been taking it's toll on me. I've had to sleep a lot and play the sleep catch up game. Insomnia has been rough, but usually once I get to sleep I stay there and then waking up is the issue.

I feel so bad for my husband, because most of the time I'm not much of a wife. I just can't keep up with my life and wifely duties, especially when the weather is changing as it has been lately. I know I need to fight through this and keep moving, but that so much easier said than done. I do feel as though I'm doing better than I was a year ago at this time. I can probably give that credit to cymbalta and to my wonderful husband that helps motivate me and get me going everyday.

Fibromyalgia really puts a damper on my social life and my fun. I was suppose to do some fun Halloween type stuff over this past weekend and was not able to participate because it was too cold and rainy and I was too achey and felt like poop. I slept all day long Sunday. That was my "sleep catch up day" this week. My husband tried to wake me up several times and I just couldn't wake up. It was almost like I was under sedation, I was just THAT TIRED. I guess you could call it a "fibro crash", because I had absolutely no energy left, just enough to breathe and rest.

I could really go for a symptom reprieve at this point. i need a break. I'm sick of feeling like crap. I'm sick of the aches all over my body. I'm sick of every time I eat my stomach freaking out. I'm sick of waking up with sore throats and my entire body throbbing like I have the worst flu imaginable. I'm sick of disappointing my loved ones, because I don't feel up to doing what ever it is we had planned to do. I am just plain sick and tired of the fibromyalgia that plagues my life. I'm also sick of complaining about it.


  • head and face pain level 3
  • arms, wrists and hands pain level 4
  • shoulders, neck and upper back pain level 6
  • lower back, hips, butt and legs pain level 7
  • ankles and feet pain level 5
  • stomach and intestinal cramps
  • constipation
  • sore throat
  • blurred vision
  • very tender to the touch all over. 
  • my left shoulder is extra tender and when I move it I can hear the grinding and popping of my joint. ick Pain level 8




Saturday, October 19, 2013

...


It was another rough night, but I woke right up at 10 am before my alarm even went off. I was a little disoriented this morning and achey, but I'm trying. I had really bad restless legs last night. I did stretches and moved around trying to quiet my legs, and then my arms, wrists and hands started feeling it too. I don't remember when I finally fell asleep. I know I started trying to sleep about 10:30pm and the last time I remember looking at the clock it was just before 3:00am.

When I think about all the time I waste trying to sleep it makes me sick. My husband has an off button and he can literally fall asleep standing up, probably in the middle of a concert or something. He just has to be tired and to sleep he goes. MUST BE NICE!!!

Restless Legs Syndrome is becoming a big problem lately with my sleep. I did a blog about it about a month ago, and I remember I looked up all kinds of information. I even tried the goofy wise tail remedy of putting a bar of soap between my sheets, and SURPRISE that didn't help. hehe I am desperate to find a cure with out having to add another drug to my medicine cabinet. Apparently I need to give up some of my long time vices, like coke zero. The caffeine is no good... and of course there's smoking which we all agree I need to quit. I also need to make a point to get on my treadmill every day, even if it's only for a few minutes, and maybe even a few times per day. I know it will make me feel better. It always has in the past. I just have to get over the initial first week or so of not wanting to, then soon I will crave it. I did 5 minutes so far today, it's a good start, and not over doing anything.

Restless legs syndrome (RLS) also known as Willis-Ekbom disease (WED)[1] orWittmaack-Ekbom syndrome, is a neurological disorder characterized by an irresistible urge to move one's body to stop uncomfortable or odd sensations.[2] It most commonly affects the legs, but can affect the arms, torso, head, and even phantom limbs.[3] Moving the affected body part modulates the sensations, providing temporary relief.
WED/RLS sensations range from pain or an aching in the muscles, to "an itch you can't scratch", an unpleasant "tickle that won't stop", or even a "crawling" feeling. The sensations typically begin or intensify during quiet wakefulness, such as when relaxing, reading, studying, or trying to sleep.[4] Additionally, most individuals with WED/RLS suffer from periodic limb movement disorder (limbs jerking during sleep), which is an objective physiologic marker of the disorder and is associated with sleep disruption.[5]
Some controversy surrounds the marketing of drug treatments for WED/RLS. It is a "spectrum" disease with some people experiencing only a minor annoyance and others suffering major disruption of sleep and significant impairments in quality of life.[6]

8 Lifestyle Tweaks for Restless Legs Syndrome

1. Get hot and cold. - a hot bath or heating pad and/or cold packs on your legs may help

2. Move stretch and massage.

3. Review your medications

4. Be active, but don't overdo it. 

5. Back off of caffeine

6. Avoid alcohol.

7. Eat a healthy diet.

8. Upgrade your sleep habits.


Other Helpful Links:

12 HOME REMEDIES FOR RESTLESS LEGS SYNDROME

Restless Legs Syndrome
Prevention & Treatment


I have to say I really love that I've been doing this blog. I've been learning so much and then putting it all together in one area that I'm able to refer back to when I need it.                

