Archive for Symptoms

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!

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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.

Lyme Disease and Fibro..hype or reality??

For those of you who are active on forums and reading blogs on fibromyalgia, you have surely seen at least one post or comment with someone saying that fibromyalgia does not exist and it is actually lyme disease.

Is this true?
Well, I surely do not know.

I was tested for lyme, like nearly everyone else with fibromyalgia in order to rule it out. Needless to say, the test came back negative. I told the rheumatologist and other doctors that I had never had a tick. Ever. There was no way it could be lyme.

Then, today out of the blue I remembered. I was in 6th grade and sitting in the back of the classroom. I ran my fingers through my hair and I felt something. What was it? I tried to run my fingers through it thinking maybe someone threw a piece of paper at me or maybe it was just a leaf. I couldn’t get it out. I tried again and again pulling harder every time. Eventually, I got it out, it WAS a tick. I got scared and tried to throw it on the ground trying not to call attention to myself amidst my panic.

Did all of the legs come out?
I don’t know.
Did I end up getting a bulls-eye rash?
I don’t know.
Could I have lyme disease?
I don’t know.

However, here is what I believe to be true:

  1. Fibromyalgia is a real condition and so is lyme disease
  2. There are people with both lyme disease and fibromyalgia but there are also people with only one.
  3. Fibromyalgia is NOT always lyme disease no matter how inaccurate people claim the tests are for lyme disease.

Do I think, honestly, that I have lyme disease?
Absolutely not.
There are certain symptoms that go along with fibromyalgia, such as the tender points (or trigger points, depending on what you call them), that are not the same as lyme disease. Even though apparently there is new criteria (…sounds like I’m studying for an exam) for diagnosing fibro that does not include the trigger point test according to a fibromyalgia magazine from last year. I do not quite understand why they have taken this out, but perhaps that is a topic for another blog post. Anyway, there are certain symptoms in both conditions that do not overlap so they must be separate, no?

I would love to hear what you think.
Why not leave a comment and share??

Are Raynaud’s and Fibro seperate illnesses?

On various forums, I see people listing Raynaud’s and Fibro as seperate illnesses.
I always thought that Raynaud’s was part of my symptom set for fibromyalgia. It is discribed in many articles and books as an “associated condition” of fibromyalgia.
Raynaud’s is also a symptom of lupus. Fibromyalgia constantly leads to the fear of the possibility of misdiagnosis. I will admit that sometimes I worry if I actually have lupus or some other condition instead of fibromyalgia. There are so many people that have lived with fibro only to find out years later that they have something else or people live for years with an illness and then have fibromyalgia on top of that.
There are times when Raynaud’s causes my fingers to turn purple just from opening a cold water bottle. I was diagnosed with Raynaud’s before I was diagnosed with fibromyalgia so I guess in a way that answers my question. It happens a lot when it rains, too. Sometimes it embarasses me a little and I try to hide my hands from people.
Unfortunately, I often forget to wear/bring gloves with me.
My fingers also seem to skip the stark white phase. They turn purple, then red. When they are red, they hurt ALOT and sometimes it almost feels like there is a layer of plastic covering them for awhile before I can feel things fully again. This is most frustrating when it is winter (cold) or raining and I walk to class to take an exam and my hands are being difficult. Then, my hands hurting on top of that does NOT make it easy to write an essay either. Add fibro fog in there, and all the other symptoms associated with bad weather and/or a fibro flare.

This picture is a lot more severe than my Raynaud’s, thank goodness.

However these are some tips and tricks that I use or have used to help wtih Raynaud’s:

  • Tape fingers with medical tape when they are painful
  • When holding a cold beverage, always put a napkin folded at least once over where you will hold it
  • Put my hands under my legs to warm them up
  • Try to remember to wear gloves!
  • Photo: Tcal from English Wikipedia via Ookaboo.com

    Do not touch anything, and just wait it out! (This is not a tip or a trick, but sometimes you just gotta do it!)

How do you deal with Raynaud’s?
Do you have Raynaud’s?
Do you think Raynaud’s and Fibro are seperate illnesses?

Comment and let me know!!

Does it have to be all 4 quadrants?

One of the trademark characteristics of fibro (besides the tender points) is that the pain needs to be in all four quadrants of the body and last at least…3 months, I think? It may be different.
What happens when it is not in all FOUR quadrants, but maybe just like 3? Can people get the diagnosis of fibromyalgia? Personally, I have pain in all four quadrants of my body, inside and out so this doesn’t really apply to me.
Does anyone know of situations like this? Or where the pain is just generalized and can not really be identified as all four quadrants? It would be interesting to see if that makes doctors more difficult since so many of them already believe fibro is not real.
I was just wondering because different people get different symptom sets.