B
butterflycharm
Guest
I have Fibromyalgia and Ankylosing Spondylitis. It has taken me a long time to be able to tell the difference between the two. The Fibro is an all-over achy coming down with flu feeling and can be more painful in one area this week and in another area of my body next week or month. Fibro hurts more in the fleshy part near joints. I have good days and I may go several days or weeks without a flare up but going longer than a few days without a flare up is very rare but the flare-ups are not completely debilitating.
Ankylosing spondylitis - (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It is a different kind of pain. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. The inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.
With the AS my pain has the same pattern every day. My lower back and pelvic bones hurt every day and get worse when I get still for more than 30 min to an hour. I set my alarm for 30 min before I have to get up so I can stretch and move my hips around to get the spinal fluid moving so I can get out of bed. It also has flare ups when it is worse and during those times my heels, shoulders, feet, hips, ribs and sometimes hands ache and hurt really bad. Walking is difficult during a bad flare up but not moving at all is very painful! I also get the uveitis in my eyes which is what led to the diagnosis of the AS. I had uveitis 5 times during a 14 month period and the eye doctor said she thought something else was going on besides the Fibro. She ordered a blood test. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS. I have it.
There is no set regimen that will keep away the pain or the damage from the inflammation.
Massage- If the Fibro is not too bad then a massage helps to get the fluids going and helps with the pain of the AS. If the Fibro is flaring up then I cannot stand to be touched for a massage.
Stretching & light exercise help both but I have to be very careful about the types of exercising.
Rest- NEVER get enough! I cannot lie for long periods of time. The spinal fluid gets thick like ketchup when I am still for long periods of time so I have to get up and move around about every 45 min. I am always tired! The pain usually exceeds the limits of any pain medication or sleeping pill and the pain wakes me up every time I try to turn over in bed.
Diet & nutrition Of course healthy is better. I seem to be sensitive to food additives in processed foods and I notice when I eat out a lot or eat pre-made processed foods (frozen dinners or something from a box) I tend to feel worse. The doctor told me to eat foods in their natural form; i.e., broccoli and not broccoli casserole, nothing mechanically separated and reformed (lunch meat, chicken nuggets, etc...) Hmmm mechanically separated, isnt that road kill???
The diet part is the worse part for me because I am NOT a picky eater I like every food I have ever tried fixed some way. And I love coffee. I have stopped all sodas and try to drink mostly water and some tea and COFFEEEEE. I will work on that one of these days.
It is what it is and I just have to go with the flow. I never miss work due to these illnesses. I figure I feel just as bad at work or at home so might as well be at work making money instead of lying around. As long as I can go and do I will!
Ankylosing spondylitis - (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It is a different kind of pain. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. The inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.
AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.
With the AS my pain has the same pattern every day. My lower back and pelvic bones hurt every day and get worse when I get still for more than 30 min to an hour. I set my alarm for 30 min before I have to get up so I can stretch and move my hips around to get the spinal fluid moving so I can get out of bed. It also has flare ups when it is worse and during those times my heels, shoulders, feet, hips, ribs and sometimes hands ache and hurt really bad. Walking is difficult during a bad flare up but not moving at all is very painful! I also get the uveitis in my eyes which is what led to the diagnosis of the AS. I had uveitis 5 times during a 14 month period and the eye doctor said she thought something else was going on besides the Fibro. She ordered a blood test. Most individuals who have AS also have a gene that produces a "genetic marker" - in this case, a protein - called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS. I have it.
There is no set regimen that will keep away the pain or the damage from the inflammation.
Massage- If the Fibro is not too bad then a massage helps to get the fluids going and helps with the pain of the AS. If the Fibro is flaring up then I cannot stand to be touched for a massage.
Stretching & light exercise help both but I have to be very careful about the types of exercising.
Rest- NEVER get enough! I cannot lie for long periods of time. The spinal fluid gets thick like ketchup when I am still for long periods of time so I have to get up and move around about every 45 min. I am always tired! The pain usually exceeds the limits of any pain medication or sleeping pill and the pain wakes me up every time I try to turn over in bed.
Diet & nutrition Of course healthy is better. I seem to be sensitive to food additives in processed foods and I notice when I eat out a lot or eat pre-made processed foods (frozen dinners or something from a box) I tend to feel worse. The doctor told me to eat foods in their natural form; i.e., broccoli and not broccoli casserole, nothing mechanically separated and reformed (lunch meat, chicken nuggets, etc...) Hmmm mechanically separated, isnt that road kill???
The diet part is the worse part for me because I am NOT a picky eater I like every food I have ever tried fixed some way. And I love coffee. I have stopped all sodas and try to drink mostly water and some tea and COFFEEEEE
. I will work on that one of these days.It is what it is and I just have to go with the flow. I never miss work due to these illnesses. I figure I feel just as bad at work or at home so might as well be at work making money instead of lying around. As long as I can go and do I will!
