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Tuesday, March 27, 2012

Fibromyalgia Reality Check - Updates For My Friends

Hello my Dear Friends,

NOTE:  Long personal post, if you only have a moment, please read the bolded text at the bottom.  Thanks! ;)

You are probably wondering where I have been lately and I must say I feel like I've fallen down the rabbit hole. ;0)  Ok, well the reality of it is I have been weaning off my medications for the last month and a half and I'm doing well pain-wise (for the most part), but I have EXTREME exhaustion and along with that, some major depression.  I really don't know if it has anything to do with the meds or not. Literally, I was out of bed about 3 hours total for the entire past week, maybe up to ten days now?  I don't know, my days are blurring together with each other and each night.  I have been sleeping through the night (so unusual for me), but instead of feeling rested the next morning, within about an hour of waking up I am so tired that I have to go back to bed...and so on and so forth throughout the days.

I've been having some pain off and on and over the weekend, I walked to my craft room and my low back went out!!!  I finally had the energy to work on organization and my back goes out!  Ugh.  I'll give you a funny little piece of history here...about 10-12 years ago, I used to go to crop nights with my brother's GF (at the time) and I ended up having to buy one of those HUGE rolling totes...The biggest one they make. LOL  -- Anyways, one night after a crop, I lugged the big tote into the back of my Chevy Tracker (still have the same vehicle, btw & the same tote), and I ended up slipping a disc, pinching a nerve and permanently messed up my back!  How embarrassing, while wearing a back brace, to explain I threw my back out because of my scrapbooking tote!!!  I was around 20 or 21 (and this is before scrapbooking really was a big thing) so not exactly a "hip" reason to hurt my back.  So my point is, for years I've had trouble with it and actually just the past two years it has stopped being a pain (no pun intended), ;p until this weekend.  I am sooooo mad!!!  It's rare that I have energy, and the first time I have some in weeks, I end up throwing it out again just by WALKING into the scrapbooking room!  If anyone ever gives you grief about scrapbooking/card making being a girly thing, you tell them it's a dangerous sport and sometimes hazardous to your health! LOL ;)  So here I am, in bed again... I have 10 Easter cards to make and get out by Wednesday and I'm so hoping to get to them tonight, but I'm having a super duper killer headache.

Originally when I started this blog I honestly thought it would be more about Fibro and less about crafting, but as you all know, it has turned out quite differently than what I expected (and that's a good thing)!  But, I do want to pop in now and again and explain a bit about what I am going through on a daily basis because I feel this illness needs to be talked about.  Friends who are here just to see my craft posts, I'm perfectly fine with that too; however, I would love it if everyone would just take a little time out of their day to reflect and realize how blessed each of us is, all for different reasons, but bless-ed, nonetheless ;)

So I mentioned above what has been going on with me for the past ten days or so, but I haven't really gotten down to the real stuff.  Here goes...Depression associated with Fibromyalgia is almost inevitable and from the get-go I was put on anti-depressants, not only for "supposed" help with pain, but for the obvious reason as well.  What I'm dealing with right now, my close bloggy buddies are mostly aware of, but I want to share with everyone just what this illness does.  Someday, if you don't already, you are bound to know someone with this illness (not just me, online). ;)

For me, these are just a few of the changes that have occurred since developing what I call full-blown or full-on Fibro.  I have had symptoms since I was a child, but it always went away until about four years ago, maybe five now...I can't even remember, which is one of the lovely effects of Fibro, BTW.  Yes, I used to have a super sharp memory, now I can't remember what happened yesterday and I'm not joking here.  It's one of the many things that gives out in your body.  One of the biggest things (no pun intended) that I'm struggling with right now is my weight.  Hence the major depression.  My entire life I have been extremely thin by nature.  I have never weighed much more than 105 lbs., usually rounding out at about 95, which for me was normal and healthy.  I was never able to gain weight, in fact, I was relentlessly teased all throughout my school years and I hated it until I got older.  I had finally learned to accept my body and love it just how it was.  It only took me about 25 years or so. LOL  But I was...Happy, that is.  When I first developed "full-on" Fibro I went into a program for healing and unfortunately I was put on a restricted diet and dropped down to 85 lbs., which of course, was too small.

