Familiarity

As I go through the Fibromyalgia forums I am finding across the web, I begin to see many of the same things I have always suffered with, but never made any connection about. I am amazed at how familiar everyone else's story is to mine.

I am beginning to think that I have had this for a very long time, but only got diagnosed with it now, as I never thought to speak to a doctor about any of my pain before this other stuff with my hands and feet happened.

For the past week or so I have been racked with upper back pain that reached a crescendo yesterday. I wanted nothing more than to not be here any longer. Sleep was difficult last night as I am not taking the narcotics any longer. I woke up with horrible scalp pain, the kind you get from wearing a pony tail too tight. Apparently that is a common complaint among Fibro suffers. I never knew that.

I started the Cymbalta yesterday. I was fine for the first 5 hours, and then Bam! I was hit with the worst panic attack. I went to bed and stayed there for two hours. I have read that it may take a few days to stabilize in my system, but if anything like that happens again today, I will call the doctors office and let them know that I can't take the medication. I've taken Lexapro in the past and had a similar reaction.

Today I will take a shower, get comfy on the couch with pillows and heating pad and just try to stay there. I told Aaron to keep an eye on me in case anything happens.

Fibromyalgia

So the verdict of the moment is Fibromyalgia. The doc also thinks possibly palindrome rheumatoid, but isn't sure. There is definitely more going on, and it could be triggering the Fibro. So, I'm on Cymbalta for the next few weeks, and then we will see.

Doctor Visit Tomorrow

So, my follow up visit with the Rheumatologist is tomorrow. I'll be getting, I hope, the results of more blood tests, and going over how the Prednisone worked for me. I also will need to go over things I missed at the first visit and things that have changed since the last visit. I got some advice to type up a list to give to the doctor, so I don't forget.

This is my one page list:

To Discuss with Doctor

·        New or Worsening Symptoms

o   Back pain. Bruised, swollen feeling in mid spine, lower back burning and soreness, upper back burning and soreness.

o   Neck pain and left shoulder pain worsening, lots of cracking

o   Left hand redness on joints worsening, especially middle finger

o   Fingertips burning and tingling in middle of night

o   More migraines. Migraines are lasting 2 days or more a week, where I used to only get them once a month or less.

o   Trouble sleeping, waking at night and not able to fall back to sleep, getting worse.

o   Right knee – more episodes of soreness

o   More pain in my toes (proximal phalanx), especially right foot.

o   Primary care visit, noticed more weakness on right side of body

·        Prednisone

o   Mood swings

o   All day agitation

o   Brain fog worsening

o   Major depression at night

o   Burning left ear

o   May have kicked in around Day 5, less fatigue and pain while working, though pain would hit later in the night or next day.

·        Disability

o   Need substantial and objective information about my symptoms and diagnosis to appeal my denial of short term disability. Need to pick up office visit notes and copies of blood work to send with my appeal.

·        All Current Symptoms

o   Bi-lateral hand pain

§  Middle fingers feel bruised at mid joint

§  Multiple joints turn red and burn with use

o   Bi-lateral toe pain

§  Aching in proximal phalanx

§  Toes burn and turn red with use

o   Pain in multiple areas of body, back, neck, shoulders, knees

o   Fatigue

o   Depression/ Anxiety

o   Stiff and sore in the morning for up to 2 hours

o   Symptoms subside, unless over use, until evening and then return.

o   Worsening migraines

So, I guess I'll have more information tomorrow morning. Hope I can sleep tonight. 

A Bad Day

Today was not a good day. I woke up with red hands and feet, so sore.

 I woke up late, and only because my son didn't want to get out of bed, so he yelled. He yelled for his Daddy, but my hearing is so bad and I just heard yelling. So, I got up to go see to him. I knew it would be about how the hallway was too dark and he just was too scared to come out, that's what he would say anyway. And of course that was what he said. I told him to get out of his bed and go get his Daddy.

I gave him a kiss and got back into bed. I tried, anyway. I'm sure I looked a mess going back and forth down the hallway, hardly able to walk. I must have looked like the hunchback of Notre Dame. Well, I couldn't get back to sleep. I really needed a shower, so I struggled back out of bed. I made some coffee, and gathered some clothes and towels and took my shower. By the end of the shower my ankle was red my toes were screaming and my hands were twice as red as before.

It only got worse as the day went on. Right now, this typing hurts, but I need to get these things down.

Sometimes, I feel like I'm crazy. Maybe it's all in my head. I'm just using the computer too much, yada yada. Then days like today happen. When my feet hurt out of nowhere, I know it's real. My feet don't use the computer, and there is no reason for the joints in them to burn and turn red. When symptoms I am not expecting slap me in the face and tell me something is really going on in my body. Then I get scared.

