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.