Update on New Symptoms

Well the back problem hasn't gotten any better. I finally went to a clinic here who took me serious. In fact they very dramatic about my symptoms being serious. They sent me for a immediate MRI and gave me an appointment to a neurosurgeon. Said I may need surgery to fix a trapped nerve. I don't know the MRI results and won't know till I see the specialist and we all know how long it takes to get in to one of them. So I have over 2 weeks to wait this pain out. My pain is much better sitting at an incline or laying down. Sitting up watching tv or using computer hurts after a short while. Lately sleeping is not easy even while laying down my bottom gets to hurting. Nothing I can't handle. But we all hate to see new symptoms appear and with me they
are always "chronic"! So I've been really taking it easy. No lifting, pulling, tugging, toting, carrying, bending, reaching, or basically anything! Let's just say I am so blessed to have a husband who is supportive and understanding. Yes it gets to him at times and I can't blame him. But I am so thankful for him. So as I've been laying around I've had many topic ideas to pop in my head and as I can sit up and write I will posting quite a few short topics! Stay Tuned!

Good News Bad News

I am reading a book right now and one story in the book from another woman with Fibro was her sharing her story and how she was learning to live well.So after several doctor visits for a year or so she finally got the diagnosis of Fibro ( and we certainly know how that is a nightmare). But her doctor said " The good news is it's not terminal, you won't die from it but the bad news is you will feel like crap the rest of your life"!!!!! Isn't that the truth! So I thought of a few other funny or inspiring good and bad news to add to that.


1. Good news is Fibro won't kill you but the bad news is you will feel like crap the rest of your life.


Now let's reverse this so we are left with the "good" news part of this new life with Fibro.


1. Bad news is you have Fibro and you will feel like crap the rest of your life. Good news is that it's not terminal!


Doesn't that sound great!


2. Bad news is Fibro probably will take your ability to go out shopping away. Good news is you will save money!


Be positive now, because I know you were thinking of something negative to say about the medical expenses......stay positive!


3. Bad news is with Fibro I cannot go up steps or step up on a curb anymore without assistance. Good news is I have a reason to hold hands with hubby in public!


4. Bad news is Fibro can drives your "friends" away. Good news is you will learn who your true friends are.


5. Bad news is the Fibro gives you deep aching muscle pain. Good news is it can lead to a spouse massage or even a professional massage!


6. Bad news is Fibro won't allow you to participate in all those extra activities you never could say NO too. Good news is you have valid reason why you can't now!


7. Bad news is Fibro doesn't allow you to be near as active as you once were. Good news is you will have time now to "Be still and know God"!!!


8. Bad news is Fibro may end some of your current hobbies or interests. Good news is you will seek others that may actually be more thrilling!


9. Bad news is Fibro makes housework impossible! Good news is if you having loving spouse you won't ever have to worry with it anymore!

Work Your Plan

I moved to this city 4 months ago and have been in a fog ever since. Alright I've been a fog since Fibro diagnosis but since the move I've really been in another world. The stress literally knocked me off my feet. I had been working up until the Christmas time. I supposed I was one of the blessed ones who could still work since fibromyalgia. With each year I lost more and more mobility and the stress and pain built up so badly that I really thought I was just going to die. But I had to keep my job because hubby had lost his job and we couldn't find another job in our area. Thankfully he did find one but it was 70 miles in another city and so we began to plan to move. FINALLY I could quit my job. I really though that I would feel so much better right from the start of not having to go to a job, but guess what? That hasn't happened 4 months later. You've heard of broken or burn out? I supposed I'm a combination of both. So as day by day has went by and hubby has worked longed hours, I've lots of alone time and thinking time. Oh and I had a long list, (very long list) of all the wonderful hobbies and crafts and organizing I was going to do! But even hobbies require energy. Even reading requires energy. Have you every felt so weak or tired or your hands hurt so bad that you couldn't hold up the book or Kindle?? If you have Fibro then you probably can relate. And then the computer......it too requires energy to type or use you arms, shoulders, neck, and hands. It is so sad that some days those of us with Fibro can't even play on the computer. Let alone focus on some of the computer activities we do! So all my hobbies and crafts I was going to start on have been put to the side. Then I became down and depressed about it all. Stupid Fibro! Then I feel bitter again and a vicious cycle of grief, anger, and resentment appear along with feeling sorry for myself. No life! Well to top it all off it hasn't helped me any either that I haven't been to church in a long time. I've used the Fibro as excuse. I mean do I really want to meet new people in a new place when I look and walk like death? So I was spiraling downward and I knew I had to do something. With all my free time I had time to think. Somedays are easier than others. I mean my thoughts just drift off or disappear at times. I rigged my laptop up on the arm of the couch where I didn't have to reach and I pulled up reading material and articles. AND my dear old Dad's voice popped in my head...(Daddy's been gone 7 years now) and his words were "Plan your work and then work your plan Karen".