  • Head and neck Pain Level 6
  • Shoulders, arms, wrists and hands Pain Level 3
  • Lower back, butt and hips Pain Level 4
  • Legs, ankles and feet Pain Level 5
  • Face Pain Level 2
  • Still have lower abdominal cramps 
  • Frequent urination with an urgency to go even though there is usually not a whole lot there because I just went 30 minutes ago. 
  • all over fibro ache but not as bad as usual
  • The weather is overcast and it's cold and suppose to rain.
  • I ate terrible yesterday, A&W... it was awesome... which reminds me I still haven't ate today. I better go do that...

Friday, October 18, 2013

Sleep Catch up!


After I've been sleep deprived for several nights i finally crash out and it's usually for a day or so. This time I finally crashed out Thursday around noonish and woke back up Friday at 8:30 am. Such a very disorienting feeling to lose a day like that. Especially 8:30 am right now it's still a bit dark, so is it morning or night?

I have always been told that you can not catch up on sleep,... however, I have to spend time trying to do this at least once every two weeks or so, depending on how often my flare-ups have been.



Helpful Linkage:
Why do we sleep? To clean our brains, say US scientistshttp://www.theguardian.com/science/2013/oct/17/sleep-cleans-our-brains-say-scientists

Catch-Up Sleep Won't Make Your Brain Work Any Better, Small Study Suggestshttp://www.huffingtonpost.com/2013/08/20/catch-up-sleep-brain-reaction-time_n_3779697.html

Can You Catch Up on Lost Sleep?http://online.wsj.com/news/articles/SB10001424127887324102604578494872502357516

Can You Catch Up On Sleep?http://www.shape.com/lifestyle/mind-and-body/can-you-catch-sleep

Can you make up for lost sleep?http://www.uamshealth.com/?id=11491&sid=1

Catching up on lost sleep a dangerous illusionhttp://usatoday30.usatoday.com/news/health/2010-01-14-Sleep14_ST_N.htm

Catching up on lost sleep? It's a myth...
http://www.hlntv.com/article/2012/09/14/sleep-study-catch-texas-southwestern

What's the best way to catch up on lost sleep?
http://theweek.com/article/index/205666/whats-the-best-way-to-catch-up-on-lost-sleep

Can You Catch Up On Sleep?http://www.prevention.com/health/sleep-energy/research-can-you-catch-sleep

This Is Your Body Without Sleephttp://www.prevention.com/health/sleep-energy/how-lack-sleep-affects-your-health


I am feeling a lot better since I was able to get some rest. My lower back is much better, and I'm moving around better. My face doesn't hurt anymore, but my head, neck and shoulders are still quite sore.

I feel like the weeks go by so fast. I spend so much time trying to recover from day to day flare-ups that I don't have time to get bored, or get things done that I've been meaning to do. I feel extremely self absorbed most of the time. I hate that feeling. I miss my family and friends. I miss going places and seeing things. I miss live music! I miss Cedar Pointe! What I wouldn't give to go on all the roller-coasters at Cedar Pointe again, or head bang and dance all night long seeing my favorite band live. I just can't do that anymore, I've tried though and I've paid for it dearly for days and weeks even. I miss LIVING... living with no fear of pain. Forgive me for the pity party, that's just my narcissism again. Ugh!


  • Head, neck and shoulders Pain level 6
  • Lower back, butt, hips, legs, ankles and feet pain level 4
  • arms, wrists and hands pain level 2
  • lower abdominal pain and bloat 4
  • The weather is cold still but at least the sun is shining today and there are still a few clouds.  
  • It would really be nice to make it to the pool if I can. I'm going to need to find someone that will take me, which is usually a challenge. 
  • I kind of just want to stay in today and do nothing... 

