Posts Tagged ‘pain’

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 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.

My Zig Zag Days

Today is Friday. Wednesday, I was in a lot of pain. Then, Thursday wasn’t too bad. I was achy but it wasn’t a day full of fibro fun. Then, today I am in a lot of pain again.

This is what I call my zig zag days.

I am not having a flare..I don’t think, just a fibro fun day. When I have days that are good in between my bad days, I call them my zig zag days. Then, a zig zag mini-flare is when it is like a pattern of good days and bad days in a pattern.

This is quite frustrating. Sometimes I wish the bad days could all come together so that it wouldn’t be false hope.

However, on the bright side, at least I get a break sometimes.

I hope you all have a great weekend!

The Grass is Always Greener…in reverse

One of my closest friends (We will call her Kiki) from the time I was in 5th grade has cystic fibrosis. We became close friends because I had scoliosis and she had CF so we had to go the the nurse’s office together every day.

For some odd reason, people have mistaken our “diseases” several times. We will text each other and say, “Someone just asked me if I had CF/fibromyalgia, and I was like nope, but one of my best friends does. Haha.”

I have NO idea how people mistake these two conditions and it ALWAYS makes us laugh.

Her mother also has fibromyalgia so she has some experience with it. At one point, they even thought that she might have fibro. (She didn’t. Thank goodness!)

One day we were talking about people who mistake these two conditions. Please note: We are very open with each other and we are very blunt and honest about everything. Nothing in this conversation was considered offensive to anyone involved.

Kiki: I do not know how they could mistake them because what you have is so much worse.
Me: Are you kidding? How could you ever think fibro is worse than CF? You do hours of treatment every day and you are in and out of the hospital all the time. Plus, you are coughing all the time and stuff.
Kiki: Yeah, but I’ve lived with it my whole life. You just got diagnosed a year ago and it is like your whole life got turned upside down. I also don’t have to deal with people doubting my disease. Everyone knows that its real. I know the course of my disease. Yours is totally unpredictable and there is nothing the doctors can actually do to make you feel better.

I had never thought about this. Not about which was worse, but about how her perspective could be so different from mine. I have watched her go through so much with CF and I do not know how fibro could even compare.We had a pretty good conversation about the two conditions. Neither of us changed out opinions but it was a very interesting conversation.

People say the grass is always greener, but I guess when it is in reverse…we’re at least optimistic!


I work as a receptionist at a nursing home.

As with most buildings, it is difficult to control the temperature in all parts of the building. The location of my desk is very, very cold. Obviously, this doesn’t suit me very well with fibro. On top of that, it was raining which is one of my main triggers.

I felt like the luckiest girl in the world because it was raining so hard outside and my boyfriend offered to drive me to work because of the bad weather. I told him I would be okay because I did not want him to go out in such bad weather right after he got out of work, but it meant the world to me that he asked.

Usually, I do not have much to do at work. I went in pain today, and it just so happened that I had paper work and things to do…while my hands were hurting. I was not about to tell them that I was not going to do the paper work because I was in pain as they do not know about my condition. Needless to say, doing paper work with my hands in pain was NOT fun. Luckily, I get to sit down the whole time so the pain in the rest of my body is not a major issue.

What are the challenges you face at work?

Leave a comment and let me know.

Even in my sleep…

I am exhausted right now.

Last night I kept waking up due to pain in my hip. I do not know how people can say it is fake when it actually wakes me up in my sleep. There is absolutely no way that I, or anyone else, could make that up. When I do not wake up, I have had people tell me that I groan in my sleep like I’m in pain. I do talk (and laugh) in my sleep and people have several funny stories about the different things I say in my sleep. Sometimes they hear me say things like “Ouch”, “I’m hurting”, or “This really hurts.” When I hear about it, I think it is funny and it makes me laugh.

Then, the humidity was pretty high today and I’ve been in pain all day. I have tried taking Aleve and it barely even takes the edge off. I am going back to the rheumatologist in about two weeks and hopefully he will give me something stronger.

What do you take for pain? Leave a comment and let me know.

Daily Life…

I have had fibromyalgia “officially” for 2 years now. However, it seems that too often I find myself surprised by some of my limitations and I am caught off guard.

Overall, my day was good and I was not in too much pain. This is surprising considering that I woke up several times throughout the night due to pain in my hip, which led to difficulty waking up on time and losing out on a pretty good portion of my day.

Then, I went grocery shopping with my mom. We save produce and the frozen section for last. As with many people with fibromyalgia, the cold and I do not mix very well. We couldn’t have been in that section for more than 20 minutes at the most, but ever since then I have been in quite a bit of pain. I took Aleve but it barely ever relieves even 30% of my pain. Needless to say, I am writing this in pain. Lucky me.

Then, my friend texted me to go for a walk. I do not see him very often so I thought that a walk might actually be good for me. The temperature had dropped so my plan to get some heat didn’t exactly work out as planned. Luckily, he is, and always has been, very considerate of my condition and patient with me. We stopped a few times so I could sit down and rest because it was harder for me to walk. He has been friends with me long enough to know when I am walking funny and that usually is a clue to him that I need a break. Despite the pain, I still had a good time. Hopefully, I will feel better tomorrow.

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