Living With Fibromyalgia
Living with fibromyalgia isn’t easy. I have a neuroma in my back, which makes it even harder. I believe the tumor is what brought on the fibromyalgia. Experts believe that an illness or injury brings on fibromyalgia in the patients who come down with the illness. Some experts believe that people are genetically inclined to come down with the illness.
It could be either way with me. My family history is full of illness so it could have predisposed me to the illness fibromyalgia. I believe my genetics have more to do with both.
One of the hardest things for me to adjust to is limiting myself. For those of you who don’t know how fibromyalgia works let me explain a few things.
Fibromyalgia affects me everyday but every day is a different level of pain throughout my body. It doesn’t just affect one part of my body either. It affects my entire body. Fibromyalgia also works in flares. Each flare is different for each person and each flare will also vary in pain level.
When I have a flare, it usually is real bad. My flares make me feel as if I have come down with a bad case of the flu. I will have pain around my joints, and my muscles will burn like they are on fire. My legs will feel like they are weighed down with lead. I also get headaches with these flares sometimes and they are migraines. Unfortunately though I have a constant headache everyday but they have become something I have learned to just live with.
So now back to the hardest thing that I had to learn to adjust to. On a good day I have higher energy and my body feels almost normal. When I say almost normal I am referring to how I felt before all these health problems came about. It is hard for me to not over do myself. That is the most important thing to learn if you suffer from fibromyalgia. Even though you feel great and are able to do the things you want to do on the good day, if you over do yourself, the next day could be a very bad flare day. It is important to conserve some of that good energy instead of using it up in one swoop.
Another thing I’ve had to learn to do is have a routine bed time. Except on rare occasions I have set myself up to where I go to bed no later than midnight. Not to say I don’t go to bed earlier because many nights I do. I have just made the cut off midnight just so I have a limit set that I can live with the next day. If I stay up later then midnight, the next day is a very bad flare day for me every time. Sometimes it will take me two days to make up for one night of not going to bed before midnight. I have come to realize midnight is the latest my body can tolerate well enough to function the next day.
Most people with fibromyalgia seem to be helped with heating pads, hot tubs, and hot showers. I do take pretty hot showers, but usually right afterwards I got to get into bed because my legs will feel like Jell-O. That is not a normal symptom of fibromyalgia so I have to be checked for MS next month by my new neurologist.
I do find great comfort in my neck wrap. I heat that sucker up and it is like heaven touching my shoulders and neck area on tough days.
I have weakness in my arms and legs, which again are not normal symptoms for fibromyalgia so that is why the new neurologist wants to check some other things out in myself.
Fatigue is very bad for someone with fibromyalgia. My fatigue is tough to live with too. When you get tired going from one room in the house to another you know something isn’t right. Fatigue has a lot to do with the sleep disturbances fibromyalgia patients have. Most patients with fibromyalgia fail to get the restorative sleep stage through the night. Experts have found that when REM sleep begins for a person with fibromyalgia the brain has activity that begins which gives the person a feeling of being awake in the middle of night. It isn’t abnormal to wake up many times of the night if a person has fibromyalgia. I have a HUGE problem with my sleep. Right now I take stuff to help me sleep, but I am going in for a sleep study to be sure I do not have sleep apnea.
Getting diagnosed with fibromyalgia is a great hurdle for most people who actually do have it. It took me almost two years to figure out what was wrong with me and still today there are hints that I might have MS on top of fibromyalgia. It is hard to find because there is no blood test, MRI, or other diagnostic test to prove you have it. A doctor has to do an elimination process of other illnesses that fibromyalgia mimics. The two big ones are lupus and rheumatoid arthritis. It is important to be your own advocate too where your healthcare is concerned. Don’t be afraid to ask questions about suspected illnesses you might think you have that seem to be a lot like fibromyalgia. A good doctor will listen to you and take your concerns very seriously. If they are familiar with fibromyalgia they know the difficulty in diagnosing it properly.
IBS, irritable bowel syndrome, is not something I like talking about but it is a HUGE problem with most fibromyalgia sufferers too. This is why diet is a crucial part of adjusting to the illness too. They have to bring more fiber friendly foods into their diets so to avoid any major problems concerning the bowels.
There are many other things that I suffer with concerning fibromyalgia but at this point and time I just don’t have the energy to finish up with those things.
I have been living with fibromyalgia now for almost four years. I have only had a diagnosis for the illness about two years now. There is no cure for fibromyalgia so I will suffer with this for the rest of my life.
If there was any advice I’d give to someone newly diagnosed with fibromyalgia it would be to pace yourself every day, and be sure to do things for yourself to make your illness as easy to live with as possible. That will require some dedication to yourself that you may not possess. It may require you to finally put yourself first in situations you normally would not, but my advice is to do so. Not only do you deserve it, but also you will definitely need it.
Posted on Friday, January 23, 2009, in fibro fog, Fibromyalgia, health, journal, life, medical, medicine, personal, sleep disturbance, thoughts and tagged fibro fog, Fibromyalgia, fms, health, journal, life, medical, personal, thoughts. Bookmark the permalink. Leave a comment.