Archive for Letter to Normals

Letter to Normals (Part 9 – Finally Finished!!)

The last symptoms I will mention are neuropathy and parasthesia. I have neuropathy and/or parathesia at times in my arms, fingers, legs, and toes. Sometimes m fingers or toes feel very numb or hut a lot. Sometimes my feet and arms will tingle or feel like pins and needles. Other times it may feel like I’m getting electric shocks in my arms or legs. They may even feel like they’re burning. Just because it doesn’t feel like it‘s burning if you touch it does not mean that I am not experiencing the burning on my skin. I can promise I will not lie about what I am experiencing and if I say it burns then it really does burn. Sometimes I may lose some sensation in my hands. Everything I touch feels like I’m not really touching it. If you can imaging feeling something through a piece of plastic wrapped around your finger that is what it kind of feel like, not like a glove but like a relatively thick plastic. I may also have very sensitive skin. When this is happening you may slightly touch me and I will make some sort of squeal or yelp. I know that you didn’t intend to hurt me and it’s not your fault. Even a slight breeze or getting dressed can hurt when I am experiencing this so don’t feel bad.

I have other symptoms that I don’t prefer to talk about. “Some of these symptoms are embarrassing and hard to talk about it but I promise to try” if it’s really important to you. If you look it up, and see something really ‘different,’ I’d really appreciate it if you asked because everyone with fibro has some variety within their symptoms. “I hope that you will have patience with me through these things.” I try really hard not to constantly mention my illness and dwell on it. I don’t want it to come between me and you even though I know it can put a lot of excess stress on a relationship or friendship or (fill in our status here). I’m sorry for any inconvenience I cause and any times I have to bail. I promise it’s not intentional. Thank you so much for reading this super long letter. I really appreciate you trying to understand. Never forget that you mean a lot to me and I really appreciate you in my life.

Now you know a little more and if you have ANY questions, ASK!!

November 17, 2009


Letter to Normals (Part 8 – Only One More!!)

I also have some associated conditions like acid reflux, GERD, hypermobility, and Raynaud’s just to name a few. Most of them you probably know about, but I will explain Raynaud’s a little bit. Raynaud’s is a condition that I have in my nose and my fingers but differently. When I get stressed my nose and sometimes face, forehead, and scalp will feel really tingly and like I have bugs on my face. Sometimes it even goes numb. This is very uncomfortable for me. My fingers are affected by stress in the same way. However, the cold also causes my fingers to turn purple sometimes. I often try to hide this because I find it very embarrassing. If I ever pointed it out to you, it shows that I really trust you. If not, it doesn’t mean I don’t trust you. I just didn’t. Haha. No biggie. Anyway, after this happens my fingers often turn very red and may be very sensitive when I touch anything. This is different from the joint pain that I have in my fingers, but it is one of the symptoms I have from fibro.

Sometimes my joints get very hot. This is nothing to be alarmed about. It just happens sometimes Don’t be scared if you touch me and there is like heat radiating from me. Haha. That just happens sometimes especially when I’m already in pain. I may also be extremely light headed or thirsty at times. This also just happens because of my condition. Sometimes I may also feel short of breath or like I can’t breathe. I can tell the difference when this is caused by fibro or something else so it is nothing to be worried about either.

Letter to Normals (Part 7..Almost Done!)

Many people with fibromyalgia get very depressed. I am not depressed at this point. However, sometimes I have days or week when I feel like I’m sinking into depression gain. Sometimes “I get angry and frustrated and have mood swings. Sometimes I know I’m being unreasonable.” When I am, I will most likely own up to it. This may be as soon as 5 minutes or as long as…super long, but I will most likely own up to it. If I don’t, call me out on it. I totally expect my friends and people who care about me or are close enough to even be reading this to call me out. I’m totally fine with you doing that. If I owe you an apology or you think I overreacted. It’s important that we at least talk about it. Whatever our relationship is, communication is very important. “Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful.” I know these factors may make it hard at times to be in my life in whatever way you are in my life. However, I do my best to keep it from affecting you and dealing with it on my own. If you feel that I don’t and there is something that we can work through together, then let me know and we can definitely talk about it and figure out a solution to dealing with the problem. Fibromyalgia is my problem and you don’t deserve to have to carry even the smallest bit of the burden on your shoulders. I’m very grateful for those of you in my life who are taking the time to read this and trying to understand what is going on in my body. (Side note: Even those who don’t read this letter, I’m still grateful for having them in my life. I’m grateful for mostly everyone in my life. Everyone is beautiful and everyone deserves to be embraced for anything and everything they are. I think.)

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 5)

Sometimes, especially with exercise, I push “myself, and sometimes I push myself too hard. When I do this, I pay the price.” My body cannot just bounce back like yours can. My brain amplifies pain and makes it a lot harder for me to recuperate from even slight things. “I pay a big price for overdoing it, but sometimes I have to” especially trying to drive to school and get involved and do homework and have friends and all the other stuff I do on a daily basis. It can take a lot out of me. “I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are there.

