I am trying to decide what is going on with my body... I hurt all over more then anywhere else but that isn't new. I can't think clearly...also not new. I have extremely blurred vision, a headache, I have a phantom neural sensations like skin crawling, itching etc. I don't have a rash, haven't changed meds so it isn't a allergic reaction. To make sure I took some Zyrtec and when that didn't work some Benedryl.
I went to bed at midnight last night and slept till 11am but I am tired, bone weary tired. I do good sitting at the computer or on the sofa watching TV. My legs ache and spasm and my feet cramping up at night is driving me nuts and waking me up! I have so much I need to get done but... I can't prod myself into doing anything. I am either hot or cold. As I am sitting here typing I feel like I am outside in the sun! Such a sweaty and icky feeling! I am not running a fever!
Any idea what this could be? I know sounds like Fibro or CFS...probably is but I haven't over done anything, I am taking my medications like I am suppose to but it isn't working... If i don't show a difference by Tuesday I am definitely calling the doctor. Something isn't right in my world!
Sunday, September 2, 2012
Saturday, August 25, 2012
Dysautonomia...huh!
Just read an interesting article that was linked from Fibro 360 Community on Facebook, called Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome by Adrienne Dellwo. Ms Dellwo has first hand knowledge of Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) and writes about them at About.com. Ms Dellwo recommends an article on subject called Dysautonomia, A family of misunderstood disorders By Richard N. Fogoros, M.D., About.com Guide Updated November 13, 2011. Both articles are quick and easy reading.
The autonomic nervous system is supposed to keep things running on an even keel in your body. It controls your breathing, heart rate, temperature, balance etc...things that just happen in your body without you having to think about it. When you have dysautonomia you body is not working how it should be and problems occur. Here are some of the symptoms they listed:
With my FM and CFS I have had all the symptoms at one time or another and it was only in the past 2-3 years that I have had them for long periods of time with worsening problems with the aches and pains, blurred vision, depression, dizziness, fatigue, trouble sleeping, numbness and tingling, rapid heart rate, bruising, and temperature regulation. Some days I do great and have very few problems but on the other days...well it is just better I go to bed and stay there cause I don't do well with anything including interpersonal relationships with family and friends.
Read the articles and follow the links to get some valuable information.
The autonomic nervous system is supposed to keep things running on an even keel in your body. It controls your breathing, heart rate, temperature, balance etc...things that just happen in your body without you having to think about it. When you have dysautonomia you body is not working how it should be and problems occur. Here are some of the symptoms they listed:
- Aches and pains
- Anxiety attacks
- Blurred vision
- Depression
- Digestive problems
- Dizziness, sometimes with fainting
- Fatigue
- Low blood pressure (especially upon standing)
- Numbness and tingling
- Poor exercise tolerance
- Rapid heart rate
- Sweating
- nausea
- temperature control
- trouble sleeping
With my FM and CFS I have had all the symptoms at one time or another and it was only in the past 2-3 years that I have had them for long periods of time with worsening problems with the aches and pains, blurred vision, depression, dizziness, fatigue, trouble sleeping, numbness and tingling, rapid heart rate, bruising, and temperature regulation. Some days I do great and have very few problems but on the other days...well it is just better I go to bed and stay there cause I don't do well with anything including interpersonal relationships with family and friends.
Read the articles and follow the links to get some valuable information.
Friday, August 24, 2012
WOW! Time flies....
I know I promised to post more frequently but I have been busy and the summer seems to have just slipped by on greased treads! I first want to say I am doing well and there hasn't been much change in my physical overall well being and I am keeping on keeping on! Make sense? Nah...
I went storm chasing this year with Chuck and was really concerned about how I was going to handle it but turns out that it all went well. I didn't push myself too much and I spoke up when I had an issue. If you would like to read about the trip I posted daily on my Okienurse Paper and Ink Therapy blog. To read the first post go here then you can read more if you wish. I attempted some short 'hiking' around some of the trails to see the sights in Glacier National Park, Yellowstone National Park, and Tetons National Park and managed to walk a mile or two with no untoward effects and enjoyed doing it. Just took it slow and easy and did my thing. I ended up having to take more pain medication at night and during the longer car rides but it was a small price to pay for all the fun days that we had.
This is a picture of me at the lower falls in Yellowstone Park. I really loved it there and we spent 2 days just wondering around seeing the sights and still didn't get to see everything. I think if you spent a week there it still wouldn't be long enough!
