Monday, January 31, 2011

Okienurse's Fibromyalgia Blog: January 31, 2011: My day

I went to bed at 2:30am this morning after having a fairly good day yesterday. Today I was up and about by 11:30. I can remember tossing and turning and waking my self up a couple times but this morning when I got up I felt rested.

I finished a load of laundry, made the bed, loaded the dishwasher and sat down to read emails about 15 minutes into sitting there I began to hurt between my shoulders and from my neck. I got up and started moving around but it is so cold outside today for me to go out my arthritis would kick in to play with the FM and it isn't worth it. I took my Savella and the Requip a little late this morning so that maybe part of the reason.

Today was a pretty good day so I think I am going to rate it a 2/100%. I know people...a two is nothing but you know one thing I am learning is that the pain even when it is only a 2 is still enough to alter my life! It was a good day!

Okienurse's Fibromyalgia Blog: January 30, 2011 Pain scales

A friend told me that the pain scale that I had put down to document my pain was a little difficult to follow so here is a simple and easy way to rate it.

This pain scale was posted at a hospice site. Pretty visual and simple.

My pain rating scale is more object and breaks it down better for me:
1... will be just a nagging ache that is relieved by sitting down if I am standing, or standing if I am sitting etc. A change in position.
2... will be a nagging ache in multiple areas of my body.
3... will be a achiness that persists in multiple areas of my body regardless of change in position or activity. I have to take a Tylenol or Ibuprofen to help relieve it.
5... is when I have to repeat the OTC medication and end up having to go to bed or resort to taking a narcotic pain pill.
6... Add the atypical/focal migraine in and I am debilitated more than normal to the above symptoms.
7, 8, 9....just more of the same with repeats in drugs with decreasing efficiency.
10... will be when everything I do at home doesn't help and I have to call the doctor or go to the ER.

Whatever way you choose to rate your pain you need to make sure that you and your caregivers (family, doctor, nurses etc.) are all on the same page so there is no confusion as to your need for medication or treatment and what that medication or treatment should be. Don't be tough and think you can ignore the pain because chances are with Fibromyalgia the extra stress of trying to ride it out will only make it worse! Trust me I am an expert on that concept! For years I have put off accepting I have something wrong with me and being a nurse working in ER I thought every person that came in with FM was drug seeking but that just isn't true. That's not to say a percentage of people presenting to ER claiming to have FM pain either don't really have FM and are truly drug seeking. There are too many people who like the drugs for recreational purposes.

Most of the true FM people I know would rather cut off a hand then go to an ER for help. Most of us live in a world where no one believes we hurt THIS bad when in reality it is probably even a worse pain. As a nurse I had problems getting my brain wrapped around a normal person, looking pink and pretty, being in that much pain. I am a believer now!

My day today could be rated as a 3/75% of the day. The other 25% was about a 4 and I ended up taking an Ibuprofen 800mg twice today.

Sunday, January 30, 2011

Okienurse's Fibromyalgia Blog: January 29, 2011: Pain scale

Today has been a busy day and I am so tired now I can't sleep. I have been having quite a bit of pain today and resorted to taking a pain pill at about 7:30 this evening cause I just got tired of it. My neck, back, chest wall, hips and the backs of my thighs all hurt most of the day. I decided I was going to start a pain scale rating and what portion of the day I had the pain in a journal on my iPhone so I can show it to the doctor when I go in for appointments. I am going to say my pain was a constant achiness all day starting from the moment I became aware of it when I woke up, before I got out of the bed. I will call this a 5/75% of the day. I still have pain but I think if I hadn't taken a pain pill I would have ended up having problems.

Pain rating scale:
1... will be just a nagging ache that is relieved by sitting down if I am standing, or standing if I am sitting etc. A change in position.
2... will be a nagging ache in multiple areas of my body.
3... will be a achiness that persists in multiple areas of my body regardless of change in position or activity. I have to take a Tylenol or Ibuprofen to help relieve it.
5... is when I have to repeat the OTC medication and end up having to go to bed or resort to taking a narcotic pain pill.
6... Add the atypical/focal migraine in and I am debilitated more than normal to the above symptoms.
7, 8, 9....just more of the same with repeats in drugs with decreasing efficiency.
10... will be when everything I do at home doesn't help and I have to call the doctor or go to the ER.

Luckily my pain hasn't gotten to that level and I hope it never does.
I will put the percentage of the day down that I was bothered by it and notate if it was consistent throughout the day or when it got better/worse.

I got up about 10:00 this morning and ran to a class at the local scrapbook store. I was tired when I got there and achy all over. I decided to just stay and work until supper to try and get a scrapbook layout completed for a class so Leslie could have it to show people what the class was going to be about. About 4 pm I really started aching more and more till finally I started feeling nauseated. I realized my head was hurting in my right eye and temple so I took some ibuprofen 800mg and drank a cup of coffee and it seemed to help. At 6pm I went to dinner with the family and the restaurant was busy and noisy and my headache became worse and I couldn't seem to get comfortable at the table. By 7pm I resorted to the Lortab 10mg to try and make it more tolerable which it did. I went back to the scrapbook store to gather my stuff up and went home. I tried to go to bed but I couldn't sleep. It is now almost 6 am and I am going to try again.

I am going to say it was a 5/75% of the day. I need to get some rest cause I have promised to help my daughter with a card making event today. The weather was beautiful today in the 70's and sunny.

Saturday, January 29, 2011

Okienurse's Fibromyalgia Blog: My first fibromyalgia blog post January 29, 2011

Hi my name is Vickie, I am 58 years old, and I have Fibromyalgia! I don't like the diagnosis but in the past two years I have had hundreds of tests run and nothing seems to be showing up on xray, MRI, lab or whatever. I have gone through round of PT and it feels good while doing it but the minute I am off the table I hurt again. I started having problems a couple of years ago but everyone kept telling me it was my back or my this or my that. I can remember the first time I had these type of symptoms was in 1992 and I went to the doctor and they told me I had Lyme's Disease and I was treated for that and I seemed to be fine until 1994 when I had my hysterectomy and spent the next year in hell. Since then my symptoms come and go but these past two years they haven't gone away and seem to have decided to stay this time.

My main symptoms seem to be a pain that never goes away. I can take pain medication and the pain is just dulled. I hurt in my neck, back, upper and lower, even my chest wall/ribs hurt and it sometimes hurts to breathe. My legs and hips hurt all the time and I have an icy hot tingling in my toes on the right foot and the soles of both feet. My doctor says I have some osteoarthritis in my knees. I don't sleep well either night or day so I am absolutely fatigued every morning when I wake up. I have restless leg syndrome where my legs just won't stay still and they will bother me so much that I roll around in bed all night trying to get comfortable even taking sleeping pills. I have stomach problems and a lot of foods bother me. I have hypothyroid disease, IBS, GERD, and take medications for that. My doctor has prescribed a bunch of medications for me but some of them are so expensive I don't know if I will be able to afford them if I can't go back to work. I am having a lot of fibro fog right now and have trouble remembering things and recalling what people tell me just a few minutes ago. This whole disorder is a bummer and I tend to stay depressed a good deal of the time.

SO you say why are you blogging this. Well I am hoping that maybe I can make sense out of this stuff and maybe someone else will surf in to the blog that has FM and can help me or maybe I can help them. This is really a lonely bummer disorder because you can't prove you have anything wrong and I feel like people think I am a fake sometimes. Anyhow this is what I am up to and I am going to try and blog every day and see what comes of it.