I couldn't gain weight to save my soul!  I could eat more than anybody I had ever known, including my big brothers who had voracious appetites.  I was this way all through high school as well.  In fact, I once won a free dinner from a restaurant on a bet from the waiter who didn't believe I could eat all the food I had ordered.  Well I did eat it all and then some! LOL  I was soooooo proud of that free dinner and so was my dad...but I digress... Anyways, I got kicked out of the program I was in b/c I was losing weight.  Then, just as suddenly as my weight came off,  it started piling on.  I remember the exact time it started...two Halloweens ago I went to a friend's party and she served these delicious tiny cream puff pastries.  OMG, I fell in LOVE!!! I had never liked sweets and hated chocolate my entire life, then suddenly I started craving it, and loving it, and needing it.  You can guess how it went from there... In less than one year, I gained 65 lbs.  I'm up another 5 - 7 lbs. as of now and I am miserable.  I can't STOP gaining weight!

Honest to God, I'd rather have the severe pain that I had before the weight gain instead of the weight gain.  I'd trade it in a minute.  I have never ever been so unhappy with myself in my life and I can't begin to figure out what is wrong and why I'm gaining weight constantly and never losing an ounce, even when I don't eat.  :(  I went from a size 00 to 12/13 currently and still stretching.  Most of the weight is in my belly and in fact, several months ago (when I weighed about 15 lbs less than I do now), I got asked when my baby was due!!!  I was mortified although I can't blame the lady who asked me b/c my belly is huge and yet another lovely problem with either the drugs or the Fibro (not sure which), is I sweat CONSTANTLY, and profusely!  I'm sure she thought it was my hormones from being "pregnant". :p  OMG, seriously, how embarrassing!

My appetite has slowed wayyyyyy down, but so has my metabolism.  Ok, this is a little personal, but I had a SUPER fast metabolism and was very regular -- like three times a day regular.  Now, I am lucky if I go once every three days and when I do, every single time, it is sooooo painful that I dread going!  I rip and bleed and tear and cry every single time I go to the bathroom now!  I am on softeners and laxatives every single day and I'm still having severe issues; however, doctors have been NO help in this arena.  They can't figure out why I'm gaining the weight and why my system is acting the way it is.  So I have made a decision...The one thing that's changed more than anything are the amount of heavy duty narcotics (prescribed of course) that I take just to bear the pain associated with Fibro.  So without any better ideas, I have decided to get off of all of my medications -- detox.  Yes, it would be treated like a drug addict's detox, except for the fact that I decided to do a very slow wean, controlled by my pain management specialist, so I wouldn't have to go in to a clinic and be put on Saboxone (another form of methadone) to help me with withdrawals.

As far as the horrible, embarrassing, disgusting, uncomfortable sweating goes, here's what happens...I get up.  Within one to three minutes of getting up, no matter what the temperature is or what I do, I start sweating...and I don't stop, until I am lying in bed fairly still.  I get in the shower and within one minute after showering, I am dripping and not from the water.  My face drips, my hair gets soaked, my clothes get soaked so by the time I'm dressed, I feel exhausted and utterly disgusting.  I also get the horrible night sweats at least 2 or 3 times a week and I wake up, drenched, and usually freezing cold.  And yes, this adds to my depression incredibly.  I am a lover of clothes, fashion, makeup, all things girly and since the weight gain and the sweating I can't even wear clothes b/c it's not worth it to get dressed if I don't have to go to the doctor's that my hubby says I should change the name of my blog to "The Naked Crafter". LOL! :0) It's so bad that it's honestly laughable sometimes!

So friends, this is what I've been up to lately.  I spend my days in bed, trying not to sweat, refusing to go anywhere b/c of the exhaustion & sweating that happens after getting dressed.  Oh yeah, did I mention how tired Fibro makes you?  It's so weird!  Some days I can't sleep but for 2 or 3 hours and then some days I can't wake up for more than 2 hours at a time, sometimes sleeping up to 18 hours a day!!!  It's so random, I can never make plans b/c I honestly have no clue how I'll be feeling at that particular moment.  How I feel physically changes literally at least every five minutes.  I haven't seen friends in months.  I have gotten out of the house (other than for doctor's) probably a total of 5 times in 6 months or so.  I haven't been able to craft for weeks and that is another thing that really depresses me.  I miss it soooo much!  When I'm gone for more than a day or two I feel so left out and like I'm missing out on so much in bloggy land.  I LOVE blog hops and challenges and everything, but when I feel like I do, it's all I can do to just keep my head on straight.

