kathiat40
11-28-2007, 10:05 AM
Hi,
I have been reading this board for several years and I love it. Like lots of you I have been through every test under the sun which are all negative. I have a couple of points. First, does anyone have completely normal bloodwork, and I do mean completely normal. Nothing is ever positive and I have had every test known to man, plus mri's, x-rays etc..
Also I am wondering if anyone has been completely bedridden with this. My last so called "flare" started on Aug. 18th and I have been in bed pretty much non stop. I have lots of meds and a great doctor, but still cannot function due to pain and fatigue. Any feedback would be appreciated.
I have been reading this board for several years and I love it. Like lots of you I have been through every test under the sun which are all negative. I have a couple of points. First, does anyone have completely normal bloodwork, and I do mean completely normal. Nothing is ever positive and I have had every test known to man, plus mri's, x-rays etc..
Also I am wondering if anyone has been completely bedridden with this. My last so called "flare" started on Aug. 18th and I have been in bed pretty much non stop. I have lots of meds and a great doctor, but still cannot function due to pain and fatigue. Any feedback would be appreciated.
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bluelakelady
11-28-2007, 10:24 AM
hi kathi,
bedridden. yea. for the better part of a year. in a wheelchair too. that was almost 13 years ago. thought it was to be my life. sure glad i was wrong. never had a normal blood test since this started. also have other health stuff that plays into that.
since you have a grand doctor may i suggest you get a script for p.t.? preferably a start in a heated pool to get those muscle used to motion again. do not do what i did. i went down and stayed there, not realizing it would continue to go that way till i found a way to stop it. exercise is my way. so many studies have show exercise to be the fibro diet of choice. fibro brats starve in an active body.
getting into p.t. was the best. i gave my wheelchair away 4 years ago. that felt so good. i still do p.t. alot. now i am on equipment for building muscles.
i am coming out of a rather touchy flare. allowed myself a few days in bed. boring!!! as of two days ago i am making myself get up and go do the things i know i must and some just for fun. sure i come home and pass out for 3 hours, so what? i did it and that is what uplifts my mind. my mind is my best friend. together we are strong. i know for me if i do not get up and get active i will only make it worse. my body does not like to be inactive and expresses it loudly. who knew i was so loud? giggle, my mom.
peace,
bluelakelady
oh yea, duh! welcome, welcome.
bedridden. yea. for the better part of a year. in a wheelchair too. that was almost 13 years ago. thought it was to be my life. sure glad i was wrong. never had a normal blood test since this started. also have other health stuff that plays into that.
since you have a grand doctor may i suggest you get a script for p.t.? preferably a start in a heated pool to get those muscle used to motion again. do not do what i did. i went down and stayed there, not realizing it would continue to go that way till i found a way to stop it. exercise is my way. so many studies have show exercise to be the fibro diet of choice. fibro brats starve in an active body.
getting into p.t. was the best. i gave my wheelchair away 4 years ago. that felt so good. i still do p.t. alot. now i am on equipment for building muscles.
i am coming out of a rather touchy flare. allowed myself a few days in bed. boring!!! as of two days ago i am making myself get up and go do the things i know i must and some just for fun. sure i come home and pass out for 3 hours, so what? i did it and that is what uplifts my mind. my mind is my best friend. together we are strong. i know for me if i do not get up and get active i will only make it worse. my body does not like to be inactive and expresses it loudly. who knew i was so loud? giggle, my mom.
peace,
bluelakelady
oh yea, duh! welcome, welcome.
sunny47
11-28-2007, 02:48 PM
Hi kathi....as I was reading you post , I said to myself she needs Blue - and then scrolled down and saw she already had responded. Please listen to what she has to say - she knows what she is talking about and has helped a lot of people. She is such an inspiration to us all. Just start slow and push through it and each time will get easier.
I know even when I do not feel I will be able to take my evening walk I make myself do it and feel so much better when I get back home.
Good luck...sunny47
I know even when I do not feel I will be able to take my evening walk I make myself do it and feel so much better when I get back home.
Good luck...sunny47
kathiat40
11-28-2007, 04:54 PM
Hi,
Thx for the feedback. Just to clear up the blood work thing. My blood tests are always completely normal. No problems. From what I am reading, yours are not.
I think physio is a good thing and hope to start soon.
Thx again.
Thx for the feedback. Just to clear up the blood work thing. My blood tests are always completely normal. No problems. From what I am reading, yours are not.
I think physio is a good thing and hope to start soon.
Thx again.
jam338
11-28-2007, 10:05 PM
Mostly bedridden here for the past 2 years. There are people on other message boards who have been bedridden for 5-7 years, so it can last a very long time. Being bedridden comes and goes for most for many years, but it is always sitting on the porch waiting to come in. When one fortunately moves into lesser into a more mobile level it is important to gently exercise and never overdo. It is important to remember to keep your *upright* muscles exercised and working or they will lose muscle memoroy causing a much worse problem and resulting in a more difficult recovery requiring PT.
My bedridden time is spent in a reclined in a recliner lined in memory foam pillows and heating pad. Pillows tucked all around for upright muscle support. I can not sit for more than 15-20 min without muscle support or I go risk flare.