Thursday, October 17, 2013

How to Sleep,...a battle every night


I had a few good days, but the last two or three have been BAD.

Last night I barely slept, again. I fell asleep a few times but kept waking up and couldn't get comfortable.

I've been craving sweets like crazy. I wish my husband wouldn't bring them in the house because it's making me fatter and I can't stay out of them! I eat and eat until it's all gone! Seriously I can't help myself. UGH!

I'm in a brain fog... I can't think straight. Just random thoughts that I can barely make sense of. I need to find my off button, ... sleeping would do me a lot of good at this point.

The weather has still been raining and cold. It sounds like it's going to stay that way. I'm not ready for the snow they are talking about by the end of the month!

  • lower back, butt, legs, ankles, feet pain level 9 !!! :-P and stupid restless legs even at 10 am in the morning! 
  • head, face, neck pain level 6
  • shoulders and upper back pain level 8
  • arms, wrists, hands pain level 7
  • abdominal/intestinal bloating, gas and discomfort pain level 4
  • nausea
  • blurred vision, (since last night)
  • frequent urination all night long and continued today
  • if all that isn't bad enough my fall allergies have been acting up, lots of coughing and clear runny nose and sneezing
Helpful Linkage:

19 Ways to Fall Asleep Fast

How to Fall Asleep Fast


13 Natural Ways To Fall Asleep Without Sleeping Pills

8 Weird Tips to Help You Fall Asleep

Yoga Moves to Beat Insomnia, Ease Stress, and Relieve Pain




 


This right here just cracks me up ---> http://www.youtube.com/watch?v=DxV80j8iuXc
You are suppose to hypnotize yourself to sleep by watching this youtube video. HAHA!!

How to Fall Asleep in Less Than 30 Secondshttp://www.stevepavlina.com/blog/2013/07/how-to-fall-asleep-in-less-than-30-seconds/

How To Fall Asleep Instantly
http://hubpages.com/hub/How-to-get-a-good-nights-sleep-and-beat-insomnia

Wednesday, October 16, 2013

Healing Only to Suffer Again - The Endless Cycle of Fibromyalgia

If you are currently a fibromyalgia (FMS) sufferer or you are very close to someone that is you know that basically life is an endless cycle of healing from flare ups.

flare-up
noun
plural noun: flare-ups

1.
a sudden outburst of something, esp. violence or a medical condition.


My main issue most days is when I start to feel better after many days of feeling awful and putting things off because I don't feel good enough to do anything, I will over do it and try to get all caught up in one day. This is with out a doubt a recipe for a flare up. When doing any kind of physical activity I MUST always remember to keep an even slow pace and rest often no matter how good I feel. I can NOT run around the house and clean it like a teenager all in an hour or two like I use to.


I've always been some what of a neat freak about my house. I will let it go just far enough until I can't stand it anymore and then it must be cleaned, and I mean really deep "spring" cleaned. Floors have always been a big pet peeve of mine, they must be clean enough to go bare foot, because I hate socks. My feet need to be free, and I hate when they are dirty. I use to be able to get down on my hands and knees and scrub my floors with a scrub-brush and bucket of soapy water and ratty towels. I would really pay for it the next day, with my arms, upper back, neck and head would ache pretty bad, but I was in my early 20's so I would bounce back quickly. I could get away with washing the kitchen and bathroom floors about once every other week, then maintain them by sweeping and what I called "spot mopping" in the meantime. However now that I'm in my "late 30's", (ick i hate saying that,) It's hard for me to keep up with just sweeping and swiffering the floors once a week! We shall not even speak of the tubs, it's so hard to lean over and scrub anything these days, and paying for that is the worst! I wish I could hire a cleaning service.


It does seem like everything I do comes with a painful cost. If I over indulge in anything not even physical, it comes with the cost of pain. As I always say "I pay to play". If I sit and craft too long with my head looking down, paint or draw, but don't take enough breaks, my neck and shoulders will be hurting really bad by the next day or two. If I sit in the wrong chair too long, or ride in the car, or stand too long, lay the wrong way, sit wrong, turn my head wrong, bend wrong or tense my shoulders up for a long period of time, I can almost count on extra pain or a flare up of FMS. Frustrating? YES! That is one of the most frustrating parts of fibromyalgia, ... I can't do anything with out consequences. Making plans is very difficult. I find myself turning down opportunities to do other things because I know I have to do something important in a few days, and I want to make sure I'm not flaring that day.