My poor hubby has to deal with so much.  As I've mentioned, my best friends in the world have ceased to be what best friends should be, so much of the burden goes to my hubby.  He's the one who has to listen when I'm in pain, when I'm mad at being fat, when I'm sick of sweating, when my friends don't call anymore.  It's hard and he's a trooper.

I want you all to know that the first few years of this I was very positive and optimistic, but anyone who develops this level of health issues is bound to lose some of their positivity.  And that's what's going on right now for me.  Now don't get me wrong...I thank God every day for the wonderful blessings in my life and for making my pain less severe than it was, but the one thing (ok several things) I really want people to know about a person who suffers from Fibro is telling that person things like "well, it could be worse" or "at least - blah, blah, blah" or "if it makes you feel better, I've gained five pounds too" :p does NOT help.  Sometimes, we need friends who will just go along with the bitching and say "OMG, this sucks" or "I'd be pissed off too"!  Is that so much to ask?  Of course we know things won't always be this way, or things will get better, but sometimes, dang it, why can't we just be real about our feelings???  Now normally I would start to apologize here and say to my readers, yes I really do have a good life in spite of the illness, but you know what?  This time, I'm not going to say that because that is, honest to God, not how I feel right now and pretending it is, is getting old.  I need friends who are going to let me be me and I need to be able to be myself, especially here on my blog.

Now the ONE positive thing I will say right now is that I do have some amazing friends here and I never forget that.  I thank you all for being there for me and listening to me and still loving me.  That is what keeps me going!  That is what true friendship is about, to me anyways.  For those of you reading this ridiculously long post, I thank you from the bottom of my heart.  Please do leave me a comment.  I love to hear from my readers and I will be back in to tell you all some super fun news and post some more creations! ;)

With much appreciation and gratitude,
Amy Jo


Linda said...

My dear sweet friend

I am really choked and tears are streaming down my face after reading this poignant post. If I could take the pain away from you I would. Thank you for putting me in the picture of just how you struggle with this disease and you have every right to bitch about what is happening to you on a daily basis. I too have a husband who is my rock and I am so happy that your hubby is just so supportive of you.

I wish you well my dear friend with the detox and I am here for you if not in person in spirit and will say a prayer for you.

Sending you lots of BIG HUGS
Linda xxx

Kathy B said...

I too struggle with fibro every day and have been where you are. Fibro is so hard because outwardly we look so "normal" but inwardly we are such a mess. The fatigue is beyond overwhelming on top of the pain. It is a bitch to live with since each day can be so different from the last. I wish I could give you a hug (no back patting of course :-p) and have a cup of coffee with you just to listen and have someone to talk to that completely understands. I will be saying a prayer for you. I commend you for being so open and honest about what you are going through. Thank you.

Kathy (

rlovew said...

I am sorry you struggle with this disease and I thank you for sharing the real truths of it as I don't have any real first hand knowledge of it myself. I will keep you on my prayer list that the pain and other effects will lessen for you.

Michelle Bowley said...


Cathy said...

YOU ARE JUSTIFIED TO FEEL THE WAY YOU DO. Sometimes venting is a way of healing too. Take the good days and run with them, and the bad days , though they be man y, rest and recoupe.

Judy said...

Hello, Sweetie, I read every single word and my heart aches for you :-( I wish the very best with the detox and I do hope that is maybe the reason for the weight gain ... I did that with a negative reaction to Lipitor and I am much better now that it is gone. You may be less tired when the narcotics are out of your system if you can find a way to manage your pain. I have had to go through a detox with a family member who had an addiction. Before the detox, he slept all the time, and now, 11 years clean, he is full of energy. I am so sorry that you are so hot ... there is not much you can do to get cool ( I am 61 with hot flashes, I know!) I just thought of something!! I have low thyroid and a whole lot of your symptoms sound like that!! If I were you, I would run to an endocrinologist to have good tests done! Hypothyroidism causes constipation, depression, weight gain, sweats. It might not be that at all, but it is only a blood test to find out. I follow regularly, so I will stay in touch ;-) Hugs, Judy

Rhonda Emery said...

oh I am so sad that you have to be in pain. I also deal with all you have mentioned and on top of that I have type one diabetics. I try to keep positive and tell myself someone other than you has it worst, and this makes me thankful for what god has given me. I wish your pain would go away or tolerable so you can get back to what you love. hand in there friend, you can do it. hugs and love sent your way.

