Wednesday, November 8, 2017

Frenetic Fibromyalgia Moments

 


   I thought that I would share today about how it feels to have those "Frenetic Fibro"  moments that usually come after a crash where you feel like you have to get everything done that you were not able to do when you were crashing and could not do much at all.  The reason I am sharing this today is that I am in the middle of one of those Frenetic Fibro days.  Now I want to say that this is a term that I have coined to explain how I am feeling.

   Yesterday was a bad crash day for me.  Walking down the hall was even difficult.  It HURT!  I did everything I could think of to try and ease the pain.  By the evening, it finally eased up enough that I was able to get in and out of the hot tub without help.  Some days, even though the hot tub helps with the muscle pain, I can't even manage to get in or out of it on my own and there are days when it is way to painful to even life my legs over the edge of it and ease myself it.  It feels like I have lead weights for arms and legs.


   Be right back...phone is ringing.

   Rachel just called and asked if I would like to come and cuddle baby Steven, who is teething, today while she gets some housework done.  Normally I would jump at any chance to spend time with the two of them, but I just can't today.  I explained to her what was going on with me and she, bless her amazingly loving heart, understood that although I wanted to come, I just can't today.  My nerves are pretty much shot and I feel like I am on the edge of a panic attack...not what baby Steven needs or Grammie needs.  I think with his fussiness and my anxiety, neither one of us would be helping each other and would just make each of us even worse. 😩

   So here is a peek into the way my mind and body are working today (and this is pretty common for me).  I woke up knowing that I was behind on things around the house.  I had a list of things that needed to be done today...like crucially needed to be done.  I then had another list of things that I wanted to get done because they were driving me nuts sitting there on my "to do" list and causing anxiety for me.  First off was getting going on the laundry.  I have a total of four loads to get done today.  Now I know that one of those loads could wait until tomorrow, but the OCD has kicked in big time by now and in my mind IT MUST BE DONE TODAY!  I tried to convince myself otherwise but that led to more frenetic energy and ramped me up big time.  I got busy making bread dough and got that rising and then started on the Scrapple that we are having for dinner tonight.  Once I had that done, I discovered that something had leaked in the refrigerator, so of course I had to clean that up right away.  The risen loaves of bread then went into the oven to bake and I got busy on getting the old leftover bread loaf cut up and seasoned to make croutons with.  While I am running around doing all this, I am still working on getting loads of laundry in and out of the washer and dryer, folding them and letting the fur babies in and out of the house onto the back porch more times than I want to count.  

  I notice that my body is aching more and more with each task I do, but I keep pushing myself knowing that I will be paying for it later.  Instead of thinking like a rational person, I push myself further and further.  The bread comes out of the oven and the croutons go into the oven and I fold another load of laundry.  The croutons come out of the oven and more laundry needs to be folded and another load transferred from the washer to the dryer.  By this time my muscles are burning and screaming at me...do I stop?  Nope!  I still need to take a shower and get myself ready for the day, run down to the post office and library (I have things due today and some things to pick up and the library will be closed by the time Jeff wakes up).  Chris is coming over later to drop off the truck for us to use to get pellets for our pellet stove and I have to gather some things up here for him to take back home with him.  I notice that the floors need to be vacuumed and once again the OCD kicks in.  I cannot do that until Jeff wakes up and it is driving me absolutely bonkers.  Only 2 more loads of laundry to deal with!  Yay!!!!

   Some days I can honestly pace myself and rest when I need to.  Days like today are ones where as much as I KNOW I need to do that, the frenetic energy, anxiety it produces and OCD have me so ramped up that even trying to rest makes it even worse.  I know it sounds crazy and counterproductive and it is.  It is that whole "flight or fright" response that many of us with Fibromyalgia find triggered up big time.  Our central nervous system is always on high alert, even on good days, and we can't help that.  It is part if this disease.  But days like this take it to a whole other level.  It becomes a compulsion that many of us cannot control, even if we wanted to.  I know that so many of you have shared with me how you are amazed at how much I can get done, even with this disease coupled with my CFS.  This is the reality of how it happens.  I push myself to the limits and beyond some days because I know that there is always another crash and flare around the corner and that produces anxiety for me.  My pattern has become push one day and crash the next when I get this ramped up.  Sometimes I am able to pace myself and do one thing and then rest, do another and then rest and honestly, that is the best way for me to manage my life.  Today is not one of those days.