Daddy was a salesman of sorts and he knew how to grow his business and when I started selling Tupperware for a few years he helped me some with that by showing me how he made his plans then worked them. Now I'm sure he read that in Dale Carnegie or something similar, but the point is I remembered it and it was what I needed to hear! Along with some of the articles and stories I had read about others with Fibro and how they were living well inspired me to work up a plan of action and then put it in use as to help myself have better quality of life. Even if I can't do most "normal" things anymore I can certainly feel better about myself and my illness and even maybe do some of the things I had longed to do after I quit working.


So I'm sharing my list here and if you are a reader of this blog, then please hold me to it! I do have a few friends and my family that support me. My hubby is wonderful. He grows weary of me here and there and I don't blame him at all but for the most part I am one of few who have an amazing supportive hubby. I may even add to my list from time to time or take away but as of right now I think the following will help me some physically and mentally where I can get to the place of peace with Fibro and the new life that I feel is going to be with quite a long time. So I might as well settle in and snuggle up with this Fibro, right?

• 1. find a team of doctors here that I like and trust...a regular PCP, a Pain Specialist and maybe even Neurologist....and start going back to Chiropractor. I've read other's stories that use a team who all work together and there are Pain Specialist here that I've read great reviews about from those with Fibro. And the Chiropractor here uses Acupuncture and I would like to try and see if that and Massage will help any.And with the current lower back problem I am having now, that I feel is a pinched nerve, I thought maybe one or all of the above could help me there.
• 2. Get back on my Cpap machine. A new study and my doctor working with me there especially on the night time medications until we can find one that works. Sleep is so important and I haven't been sleeping well at all.

• Back on my supplements. Either through Prohealth which has 2 particular mixed supplements for Fibro or individually. But I know need Magnesium, and back on B12 shots, and Omega 3.
• My bath soaks. I had already tried these for helping me sleep but sometimes I do not take time to soak in hot bath. I mean we all know what a work out either a bath or shower is, so the quicker I shower and get out the quicker I can lay down. But I want to try the hot baths for pain. My muscles are screaming in pain and stiffness. 

• 
  
• Daily meditation and prayer. I've gotten so far off track. No motivation, no desire to do anything. I know God hasn't left me though and getting in the habit again is hard, but I'm doing it one step at a time, little by little. This is one of the most important steps to recovery and living well.

• Setting my alarm (again) for mornings and getting  up whether I have slept or not. To establish that routine again, instead of lingering and laying in bed from lack of sleep.
• Working on at least one of my projects throughout the week, if not more, but steadily crossing off those projects on my list. Getting my mind off this illness and pain.
• Stretching daily. I am not moving as much as when I worked and so my muscles are more stiff than ever. If I could find some senior (lol) yoga classes I would like to try and go. Checking into the YMCA here and water therapy or aerobics. 
• Beginning to walk again....starting small.....taking Lilly (my dog) to the mailbox and back and build up to walking down the street. This will be major for me because I have tremendous leg pain and horrible arthritic knees. My legs usually freeze up after walking a short distance and my knees lock up and I simply can't go anywhere. So this may prove to be interesting but I'm going to try. Getting outside and doing this will be good for me mentally too.
• Diet....not starving...but eating healthier food. I've been eating junk and sugar and sugar makes my body hurt worse. It's a quick hunger fix and a lazy way of eating. When I low carb I feel fetter physically and have some energy. I have got to get back in that habit.
• CHURCH.....get in there and stay in there. I need my church family. Fibro is a lonely illness, isn't it? It wouldn't be if everyone was as understanding and compassionate as we with Fibro are to one another. Sadly sometimes there are even church people that are not caring toward others with Chronic pain but that's another subject for another time. I need God and want to worship him!

So that' my plan. I planned my work of living a better life with Fibro and now I'm going to work this plan! 