Suzanne said...

Amy I thank you so much for your honest writing of what you have been going through. Through FCCB I have gotten to know and love you. I truly want to know how you are and be able to lift your needs up in prayer. It's good to appreciate the blessings we all have but also it is good to let others know when we are going through rough times. Wrapping you in big hugs and prayers. I care about you!

kim.scrapper said...

It is great that you have a place that you can "vent" and let others know some of the side effects of this disease. It sounds like you are going through a really bad time right now and everything is happening all at once. I hope you have a good support team to talk to and not just hubby, I wanted to mention if you have had your thyroid checked out because that also causes a lot of the symptoms your mention, weight gain/loss, irritable, memory loss, hot/cold. Check it out if you haven't. I hope things start to get a little brighter for you, Hugz

Pat N. said...

Hi Amy, I can't begin to say anything that will take away what you're experiencing. But I'd just like to say that I'm a friend in Bloggy Land and I read your post--the whole thing--and I think you should feel free to vent anytime you want.--Pat N.

Debbie said...

Amy Jo, I am so sorry to hear about your fibro flair and depression. I pray you will be able to get back to crafting soon. I too have been unable to focus and get anything done because of the exhaustion and depression but thank God every day that I am able to get around. I will remember you in my prayers today and every day as long as you need it. You're right it does suck that you are having these problems and I would be pissed off too if I were in your shoes right now.
Don't be concerned about the long post , we all have to vent some times and this is a good place to do it. When I signed up for your blog it was with the intent to share our fibro issues and how we over come them day by day. The cards and crafts have been an extra.
I pray you will be able to get back to your crafting soon and that your symptoms will be lessened so you can function.
God bless and keep you. Hugs and prayers, Debbie.

Naomi Edwards said...

Amy I can hardly see what I am typing for the tears are streaming down my face, I think it is so awesome that you put all that into words which I know is only giving a glimsp of what is going on. It really shocked me that just about everything you mentioned I am going through the very same which is why I truely understand and relate, the weight gain, sweats, bowel issues, bleeding crying.. I might have added cursing...
I know you are a postive person for you are alwasy trying , look at what you do! You are right when you say it is hard to be postitive when going through so much.. if anyone was right in the middle of experiencing what you do I am sure they are not going to be sweet and kind... My friend Troy that lives with me can just look at me and know.. I am not one to pretend I am good to spare anyone's positive moment, I am what I am , you are soooo fortunate to have such a lovely husband that is so supportive... you need to be understood and I commend you highly for letting the world know what Fibro is and how it effects your body... Very well said girl..I wish you were near so I could hug you.
Always love Naomi

Vicki said...

It does suck and I really wish there was something I could do to help.

scrappingfrog said...

I will pray for you....thanks for sharing your story. I am short for words since I don't know how it feels but have a friend in her 20's with the same thing and I feel for you both. I will keep comming back to visit your awesome blog.
BIG HUG to you!

Kim said...

I understand completely. I've had fibro for more then 15 years and every year it seems to get worse. The pain I can deal with most days but the exhaustion is another story! Kudos to you for having the courage to really express how you feel. Please know that there are people who understand and feel the same way as you do!

Valerie said...

I have had fibro for a dozen or so years and recently had CFS added to it. My doctor told me to apply for disability but that didn't look like it would provide enough to live on even if I could get it. So, I am working but not much else since I use all my off time to recover enough to go back to work. I, too, can deal with the pain, but I have every other symptom commanly listed and then some. I am always pleased when I see someone who is working to educate the public about fibro. I do my bit, but I am so sad when I have people tell me that they have fibro but won't even let coworkers or bosses know for fear of losing their jobs. Hang in there and know that there are many of us that understand completely.

Sherrie K. said...

Please know I will say prayers and hope that you are pain free one day. I do not know a lot about fibro but it sounds horrible and I feel really bad that you are going through this AmyJo. Stay strong...hugs your way my friend!
Sherrie K

Pendra said...