   I know I sound like a crazy person but honestly there is some science behind this.  Studies have shown that most of us with Fibromyalgia are type A people who have had some severe trauma in our childhoods when our central nervous system was developing.  Some of us came from abusive homes, some of us came from homes where we were expected to be perfect at all times, some of us were forced to step into the role of being a parent and help raise our siblings and were held accountable for their behavior also.  Some of us were sexually abused as children by family or others (for the record, I was not sexually abused by a family member) and to add to that trauma, were either not believed or told to keep quiet about it and were never given the help that we needed to deal with it.  We all learned to be hyper vigilant at all times and it has taken a huge toll on our health. We are sometimes able to find ways to cope in our early 20's and 30's, but by the time we hit our 40's and beyond, our bodies become "stress overloaded" and our symptoms get so much worse.  It's like the dam has reached it's breaking point and develops some cracks at first, so some of the water starts to escape, but the pressure continues to build on those spots too making the cracks bigger and bigger and then it bursts wide open.  Does that make sense?  It's like our central nervous system is now programmed, due to our past, to be on high alert at all times.  This increases our perception to pain and causes our muscles to tense up big time, which causes even more pain.  Stress causes us to have more anxiety, which then causes us to feel even more stress because we feel guilty and are in severe pain, which then causes even more stress, anxiety and pain...it is a vicious circle.

   Here is my "saving grace" in all of this.  On days like this (and every day for that matter), my family and my close friends understand and do what they can to try to help me.  Rachel was wonderful when she called and fully understood that I just could not help her today, even though I wanted to be able to with all my heart.  She was very loving, compassionate and cared about me.  Yesterday, when I was crashing/in a flare, Josh called me instead of us just communicating back and forth through facebook messenger because he knew that typing was difficult for me right then.  If my husband sees me pushing myself, he will literally step right in and take over on certain tasks for me and we will work together to get through my list.  He will also make me go and rest and sometimes I am able to for a little while at least before I get back up and tackle another project and continue to do so before my body just won't let me anymore.  He has taken over certain chores, like cleaning the kitchen, which tends to overwhelm me and causes me to hurt like crazy.  My friend Shannon, on a recent shopping trip to Costco, took one look at me and knew I was having trouble understanding what she was saying about how to load up her car with our groceries to make it all fit (it was a bad fibro fog day) and had me take care of her adorable puppy and she loaded the car.  She then also realized that I could not deal with any more "stimulation" of having lots of people around me, so we grabbed lunch to eat in the car on the way home instead of going back into Costco to grab some lunch there.  My family knows that I am limited in energy and that there are days when I just cannot cope with anything more.  Without their help, love and support, I know I would sink into a deep depression (which is very common for people with CFS and/or Fibromyalgia).  It is because of them that I am able to focus on the good things in life most days and know that there are brighter days ahead, even when I am at my lowest and breaking point.

   So there you have it.  A look into what my Frenetic Fibromyalgia Moments look like.  I do hope that it helps you understand what it is like to have this disease.  We do have these really strange bursts of adrenalin that cause us to get like this.  It's like riding a wave of extreme high frenetic energy and then crashing again.  This is part of this disease.  That is why we will work like crazy and wear ourselves out one moment and not be able to move the next.  We are not "faking" our illnesses or looking for sympathy, we just want people to understand that this is a real disease, just like CFS is or Lupus, or Rheumatoid Arthritis (which sometimes are illnesses that people with Fibromyalgia also have).  For me personally, I have both CFS and Fibromyalgia, along with Arthritis, IBS (which they now are saying is actually part of Fibromyalgia) and Hypothyroidism.  Yes folks, I am a medical mess here. ;)  But my illnesses are not fatal and for that I am extremely thankful!