LAZY Weight Loss

I have dropped a whole size in clothing! Wonderful right? Cause I certainly haven't been exercising or counting calories. I'm calling the LAZY Weight Loss plan. I've been so tired and sick and tired and in pain that I'm finding it hard to move at all so I just sit here when hubby is gone to work. 

There is nobody here to fix food or bring me food, so I've been skipping or just grabbing a bite of something. Now I KNOW that isn't good for you and I certainly do not condone starving yourself or missing meals BUT I've been sooooo starving! Pathetic! I go on to bed and and hear my tummy just a grumbling and growling cause I'm soooo hungry! With hubby's schedule when he off, I will eat (cause he cooks) but I just can't stand up to cook so I just grab a snack. So I've dropped some weight and that's good. I could stand to loose a whole bunch more. Maybe there really are some blessings since Fibromyalgia!!

Newest Symptoms

Those of us who suffer with Fibro know that sometimes symptoms disappear for a while and sometimes new symptoms appear. It usually leaves me with questions or doubt as to if the new symptoms are indeed Fibro or manifestation of a new illness. I guess I'm a bit paranoid at times that something else dreadful and chronic and incurable will develop. Anyway seems like over the course of this past "decade" with Fibro, new symptoms arrive each year or so. I've always had spells with some back pain and back spasms being the worst since my diagnosis, but a couple years ago I was blessed with the "lower" back pain so many of us over 40 may develop that is diagnosed as degenerative arthritis or osteoarthritis. It gave me grief for several months then left I suppose to bother someone else. But it came back a couple of months ago. I began noticing that I couldn't pick my granddaughter straight up. Or bend over to pick something up and stand straight up without a slight catch in my back. Which progressed to nerve like pain when I would try to straighten back up, and finally it was like someone turned my bladder on when I completely straightened up! Yep, that's right, loss of bladder control. So Kirsty Alley's POISE pads have become my friend. It's hard enough to stand up from a seated position without grunting and groaning and it taking  ten minutes to finally straighten up and walk, but now coping with the nerve pain and the possibility that I will wet my pants as well, really leaves me scared to leave the house! It could very well be a pinched nerve and not related to the Fibro at all. I've tried to rest my back and take it easy. Seems sitting very long makes it worse, but I can't stand too long either. I finally broke down and called a couple of doctors offices today to see about getting in to a medical clinic or a chiropractor and the medical offices couldn't see me till end of May. I realize I'm new to the area and all but what do you do when a real emergency arrives? So I suppose I'll try the chiropractors office next.

Insomnia is another new symptom to me. I've always had some problem falling asleep and staying that way but not to this extreme. I've spent days and nights without hardly any and it was taking a toil. I guess I've become immune to most of the medications I had been taking. Flexeril and Ambien did nothing for me. Trazadone did nothing. I tried Tylenol PM, and then a supplement called Alteril seemed to help me more than anything. But it is not steady. I still battle falling asleep even though I'm sleepy. It is 1:20 a.m. now as I am updating the blog!

Loosing more hair than usual and more dry itchy skin than usual. Again these symptoms have been with me off and on but along with the above new symptoms these came and came back with a vengeance. My face is dry and itchy and flaking everywhere. It is more annoying than anything else. I suppose I would take this symptom over any other.


And last is the joint swelling in my wrist and more intense pain in my fingers. I've never had joint swelling but have developed a knot on the side of my wrist that is painful and my fingers ache constantly.


I guess the longer I have Fibro, the older I am getting too and the body begins to have aches and pains and changes. It doesn't really matter to me to have proof if it is Fibro or not. Just another day since the Fibromyalgia!

My Mind is Set & My Body is Not

I don't usually get out much at all for a few different reasons. The main reason being I am just not physically able. It's embarrassing to me and I feel like to my husband when it takes me so long to get up from a chair or the car or to walk. I grunt and groan a lot when I sit down or get up from chair too! I try hard not to in public but sometimes it just comes out cause it hurts!


But another reason I don't like going out much is because it reminds me or confirms just how immobile I actually have become and it makes me sad. Especially when your mind is SET, it's positive and smiling and ready to take on anything! So you think maybe, just maybe, this trip will be different! Thus my experience last week. Hubby wanted to get out for day. Since we've moved we like to ride around and see where everything is and find our way around the city. I needed some more capri pants and thought I needed to try to make way into Dress Barn or Cato's and my mind was raring to go last Friday morning.


