Friday, October 5, 2007
Anti-Inflammatory drug recall...
The drug, Prexige, I have been taking for the chronic inflammation in my hip has been pulled from the shelves by the FDA.... I fully understand why, it has been proven to be very dangerous including two liver transplants and 2 deaths associated with it. However, it actually worked for me, so this means I will have to start from scratch to find something that will give me the level of relief I have had for the last month... by no means has it been perfect, but it has been so much better than before. Ah well... maybe the next one will be even better.
Wednesday, October 3, 2007
Ok... I'm back...
So after a couple of months of being out of the loop, I think I'm back.... A couple of doctor's appointments later and things seem to be getting abit more on track. I have managed to get onto Lyrica for my flare ups and on Prexige for my hip pain and yesterday my specialist agreed to refer me to a sleep clinic... go me!
For all you out there I found a great website - check it out: http://www.butyoudontlooksick.com/ and also take a look at the Spoon Theory... very helpful in trying to explain what it is like to be ill even if you don't look it.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
For all you out there I found a great website - check it out: http://www.butyoudontlooksick.com/ and also take a look at the Spoon Theory... very helpful in trying to explain what it is like to be ill even if you don't look it.
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Friday, July 20, 2007
Treament Options....
Ugg... I planned on talking about the treatment options out there for fibromyalgia... but as I sit here and think on how well my treatment has gone so far (not that well if you are wondering) I am just not sure what I can tell all of you. I guess I could research all the things that are supposed to work or help... but right at the moment I don't have the energy. I guess I'm feeling a little frustrated, as nothing I seem to be doing at the moment is working. The drugs that are supposed to help with sleep and pain... well don't... it's like pulling teeth to get even a mild pain killer from my doctor to help address my chronic pain, which I'm sure if we could get a better handle on would improve things overall. But no... don't listen to the former Registered Massage Therapist who actually has an pretty extensive education and understanding of the body and how it works... how everything is linked together... This treating each thing seperately DOES NOT work... ARRRGGGGG So now I have to make the appointment and probably be told to suck it up again... great....
Tuesday, June 26, 2007
Seeking Medical Advice... When to do it??
Fibromyalgia can be very confusing and hard to get a diagnosis for. If you have been experiencing general aching or widespread pain for more than three(3) months that is also accompanied by fatigue you may want to bring this to the attention of your Doctor. The symptoms of fibromyalgia mimics other diseases such as low thyroid hormone production (hypothyroidism), polymyalgia rheumatica, neuropathies, lupus, multiple sclerosis and rheumatoid arthritis. All of which are worse than having Fibromyalgia.
Screening: What to expect...
For me the screening process started with my primary health care practitioner (otherwise known as my Family Doctor). Having a background in Massage Therapy gave me a bit of an advantage as I had studied fibromyalgia in school and also worked with several woman who suffered from it. I pretty much came out and told him that I wanted to be tested and to see a Rheumatologist in regards to fibromyalgia. But for those of you with little or no knowledge here is the process:
Assesment:
First talk to your Doctor about your pain and fatigue - ask their advice on what maybe causing it. You may have to go through several hoops before you get to the topic of fibromyalgia, but don't let them keep steering you away... I know that some Doctor's do not believe fibromyalgia is a true health issue. Be your own advocate, because unfortunately there maybe no one else.
Basic guidelines have been put in place to help with diagnosis, you must have experienced widespread aching pain for at least three months(anything over 3 months is considered chronic), pain must follow certian patterns:
- pain on both sides of the body
- pain above and below the waist
- pain along the length of the spine
and have a minimum of 11 of 18 specific locations on your body that are abnormally tender under relatively mild, to firm pressure. These points are:
- The left or right side of the back of the neck, directly below the hairline
- The left or right side of the front of the neck, above the collar bone (clavicle)
- The left or right side of the chest, right below the collar bone
- The left or right side of the upper back, near where the neck and shoulder join
- The left or right side of the spine in the upper back between the shoulder blades (scapula)
- The inside of either arm, where it bends at the elbow
- The left or right side of the lower back, right below the waist
- Either side of the buttocks below the hip bones
- Either knee cap
When tested these tender points have to occur on both sides of the body, in a fairly even pattern.
