I have read, researched and over analysed this condition since being told I (might) have it and then had a confirmed diagnosis of Fibromyalgia. Most books and articles go through the symptoms, side effects, medications and compatible treatments such as physio, relaxation, acupuncture etc but what about explaining to someone what its like to live with this, what are the daily struggles we face and how hard is it when you try to explain to friends and family and they sadly still just haven't a clue.
I have had another blog running for the past 2 years but instead of the fun, happy blog it used to be I started to fill it more and more with my life with Fibromyalgia and its not a fun topic so I have set up this blog to hopefully help those that want to learn more about the condition (both with Fibromyalgia and friends and family who want to find out more) but also as some kind of therapy for myself.
So who am I?
Mother, Wife, Nurse, Friend, Sister, Aunt, Facebook addict (well mainly to Candy Crush & Criminal Case, I claim they help with my brain power) blogger but most importantly I have taken on the title of a Fibro warrior.
So lets gets the basics out of the way and I really hope this will be an interactive blog, where people can feel free to post comments, talk about themselves etc etc.
I have also set up a Facebook page that will do a direct link to my blog on called -
Fibromyalgia - Living it - Fighting it!
So what is Fibromyalgia??????????
is a good start but doesn't even touch the many symptoms associated with this condition.patient.co.uk describe Fibromyalgia as :
Fibromyalgia causes pains and tenderness in many areas of the
body, and tiredness. You may also have other symptoms. There is no
simple cure. However, there are various treatments that ease symptoms in
many cases. Non medication treatments which may help include exercise,
heated pool treatment, and cognitive behavioural therapy (CBT).
Medication that may help include a painkiller called tramadol,
antidepressants (for their pain-relieving action) and some other
medicines listed below.
What is fibromyalgia?
The word fibromyalgia means pain (algia) coming from the muscles (my) and fibrous tissues (fibro) such as tendons and ligaments. Most people with fibromyalgia also have other symptoms in addition to the pains - see below. Therefore, fibromyalgia is sometimes called fibromyalgia syndrome (FMS). It is a chronic (persistent) condition. Fibromyalgia does not affect the joints, and so is not an arthritis.What causes fibromyalgia?
The cause of fibromyalgia is not known. However, research has shown that people with fibromyalgia have certain subtle changes in some chemicals in the brain and nervous system. For example, there seems to be a minor change in the level of certain brain chemicals called neurotransmitters. These are the chemicals responsible for transmitting messages between nerves and between brain cells. Research studies have also shown that people with fibromyalgia tend to have an increased amount of a chemical called substance P in the fluid that bathes the brain and spinal cord (the cerebrospinal fluid (CSF)). This substance may be involved in the way pain messages are transmitted.A current main theory is that people with fibromyalgia have an oversensitivity to pain signals in the brain. This is called central sensitisation. This may be due to various minor changes in brain chemicals. What triggers or causes these changes is not known.
Note: the term fibromyalgia has been used for a long time. However, because the cause is now thought to be due to the processes described above in the brain and spinal cord, the term fibromyalgia does not accurately describe the condition. That is, there is little evidence that the disease is due to a problem with peripheral tissues such as muscles, tendons and ligaments (although the pain is often felt in these tissues).
Who gets fibromyalgia?
About 1 in 50 people develop fibromyalgia at some stage. It is seven times more common in women than in men. In most cases it first develops between the ages of 25 and 55. It is less common in younger adults, and is uncommon in children.What are the symptoms of fibromyalgia?
The main symptoms are pains felt in many areas of the body, and tiredness. Some people also develop other symptoms. The severity of symptoms varies from person to person.Pain
Pain can occur in any area of the body. Typically, many areas of the body are affected, and some people feel the pain all over. The neck and back are the sites that are often the most painful. The severity of the pain can vary from day to day. The pains may be made worse by stress, cold or activity. After a night's sleep, you may also feel quite stiff for a few hours. Many areas of the body may also be quite tender.Tiredness
Tiredness (fatigue) is common, and is sometimes severe. In some cases it is more distressing than the pain. It is also common to have a poor sleep pattern. You may wake feeling exhausted. Many people feel worst first thing in the morning, but improve by the afternoon. Even a small amount of activity may make you tired. The tiredness may cause you to have poor concentration.Various other symptoms have been reported by people with fibromyalgia. Also, there are a number of other conditions that often occur at the same time as fibromyalgia. As a consequence, quite a number of other symptoms may occur in people with fibromyalgia. The following are perhaps the most common, but it is not an exhaustive list of every possible symptom that may occur:
- Headaches are common.