“Another symptom I have is problems with memory and concentration which is called fibro fog.” People with fibromyalgia can experience fibro fog in different ways. For me, it may be literally what it sounds like, my thinking is foggy. Sometimes you may be talking to me and I feel like I’m completely engaged and then I realize I haven’t the slightest clue as to what you said. If we are close friends and you are patient with me I may ask, but if not I will probably just ignore it and pretend I understood. I also may ask questions 3 or 4 times within a span of 5 minutes. I genuinely don’t know the answer and am sorry if I annoy you. I can’t help it. I’m not trying to make myself look like a victim. I am just trying to may you aware of what is going on. I am sorry for all the I,I,I  statements. I promise I’m not that self-absorbed. Haha. J “Short term memory is the worst! I am constantly looking for things which I have no idea where I put, I walk into rooms and have no idea why.” Sometimes I seem to be looking really hard for something, but when you ask me I can’t remember what it is and realize the last 20 minutes of my life were wasted. Haha. I also may need a second to process something you say or to respond. I have a hard time thinking of the right words and sometimes I just can’t and sometimes I say the wrong word and don’t even realize it. “Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics.”

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.”

Letter to Normals (Part 2)

Everyone with fibro has different symptoms. “There is no way to just take a pill to make it go away, even for a little while.”  I take Aleve and I know I overuse it. I know I take more than I should and I know it’s bad for me, but without it there are times I can’t walk, brush my teeth, wash my hair, or even get dressed or out of bed. Aleve barely even helps 30% and barely takes the edge off, but if I take enough it usually helps me function. “That’s about the best I can hope for. “ My rheumatologist will not give me anything stronger, but I try not to take too much Aleve because I don’t want to hurt my body even worse. However, there are times when no matter how much medication I take, nothing helps and there is nothing I can do about it. “That’s just the way it goes. “

“There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better because I suffer from chronic pain and fatigue for which there is no cure.” However, just because I’m functioning normally and seem happy, that doesn’t mean I am not in any level of discomfort or pain. “I can have good days, weeks, or even months.” But I will have fibromyalgia for the rest of my life. There is a certain percentage of people who get fibromyalgia and it progresses to get worse, and I hope I am not in that group. I have days where I feel great in the morning, and then all of a sudden I’m in a lot of pain and have absolutely no energy. I am absolutely exhausted. It can go the other way, too. I have times when I feel sick for an hour or two and then it goes away or vice versa. Just because it doesn’t last or sometimes lasts too long does not mean I am faking it. Like I said, I cannot control the way I feel. When I am in a lot of pain or even just because it is a symptom of fibro, I may get very irritable. If this happens, I will most likely be very quiet. This does not mean I am mad at you or hate you. I am just very uncomfortable. I know if I’m not quiet I may not be very nice and I don’t think you deserve to be treated that way. I’m just trying to cope with my condition in the best way I can. I don’t want it to affect your life negatively by having me treat you in a not-the-best way.

Letter to Normals (Part 1)

I am so sorry that I have not posted in awhile, but that only means that I really, REALLY needed to post today.

Awhile ago, my friend e-mailed me and told me that she found something on her sister’s friend’s facebook called “Letter to Normals” and it talked about this girl’s experience with fibromyalgia. It is from the book Fibromyalgia:The First Year. (Please Note: I have not read this book, but I have seen it in book stores). We both have conditions and decided to write one for each other to explain our conditions.

If you are having unsupportive family members or just need to keep your feelings in order, then I suggest you try writing one.

There are parts of her letter that are copied directly and those parts are in quotes. I am giving it to you in pieces so that it is not too much at once. Here it is, exactly as I wrote it over a year ago:

There was a letter written by Claudia Merek called “Letter to Normals” about fibromyalgia and she says people can use it as a basis to write their own (what I’m doing). If you are reading this, either you asked to, I feel you don’t understand, you are denying it, you think it’s fake, or you wanted to learn/know more about it for some reason. The first thing to know is that if you have a question about my condition (or really anything for that matter), NEVER ever hesitate to ask me. I would rather you ask than leave something left unsaid. Every fibro book says it’s a responsibility to tell people how you are feeling and what you need when you are calm, but I will rarely do this.

“ Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine, too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don’t want you to think I am making it up.”  I know you may get frustrated with the unpredictability of my condition, but I get frustrated, too. I did not choose to have it or make it up. I actually consider myself lucky to have fibromyalgia because I went through 2 sonograms, 2 ultra sounds, 3 urinalysis, an EKG, and 13 tubes of blood drawn to make sure it wasn’t anything worse. Any one of those tests could have come back worse and they didn’t. I only had low vitamins and minerals, which is to be expected with fibro. Therefore, I consider myself lucky.