What Fibro has done to me…
There are many lists of symptoms tied to Fibromyalgia, and every list seems to be a little different. Fibromyalgia is complicated and unknown even to the people that have had it for years. You never know whether your symptoms are from your Fibro or from some other ailment. For so many people this “disorder” has disrupted their lives and killed their morale. Every person’s story is so different, yet so much alike at the same time. I know that doesn’t seem to make sense but if you have fibromyalgia you will know what I mean by that!!!! Every person has different symptoms and their flares are different every time, but their journey, the one that brought them to where they are now... is similar in so many ways. I am here to tell my story… the story of how I came to be diagnost with this “disorder”.
My journey began over 8 long years ago… At the beginning I felt crazy because all of my tests would come back normal and it seemed like everyone around me just thought that it was all in my head, in fact even now I feel that way because people just don’t seem to understand how I truely hurt. I put a smile on for everyone else and they seem to forget that I am still in pain, but I can’t tell them every moment that I am in pain, because the pain is constant. People think that everything is in my head because how can a person hurt non stop like I do!?! Then there are the doctors, one after another for years each and every one of them doing the same tests… proving nothing. I got sick of hearing that nothing was wrong with me when I knew how I felt, so I just stopped going to the doctor. I then just adapted my life around the pain and did my best not to complain about how I felt. Its kind of funny how I could give up doing so many different things without anyone ever noticing or even asking why. For instance, I no longer peel potatoes, wierd sounding I know but the pain in my hands was horrible so now I either mash them with skins or don’t make mashed potatoes… yet no one noticed that I totally changed how I cooked. I can’t stand for long periods of time (at all) so when I shop I make sure I can sit down from time to time, I guess people just assumed that I was lazy, but really it hurt too much to stand!!! When I say long periods of time I mean like 5 min’s at a time without discomfort, I can’t even stand to brush my teeth without my legs hurting!!! People would comment on how I would stand like a flamingo while doing things like the dishes and what not but I would do it just to relieve some of my pain on my legs. I even drive funny... I have to have my leg propped up on the left side so that it doesn't ache so bad, if I can put the cruise on I am golden... because it hurts to push the gas pedal. So many little things that people take for granted!!!!
All of this went on for many years and then one day I woke up with this horrible pain everywhere, this pain was worse then I was use to and nothing took it away. The pain seemed to get worse every day and finally I just caved and made an appointment to see the doctor, because frankly I couldn't bare the pain any longer. When I got to the doctors office and I sat there waiting for him to come in I was scared of what he might tell me, not scared of what might be wrong, but scared that he would say nothing was wrong. I know most people would hope there was nothing wrong, but me... I wanted an answer to why I was in so much pain!!! Once he got in the room he sat there quietly reading my file and all I could think was that he probably thinks I'm nuts and just want pain meds or something. I swear I almost had a panic attack sitting there while he read through my file!!! Then he finally spoke... he started asking me questions and it was like he was in my head... he knew exactly what I was feeling... FINALLY a doctor that didn't act like I was crazy!!!! After finishing his exam he told me that he is pretty sure that I had fibromyalgia and that he wanted me to go see the rhuemotoligist to verify it, but he was going to treat me for it until then. Finally a name to this pain... I know it is pretty messed up that I was happy to hear that I have a life long 'disorder' that pain meds don't even seem to touch, but you know what??? Atleast I 'm not crazy... what I felt for 8 LONG years was real!!!!!! Don't get me wrong I wish that I didn't have this, I wish that I could just lead a normal life, but I can't and I am the one that has to deal with that!
No one knows how I feel unless of course they too have this!!!! People try to understand but it is usually forgotten about over time. See... at first people are sympathetic and want to help but they don't understand that this is an every day thing for me. It is hard to explain to someone (that doesn't have this) that it hurts too much to do something, because on the outside I look fine, I don't hobble, nor do I look disfigured or injured, so I should be fine. That is not the case.... every day is painful and if I do the things I know are outsie of my limits I pay for it for days, maybe even weeks later. If I over do things it brings on a flare, after the fact, and disables me in pain. I still have to work every day and take care of a house hold of people, yet fibromyalgia never takes a back seat... that is what people never seem to understand!!!! Something as simple as caring a laundry basket downstairs can make my arms ache for days... yet I still try to do as much as possible because I get sick of asking people to help me!!! I was always a very independant person and never liked to ask for help doing anything, but this disorder has changed me... I am no longer independant... fibromyalgia took that from me!!!!!
When I finally got a name for my pain I thought I would be able to fix it... boy was I wrong!!!! Getting a name for my disorder was only one painful step twords many more painful steps to follow!!! I just hope that some day they find some type a reason for this disorder so that they are better able to treat it!!!!
Post Edited (realpain) : 12/19/2008 9:23:51 AM (GMT-7)
Post Edited (realpain) : 12/19/2008 9:24:21 AM (GMT-7)
I have: Fibromyalgia, CFS, Holt-Oram Syndrome, nasal allergies, depression
Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren.
I have said this before on here- I am thankful (???) that the fibro hit me hard late last winter because once the tests all came back normal and the HORRIBLE pain hit, they were able to diagnose me quickly- I cannot imagine going through 8 years of "not" knowing.
I don't think there is a person on here that does not relate to your story in one way or another! Vent all you want- we understand!!!!
You have a very good idea! I will have to put some thought into this before I submit something though.
I'm still not feeling the best but we are in the middle of a snow storm and I don't handle weather changes very well. Luckily for me, it is very quiet here at work. I'm thinking about sneaking over to our couch and taking a short rest, boy that sounds good .
I hope everyone has a good day!
Post Edited (realpain) : 12/19/2008 1:56:32 PM (GMT-7)
Rach, I can completely relate to your story. Mine started a couple of years ago. I, too, do not peel potatoes. My family complains. Stirring batter is nearly impossible here too, Marlee.
My husband who understands let me lean on the cart yesterday while we were shopping. By the end I could barely shuffle. At the checkout he decides he wants the cart at tne other end of the counter and he just yanks it away and I nearly fell over. I said, "hey," and he looked me in the eye right in front of the clerk and said, "Chill" Rather than be humiliated, I made a joke out of it and the clerk seemed to not realize.
Later at the bookstore I am standing in line for coffee and he is on the phone to his mom wandering all over the store (when I could have been sitting down and he could have been in line). I tried leaning on the display case, but that did not help, so I snuck my cane out of my purse and leaned on that and used it to go out to the car and go to the next store.
Then in the car after the store, I took my shoes off and rubbed my feet and when I got home, I changed shoes and was fine again. Who on the outside of our bodies can make sense of that? Now you hobble now you don't.
I am so glad you shared, Rach. Your story was not long at all because it was interesting.
Oh everyone, I got some long underwear at Target. It is silky and light and awesome. Our pge bill was >$700 two months last winter and we are trying to avoid that so we have been keeping the heater down low. The underwear is a Godsend.