Posts Tagged ‘normals’

Letter to Normals (Part 6)

“I mentioned my sensitivities earlier and I need to talk about them again.”  Most people with this condition have strong sensitivities to smell and sound, but I do not have much of a problem with these. Sound only affects me if I’m already having a ‘bad day’ or ‘flare.’ I also have a problem with heat and cold.” The cold is one of my main triggers and even air conditioning or being outside a short time can leave me feeling absolutely horrible. The heat, even for a short time, can leave me feeling similar to having sun poisoning, but without the actual sun burn. “It sounds like I’m never happy but that isn’t it. These things make me physically ill. [It stresses] me out [because it makes] my pain worse and I get exhausted.” Remember that sometimes when I feel this way I may be very quiet but “there’s nothing you can do to make me feel better, so it’s just better to let me be.”

“I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep.” Other times, I sleep for very long periods of time. I may even sleep for a very long time and still feel exhausted when I wake up. This occurs because my brain waves are affecting my sleep patterns. I know that may sound confusing. “There are times when tossing and turning and getting up and down to go to the bathroom” several times can be really disruptive.


Letter to Normals (Part 4)

“Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type.” The commercial you may have seen on television says it is a dull, aching pain. I’m here to tell you it is far from just that. There may be times when it is dull, stabbing, cramping, throbbing, burning, jabbing, or excruciating , or some other adjective that I can’t think of right now. Sometimes it feels like it hurts deep in my bone. There are also times when it feels like m whole body is tying up in knots and there is nothing I can do about it. There are 18 tender points used to diagnose fibromyalgia. You need 11 in order to get diagnosed, and I have all 18. If you press on one and hurt me I will not be mad at you. I know it is not your fault. “If Eskimos have a hundred words for snow, fibromyalgics should have them for pain. Sometimes I hurt all over.” Sometimes I can’t pin point where exactly the pain is I just know that everything hurts.

“Besides pain we have muscle stiffness which is worse in the morning.” This is not one of my biggest symptoms. However, I do experience it at times in my shoulders, knees, hips, elbows, wrists, but the worst is my fingers. This is not very frequent, but I have experienced this symptom. “I’m creaky and I’m klutzy.” I’m creaky because I am hypermobile in some joints and I have joints that I need to pop often. However, I personally find back and neck cracking really icky so if you must do it please warn me to cover my eyes and ears. Thank you. J Sometimes, “I trip over things no one can see, and I bump into people I’m walking with [or walls because] my coordination is off.  I just don’t seem to connect the way I should.” There are times when I must walk very slowly up or down stairs because I am too stiff or in too much discomfort to walk them normally.

Letter to Normals (Part 3)

I may suddenly feel sensitive to noise, but I will never tell you to turn down the radio because I hate that. Noise is not one of my big fibro triggers unless I am having a very VERY bad day. My main triggers are humidity, rain, and the cold. When I encounter these conditions, it is very likely that I will not feel good. Even sitting in a car with high air conditioning for a short time can leave me in an immense amount of pain and just feeling completely wiped out. Othertimes, if we are out in a store or something I will just it on the floor or a bench or wherever I can sit. This is not because I am bored. It is because I am in too much pain. There are other  time when I may be in so much pain that I get very pale or even seem like I’m about to cry, but don’t be scared because nothing really bad is going to happen. It’s just because of fibromyalgia. There may be other times when I just need to plop down somewhere because I have no energy or am very tired or am in too much pain. “Other times there may be no warning, I may just [all of a sudden] feel awful.” Once again, I cannot control or predict when this will happen to me. I am just telling you things that have happened in the past. “I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry.”