   

   

32 comments:

  1. I see my CFS in so much of your writing. I am so encouraged by your honesty and ability to describe what goes on.
    I, too, have to explain to people the "I want to do it, but I can't right now' part of this illness.
    I've read the IBS can also be part of chronic fatigue.
    You and yours continue to be in my prayers.
    SJ

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    1. Thanks SJ, CFS and Fibromyalgia share many of the same symptoms and yes, IBS is one of them. Since I have both, I get the "best" of both of them. LOL! ;) Gotta laugh right and see the humor in it. :) Praying for you too my friend!

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  2. Oh sweetie I feel so bad for you. My arthritis is under control but I too have pain every day. I just try to push trough and ignore it. I am type A and I was always on fight or flight as a child, probably much more than my siblings. I have a hard time taking it easy and I don't have the help you do. Mom hates it when I am down and has fits. Hubs just is not very observant and also well lazy so I spend much of my time limping along on my own. IT is my Sjogrens syndrome that really bothers me. Like being stabbed in the eyes. Don't we just have fun!

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    1. ((((((HUGS))))) my friend. I don't know how you do it without a good support system. Eye pain is horrible! I sometimes get that when I am really fatigued. Praying for you.

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  3. Wow. You explained what I and others go through so well. As only a person who deals with this can know what it's like. I have been in a bad flare for 3 weeks now and think I am seeing a light at the end of the tunnel now. This is my third one this year when I usually don't get more than two and they never seem to last more than a week. Stress plays a big part in mine. Of course yesterday and today I "had to" get the leaves raked and work on laundry. The floors need to be done but I took a half way good day yesterday and by afternoon could barely move. By evening my husband who is not used to me being so out of it wanted to know why I was moaning while sitting and watching TV. I couldn't even focus it was like my legs and shoulders and everything hurt so bad and I needed to move them but was too exhausted. Didn't even realize I was making the moaning noise. I have had days where even loose clothing is so painful. I'm sure you know what I'm talking about. So many weird symptoms. During the middle of a bad flare I feel like it's never going to end and I too get depressed and frustrated. Then over do it when it's over and have some more bad days. The guilt I feel (and it's all me because my husband never says a bad word about anything) is unbelievable at times. I hope you can take good care of yourself in the next few days and your body can heal from your flare ups. You are so lucky to be surrounded by caring friends and family. I have always been the one who never lets my health get in the way of what I need to get done even if I suffer. Guess it's time to let my family and friends in on what it's really like. Take care.

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    1. Oh Crystal, I am so sorry you were in such pain. I can completely relate to that. Some nights I just lay in bed and can't even lift my head with my legs and arms just aching with no relief in sight. Do you also get weird cramps or "stitches" in your side and back? Please do talk to your friends and family about what it is really like. Some will understand and be helpful while others, will not. This is when and where you learn who truly is there for you. Praying for you!

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    2. I think I have just tried for so long to be the strong woman that even my husband of 19 years didn't realize. Reality check - I can't do it all and during a flare I can't even stand to be around most people because I can't contribute or it just seems like so much chatter and I can't sort it out. I do get weird things like the muscles in the upper part of my legs cramp. I take potassium and get blood work checked regularly so it's not that but I can actually see the muscles contracting and it's so painful. Also restless legs that hurt and can't get comfortable. The one place that always hits hard during a flare is the shoulders right over the joint the skin is so tender it hurts to have clothes on it. That's my warning that it's about to get bad.
      Anyway I am glad you had the courage to educate others. I too get the frenzy after a flare. In fact I am holding back and trying to pace myself today since it's a half way good morning but all I see is what needs to be done! Take care.