Our first stop was to eat of course which wasn't bad at all. The next stop was hubby's favorite shoe store. Always love finding parking spot right by front door as we all know the walk across the parking lot spends all our energy and doesn't save any for the shopping experience. The ladies shoes were right inside the front door so I looked over the first three aisles as my hubby goes across store to look for shoes. Here I am looking at all the pretty bling on the sandals and flip flops and thinking how nice to wear something pretty and new and then the usual symptoms begin to appear. You know, the weakness, the lightheaded feeling, sweating, aching legs, and the body is screaming "SIT DOWN"! I look across store to catch my hubby's face so I could notion to  him I was ready and wouldn't you know he wouldn't look my way. So I went across store and he was still looking so he found me a chair. Now as I walk back to the truck in the parking lot my legs begin to stiffen up so much it's hard to bend them at all. My lower back is aching and it's very hard to get up into the truck without  the severe pain in my lower back. Then my mind begins to battle with my body. The positive sunny outlook my mind had when I left home is suddenly become negative and dark. Knowing I had not made it to Dress Barn yet I am getting discouraged because I didn't want to go back home without new capri pants. So I'm thinking a drink from the Sonic and sitting a little while longer will help me rest up for the Dress Barn. As we sit at Sonic I tell hubby how these trips start off pleasant but then not only is my body in pain but emotionally I begin beating myself up. I realize how decrepit I actually have become. This is the reason I stay at home! Why do I think the next time will be different! I set myself up for failure. All these new places to shop and I can't just get out in one or two stores and look for ten minutes! But I calm down and we set off to find the Dress Barn and we do and are fortunate to pull up right to the front door.


Of course there are not chairs, no wheelchairs and lots of clothes. I browse about ten minutes and that is all I can take. I don't know about your fibromyalgia but with mine if I walk or stand for more than 10 minutes my legs feel like they are locking up. My knees ache and won't bend and my legs suddenly feel a hundred pounds each. I can't pick them up to walk or bend. I'm shuffling now slowly to get back outside and walking so slow. I feel as if I'm going to pass out before I sit down and find no capri pants! I knew I had to go to Best Buy to turn in my new cell phone that I dropped in a glass of diet Dr. Pepper in the middle of night. I had already put that trip off for two weeks.


Another front door parking space and the Geek Squad is right inside the front door so my mind is smiling again and loving all the easy access to my errands. There is a line BUT there are chairs to stand in and wait. The waiting in lines to check out brings a lot of my symptoms on too. So the line is gone and I'm up next and wouldn't you know it took about fifteen minutes to handle my claim. I leaned on the counter but it still didn't help my legs. So I'm grumbling now and find it not very easy to walk out of the store with a smile on my face because I'm in horrible pain. I'm ready to cry now. I'm discouraged and just not accepting that this FM has changed my life so much. When did a simple trip to town with three small stops turn into such a nightmare? I cannot remember the last time running to town or spending a day out caused so much stress on my emotionally and physically!


We pass by a nail salon and I've never had a pedicure in my life and now that I'm feeling sorry for myself and I'm thinking I need to treat myself to make me feel better! (It can happen!) Plus the chairs in those salons massage you and so I'm actually helping myself, right? All this pain and I didn't find capri pants so I deserve something! There wasn't hardly a wait at all and then off the massage chair and someone pampering my feet. About 35 minutes later I'm refreshing again and loving life and mind is perky again so why not just go by Cato's for a quick peek?


The walk into Cato's was hard. I literally was exhausted. But I was determined to finish this trip. My hubby is so wonderful about helping me find clothes or something I need. He is there in case I feel like I'm going to pass out. The hardest part of this store was I did have to stand quite a while before checking out. I did find the perfect Easter blouse and jacket but no pants. As hubby asked me if I was ready to go home, it didn't take me any time to quickly reply yes!


Someone asked me before we moved how I was going to afford to live here when I would be spending all our money shopping for our new granddaughter. I replied then and stand by it now that it would be no problem as Fibromyalgia saves us money. If I did not have FM I would be shopping quite frequently I'm sure at all the little shops here. And so you understand that even though my mind can be positive and sunny and set to go, my body doesn't follow. And sometimes the small trips to town become depressing and remind me just how much I've changed since Fibromyalgia.