One of the other most frustrating things about having a physical debilitating illness, is having people in your life that have no clue and don't understand. There is always going to be people that don't get it, all I can do is try to help them realize and be empathetic myself that it's hard to be sympathetic to something you are not experiencing yourself.


It actually makes me feel better to hash this all out in my blog,... whether or not anyone is reading this, at least I'm helping myself. :-)

  • head, face and neck pain level 7 
  • shoulders and upper back pain (permashrug) level 8.5 
  • lower back, hips, legs ankles and feet pain level 8 
  • arms, wrists and hands 6 
  • belly bloat and lower abdominal pain pain level 5 
  • the weather is yucky, raining and cold (temp dropped at least 15 to 20 degrees for the high and the low isn't quite freezing yet.) 


Helpful linkage:

10 Causes of Fibromyalgia Flares


A visual guide to fibromyalgia (slide show and very informative)

What is Fibromyalgia?


Preparing for Flares

Don't Be Caught Without the Things You Need!


The Patient's Guide to Chronic Fatigue Syndrome & Fibromyalgia


What Fibromyalgia Feels Like


Hurdling Painful Flare-Ups



Tuesday, October 8, 2013

The way my body deals with stress


My body has a painful process for dealing with stress... i've learned this over the years of dealing with fibromyalgia, which makes day to day life very difficult and making plans to do things that may flare anxiety also difficult. Plus i'm a worry wart, my doctor says that I must have a list of things to worry about, once I get past number one, I move on to the next. I realize that a certain amount of stress is healthy, but I guess I never really learned to deal with it properly. No, that's not true, I used to be able to deal with stress,... I blame fibromyalgia. It makes everything else difficult, so it must be what makes dealing with stress next to impossible at times also.


I've learned to deal with and counter-act some of the tricky habits my mind and muscles with conjure up before an event that has been on my event calendar. The night before is always the worst for my mind and for sleeping, as I will not be able to 'turn my brain off' or let my body relax and find 'the sleep place'. It's like I forget how to relax and how to sleep.  I wish I had a built in "off switch". That would have been a great idea for God to include in His creation of Adam and Eve. I wonder why He didn't think of that.

With fibromyalgia, SLEEP is the MOST important element in your day, with out it, any energy you may have had, is used up in normal involuntary body functions. Fibromyalgia is a disease that is robbing your body of energy, this is part of the reason muscles are so sore. I don't understand how it all works, and to tell you the truth I don't think anyone really does, but I do know what it's like to live with it, and you learn a lot about something just by experience.

My pre-stress and pre-anxiety before an event, (even small events like family holidays, or just a doctors appointment) usually aides in my sleeplessness, (at least the night before, if not more,) which will also weaken my immune system at times. If the event is over physically strenuous, this will also impair my bodies ability to fight off any illness. Being sick during fibromyalgia flare up is always 10 times worse than "just sick", because I'm are already hurting and sore from 'fibro-aches', then sick on top of that making the 'fibro aches' that much worse too.

When I'm worried and stressing I tend to do the "perma-shrug". My shoulders will be permanently tensed up in the shrugging position and I won't be able to relax them. This causes all sorts of problems with my upper back, shoulders, neck and even pectoral muscles. Sometimes if I have to drive long distances before I get to the event, I'll perma-shrug all the way there without even realizing it.

Once I get to an event, I sometimes get the shakes. Hopefully this is not too noticeable unless you are looking for it and/or i'm trying hard to hold extra still to pour a drink, serve up some grub, or write. I fear that this will gradually get worse as I get older, as I'm sure it does for just about everyone, but i'm not even 37. Usually the shaking is when I'm in a fibromyalgia flare up, and/or suffering from anxiety or stress.

Once I am home again, I usually have a stressing mind race and replay the event in my head, worrying and hoping I did not say anything that offending anyone or made myself look extra dumb or evil. This can preoccupy me for the day and night, even lose sleep again over it and usually very sore the next day or three to recover.

Regular recovering lasts any where from 1/2 day to a week depending on how worn out I've let my body get and also depending on a million other circumstances. Usually if I'm keeping up on my sleeping, my stress level is low, I've been eating a well balanced diet with low fat, low carbs, and a lot of vegetables, not skipping meals, taking my medication, and staying active, I will be able to keep up on house work and still go out to dinner or shopping once or twice a week with family or friends. I still have days that I will just have to sleep all day. The weather is also a factor, as temperature and air pressure changes usually affect pain levels as well.