Once your family doctor has done this preliminary assessment and agrees that it may be fibromyalgia request to be referred to a Rheumatologist. As fibromyalgia is considered to be under rheumatoid conditions. The specialist will then order a variety of tests. There isn't a single, specific diagnostic laboratory test. In fact, before receiving a diagnosis of fibromyalgia, you may go through several medical tests, such as blood tests and X-rays, only to have the results come back normal. Although these tests may rule out other conditions, such as rheumatoid arthritis, lupus and multiple sclerosis it will not confirm fibromyalgia. A diagnosis of fibromylagia will be a combination of your normal results and the pressure point results.
For myself, I went through having X-rays, lots of blood taken and a bone scan all of which came back normal but including the fact that I had over 13 (that's when the Dr. stopped counting)out of 18 pressure points I recieved the diagnosis of fibromyalgia. Now my specialist put it as good news... because I didn't have any of the other diseases... he said "Well I have good news... you only have fibromyalgia."
Up next: Treatment options...
Screening: What to expect...
For me the screening process started with my primary health care practitioner (otherwise known as my Family Doctor). Having a background in Massage Therapy gave me a bit of an advantage as I had studied fibromyalgia in school and also worked with several woman who suffered from it. I pretty much came out and told him that I wanted to be tested and to see a Rheumatologist in regards to fibromyalgia. But for those of you with little or no knowledge here is the process:
Assesment:
First talk to your Doctor about your pain and fatigue - ask their advice on what maybe causing it. You may have to go through several hoops before you get to the topic of fibromyalgia, but don't let them keep steering you away... I know that some Doctor's do not believe fibromyalgia is a true health issue. Be your own advocate, because unfortunately there maybe no one else.
Basic guidelines have been put in place to help with diagnosis, you must have experienced widespread aching pain for at least three months(anything over 3 months is considered chronic), pain must follow certian patterns:
- pain on both sides of the body
- pain above and below the waist
- pain along the length of the spine
and have a minimum of 11 of 18 specific locations on your body that are abnormally tender under relatively mild, to firm pressure. These points are:
- The left or right side of the back of the neck, directly below the hairline
- The left or right side of the front of the neck, above the collar bone (clavicle)
- The left or right side of the chest, right below the collar bone
- The left or right side of the upper back, near where the neck and shoulder join
- The left or right side of the spine in the upper back between the shoulder blades (scapula)
- The inside of either arm, where it bends at the elbow
- The left or right side of the lower back, right below the waist
- Either side of the buttocks below the hip bones
- Either knee cap
When tested these tender points have to occur on both sides of the body, in a fairly even pattern.
Once your family doctor has done this preliminary assessment and agrees that it may be fibromyalgia request to be referred to a Rheumatologist. As fibromyalgia is considered to be under rheumatoid conditions. The specialist will then order a variety of tests. There isn't a single, specific diagnostic laboratory test. In fact, before receiving a diagnosis of fibromyalgia, you may go through several medical tests, such as blood tests and X-rays, only to have the results come back normal. Although these tests may rule out other conditions, such as rheumatoid arthritis, lupus and multiple sclerosis it will not confirm fibromyalgia. A diagnosis of fibromylagia will be a combination of your normal results and the pressure point results.
For myself, I went through having X-rays, lots of blood taken and a bone scan all of which came back normal but including the fact that I had over 13 (that's when the Dr. stopped counting)out of 18 pressure points I recieved the diagnosis of fibromyalgia. Now my specialist put it as good news... because I didn't have any of the other diseases... he said "Well I have good news... you only have fibromyalgia."
Up next: Treatment options...
Thursday, June 21, 2007
No Big Post Today...
Sorry... but the next installment will have to wait another day... having a bit of a flare up this afternoon. Will be back soon.
Tuesday, June 19, 2007
So What is IT Anyway...
Fibromyalgia:
- a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points
- tender points cause pain when pressure is applied to them
- is more common in women than in men
- previously known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.
-intensity of symptoms may vary, but will probably never disappear completely
What it is not:
- it is NOT a progressive or life-threatening illness
- there are treatment options and self-care steps can improve symptoms and your general health.
Signs and symptoms
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Common signs and symptoms include:
Widespread pain:
-general overall achiness or pain throughout the body with specific areas of your body when pressure is applied cause pain, including the back of your head, upper back and neck, upper chest, elbows, hips and knees
- pain generally persists for months at a time and is often accompanied by stiffness.