- Irritable bladder is common - you may need to go to the toilet more frequently than usual.
- Irritable bowel syndrome occurs commonly in people with fibromyalgia - with abdominal pains, sometimes with diarrhoea, constipation or bloating.
- About 1 in 5 people with fibromyalgia also have restless legs syndrome (see separate leaflet called 'Restless Legs Syndrome' for more detail).
- Painful periods occur in some women with fibromyalgia.
- Pins and needles in fingers and/or toes.
- Some people describe a feeling as if their hands or feet are swollen (although they are not actually swollen).
- Depression or anxiety develops in some people. It is not clear whether these are part of FMS, or develop as a result of having this condition.
- Some people with fibromyalgia also have chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
How is fibromyalgia diagnosed?
To make a firm diagnosis, symptoms should include widespread pain involving both sides of the body, above and below the waist, as well as the neck, back and pelvis, and have been present for at least three months.
A doctor's examination will find tenderness in various parts of the body. During the examination a doctor may press firmly with a thumb on various parts of your body. The amount of pressure used does not cause pain in people without fibromyalgia. However, the pressure typically causes people with fibromyalgia to wince with pain. The increased sensitivity to pressure (being tender to mild pressure) can be in many places in the body, and may be all over. However, a doctor may press on certain specific sites (as shown in the diagram). These sites are generally fairly sensitive areas and the easiest to check for tenderness which is typical in people with fibromyalgia.
Apart from finding areas of tenderness, the examination by a doctor will usually find no other abnormality. There is no laboratory test that confirms the condition. However, tests are advised in some cases to rule out other diseases that can cause similar symptoms. For example, your doctor may do some blood tests to rule out an underactive thyroid, early arthritis, etc.
Is fibromyalgia serious?
Fibromyalgia is not an arthritis, it is not due to cancer, and does not damage any joint or tissue. It does not shorten expected lifespan. In some cases, symptoms ease or go after a few months. However, in many cases it is a chronic (persistent) condition which tends to wax and wane in severity. Quality of life can become affected.What is the treatment for fibromyalgia?
There is no cure for fibromyalgia. Treatments aim to reduce symptoms as much as possible. Over the years a range of different treatments have been advocated with variable rates of success.(care of patient.co.uk)
Now my only complaint about that above description by patient.co.uk is "Quality of life can become affected" to ANYONE who is living with this condition I'd say that was an understatement if ever I've heard one!
By far the best descriptions are by those who have the condition
Understanding Fibromyalgia If You Are a Friend or Family Member of a Sufferer
As a friend or family member of a Fibromyalgia sufferer, you may find that the person does not seem to be the type that likes to touch through handshakes, hugs, and so on. It is important to understand that this is not truly personal. As a sufferer of Fibromyalgia, I have hurt the feelings of others because I shy away from hugging and other types of physical activity, like play wrestling and so on. It is hard to explain to people that you simply hurt very badly at times, and it is easier to avoid these activities to save yourself some physical pain. If you know a Fibromyalgia sufferer that does this, do not take offense to it. We may really want to play around and hug and other things, but sometimes, the pain is so overwhelming, we just cannot.
If you are trying to understand Fibromyalgia because you are a friend or family member of a sufferer, you should understand that it is often difficult for the sufferer to make plans and commit to things. Some days, it is very hard to simply get out of bed. Other days, it takes all that we have to simply clean the house - even if the mess is small. I have found that my family and friends often do not understand why I do not visit them very often, or why I do not make plans with them very often. It is very hard to explain that I must use the energy that my body has as efficiently as possible. I have two children, both boys. My oldest is six years old and my youngest is four years old. I home school them, and write for various online venues. In addition, I keep house and do most of the shopping. Because of the amount of things that I have to do, it is difficult at times, to exert any more energy. It is important to me not to allow my immediate family to suffer, so, many times I have to postpone activities with friends and other family members. It is not that I want to; it just ends up that way sometimes. Do not be offended if you live outside of the home of the Fibromyalgia sufferer, and do not see them very often. Just try to understand it. Keep in touch as often as you are able by email, instant messaging, snail mail, and/or telephone. Not only will it keep the relationship positive and productive, it will mean a lot to the Fibromyalgia sufferer that you care and are willing to step up and take the plate when they are sometimes unable to.