In any case, my body will finally relax from the stress and then the aches set in. The soreness could be compared to a really bad case of the flu, the worst you have ever had or could ever even imagine. Some people think fibromyalgia just feels like over worked muscles from working out at the gym too hard. That is so wrong. I wish, that pain is something I can deal with, and I would be able to do all the things that I miss doing! Fibromyalgia pain is a deep bottomless heavy inflamed throbbing stabbing with a constant tender aching, that is so overwhelming and sickening at times that's all i can feel and "hear". What I mean by "hear" is even when someone is talking in a normal voice in a quiet room it can be hard to hear them over the pain and be able to concentrate on the words to comprehend them. I say "what?" and "huh?" more times a day, it must get annoying! hehe Sometimes I even watch TV shows a second or third time because I know I missed a bunch, (thank goodness for DVR!)


  • Headache that starts in the back of my neck and is on the right side mostly, behind both eyes and in my forehead -  Pain Level 7
  • Neck and shoulders - Pain Level 8
  • Chest, torso, and lower back - Pain Level 6
  • Arms, wrists, hands and fingers - Pain Level 7
  • Legs, butt, ankles and feet - Pain Level 6
  • Jaw and face - Pain Level 4

      Helpful Links

Stress~the silent killer


http://thinkloud65.wordpress.com/2012/06/01/stressthe-silent-killer/
What Is Stress? How To Deal With Stress

http://www.medicalnewstoday.com/articles/145855.php



Tips for Coping With Fibromyalgia


http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tips-for-coping






http://www.webmd.com/fibromyalgia/guide/fibromyalgia-causes




10 Causes of Fibromyalgia Flares


http://www.healthcentral.com/chronic-pain/c/5949/151398/fibromyalgia/




Psychological stress and fibromyalgia: a review of the evidence suggesting a neuroendocrine link


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC416451/






http://fmaware.org/News2a03c.html?page=NewsArticle&id=7291








Fibromyalgia and Stress


http://www.self-guided.com/fibromyalgia-and-stress.html






http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=causes


Wednesday, October 2, 2013

Ups and downs, the story of my life.


The past couple weeks have been pretty good. I have been getting things that have been bugging me done around the house, but I think I over do it, not on purpose of course. I just get excited that i'm feeling better, so I do as much as I can possibly do, (there is so much!!) If i do a little and take a break and do a little more, it's surprising how much i get done over a day. I usually am pretty sore, but not as bad as when I try to do everything at once. I always pay for my efforts in triple what I should have to, but at least I'm getting around and getting things done now and not bedridden!

My internet connection has been being a big pain in my butt, so I haven't been blogging as much as I'd like to. Ideally, I'd like to be doing this everyday to keep better track of my day-to-day pain.  I guess something is better than nothing though.

I feel like the Cymbalta has been helping me. I'm still not up to my full dosage, (which will be taking it everyday, and not taking my old med anymore,) but I think another week or so I should be there. I've noticed that I have slightly more energy now, my sex drive has been slightly higher, (compared to non-existent,) and it has been easier to deal with my daily aches and pains... YAY!! I have just been keeping my mind busier and I don't think about them. Sleeping has still been an issue, but it's been an issue my whole life, so I have yet to find anything that helps me with that.

Fall is usually my worst time of year, as far as the weather goes, and we have just about hit some good fall weather lately. Although the whole summer felt like fall with the odd up and down cooler than usual temperatures. It's also allergy season and my allergies are in full force! I do believe it has turned into some kind of upper respiratory infection that I'm trying to fight off for the last 3 days. I think I just blew my nose right off my face, ugh! I hope I don't have to go to the doctor for this, because I really don't care for my current family doctor. I don't want to go see him. I'm trying hard to fight this off all by myself. However being sick when you have fibromyalgia is like a million times worse than normal being sick, because it magnifies all your aches x 1,000.


  • neck and shoulders, stretching has been helping a little - pain level 8
  • arms, wrists, and hands - pain level 7
  • head is a dull ache on the right side, which is odd because it's usually on the left. I believe it is a sinus related headache though and when i woke up I didn't notice it at all, but it keeps getting worse as the day goes on. I will be taking Benadryl to see if it will help at all - pain level 6
  • legs, ankles and feet (especially thighs) pain level 6
  • lower back, hips and butt (sharp stab down the right leg and foot) pain level 8