Fatigue and sleep disturbances:
- people with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep
-possibly the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness which causes them to miss the deep restorative stage of sleep
- nighttime muscle spasms in legs and restless legs syndrome also may be associated with fibromyalgia
Irritable bowel syndrome (IBS):
- constipation, diarrhea, abdominal pain and bloating associated with IBS are common
Headaches and facial pain:
- may also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders
Temporomandibular joint (TMJ) dysfunction:
- affects the jaw joints and surrounding muscles
- causing jaw pain and headaches
Heightened sensitivity:
- common to hear reports of being sensitive to odors, noises, bright lights and touch
Other common signs and symptoms include:
Depression
Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating
Mood changes
Chest pain
Dry eyes, skin and mouth
Painful menstrual periods
Dizziness
Anxiety
Causes:
- UNKNOWN
- maybe related to a previous trauma - eg. accident, surgery, illness
- there are numerous theories of what may cause fibromyalgia but no know cause
Next up: Seeking medical advice, screening and diagnosis
- a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points
- tender points cause pain when pressure is applied to them
- is more common in women than in men
- previously known by other names such as fibrositis, chronic muscle pain syndrome, psychogenic rheumatism and tension myalgias.
-intensity of symptoms may vary, but will probably never disappear completely
What it is not:
- it is NOT a progressive or life-threatening illness
- there are treatment options and self-care steps can improve symptoms and your general health.
Signs and symptoms
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Common signs and symptoms include:
Widespread pain:
-general overall achiness or pain throughout the body with specific areas of your body when pressure is applied cause pain, including the back of your head, upper back and neck, upper chest, elbows, hips and knees
- pain generally persists for months at a time and is often accompanied by stiffness.
Fatigue and sleep disturbances:
- people with fibromyalgia often wake up tired and unrefreshed even though they seem to get plenty of sleep
-possibly the result of a sleep disorder called alpha wave interrupted sleep pattern, a condition in which deep sleep is frequently interrupted by bursts of brain activity similar to wakefulness which causes them to miss the deep restorative stage of sleep
- nighttime muscle spasms in legs and restless legs syndrome also may be associated with fibromyalgia
Irritable bowel syndrome (IBS):
- constipation, diarrhea, abdominal pain and bloating associated with IBS are common
Headaches and facial pain:
- may also have headaches and facial pain that may be related to tenderness or stiffness in their neck and shoulders
Temporomandibular joint (TMJ) dysfunction:
- affects the jaw joints and surrounding muscles
- causing jaw pain and headaches
Heightened sensitivity:
- common to hear reports of being sensitive to odors, noises, bright lights and touch
Other common signs and symptoms include:
Depression
Numbness or tingling sensations in the hands and feet (paresthesia)
Difficulty concentrating
Mood changes
Chest pain
Dry eyes, skin and mouth
Painful menstrual periods
Dizziness
Anxiety
Causes:
- UNKNOWN
- maybe related to a previous trauma - eg. accident, surgery, illness
- there are numerous theories of what may cause fibromyalgia but no know cause
Next up: Seeking medical advice, screening and diagnosis
Monday, June 18, 2007
1st Post
Having fibromyalgia really sucks, ask anyone who suffers from it and they will tell you just how much it can suck. I am sure there are those out there who suffer worse symptoms and flare ups than I do. I wanted to start this blog as a way for me to be able to voice, air out and just plain bitch about the negative impact that this has caused and will continue to cause on my life.
I also want to start something where I can talk openly and honestly about having fibromyalgia and maybe even connect with others who are suffering. I am hoping to be able to include helpful information, articles and medical information for those who suffer from it and those who know someone suffering from it.
All and any comments, links to articles, stories etc. are greatly appreciated. There may not be a cure but maybe together we can find comfort and maybe make a change in how fibromyalgia is viewed.
I also want to start something where I can talk openly and honestly about having fibromyalgia and maybe even connect with others who are suffering. I am hoping to be able to include helpful information, articles and medical information for those who suffer from it and those who know someone suffering from it.
All and any comments, links to articles, stories etc. are greatly appreciated. There may not be a cure but maybe together we can find comfort and maybe make a change in how fibromyalgia is viewed.
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