Fibromyalgia is an increasingly recognized chronic pain illness which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.
Symptoms of Fibromyalgia:
- Body aches
- Chronic facial muscle pain or aching
- Fatigue
- Irritable bowel syndrome
- Memory difficulties and cognitive difficulties
- Multiple tender areas (muscle and joint pain) on the back of the neck, shoulders, sternum, lower back, hips, shins, elbows, knees
- Numbness and tingling
- Palpitations
- Reduced exercise tolerance
- Sleep disturbances
- Tension or migraine headaches
- Multiple sensitivities
As most of my readers know I have been living with Fibroymalgia for the past 7 years of my life. I have another blog that I started about a year ago called myfibrofight.blogspot.com it is about me and my struggle with Fibromyalgia. I will often talk about fibro on this blog but mostly I just bitch about how I am feeling really crappy and move on but today I am going to really talk about it. The past 7 months have been the hardest for me since I was diagnosed. Fibromyalgia is a very hard disease to live with. It is physically and mentally exhausting. A lot of doctors still believe that it is just a catch all for all symptoms that they can't find another diagnosis for. Sadly, a lot of doctors believe that because it does not show up on blood tests or an X ray that it is all mental. The pain and everything else that goes along with it is all in your head. That is just something that everyone with Fibromyalgia has to learn to accept that there are a lot of doctors and people out there that just don't believe that its real. So not only do Fibro patients have to fight the fibro fight but they have to fight every day sticking up for themselves and defending themselves trying to make doctors and others who may think the same believe that every symptom that comes with Fibromyalgia is actually taking over their life. Luckily for me, ( well I thought so anyway ) I have had a doctor who has not only believed that the pain is real but has also stuck up for me and helped defend me to those unbelieving doctors. Until now. I am not going to go into detail of all the problems I have had with my doctor lately but I will just share the most recent thing that has happened that has made me realize that he needs to be voted off of the "Holli Island." The last time I saw him my appointment ended with me holding back tears and having to hold back the urge to tell him to go fuck himself more then I have ever wanted to tell someone that in my entire life. Thanks to many months in therapy now I have learned different ways to deal with stressful situations and negative people. But don't worry I have an anonymous letter in the works! =) (Just kidding.. maybe.) After many months of he and I trying to work out a new treatment plan for me that didn't just involve him giving me pain pills his final decision was to say " Fibromyalgia pain is all psychosomatic and you just need to go to therapy to work threw your ISSUES and you will be fine." The first time since living with Fibro and hearing something like that I did not defend myself and my pain. After months of going back and forth with him on what to do about my fibro and my pain I knew that me trying to argue with him about it and what he just said would not make a difference. All I did was shake my head, got up and left... and in my mind I pictured kicking him right in the area that God only intended to be treated nicely and telling him to go work threw his issues in therapy to make the pain go away. Now like I said every Fibro patient has to deal with doctors who say things like that.. the reason I was so upset is because for SEVEN years now he has been treating my fibromyalgia pain and everything else that comes with it. For SEVEN years he has believed that this is a disease. That the pain is real, and he has treated it. And now all of a sudden its all in my head. And guess what.. for the past 4 months I have been in therapy working threw my issues and my fibro has not gone away. That is not a treatment plan, learning to "Deal" with it is not a treatment plan, and going from being a doctor who is treating Fibromyalgia as a real disease to a doctor who believes that its all in your head is wrong on so many levels.
I will be the first to admit that therapy can be a huge part of a treatment plan when it comes to treating Fibro. Stress can make your pain become a lot worse very quickly. It is very important for people with fibro to have things in their life whether it be going to therapy and talking to someone or getting a massage every week or simply having a pet whatever it may be it is very important for fibro patients to have something in their life to help with every day stress and to help with the mental effects that living in chronic pain can have on you. Like I said I have been in therapy for about 3 months now and while I think it has been very helpful working threw personal issues I have been going threw since May and learning coping mechanisms that I have never had before I don't think that therapy that consists of talking to someone is for me. I would rather spend an hour talking to my sisters or lay in a tanning bed for 15 minutes that is more relaxing to me then talking to a stranger for an hour. Like I said it has been helpful and I am not saying its all crap its just not for me. But I 100 percent believe that everyone living with something that takes over your life like fibro does needs something in their life other then medicine to help with the mental and emotional effects that come along with a chronic illness.