If you are working to understand Fibromyalgia, there is another important aspect that you should be aware. Fibromyalgia sufferers often lack the characteristics of a good memory. This is often referred to as "Fibro Fog". It is often difficult to remember small details. We may misplace items frequently, or have to be reminded of things often. It is not that we purposely forget important details, we actually try very hard to remember them, and it is just that it is a part of our illness. If you are a friend of family member of a Fibromyalgia sufferer, it is important to understand fibro fog and accept it.
The above listed suggestions are really just the tip of the iceberg when dealing with a friend or family member that has Fibromyalgia. There are many other things that you can do to assist the person with Fibromyalgia as well. The Fibromyalgia sufferer will not ask for help. It is partly from pride, and the other part is not wanting to inconvenience others. Please refer to the following list for other ways that you may assist the sufferer:
- If you must do some shopping, call the sufferer to see if they would like to ride with you or if you can pick up anything for them. It is often difficult to get out of the house, drive, and walk around a large store if you are in pain. This would help them a lot.
- If the sufferer has children, offer to take them for a couple of hours or come over to sit with them so that the sufferer can enjoy a warm bath, or a nap. It is often quite nice to be some peace and quiet - especially if the home is always bursting with energy.
- You may want to help the sufferer with various tasks, such as cleaning up the house, laundry, and/or yard work. It is often difficult to perform these tasks, and the help will be appreciated.
- Keep in touch with the sufferer. They often feel as if they burden people, and that people may not care anymore...if you keep in contact with them and let them know that they are still loved and valued, they will be very thankful.
- The
Fibromyalgia patient must keep their doctor appointments. If you are
able, encourage them to pursue treatments and medical care. One way you
can do this is to offer to take them to appointments or ride with them.
....
8 months ago I could do anything I wanted (obviously within reason and without hurting anyone else lol) In October 2012 I started to catch colds left right and centre, with pains in my right shoulder I was put on numerous courses of antibiotics nad as soon as the virus went another came kicking straight at its heels. I'm a busy women with an extremely active 2 years old, working full time on a busy oncology ward as a staff nurse on shifts and when I was off was helping my husband with his business. So I blamed doing too much, blamed the shifts I was doing at work, tried to slow down a bit but by November was really suffering and my hip kept clicking out and causing immense pain when I walked (MY patients even said I should get into bed rather than them, bless them).
One shift (well my last) I was working a 13 hours shift and it was horrendous, now my job is extremely physical anyway but also emotionally as you can expect with Cancer patients. Obviously I am unable to go into great details here for patients confidentiality but ALL of my patients on shift were terminal, and patients were being rushed in that were dying within hours. We didn't ave enough side rooms and we had relatives staying by the nurses stations just crying and crying and we were helpless to help them other than consoling. Then I argued with a Doctor and I don't do that I'm very professional but he hadn't been and as advocate for my patient I was fuming. I actually felt like I had an out of body experience where I could see everything that was going on around me and the room just kept spinning and spinning. I went to the bathroom and cried and cried and actually couldn't stop crying I only had another half an hour of my 13hr shift. But was sent home and 6 months later haven't gone back.
Whilst off on sick leave throughout December I thought I'd get better with rest, I didn't I got worse, that ruled out my theory of it being my job or doing too much as I could barely move for pain which had now spread to both hips, both shoulders, ankles, chest pain, back spasms (awful) neck spasms (awfuller) knee, elbow well you get the idea.
Various various meeting with GP's and various Gps at that and I was referred to a Rheumatologist. I saw her in January 2013, very suprised by how fast I got in to see her which also made me worry. The care I received was great though, lots of blood tests that as a nurse i'd never heard of, I had a full body scan to rule out any other life threatening conditions. I was clear.
The consultant spoke to me after the results so this was back in February and said she thought it was most likely Fibromyalgia (never heard of it) and not to worry as its very common (hmmm) and to see her again in May (aaaarghhhhhh).
Since then my condition has only had brief periods of making me feel better, in fact on one occasion I even went to my work to say I was hoping to restart really soon (speaking too soon and all that).
Now I've just looked back at what i've written and its all about the PAIN because with pain its really all you can think of but ............................... I have major depression, get dizzy, confused, can't remeber anything and have trouble pulling a sentence together. Constant headaches, bowel probelms, NO mobility without pain, unable to even lift a full kettle without pain and carrying my little one is impossible.
In June I was diagnosed with Fibromyalgia and discharged (burst into tears) and referred to the pain clinic and to start Hydrotherapy with a physio.
That's where I am now, So in my future blogs I'll be doing a blog that's more like a diary - living and fighting Fibromyagia day by day!!
TTFN!!!!
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