Response To A Forum Post

As I've mentioned in the past, I am a member of a Fibromyalgia forum over on MDJunction.  I read a post this morning authored by the daughter of a woman who has fibromyalgia.  It touched my heart because any time a family member or friend reaches out to try and understand this disease and how it affects their loved one is important and special.  We want to be understood and we need the support of those that love us.

I'm not including the post by this adult daughter because it's not mine to share.  However, I have chosen to put my response to it here on the blog in hopes that it may help others to see the picture of fibro from a patient's viewpoint.

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I'm going to keep scrolling up and reading your post so that I can respond to things you mentioned. But before that, I want to say that everything I write here are only my opinions/beliefs based on my own experiences with having fibromyalgia.

I think that fibromyalgia is a progressive disease of the central nervous system, including the brain/spine/nerves. Our pain does get worse over the years, we do become more debilitated by the pain and other things that often times go hand-in-hand with fibromyalgia. Those things can be: Irritable Bowel Syndrome, spastic bladder, tempomandibular disease (jaw disease), migraines, sleep apnea, just to name a few.

I also believe that even as fibromyalgia progresses, it can also go into remission for periods of time. So you have people who become better, more active, more like their old selves for a period of time but then when the remission ends, they may be worse than before that remission began. All of that said, some people never go into stages of remission.

Fibro can stay at the same level for long periods of time, it can have those remission periods and it can progress quickly. It's different for everyone.

As far as your mom being pill dependent: There is so little that gives us any relief from a pain that never ends. The question is never: Are you in pain? The question is: What level of pain are you in?

This is my thought regarding medication: We are suffering and if medication helps, we should be allowed that. We're not taking the medications for no reason other than the high they can give an addict. There's a vast difference between medical need and recreational use. People would not question a victim of cancer needing pain medication to help their quality of life, why do they question our need of them for the same?

There is a fine line for us, and believe me, we are aware of it - Take the medications and suffer less pain but sleep too much, feel lethargic and not really present in our own lives at times (or) do not take them, or don't take them often enough and feel that pain constantly but we're awake and mobile and present.

Think about this: When a person is in pain, any pain - a cut, a fall, a broken bone, a charlie horse in the leg, a headache - the brain only wants to focus on that pain. It's hard to think past it, beyond it until it starts to heal or you take aspirin or stronger meds. This is our life every minute of every day. We do not heal from fibromyalgia.

As for your mom's sleep issues - staying up all night and sleeping all day: Most, if not all of us have sleep issues. We have sleep apnea and/or we're chronic insomniacs. Many of us cannot achieve stage four of sleep which is where the repairing of our bodies happens. There are many forum posts about this on the Fibromyalgia forum.

We wish we could sleep like normal people. Go to bed at night and wake in the morning, rested and ready for the day. But, as I mentioned, this is a disease of the brain and since the brain controls literally everything the body does, our sleep does not escape its reach either. It comes to a point for us that we take any sleep we can get. A five minute nap at noon, a two hour nap at 4 a.m. A twelve hour sleep from noon until midnight.

You mentioned good diet, exercise, mental and emotional therapy, support system and positive outlook as things your mom can do to try and help herself. You're right, all of those are important. But, there's so much more to it. It's easy to offer up those things as helpful suggestions but not so easy to put them into practice for a patient of fibromyalgia.

Let's talk about exercise first. In my opinion, exercise isn't really about relieving our pain. Many of us report feeling worse pain and exhaustion after even the lightest exercise and/or stretching. The reason exercise is so important for us is this: It's about maintaining muscle strength, flexibility, joint fluidity and our ability to remain mobile.

We are in so much pain and constantly tired (due to that lack of good sleep) that we want to stay in bed and rest or sit in a recliner or on the couch and rest. Some of us do end up bedridden or wheelchair bound because we have given into that feeling of - I don't want to get up and move because it hurts me. The worst thing we can do for ourselves is give into that mindframe. We have to push ourselves, push through the pain, get out of bed, at least do some stretches, brush our teeth, take a shower. We must continue to live as normal a life as we can possibly manage. Simply put - use it or lose it.

Your mention of emotional and mental therapy for your mother: Also a great idea and much needed for many of us. Being diagnosed with an incurable, life altering and painful disease of any kind will put a person into a tailspin. It changes everything for us. We deal with shock, disbelief, anger and sadness. We go through the five stages of grief - if you havn't researched that, I really suggest that you do. It explains so much, and so well, what we go through.

Some people can go through those stages fairly quickly and get a good grasp on this new life that has been forced upon them. Some people may struggle with it for years. Just when they think they've found the acceptance stage and they're doing better, they take two steps backwards and have to deal with the sadness and anger all over again. I personally believe it's a never ending process, finding ways to accept the disease and our new lives within it.

Therapy can help a great deal with that but the key there is to find the right therapist. There are still too many people who do not believe in fibromyalgia. Or they think textbook answers and therapy will help everyone. Fibromyalgia affects everyone differently, not only physically but mentally and emotionally as well. Thus, therapy cannot be a one size fits all. We just want to be heard, someone to listen, believe in us and allow us to spill out the ocean of emotion that we feel over being sick.

A support system is the best thing any fibro-patient can have. Our family, friends - loved ones who believe and listen and help us. We feel horribly guilty for how our disease affects those we love. When one person in the family becomes sick, everyone feels it. We need to be reassured that we're not a burden, that we still have something to offer our families, friends and the world at large.

This is a complex illness that the doctors, scientists and medical researchers do not yet understand. Precious little is known at this point but there are many studies being done and things coming to light.

I agree with you that your mom can make small changes to her life and they will help her to feel better overall.  Be as patient as you can, maybe offer to do some of those stretches with her. Most of all, just love her.

I have an adult daughter too - she's 23. I have such a hard time telling her or my adult son about being sick. I don't want to worry them, don't want to put this load on their shoulders. Moms think they always need to be strong for their children, even if that strength is simply not opening up about their illness and how it makes them feel.