I have been listening a lot to webinars and various self help programs recently. I think that has been helping me a lot in managing my physical and psychological issues. I went to the doctor last month due to some gastrointestinal issues like nausea, didn't want to eat and diarrhea! I had a upper and lower scope done and was told by the doctor that everything looks good there except for a polyp and he gave me some medication for the stomach problems that seems to be helping. I wonder why it is those of us blessed with fibromyalgia, CFS/ME, and associated disorders have all these problems that never are seen on any tests that are done...makes me wonder why we are so special!
Well thats it for today and I promise to try and keep up better over the coming months. I know with the coming of fall and winter we will all be inside more trying to keep the mobility and pain issues under control. This summer has been nice but I have just about as much problems handling the heat now as I do the cold.
I went storm chasing this year with Chuck and was really concerned about how I was going to handle it but turns out that it all went well. I didn't push myself too much and I spoke up when I had an issue. If you would like to read about the trip I posted daily on my Okienurse Paper and Ink Therapy blog. To read the first post go here then you can read more if you wish. I attempted some short 'hiking' around some of the trails to see the sights in Glacier National Park, Yellowstone National Park, and Tetons National Park and managed to walk a mile or two with no untoward effects and enjoyed doing it. Just took it slow and easy and did my thing. I ended up having to take more pain medication at night and during the longer car rides but it was a small price to pay for all the fun days that we had.
I have been listening a lot to webinars and various self help programs recently. I think that has been helping me a lot in managing my physical and psychological issues. I went to the doctor last month due to some gastrointestinal issues like nausea, didn't want to eat and diarrhea! I had a upper and lower scope done and was told by the doctor that everything looks good there except for a polyp and he gave me some medication for the stomach problems that seems to be helping. I wonder why it is those of us blessed with fibromyalgia, CFS/ME, and associated disorders have all these problems that never are seen on any tests that are done...makes me wonder why we are so special!
Well thats it for today and I promise to try and keep up better over the coming months. I know with the coming of fall and winter we will all be inside more trying to keep the mobility and pain issues under control. This summer has been nice but I have just about as much problems handling the heat now as I do the cold.
Thursday, June 14, 2012
more on PEM
If you remember a couple of posts back I wrote about PEM, post exertional malaise and how it effects my life. Not a pretty story I can tell you and I think that without the help of my family it would get even uglier cause they don't allow me to get depressed and stay that way when this hits me. My daughter loves to tell me that I KNOW BETTER!! (that means I should listen to my body and not over do!) but it isn't at all easy some days to listen to your body and stop when you should.
I know I don't rest well, don't eat well, and don't exercise like I should and that adds to the whole problem but... I could take the drugs they give me to help me sleep but I feel like crap for several days after a 'restful' nights sleep, I literally forget to eat and when I get hungry I end up eating all the wrong foods cause I need to eat right now! The exercise issue is a two edged sword...if I don't do some I hurt, if I over do I hurt and it is hard to draw the line.
As Jennifer Spotila JD wrote in her article for Research 1st "PEM associated with chronic fatigue syndrome (CFS) dominates the patient’s experience of the illness, but PEM is generally considered a self-reported symptom because there is no clinical test to easily measure its occurrence and severity." In the article it goes on to say that PEM may be a clinical indicator to differentiate it from other disorders ie MS, Lupus, other autoimmune.
Dr. Marvin Meadows is researching PEM also and there Research1st wrote and article and there is a video that can be a little technical but understandable explaining how he thinks. The article Brain Fog in CFS: What's Going On? provides information about how reduced blood flow due to blood pooling in the legs and abdomen cause insufficiency to the brain causing the fog. Check out the You Tube video Going With The Flow -- Blood Flow, That Is.
Today on Research 1st I read an article about Dr. Cook doing research on how linkages in people with the disorders and how exercise causes PEM. Exercise, Fatigue, Genes and Brain Function: Identifying the Linkages in People with CFS
Lots or research going on out there so there is hope for the future in handling this disorder. I remember when people with MS and Lupus and... (get the idea) went through the same crap we are with no one understanding and thinking they were faking too. Difference was they had visible markers showing their disorder. Support research into CFS/ME, Fibromyalgia and other disorders because even if I don't look sick I am!
I know I don't rest well, don't eat well, and don't exercise like I should and that adds to the whole problem but... I could take the drugs they give me to help me sleep but I feel like crap for several days after a 'restful' nights sleep, I literally forget to eat and when I get hungry I end up eating all the wrong foods cause I need to eat right now! The exercise issue is a two edged sword...if I don't do some I hurt, if I over do I hurt and it is hard to draw the line.