Learn to really *listen* to your body. When you are pushing it too hard, it will make you bedridden. It is the body's way of self-protecting itself when you aren't using good judgment to protect it from further harm. I learned that the hard way; most do. We are all so used to *pushing ourselves* for many years with this, but that is very dangerous as you approach bedridden stage. The body is just too vulnerable at that stage. Its a delicate balance of life.
My bedridden time is spent in a reclined in a recliner lined in memory foam pillows and heating pad. Pillows tucked all around for upright muscle support. I can not sit for more than 15-20 min without muscle support or I go risk flare.
Learn to really *listen* to your body. When you are pushing it too hard, it will make you bedridden. It is the body's way of self-protecting itself when you aren't using good judgment to protect it from further harm. I learned that the hard way; most do. We are all so used to *pushing ourselves* for many years with this, but that is very dangerous as you approach bedridden stage. The body is just too vulnerable at that stage. Its a delicate balance of life.
BeHappy2
12-18-2007, 01:17 AM
No i'm not bedridden , although i force, encourage myself whatever you want to call it, to get out of bed. It's not easy , then i pace myself throughout the day. I guess that's why nothing here at home ever get completed, oh well.
If you are bedridden, it may be a great idea to try water therapy. Water therapy works a heck of alot heathier than pain pills. I really am beginning to believe pain pills is not the answer for Fibro. I just hope someone out there in the medical field can find more answers for all of us whom suffer with this horrible pain.
Kathiat40 hope you find a way from being bedridden, we all have to struggle with this issue, give ourselves encouragement. If you have the chance for Water Therapy keep in touch here of how you are doing. We all try to reach out to one another here.
BeHappy2
If you are bedridden, it may be a great idea to try water therapy. Water therapy works a heck of alot heathier than pain pills. I really am beginning to believe pain pills is not the answer for Fibro. I just hope someone out there in the medical field can find more answers for all of us whom suffer with this horrible pain.
Kathiat40 hope you find a way from being bedridden, we all have to struggle with this issue, give ourselves encouragement. If you have the chance for Water Therapy keep in touch here of how you are doing. We all try to reach out to one another here.
BeHappy2
bluelakelady
12-18-2007, 09:36 AM
hi,
time to clarify, sorry. my blood tests are abnormal, well, because i am, giggle. naw, well just a bit, tee hee. i have r.a., o.a., d.j.d. i have had 4 strokes, thyroid junk, and a bunch of other stuff i have written down because i always forget them.
normal blood work is the goal of us all so you get a head start. lucky you!! thats cool.
you know i spent the first years trying to find a magic pill. then i found therapy and realized my magic pill lay within me all along. i call it attitude, determination, perserverance, depending on what i feel at the time.
i have been completely debased by this fibro, unhinged, stuck in the cycle of pain. i refuse to allow any alteration of my body to ever do that to me again. pain and i are old buds now. we work together, sometimes in harmony, sometimes not. what we do not do is decide this is the best it can be. we know better.
peace and warm water,
blue
time to clarify, sorry. my blood tests are abnormal, well, because i am, giggle. naw, well just a bit, tee hee. i have r.a., o.a., d.j.d. i have had 4 strokes, thyroid junk, and a bunch of other stuff i have written down because i always forget them.
normal blood work is the goal of us all so you get a head start. lucky you!! thats cool.
you know i spent the first years trying to find a magic pill. then i found therapy and realized my magic pill lay within me all along. i call it attitude, determination, perserverance, depending on what i feel at the time.
i have been completely debased by this fibro, unhinged, stuck in the cycle of pain. i refuse to allow any alteration of my body to ever do that to me again. pain and i are old buds now. we work together, sometimes in harmony, sometimes not. what we do not do is decide this is the best it can be. we know better.
peace and warm water,
blue
Grapedy
12-26-2007, 09:22 PM
Every person is different. Some people have really out of whack bloodwork, some have mildly out of whack bloodwork, and others (like me) have completely normal bloodwork. That's why FM cannot be diagnosed with a lab test.
As much as it hurts, exercise is crucial. I haven't been able to attend my water class regularly in nearly 3 months now and I can feel it. I'm very much looking forward to getting back into my exercise routine once I get back from visiting family. I know it will help tremendously.
Keep it light. Water classes in a heated pool are some of the best. But if you don't have access to a heated pool, just plain walking will also help. I do a combination of both. My gym has a heated therapy pool and a cushioned indoor walking track. I also like to spend 5-10 minutes sitting in the hot tub afterwards. Very relaxing and for me it helps to finish what the exercise started, not to mention how it makes the pain melt away completely for a few minutes.
Finding the right med combination will also help. I got lucky and hit the right drug on the first try, but that's extremely rare. It may take a little while, but you'll find a rhythm and be able to take back your life.
As much as it hurts, exercise is crucial. I haven't been able to attend my water class regularly in nearly 3 months now and I can feel it. I'm very much looking forward to getting back into my exercise routine once I get back from visiting family. I know it will help tremendously.
Keep it light. Water classes in a heated pool are some of the best. But if you don't have access to a heated pool, just plain walking will also help. I do a combination of both. My gym has a heated therapy pool and a cushioned indoor walking track. I also like to spend 5-10 minutes sitting in the hot tub afterwards. Very relaxing and for me it helps to finish what the exercise started, not to mention how it makes the pain melt away completely for a few minutes.
Finding the right med combination will also help. I got lucky and hit the right drug on the first try, but that's extremely rare. It may take a little while, but you'll find a rhythm and be able to take back your life.