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    3. Crystal, I can so relate to everything you wrote that you are going through also. I take Potassium and get my blood work done every 6 months to monitor my thyroid and everything else. I have to make sure that my vitamin D levels stay in the normal range because they have been critically low in the past. As for the clothing...oh my goodness. Yesterday I had to put a bra on to go down to the library and I kept telling myself that I could take it off as soon as I got back home. I went through 3 shirts until I found a very loose and soft cotton one that did not irritate my skin and put on the softest underwear and pants that I had also. Today I just stayed in soft jammies and have been cuddling up under a cozy throw. I have not done a thing but be kind and rest because I was not able to get to sleep until about 5:00 this morning (tossing and turning in pain and not even the pain and sleep meds helped) and was up by 7:30 with the fur babies. I pray that you were able to take things easier today also. (((((((HUGS))))) and healing prayers.

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  4. I am so sorry you have such pain. I have been reading about some who have cut out all grains and gluten and that their pain has really lessened.
    I wish I had an answer for you.
    God bless

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    1. Hi Cheryl and thank you. I did cut out grains and gluten for awhile and it did not make any difference. There are certain nuts though that I find make me feel ill. I also have to avoid fatty foods since they trigger my IBS big time. Be blessed my friend!

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  5. Totally over 100% been there, can relate, and totally get it. I am in the middle of a flare and crash at the moment. I can totally relate to the feeling to go crazy once I feel a little better and then crash again. A ugly cycle.

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    1. ((((((HUGS)))) Chrissy. I am so sorry that you are in the middle of a crash and flare. Please be kind to yourself and rest. Praying for you.

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  6. My friend,
    I am so very sorry for your pain.
    And for the anxiety as well.
    I know the anxiety cycle all too well.
    Prayers and hugs. : )

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    1. Thank you Billie Jo. My heart just goes out to you. (((((HUGS)))))

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  7. I have to say that your description has convinced me that I NEVER, EVER want to catch that!!! I have my own chronic issues to deal with, though. So, like the rest of you, I just go one day at a time.

    I do understand how easy it is to get down in the dumps. When you feel like you can't even eat anything without getting sick (the mind is a crazy thing, I obviously eat plenty-just not gluten--LOL), or that with diabetes your blood sugars are up because you were not diligent about food choices (Lots of getting mad at myself for that), and so on---it all makes a person feel bad. So, if I was laying in bed without being able to lift my arms without pain, or couldn't walk across the room----WOW!!! It would be super hard to stay upbeat! So, all of you with this condition--hang in there. It sounds like you have a lot of support, as I do. I'm glad for that.

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    1. Becky, I never ever want you to get this either. You my friend have enough going on with all you deal with already. I get what you are saying about being afraid to eat something without getting sick. When my IBS is flaring, I am terrified of eating something or anything for that matter that will just make it worse. I have trouble with my blood sugar levels dropping down really low but can also tell when I have had too much sugar...I feel sick and almost hungover. Yes, I am being monitored for diabetes because it runs in my family. I try to keep my blood sugar levels at a good and even level. I really am so glad that you have a good support system. It really makes a huge difference! Be blessed my friend!

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  8. Bless your heart! Those days must be so discouraging. But always remember that joy comes in the morning!! There will be more good days ahead. I love seeing the picture in your blog header pop up when I am waiting for your page to load. Those boys make me smile!

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    1. Awwww thank you. That picture of the boys makes me so happy too!

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  9. Oh Debbie, I believe you, when you say that it's hard to cope with that problem. We are praying for you and I'm sure that God will give yoy strenght and will help you.
    Be safe, be strong and receive a big HUUUUUUUUUUUGGGGG from this side of the ocean!
    :)

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    1. Thank you Paula. You are so sweet!

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  10. I can completely understand your need to get things done when you can, Debbie - I can't imagine having that, it must be awful some days. I know how desperately I try to do as much as I can in the mornings before work, and the same on weekends....sometimes I feel guilty when I sit down to read a chapter of a book, as there are so many things to do! That's why I always say I need a clone....so I can read all the books AND get everything done! :)

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    1. :) Your comment made me smile Debbie. I wish I had a clone too that could do all the housework. With my luck, my clone would have what I have too though and we would need matching soft recliners to veg out in. ;) I do hope that you take time for yourself to relax and recharge. A nice bubble bath, a glass of wine...not that sounds heavenly!