As Jennifer Spotila JD wrote in her article for Research 1st "PEM associated with chronic fatigue syndrome (CFS) dominates the patient’s experience of the illness, but PEM is generally considered a self-reported symptom because there is no clinical test to easily measure its occurrence and severity." In the article it goes on to say that PEM may be a clinical indicator to differentiate it from other disorders ie MS, Lupus, other autoimmune.
Dr. Marvin Meadows is researching PEM also and there Research1st wrote and article and there is a video that can be a little technical but understandable explaining how he thinks. The article Brain Fog in CFS: What's Going On? provides information about how reduced blood flow due to blood pooling in the legs and abdomen cause insufficiency to the brain causing the fog. Check out the You Tube video Going With The Flow -- Blood Flow, That Is.
Today on Research 1st I read an article about Dr. Cook doing research on how linkages in people with the disorders and how exercise causes PEM. Exercise, Fatigue, Genes and Brain Function: Identifying the Linkages in People with CFS
Lots or research going on out there so there is hope for the future in handling this disorder. I remember when people with MS and Lupus and... (get the idea) went through the same crap we are with no one understanding and thinking they were faking too. Difference was they had visible markers showing their disorder. Support research into CFS/ME, Fibromyalgia and other disorders because even if I don't look sick I am!
Monday, June 4, 2012
June 4, 2012
It has been over a week since I posted and I thought I would write a brief post and update you.
I decided this week was the get back in the groove week! I have been out of the groove for the last month due to various events and life changes that have been going on around my house. Literally and figuratively! I guess I should explain that!
I am getting some renovation done on my house and I am getting up every morning about 9 am and going to bed around 12-1 am. I am trying not to get stressed at the stuff going on but sometimes it is hard not to and to allow myself to be pulled down. Having CFS/ME and Fibro has taught me a valuable lesson...its not worth getting stressed over things you can't control but....I am still a control freak at heart. It has taken multiple reminders and wake ups to make me realize that I am living on a very tight rope that if I deviate too much I end up having to recover and climb back up to get on with life. I spent 4 days straight in and out of bed after teaching that class last month cause it was so stressful. I then went to a class that had me up every morning at 06:45 cause I had to be there at 09:00 and it was an hours drive away. It was not a stressful class and I had a blast going to it but...it knocked me out of sync and I spent all last week trying to get back on track. I am still not there. I have to limit everything I do and plan ahead before I do anything. I have to be willing to accept the consequences if I don't stick to my limits. Luckily I have a very understanding husband who can cook for himself and family that assists me as best they can.
I missed 2 weeks of my GA group because of not feeling up to going and missed Weight Watchers because I couldn't stand the thought of the energy I was going to have to put out to leave the house.
I don't think people, extended family and friends, understand what these disorders can do to a person. I can give an example but it still doesn't fully explain what we, people with fibro and CFS/ME go through on a day to day basis.
Think of a hard day at work in the yard, or on a hike, or even just shopping. Think about how your legs, back, feet, head, all your body feels at the end of the day. Back in the old days I knew that a couple ibuprofen and a nap would correct most of it, that I would be sore a day or two but then back to normal. First off I doubt I could do 2-3 hours in the yard, on a hike, or shopping. Hell, I have to schedule times I go to WalMart, Sam's, and Target on different days cause I won't make it to two much less to all three without collapsing. It only took once for a salesperson going to get me a cart at WalMart for me to not do that again. It is a standing argument with Heather and I when we go shopping that I should ride the cart. I don't want to get used to doing that so it is a joke now that she will go get the cart should I need it or we can do a switch off where I will ride it for a while and she can ride it for a while.
I always ache like I have a bad flu and that gets worse if I overdo and stretch the limits. I have had ultrasounds, MRI, CT, PET scans done but nothing major showed up. A little arthritis but nothing that should affect me like I am affected. I can make a bed, fix dinner, maybe do a little crafting or back wash the pool and I have done a hard days work for me. I get down sometimes cause 5 years ago I was a go getter type A person. I worked 48 hours a week on night shift, had a big garden, mowed my own yard, did all my own house work and wasn't a whiner like I feel like I am now.