The past few weeks have been extremely hard for me. Again mentally and physically. It started physically and then the emotional strings connected to all of this started to be pulled. I am very lucky to live with my sister who has been a huge and wonderful caretaker of me for a long time and especially the past few months. She is someone who has learned everything she can about my fibro to understand better and to know when the days are that I really need help physically and the days I really need help emotionally. The past month she has done everything to doing my hair for me on the days I literally cant even lift my arms up to brush my own hair to just letting me cry because I feel so bad for having to have her walk me to the bathroom and up and down the stairs and help me get dressed because I cant do it alone. She will always be my friend who will never leave me because they don't understand how one day I can be just fine and the next I cant even get out of bed. Just the other night she had to take me to the Emergency Room because my pain had gotten so bad that I hadn't eaten in days and became dehydrated so she took me to the Emergency Room and kept me company while I laid there and got better. While we were there the nurse asked us "So how do you two know each other?" and when we told him we were sisters and that Meagen is my ER buddy he laughed and said "well its nice that you have someone who will bring and sit with you when you are sick like this" And I just thought about how right he was and how lucky I am to have such a great caretaker and supporter like her and how lucky I am to have someone who is so understanding of me and my ups and downs and will always believe me when I say I don't feel well even though I "don't look sick" While in therapy a few weeks ago she asked me what kind of support system I had outside of my family.. I told her I have very few friends in my life that I truly love and mean so much to me and have been very supportive of me and always there during all my years of health problems and everything else in between. I told her how I have lost a lot of friends because they just don't understand what its like to live with Chronic pain. They don't understand that again, one day I can be fine and the next you are in the hospital. They don't understand how I just physically cant do everything they can because even the easiest things for them can be the hardest things for me. And I then said that I don't blame a single one of them for moving on. Unless you live with something like this, or you live with someone who has something like this you really cant understand completely what its like and why they have limits like I do.
Fibromyalgia has taken over my life. I will not say that it has ruined my life because it has made me the way I am and given me strength that I don't think I would have found in myself any other way. It has given me a chance to find who my true friends are. They are most positive and supportive friends that I know I am lucky and honored to have them in my life and I have found new friends that Fibromyalgia has connected us and I love them so much and am so glad I have them in my life. I cant say that it has ruined my life because it is up to me on how I chose to adjust my life around it. But it has taken over. It has taken away so much from me. It has taken away my energy, my spirit, who I was and made me the person I never thought I would be. It has made me angry, hateful and inpatient. I once thought that I would make myself a career out of dancing and spend my life doing that it was the one thing that I loved to do most in the world and I was good at it. Now, I can't even plan for tomorrow because I don't know what I'm going to wake up to. No matter how long you live with something like this there are things you will never get use to and things that will never get easier. It will never be easy to accept all the things that it has taken away from me and prevents me from doing. I will never get use to how completely unfair it all is. I feel in someways I am a strong person but another part of me is so weak and disappointing. I often feel like I have nothing to offer to anyone else and I don't like to bring new people into my life because I don't want to bring the burden that is myself into their lives.
Because things have been so rough for me the past few weeks when it comes to my fibro I have done everything I can to try and get any type of relief from the physical pain and emotional pain that I have been experiencing. I recently joined a Fibromyalgia Support Group and it really is a great group. They are all fighters and have the understanding of this better then anyone else could have. I know this is going to sound incredibly selfish and maybe a little wrong but as great as the group is a part of me is also jealous as well. I am jealous of those that have great insurance and great doctors that are able to offer these treatment plans that have medicine and all these other things that I don't have and am unable to have. But when I start to think about that I just have to remind myself that maybe not all those people that have a good treatment plan and a good doctor have such great sisters like I do. They may not have good parents like I do that would do whatever they could do to make me feel better. They may not have a support system at all outside of that group. What they may have that I don't, I may have that they don't.
I have a couple friends that live with Fibromyalgia as well ( You know who you are! ) and its so nice to be able to be friends with people who understand the physical pain and emotional pain that this causes. I feel like we have a beautiful friendship that other people may not be able to experience because they don't have a connection with each other like the one that fibro brings us. It is so wonderful to have a friendship like the ones I have with these girls and the support and love we give and show each other is just amazing and I will cherish it forever. I just love them so much and I hope they know how much they mean to me! I also love my friends that don't have this as well because its nice to be able to be around healthy people who I am able to escape what I am living with and they are the most positive people and have the most beautiful spirits about them and I feel so lucky to have them in my life! Even the friends ( and you all know who you are as well! ) that I don't get to be around very often and the friends that I even just get to talk with over text messaging or facebook they are so amazing to me and I cant even explain how big of a place they will always hold in my heart. The things all these friends have done for me is not something that everyone gets to say they have had happen to them in life and not a lot of people get to have such amazing people and support and I cherish every single one of them and memories I have with all of them.
I will continue to fight my fibro fight and hope for a cure. I hope that one day I will be able to say " I am pain free" I hope for the day that I don't say " I don't feel good" I will continue to help spread the word of Fibromyalgia to help people get a better understanding of it and if you know someone who has Fibromyalgia don't ever question whether or not they are actually feeling what they say they are.... THEY ARE FEELING THE PAIN and every other symptom that goes along with fibromyalgia. Don't ever say things like " But you don't look sick.." to them..This is such a tiring and hard thing to live with and I wish more then anything in the world that I was not living with it. But again I will continue to fight and remember that even though it has taken away so much there are things that it has given me. Friends love support and understanding for others are things that I would not change for the world. And even though I may not have a good doctor or a good treatment plan or any for that matter I have things that other fighters may not. I will continue to try and find a good doctor and treatment plan for myself and until then I will cherish and never ever forget all the support and love I have from others and you all know who you are and who I am talking about! Thank you!!