Tomorrow will be a really hard day for me. It will be the anniversary of the death of one of the most important people in my life, my Aunt. She would be the person that I could call on through this medical mess and would know just what I needed to do, or how to cheer me up. I don't get to wallow in grief or have a pity party, though. I have a kid that I have to homeschool, and Halloween preparations to get together.

Tomorrow will also be the first day off of Prednisone. I was only on it for one week, so I am hoping the withdrawal effects won't be too bad. I guess we'll see tomorrow. 

More Waiting

So, I had my first visit with the Rheumologist this past Monday. Long story short, he isn't sure what is wrong with me. He mentioned a couple of rare diseases, that I can not remember the names of, and also said it could still be Rheumatoid, or I may have super severe Vitamin D deficiency. He says I am a mystery

He put me on 10mg of Prednisone for 7 days, and wants me to stop after that. I'm keeping track of how I feel. So far all my symptoms are pretty much the same, but added on

• Mood swings
• All day agitation
• Worsening brain fog
• Burning on the outside of my left ear after taking pred in the morning

Today I am noticing: 

• Slightly less fatigue
• Very slightly less ache in my joints

I still wake up with burning, red joints, pain in my heels, and stiffness. My joints do ache at the end of the day, but I am getting more done during the day with a little less pain. 

The Rheumy also ordered more blood work. I'm waiting for the results of C3, C4, CCP, ANA IFA, and Vit D. 

The Rheumy also would not sign off on a work release form so I can return to work. He wants me out for at least a couple more weeks. This really sucks because my Short Term Disability was denied and I am now going through the appeals process. I have no money coming into the house and a child to feed. I'm hoping that he will sign the release form with a modified schedule when I see him at the end of the week. 

After I found out I was denied the STD, I went to my primary doctors group and saw the doc that has been treating me there. He did another exam and found the right side of my body to be getting weaker. 

So it is now more waiting. I just hope this week goes by fast. I am so tired of being bored. It's hard to not do things, and just sit around. I'm too stressed to focus on reading books, so that is not helping. 

Getting Closer to D Day (Doctor Day) and More Pain

Things have been about the same, but somewhat worse. The pain I am in at the end of the day is tiring. My hand muscles are usually very weak all the time now. Typing is more work.

I've gotten my computer set up for using with my voice. I'm just using the voice activation that is built into Windows 7. That should help. I'll need to get used to speaking out loud. I am in my head so often, and for so long, that speaking out loud is strange to me. Just waiting for the headphone with microphone I ordered to arrive, and I'll be all set.

Last Thursday I was feeling like I had a little more energy, so I decided to do some house cleaning. I got as far as setting aside some boxes to go to the basement, and putting some things away, when my joints decided they didn't like that. They ended up doing this:

Right then I wanted to just cry. Why can't I just do normal stuff? I just want a clean house, dammit. 

This morning, while making breakfast, I felt a burning itch in my lower back, along the spine. By the time I was sitting and eating, the burning was in my upper back, and my armpits. What is that? A quick Google search didn't get me much but some things about nerve pain and rheumatoid of the spine. Is it really that bad, when my last blood tests came out fine and the xrays showed nothing? What is up? It's all so frustrating and scary. 

Just a couple more days. I see the Doctor on Monday.I'm hoping that he can give me something to ease my mind until he has definitive answers, which could take some more time. 

Pain and Fatigue

I woke up this morning with burning pain all over. My toes, the bottoms of my feet, the joints in my fingers, my knees, and even near my armpits.  It's a day to stay off the computer and rest, but there is too much going on.

I still prefer this burning and aching to the nausea and headaches. I wanted to end it, seriously. The pain was too much. It was like migraine, but worse. Still not sure if it was the Naproxen, but I'm on day 4 of not taking it and haven't had nausea since day 2 and the head pain is gone. Now it's just the burning and aching, and the grogginess from the Norco, and tiredness.

Found this last night while looking up autoimmune issues. I love the Spoon Theory. It explains so much about what it is like to live with real fatigue.







*Edit 10/14/12: I have a migraine. Not sure what triggered it. Wondering if I should try going back on the Naproxen. I see the Rheumatologist next week.

Experimenting

So, I got tired of the headache and nausea everyday. I decided to stop taking the Naproxen and see what happens. I am on day 3 of no Naproxen. I've taken Norco (Vicoden) once to help me sleep. This morning I woke up with various joints burning and sore, and red. Also, there was a hive on one of my finger joints.