Want to know more about CFS/ME and Fibromyalgia? Check out these links:
FibroCenter http://fibrocenter.com/
U.S. National Library of Medicine http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/
Medline Plus http://www.nlm.nih.gov/medlineplus/fibromyalgia.html
National Fibromyalgia Association http://www.fmaware.org/
Fibromyalgia Community http://www.fibromyalgia.com/
CFS/ME group service http://www.cfs-news.org/
Support group for ME/FM/CFS/MCS http://www.tnq-support-group.net/
Research 1st http://www.research1st.com/
These are some of the more reliable sources I have found and there are a lot more out there to peruse. Be careful though that you don't get sucked in by some snake oil seller cause there isn't a cure for FM/CFS/ME. Once you have it you have it for life with some days being better then others and some days are worse. I have a quality life and enjoy every minute of it but I have to remember my limits and not stray far. It is a challenge figuring out what you can do and what you can't and that is the biggest hurdle to get over. I went through a horrible depression for about a year and a half cause I felt like I was a worthless human being cause I couldn't do everything I used to do. I would make a remark about being tired and everyone would roll their eyes which only exacerbated the issues. Thinking back I have probably had this problem/disorder since 1992 when I was diagnosed with lymes disease. They say it doesn't necessarily cause the disorder but might contribute to the downward spiral.
Anyway didn't mean to preach or whine just trying to let you know where I am at today. Contemplative and trying to get back on track! Hope you have a great week. hugs.....
I decided this week was the get back in the groove week! I have been out of the groove for the last month due to various events and life changes that have been going on around my house. Literally and figuratively! I guess I should explain that!
I am getting some renovation done on my house and I am getting up every morning about 9 am and going to bed around 12-1 am. I am trying not to get stressed at the stuff going on but sometimes it is hard not to and to allow myself to be pulled down. Having CFS/ME and Fibro has taught me a valuable lesson...its not worth getting stressed over things you can't control but....I am still a control freak at heart. It has taken multiple reminders and wake ups to make me realize that I am living on a very tight rope that if I deviate too much I end up having to recover and climb back up to get on with life. I spent 4 days straight in and out of bed after teaching that class last month cause it was so stressful. I then went to a class that had me up every morning at 06:45 cause I had to be there at 09:00 and it was an hours drive away. It was not a stressful class and I had a blast going to it but...it knocked me out of sync and I spent all last week trying to get back on track. I am still not there. I have to limit everything I do and plan ahead before I do anything. I have to be willing to accept the consequences if I don't stick to my limits. Luckily I have a very understanding husband who can cook for himself and family that assists me as best they can.
I missed 2 weeks of my GA group because of not feeling up to going and missed Weight Watchers because I couldn't stand the thought of the energy I was going to have to put out to leave the house.
I don't think people, extended family and friends, understand what these disorders can do to a person. I can give an example but it still doesn't fully explain what we, people with fibro and CFS/ME go through on a day to day basis.
Think of a hard day at work in the yard, or on a hike, or even just shopping. Think about how your legs, back, feet, head, all your body feels at the end of the day. Back in the old days I knew that a couple ibuprofen and a nap would correct most of it, that I would be sore a day or two but then back to normal. First off I doubt I could do 2-3 hours in the yard, on a hike, or shopping. Hell, I have to schedule times I go to WalMart, Sam's, and Target on different days cause I won't make it to two much less to all three without collapsing. It only took once for a salesperson going to get me a cart at WalMart for me to not do that again. It is a standing argument with Heather and I when we go shopping that I should ride the cart. I don't want to get used to doing that so it is a joke now that she will go get the cart should I need it or we can do a switch off where I will ride it for a while and she can ride it for a while.
I always ache like I have a bad flu and that gets worse if I overdo and stretch the limits. I have had ultrasounds, MRI, CT, PET scans done but nothing major showed up. A little arthritis but nothing that should affect me like I am affected. I can make a bed, fix dinner, maybe do a little crafting or back wash the pool and I have done a hard days work for me. I get down sometimes cause 5 years ago I was a go getter type A person. I worked 48 hours a week on night shift, had a big garden, mowed my own yard, did all my own house work and wasn't a whiner like I feel like I am now.
Want to know more about CFS/ME and Fibromyalgia? Check out these links:
FibroCenter http://fibrocenter.com/
U.S. National Library of Medicine http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001463/
Medline Plus http://www.nlm.nih.gov/medlineplus/fibromyalgia.html
National Fibromyalgia Association http://www.fmaware.org/
Fibromyalgia Community http://www.fibromyalgia.com/
CFS/ME group service http://www.cfs-news.org/
Support group for ME/FM/CFS/MCS http://www.tnq-support-group.net/
Research 1st http://www.research1st.com/
These are some of the more reliable sources I have found and there are a lot more out there to peruse. Be careful though that you don't get sucked in by some snake oil seller cause there isn't a cure for FM/CFS/ME. Once you have it you have it for life with some days being better then others and some days are worse. I have a quality life and enjoy every minute of it but I have to remember my limits and not stray far. It is a challenge figuring out what you can do and what you can't and that is the biggest hurdle to get over. I went through a horrible depression for about a year and a half cause I felt like I was a worthless human being cause I couldn't do everything I used to do. I would make a remark about being tired and everyone would roll their eyes which only exacerbated the issues. Thinking back I have probably had this problem/disorder since 1992 when I was diagnosed with lymes disease. They say it doesn't necessarily cause the disorder but might contribute to the downward spiral.
