Fibromyalgia Awareness
Over the last few years we have conducted various polls among the fibromyalgia community.
However we have not fully explored the fibromyalgia journey. So we thought we would start off with a simple poll which asks the question “Have your symptoms of fibromyalgia got worse over the last 12 months?”
The poll is below but it would be great if you could also use the comments box below to tell us in a bit more detail how your symptoms of fibro have got worse in the last year.
Many thanks in advance for your help!
I have had fibromyalgia for almost 29 years and every year my symptoms increase as well as intensify. I live in Canada so the winter months are very cold as well as more debilitating for me. Each year I notice that I am less and less able to do the things that I did even a year ago. I have raised 3 children all while being sick. I used to be able to cook supper pretty much every night and now I have a huge issue cooking a meal even twice a week, even though my children are grown and independent. The trigger(tender points) have increased as well…cause I now have trigger points that are not even listed such as in my ankles and feet. It now hurts my feet to walk even though I have good shoes, walking and standing cause my feet to hurt, even for short amounts of time. My ankles feel like they will give out on me much of the time now. I won’t go into all of my symptoms because there simply is not enough energy in me to list them all. I think that the doctors should re-evaluate the tender point test as well as the fact that they do not call it progressive…it absolutely is!!! My headaches have increased over the past 12 months as well as my eye pain, knee pain, neck pain and even pain in my hands. I hope this helps for your survey!!!
My symptoms get better and worse in cycles, and each of those cycles is in a different time frame. It varies over the course of a day, over the seasons within a year, over several years. I’ve ticked yes, but now that I think about it I should probably have put ‘other’. I was worse than I am now about 13-14 months ago, had a good spell, and then the colder weather hit.
Also, with such limited mobility, with the pain and fatigue, with mood issues, my general health isn’t so good, and that has an impact on my ability to look after my symptoms. So although fibro itself isn’t degenerative, overall I don’t see much light at the end of the tunnel.
As with many sufferers, I have a whole host of confounding ailments, like thyroid, IBS, arthritis, etc. Some of these have similar/ same symptoms to the fibro, so it’s hard to say that my fibro symptoms are better or worse, because it could be that the symptoms have varied as a result of changes in a different disorder.
Hope this helps??
I find it interesting that research has shown that fibromyalgia is not a progressive disease and yet so many of us feel we have gotten worse over the past 12 months. I know I have, physically I have more difficulties trying to do anything. I now walk with a rollator for instance. I have difficulty and increased pain with standing or sitting for more than a few minutes. Is it because the Fibro is getting worse or because I continue to lose muscle tone due to the lack of ability to exercise? I’m not sure that both things aren’t contributing. Mentally I have noticed many changes. Cognitive functions such as speaking with a stutter at times, not being able to get my mouth and brain to cooperate and work together.. to thought process just being gone.. forgetting where I am and how to get home, forgetting conversations, names of common every day items. Vision changes, blurriness, seeing stars etc, photosensitivity, severe pain behind my eyes to straight up hallucinations of people/objects that aren’t there. I constantly experience a scent that I can’t place and no one else is aware of. I hear things that no one else hears and can’t hear some things everyone else can. Noise intolerance is extreme. Anxiety attacks from the radio being on and someone talking to me, the thought of having to talk to friends or family or from having to leave the house to do groceries are frequent. I never experienced most of that a year or two ago. I have pain everywhere, all the time, but now the pins & needles and numbness is constant. I can’t stay in one position for long or everything goes numb and I have to endure that pain on top of the stabbing, aching and burning sensations I already feel. I’m afraid of moving anything too quickly because I know it will mean weeks or more of a flair in that area.
I’m sure non of this comes as news to my fellow fibroites, but it sucks. It scares me to think about what I’ll be like in 5 years. If I live that long.