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  11. Very interesting article. Thank you for sharing your struggles and journey! I was diagnosed with Fibro about 3 years ago and then neuropathy this past year. Sometimes I wonder if they misdiagnosed me because my symptoms are not as bad as others I read about. I have burning joints, stiffness and achiness, brain fog at times, burning feet and legs, restless legs at times. I can end up in a lot of pain from overdoing it but my symptoms lessen when after I rest a while. I guess it is what it is. I am learning new ways to do life.

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    1. Did you know that there are over 200 symptoms associated with fibromyalgia? Here is a link to a list of some of them. https://www.facebook.com/notes/lynette-hazeltine-davis/200-fibro-symptoms/10152384886461019

      I did not have the intense pain that I do now when I first got this disease. In fact I did not know that all the symptoms I had for years were all part of this. I can see the progression of my disease when I look back at my life and what was going on at different times. Please do continue to rest when you can and not over do it (like I do...I am my own worst enemy at times). Isn't it funny how sometimes just resting for even half an hour can help us feel better some days and other days, it can take weeks to recover. I love how you put it "I'm learning new ways to do life". That is perfect and something that I am also learning. Be blessed!

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  12. Oh dear Debbie, as I read your post, I could just feel the difficulty you experience each day with this terrible debilitating disease! I have several friends with the same disease and it does make life just so very difficult, because you want to go and do things like anyone else, but the ugly cycle in your body doesn't allow that. I am so thankful you have such a good support system, and just by sharing your experiences here, I can see in your comments that you are blessings others by doing so. I pray for you dear friend, and hope this flare passes soon! With much love and hugs!

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    1. Thank you Marilyn. :) (((((HUGS)))) I long for and miss the "old me" if that makes any sense. I know that there are so many things that I can no longer do, trips I cannot take, hikes I cannot go on but I can still spend time with my loved ones, encourage friends going through rough times and celebrate the good times with them too. I won't lie, today has been a very non productive day, but you know, it's ok. I knew it would be and my hubby is amazing and told me that he is very glad that I listened to my body and rested. I pray for healing for you my friend too! Thank you for being there for me. :)

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  13. (((HUGS))) Debbie. I am so sorry you have to go through what you are experiencing, but I am glad you are taking it easy when you can. You do need to learn how to pace yourself and rethink what needs to be done and what can be left undone. I am learning to do that, myself, figuring out how to prioritize things and learning the difference between what needs to be done vs. what I would like to have done. Not always easy, but learning to compromise is a good thing. Hope today is a good day for you. Take care.

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    1. Thanks so much Bless. I am still taking it easy today. When I am not in one of my frenetic moments, I can just accept that whatever I can't get done today will be there for me tomorrow. In those frenetic moments however, all common sense goes right out the window because it becomes a compulsion to get things done "no matter what". I am learning that is also part of this disease and is fairly common among CFS and Fibro people.

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  14. I am so sorry that you have to deal with this terrible disease. I think it is so important that you listen to your body. I also think it's wonderful that you share your thoughts. Getting them out and receiving some encouraging feedback can go a long way in helping your emotional health. Thinking of you my friend and hoping for better days. :)

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    1. Thank you Kim. :) It does help to get them all out there in the open and I hope that by my sharing, it will help other people too. Be blessed!

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  15. Health challenges can really make things very tough sometimes, even more so when they are ongoing or lifelong. I think it's really good that you know your illness well and that, through sharing the reality of it, others can understand. I hope tomorrow is a better day for you. Meg Xxx

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    1. Thanks Meg. :) My hubby has a long weekend starting tomorrow so I am really being careful to rest up so we can do something fun this weekend. I hope you have a wonderful weekend my friend!

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Thank you for taking time to comment on my blog posts. I really appreciate it and being able to get to know you through your comments. I hope you have a wonderful day!