Anyway didn't mean to preach or whine just trying to let you know where I am at today. Contemplative and trying to get back on track! Hope you have a great week. hugs.....
Tuesday, May 22, 2012
Post Exertional Malaise
I spent Saturday teaching a class at Whole Lotta Scrap in Norman. The students were making a complicated chipboard book and I was really stressing over the class and looking back I wish I had just gone ahead and cut everything for them so I wouldn't have had to stress that everyone got their cuts correctly done!
We had scheduled the class to coincide with the crop that night so everyone would have adequate time to work on the book and that I would be available to all for questions and assistance. The book was not a book for first timers to attempt but out of 8 students 4 were first timers which added to my stress. I was on my feet most of the 11 hours and I have been in misery ever since. I knew that stress and exercise were not my friends with the CFS/ME and FM but I also felt so much stronger then I have in a long time and I figured I would handle it. NOT! I have been in and out of bed the past 3 days and nothing seems to alleviate the back and leg pains except laying down. My neck, hips, back, and ribs are a hot bed...literally warm to the touch and tender. I have taken Lortab to help with my arthritic pain and ibuprofen to help with the other but it is still a trial.
I got up a few minutes ago to read emails and get something to drink and ran across this post by Research 1st regarding Post Exertianal Malaise (PEM) and it defines for me what is going on in my body. If you get a chance check it out...Post-Exertional Malaise: Perception and Reality. or if that link doesn't work plug this into your brower...
http://www.research1st.com/2012/05/22/pem-perception-and-reality/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+Research1st+%28Research1st%29&utm_content=Google+Reader
We had scheduled the class to coincide with the crop that night so everyone would have adequate time to work on the book and that I would be available to all for questions and assistance. The book was not a book for first timers to attempt but out of 8 students 4 were first timers which added to my stress. I was on my feet most of the 11 hours and I have been in misery ever since. I knew that stress and exercise were not my friends with the CFS/ME and FM but I also felt so much stronger then I have in a long time and I figured I would handle it. NOT! I have been in and out of bed the past 3 days and nothing seems to alleviate the back and leg pains except laying down. My neck, hips, back, and ribs are a hot bed...literally warm to the touch and tender. I have taken Lortab to help with my arthritic pain and ibuprofen to help with the other but it is still a trial.
I got up a few minutes ago to read emails and get something to drink and ran across this post by Research 1st regarding Post Exertianal Malaise (PEM) and it defines for me what is going on in my body. If you get a chance check it out...Post-Exertional Malaise: Perception and Reality. or if that link doesn't work plug this into your brower...
http://www.research1st.com/2012/05/22/pem-perception-and-reality/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+Research1st+%28Research1st%29&utm_content=Google+Reader
Tuesday, April 17, 2012
Weight Watchers Weighin 4-16-2012
Yesterday was weigh-in day at Weight Watchers. The lecture was about produce power and adding color to my meal plans. Judy (the leader) showed us examples of food dishes that looked really bland and unappetizing, ie: baked potato with a steak, nothing on either or a piece of toast and a scrambled egg. The group addressed the issue of what could make the food tastier and have more eye appeal. I am a visual person and even though I would eat the food as is if it was dressed up a bit it would not only look better in my opinion it would taste better. I put red and yellow peppers and onions on my steak, salsa on my potato. Doctoring up the eggs and toast was easy too...everyone eats salsa on everything around here...;-)
I was pleased with the lecture and the interaction with the others in the group. One man has lost 71# over the past year and he was so exuberant sharing his tips that got him into what he calls the "winner circle." Oh yeah! I got rid of -2.8# last week by just watching what I ate and following the plan. Not a single hungry day but did have a couple days where chocolate was calling to me to come hither! I had some leftover Cadbury Easter candies (hard shell chocolate eggs) and I ate a couple and was fine afterwards.
They say it takes 21 days to detoxify your body and get rid of old habits and build new...do you believe that? Maybe the detoxification but my brain will always cling to the old ways so I am taking this one day at a time. This week wasn't so bad so I am looking forward to the next week knowing that the more I do it the easier it will become.
Subscribe to:
Posts (Atom)