Posts Tagged ‘fibro’

Vacation and School

Hi everyone,

I am so sorry that I have been slacking off with the blogging for a couple days.I have been so busy. Yesterday was my one year anniversary with my boyfriend so I have been spending time getting things ready so that we could have a special day yesterday and we did! Plus, on Monday I had my last day at my job before school which is quite exciting to me.

Now I am going on vacation with my aunt tomorrow and will be gone for the weekend. I will not have access to a computer so I will not be able to blog. Boo. I was supposed to go to Europe this summer but due that fell through so my aunt decided she would take me on a little getaway.

Then, I am starting school so I will do my best but the blogs will probably be less frequent than they were in the beginning but it will definitely continue so make sure you keep checking!!

PS. Thanks so much to those of you who have subscribed and commented. I appreciate it so much and I’m so happy that some of you are finding some help through this blog.

You are never alone.

I wish you all good days.

Blurry Vision

I am not quite sure how many people with fibromyalgia have this symptom, but I do. My eyes have been checked multiple times for various reasons and there is absolutely nothing wrong with my vision.

It is listed on several thorough symptom lists of fibro along with dry eyes. At a health fair I met an eye doctor, and she said this is most likely a result of dry eyes which could be caused by spending too much time on the computer or even reading. Since people blink less when doing these activities, it results in eyes getting dryer faster and more often.

The most difficult part of this symptom is when my vision gets blurry while I’m driving. That is sooo DANGEROUS!! What am I supposed to do?

Here was the recommendation given to me:

1.) Make sure the computer, book, and/or television is at a safe distance from your eyes. If you sit or hold it too close, it may put more strain on your eyes and cause them to dry more.

2.) Eye Drops.

The drops must be for dry eyes. If you use Visine or drops to treat red eyes, it may cause the condition to get worse. Instead, you can find special drops to treat dry eyes at any local drug store.

I hope these tips help!

Do you have dry eyes? Do you get blurry vision? Do you have another method to treat it or have you tried one from above?

Leave a comment and let me know!

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.”

Rheumy Visit

I will post the continuation(s) of my Letter to Normals tomorrow again.

Yesterday, I went to see the rheumatologist. I am one of the lucky people to have a great doctor who can treat fibro. Sometimes I doubt that he truly believes my condition is real and valid, but he is very nice.

I received a new prescription medicine for pain which I am hoping will work much better than Aleve. Since there are things that could go wrong when starting any new medication, I am waiting until Saturday to start my pills. I do not want to risk having side effects when I am in the house all by myself.

Luckily, the rheumy says that it does not seem like there is any other disease process going on but he asked for some blood work just to make sure. The results will be available later this week and I will be sure to let you all know.

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