About My Fibromyalgia

I was diagnosed in 2001. I simply woke up one morning feeling sore all over and as the next few days came I was hurting from head to toe and feeling like my muscles were becoming stiff. I really thought I was having a reaction to something but within the next few days I could barely walk with pain and horrible stiffness. I knew I needed to see the doctor.


I still remember the long walk down the hall at the clinic. My doctor's office was at the very end of the very long hallway and I could hardly pick my legs up to walk. I shuffled and it was painful all the way down. The touch from the nurse taking my blood pressure hurt. Stepping up to sit on the examining table hurt. 


I remember being asked if I had heard of Fibromyalgia and I had actually heard of it because I had read an article about it just a few months prior. That is the diagnosis that was made and the name given to this sudden onset of pain I was experiencing. I was told to research it, read about it, and look for a support group too. The doctor explained heat, massage, pain medication at times, and knowledge, was about all there was at the time. He said there was no given cure for this, only managing the pain. He also explained that in his opinion, Fibromyalgia and Chronic Fatigue most of the time go together and I was one of the persons who just happened to have symptoms of both.


When I first starting reading about the syndrome I found many articles that talked about recovering from CFIDs and sometimes Fibromyalgia. And other articles mentioned getting better or improving after several years. Of course I have discovered since that whoever wrote those articles did not really know about FM or CFIDs!


From my time of diagnosis till present I have been on and off numerous medications for arthritis, for pain, for sleep, for depression, and inflammation.
My list of symptoms in the beginning was short and has since grown by leaps and bounds. My "syndrome" has progressed over the past 11 years. Little by little FM/CFIDs has taken over every little piece of my life. After that day at the clinic I remember months later a little relief from the extreme pain I was in, but only briefly. The flare came often and soon they never let up. I don't have flares anymore. Every day, every week, all year long is one long flare!


My symptoms are to name a few: muscle pain head to toe, more so in legs, hips, back, arms. Joint pain, especially in knees and hands and hips. Migraines, which usually come3-6 times a month. Sleep Apnea, insomnia, restless leg syndrome, thyroid problems, dry eyes, dry mouth, muscle spasms, achilles tendinitis, chronic sore throat, low grade fevers, heart rhythm problems, tachycardia, bladder infections, FATIGUE FATIGUE FATIGUE is my biggest symptom, irritable bowel syndrome, knots in muscles all over body, brain fog........


After my initial diagnosis I continued to work, shop, clean house, socialize, take care of my three children, and light exercise. I would have periods where I couldn't do all the above and would rest and could get back up and do again. As time went on my activities became harder. I cut back on socializing, and then cleaning and cooking. I skipped school functions and church functions and my job seemed harder and harder. Some days felt like they would never end. The weekends were not long enough to recover. I am blessed to have a wonderful husband who believes FM/CFIDs is real and understands. He kicked in and took over so much and allowed me to rest. Soon rest wasn't enough. I stayed on the couch when I wasn't at work. I withdrew from everything except work because financially I had to!


10 years later and many doctors later and medications later, circumstances in life led my family in a different direction and I was able to quit my job in December of last year. After 6 months without a job my husband was offered a job in another city and we moved after living in our home town for almost 30 years. I knew it would be challenging but I was thrilled to know I could quit work and try to take better care of myself for the first time since I was diagnosed.


So where am I today with this FM and it's long list of symptoms? I'm still on the couch quite a bit. I don't shop, rarely cook or clean, never socialize, have fallen so far from Church going. I am in pain everyday, all day! Stiffness and spasms are relentless. Joint pain is horrible. Still migraines. Sensitive to medications and struggling to find something for the pain and for the sleep. On occasion will try to go to town or grocery store with husband only to suffer so afterwards. Going to doctors for new symptoms that I can't seem to manage from time to time. The internet is my friend as I have found the support groups on it to be so helpful and comforting as we all know unless you have FM it is impossible to understand. So like many others I am jumping on the bandwagon of blogs to tell my story with the hopes it may be of help to another unfortunate person with FM, or simply helpful to me to write it all down. I try to be positive but there are days I just hate FM and what it has done to my life. I love meeting others who share similar stories of chronic illness and I love reading inspirational blogs and stories as well. And I will never grow tired of reading the latest news on FM/CFIDs and praying that I will be "better" someday!