 I took a shower earlier, and that led to sore joints in my foot/ toes, and fingers. I might be taking the Norco again tonight to help me sleep. My appointment with the Rheumatologist is still a week and few days away.

Dealing with Chronic Pain - The Beginning

I'm not sure of the exact date, but sometime back in June I started to feel an ache in my middle, right finger. It wasn't anything major. I figured I had just over-used my hand. The pain got worse as time went by though. After about a week or so, I started to think back to see if I may have hurt it and forgotten. I couldn't think of anything. Then, one night at work, it hurt so bad that I couldn't pick anything up. My middle finger felt broken, but I hadn't injured it. What was going on? When I woke up the next day, the tendinitis in my right index finger returned. I had suffered from tendinitis in this finger on and off for two years.

At the same time, I had been suffering from a pain in my right leg, for at least 6 months, if not longer. I believe that it had started even earlier, but that because of my sedentary nature, before I started working again, that it stayed dormant until I started moving again. The pain went from my hip to my ankle, but centered on the right side of my right knee.  I researched it and the only thing I could come up with was an IT Band issue. I had noticed the pain after many uses of the treadmill and stationary bike, so it didn't seem far fetched.

I've been in a lot of pain, for most of my life. I have suffered from migraines since the age of 18. I have slight scoliosis and have had back pain for as long as I can remember. I am under a ton of stress, I am fatigued, I am tired of the pain. I also, thankfully, just got insurance. I had decided to go to urgent care so I could be seen right away. I was also hoping that if they couldn't help me, that they could refer me.

Supermom

The past week has been pretty busy. A good week, but stressful in new ways. The things to do keep piling up and new responsibilities keep getting added. I did not let go of Facebook, and I am still teetering on the edge with that. I find myself logging in too often. The first few days were easy. Now that I know I am keeping it, I find it too easy to log in and out.

My day job boss has added more hours to my schedule, so I am pretty much full time now. There is good and bad there. Good: money and affordable benefits, Bad: no time for me or my business. I have to give up my life again. Sigh. Trying to figure out how to make it all work; day job, business, homeschool, me.

So, I have my lists of things to do in each room to get the house in tip top shape. I got more checked off today, but still tons to do. The laundry room is now clean and organized. We added a new hamper from Ikea to keep the clothes off of the floor. We also got a new indoor recycling bin, with a lid, so that is all neat and clean as well. Grayson also got his very own hamper in his room so he has a place to keep his dirty clothes rather than on the floor. Progress.

Grayson will start homeschool in August and we are in the process of signing him up for soccer. We are all excited about it, and it will be a new, big, experience for Grayson.

I've also been helping Aaron with his photography business.

Yesterday we did the local Family Fest event. It was a huge success. Aaron demoed his portrait process and took portraits of people . He'll be sending everyone a free low res copy in their email and information on his portrait packages. 

I think that is it for now. Back to the drawing board and figuring out new ways of trying to do it all. 

RIP Donna

http://www.cnn.com/2012/05/17/showbiz/donna-summer-dead/index.html?hpt=hp_c1

Experimenting

So today is the second day that I won't be logging into Facebook. I decided, after  a couple months of thinking about it, that I needed to get away from Facebook for awhile. I'm so engrossed in it everyday, that I did not think that I could get away from it without deactivating the account. I really did not want to do that, but just wasn't sure.
So far, I think I am doing pretty well. Having my blog back helps. I do have to fight the urge to post something I find funny or interesting, but overall not missing it too much. I think that I have decided, though, that I will keep my facebook account active, especially because of my business account, but also because I know I will lose track of people who I would like to stay in touch with if I don't keep it.
The experiment will continue for the rest of the week and we'll see then what I ultimately decide. I am enjoying the freedom though. I almost feel like I'm on vacation.

I'm back!

So, it's been four years since I moved over to Wordpress. A lot of things have happened since I was in here last. I still have a Wordpress blog, but it's for my business, Nancy Kay Creations. I started the business in 2010, after I lost my job at the bookstore. If you've read my blog in the past, you know how unhappy I was at that time. The bookstore closing was a big relief to me. Anyway, Aaron and I both moved, we both started businesses (he is now a professional photographer), I am now working in retail again to pay the bills and get health insurance, but still trying to run my jewelry business. Grayson is now 5 years old and will be starting school in August. We'll be doing school through California Virtual Academies (CAVA). So I will be blogging a lot about that experience and getting back to my everyday musings here. I was on Facebook and sharing a lot over there, but spending way too much time reading and not getting the things done that I wanted. I'm at a point now where I want to write more and get more of my thoughts out. I missed blogging. Hope you'll continue with me.