I know exactly what you are talking about... I too suffer from Fibro and even my family who love me, don't understand! We can help hold each other up and it's so nice to have someone to talk to who understands! Thanks for your site and putting the info out there!
Crafty Hugs,
p.s. You Won, head on over to:

abusybee - DoubleClick Connections said...

Amy, your situation does stink! I am thinking about you and praying for you to be healed. Hugs from across the miles to you!

Expressions By Elaine said...

Feel free to vent and do not apologize for it!
I went through 5 years of serious weight gain & few years of depression and some of the other things you are going through, it sucks majorly! I finally was diagnosed with celiac/gluten intolerance & hypothyroidism.
Maybe a gluten free diet could help with some of your symptoms, I sure feel a lot better.

I feel so bad for you and truly hope things get better for you!

DIANA L. said...

Thanks for the enlightenment on this horrible condition. I will keep you in my prayers for healing, release of pain and for the Dr.s wisdom to know how to help you. . HUGS, DIANA L.

Beckie said...

We ALL have issues. I applaud you for being brave enough to let us know!!! What you are going through sucks to the max!!! You have every right to be mad, sad and scream. Your husband is a great man. God has given you to one another. You get on here or email and you scream at the world!! We'll still love ya and listen ;0D

Super big hugs@!!!!!!!

Be blessed, Beckie

Lisa said...

Amy - you are in my thoughts and prayers, my friend. I know someone with Fibro and I never realized the extent of her daily struggles. Thank you for being brave enough to share this with us. I will pray that the detox works, that the pain lessens, and that God gives you the strength and courage to continue to fight this horrible illness. Big hugs!!

A Mermaid's Crafts

missstamper said...

You are in my thoughts and prayers. I have several friends and a sister who suffer from fibro. Hugs to you.

jennyplace2 said...

Oh my goodness my friend! I do wish you the best with your detox, this is really when you do need your friends. Sounds like you have a super great hubby who has been there for you no matter what. Life can be a real bitch at times and I always say why me????? I guess we all suffer in one way or another, but like I said before...if I could I would be there in a heartbeat to try and help lift your spirits, but since we are thousands if miles apart I will send you a cyber hug and hope that things will get better even if it is only for a day a two at a time.

Barbara B said...

You are so right, it does suck! I have Lupus, Severe Asthma, Life threatening Food Allergies and Severe Environmental Allergies. And recently I was diagnosed with Fibro. I wanted to scream and just say "take it back, I can't handle the other ones, how am I going to handle another health problem?" I have lost my close friends as they just don't understand why I am always sick and don't feel well enough to go out scrapbooking or to the movies and they got tired of me always being sick as they put it. But hubbies see the struggles we face and so they know how hard we struggle to do the little things. I think it is great that you vented and please know I am always here to listen anytime you want to vent! You are in my prayers, my friend. Thanks for sharing the real side of Fibro and the real struggle of a chronic disease. BIG HUG my friend!

Jessica said...

Amy Jo,

First, I'm really glad I read your whole entry. I don't know anyone with fibro, so your being candid helped me understand a little more of what you go through day to day. And -- OH GOSH -- does it sound like it sucks. I'm so sorry you are going through a bad time while detoxing. Please hang in there and know that your crafting buds are rooting for you to kick these meds in the arse! :)


SherriB said...

OMG! It sounds like you are describing me to a "T". And yes, it does suck! It's like, what did we do to deserve this kind of a life? I love reading your posts and sharing how the fibro makes you feel because I am going to have my kids (who are all 3 adults) and my husband read this post so they can see that this is real and I can't help it if I'm tired and just cannot get up some days. I really feel for you and hope you get better and thanks for sharing so much!!

Merilee Lane said...

Dear Amy Jo,

Thank you for sharing your struggles. It is so important that people are educated concerning this horrible disease. I have found that if people cannot see a broken arm or cut or scratch, then they automatically think nothing is really wrong. That is so untrue. You have the courage to educate the world! You go girl!!

Don't lose hope. I have been where you are and I did the exact same thing! In fact, I fired all of my doctors and started all over again. I now take a proactive approach to my healthcare. I do not accept the advice of my doctor as infallible. I research every medication I take and I decide what is best for my body.

I have found that a good counselor, as well as aqua therapy, helps a GREAT deal. The only place I am virtually pain free is in warm water. I sought out a counselor and told her that my goal was to learn tools to deal with my illness on a daily basis. It has helped me tremendously. And my last recommendation is writing, which you are already doing. Write about it all the time. Write with a pen or pencil, too--it's a whole different method of decompressing.

I lost so many friends due to this illness. It is very difficult for people to understand. Even I don't always understand it! But I have learned to live each day, one at a time. I am no longer so hard on myself--not about my weight, my long term goals, or my short term goals. I no longer punish myself when I cannot meet a deadline.

You can do this! You may have fibromyalgia, but you can still call the shots in your life. Yes, you do have to do things differently, but that doesn't mean you cannot live the life you want to live.

I am here for you and I am reading your posts. You are not alone. There are many of us out here and we can all band together to help one another.

All my love to you,

CraftyJAR said...

I am sorry that you are going through this horrible disease and I would like to thank you for informing us about your situation. Your post will be very helpful in telling people exactly what you need and we can all learn what can help others around us. I know we can say really insensitive things because we think we are trying to be sympathetic. I read everything in your post and you are right it does suck and I would be pissed off too! I hope you will have more good days than bad. I'll keep you in my thoughts.

Melissa said...

Amy Jo,
I got all teary eyed reading your post! I can some what relate to some of the thngs your are going through! A couple of years ago I found out that I have a medical condition that I had to have brain surgery to resolve the issue & when I read your comment about your friends...tears came to my eyes as I know EXACTLY what you mean!! It is sad that you have to go through something serious to find out who your true friends are! When I read your comment about the response you want to hear "OMG, this sucks" or "I'd be pissed off too"!....I get it!! I was the same way! I didn't want anyone to feel bad for me...just to feel bad with me, by being there, holding my hand or just listening...there is a huge difference and it makes a HUGE impact!! If there is anyhing you need...please let me know!!

Kate said...

My heart ACHES for you, Amy Jo. I had no idea that things were this bad. I knew that you were struggling as you weaned from your meds, but not to this extent.
I know you mentioned that you are seeing a doctor, but you need help. Make sure you tell your doctor everything you've told us - and then some. You won't get the help you need if you don't completely open up. Depression is a serious condition - perhaps even more so than your fibro in some respects. You are far too special and far too lovely of a soul to be so down on yourself. I know you're a smart cookie and have likely done all your research, but when you are in the thick of things, you might not see and rationalize clearly.
I'll be thinking of you and praying for you, as I have been doing. And please get that amazing man of yours to give you a big hug from me.
With love
Kate xox

Staying Crafty said...

Oh yuck! This sounds just wretched. I can handle a short term sweat from a workout, but I HATE it when I sweat from stress or hormones and I can't even imagine having it go on day after day. I also know how I felt gaining so much weight having kids, and it was a HORRIBLE feeling to feel like a totally different person because my body changed so much, so fast. I hope you can hang in there and keep finding solutions that work for you and things that help. I'm so sorry about your friends :( I have lost friends at the worst possible times in life that I thought would never do that, and it just plain hurts. Certainly things I've gone through aren't comparable by any means, but I can relate in a small way to some of the things you've talked about. I hope someday we'll be able to meet up and scrapbook again. I know that right now you're not feeling well enough to commit to something like that, but when you're ready get ahold of me and we'll work something out. Maybe we can pack light and both just bring some pre-stamped images and our Copics and we can sit and color. Then you can still be productive but not have the hassle of bringing so many things. If you want I can come up to your house sometime with a few supplies and we could hang out and scrap there instead.

Sleeping Beauty said...

I appreciate how honest you are. It's hard articulate to others on a bad day how hellish fibro actually is. To convey that we feel blessed and in turmoil at the same time and that it is very possible for those 2 elements to occur at the same time. So delighted to have stumbled upon your blog. :)

saturated canary said...

Hello Amy Jo,

I had no idea about the different side effects of having this illness... What a burden you must bear, sweetie. I am glad you have a crafting hobby and that it gives you happiness and hopefully some relaxation! I will keep you in my prayers tonight-- take hope in the Lord, my friend. His strength can pull you through the days that seem especially hard.

I hope your Easter is blessed...


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