Hello, all!
My name is Lisa Burks and this is a little something about me. I am 32 years young. My husband, Wes, and I have been married for 10 wonderful years. We do not have any children at this point but are the proud fur-parents to the cutest black Labrador named Lucy. In my spare time, I enjoy quilting, reading, listening to music and spending time with loved ones.
I am an accountant, event coordinator, shopper, baker and maid — otherwise known as the best housewife! I also write a column for IBD News Today, in which I talk about my journey living with Crohn’s disease. As much as having Crohn’s disease has affected my life, another big part of my daily life is living with daily pain.
The journey of my health
As a child, I had asthma, yearly pneumonia and frequent sinus infections. It wasn’t until I was about 20 that my health started to decline steadily. My doctors were puzzled. When I finally had my “A+ team” of doctors, they worked endlessly to find out why my health was not under control.
I have an immune deficiency disease called common variable immune deficiency (CVID). Basically, I don’t make three of the five antibodies that my body requires to fight off infections. I likely have had it all my life, which explains all of the sinus infections and pneumonia, both of which aggravate severe asthma. As of today, I have many ailments such as asthma, seizures, migraines, renal tubular acidosis, GERD, diabetes and a few other conditions.
Along comes the pain
The conditions I have not included above are peripheral neuropathy, Crohn’s disease, enteropathic arthritis, chronic pain syndrome, and worst of all, avascular necrosis. These conditions cause me to have a great deal of pain all over my body every single day! I’m currently working with pain management, rheumatology and orthopedics to focus on controlling my conditions. The specialists I’m working with are searching for other factors contributing to my pains. Finding the root cause for the pain is important, so that the proper treatment is given.
Finding the silver linings
Many people ask me how I’m able to keep a positive outlook through everything that has happened to me. The key is having a solid support system, always being prepared for what life throws your way, and never losing hope. My husband, Wes, family and friends are my main source of support and they keep me going strong. I have hope for a better future, a pain-free future!
In life, despite when things get tough, I learned to look for the silver linings. Finding the positives mixed in a mess of hardships can be a challenge. I make a point of finding the bright side of situations so that things don’t seem as bad. When I meet others who are living with some of the same health issues I have, I try to be there for support.
Even though it’s hard for me to live with numerous conditions, I try to turn my personal experiences and struggles into a way of helping others. I consider this a big silver lining.
In my future columns, I plan to write about all aspects of pain, such as the causes of pain, testing, understanding diagnoses and available treatments, and I’ll share my experiences and advice. Until next time, keep going strong!
***
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
For now I have grown weary of pushing past the pain and going through the hoops of looking for some hope or some morsel of encouragement and fed up w/ apologizing because I have severe problems w/ meds for fibro.
Stuff happens and once one gets old everything is blamed on age-why help an older, retired person that has already lived life…?
This is the reality I have been struggling with…easier to kick the old and useless to the curb.
Hello Em,
I’m sorry to hear that the doctors aren’t even trying to find a solution to your fibromyalgia, ignoring your pleas for help since you are having problems with your current medication treatment. It is certainly never okay to put people of any age on the back burner!
My column title “Pushing through the pain” doesn’t mean to just ignore or just work through pain w/o answers or assistance from Doctors. Working/pushing yourself through pain usually applies towards scenarios such as in physical therapy to gain strength or recovering from an injury (to a certain extent of course!). The meaning I relate behind my title, is that when you feel as if so much is happening, living with medical conditions that cause you severe pain such as fibromyalgia or any other condition making your everyday life overwhelming, that you need to keep going! Never let anything make you feel defeated. Keep moving forward and push through any obstacle thrown your way. You run your life, don’t let your health run it for you.
I truly hope that you are able to find a doctor who will listen to your concerns and try to help you!! Don’t take no from a doctor concerning your health, just keep searching for one that will listen to your concerns and make an effort to help you. Which medications are you taking that are giving you problems?
–Lisa–
Me too Em.
Hi Em,
I know exactly what you are going through. I have fibromyalgia, reflexive sympathetic dystrophy and ving Trigeminal Neuralgia. The RSD started in 2001 when the heel my foot fractured. They casted me, but they did an extremely poor job of it(Truly I could use some rather foul language if I wanted to, but not here. Within 3 weeks I was having severe pain across my instep and my toes turned purple. They removed the cast and put a new one on-2001. But the damage was already done. I researched this condition and at that time I found very little. It has now travelled up both legs to the groin. There’s no cure and if it spreads to my internal organs it’s all over. In 2002 I was diagnosed with Trigeminal Neuralgia and Fibromyalgia. I went to Pain Management. From the first doctor I got trigger point injections and hydrocodone. Never really helped. 2nd Pain Management doctor came real close to killing me. He had me on so many drugs at the same that I could barely stand. I was falling down constantly,hearing voices and hallucinating. My husband found me on the floor unconscious where I had been for 15 hours. By the time I got to the ER the doctors told my husband that if they had gotten me to the ER a few minutes later I would now be on a slab in the morgue. I ended up in a coma for 3 weeks, and I have total amnesia of the incident. Then the Fibromyalgia got worse. The fatigue was horrible. I kept trying to work through it mainly because I am a stubborn Italian old cuss. But now I don’t know what to do anymore.Every doctor I have gone to tells me the same thing—“Live With It And Stop Wasting My Time!” Live with it I said to them, I have been living with it since 2002. All they say is “Sorry can’t help you”.
I am constantly saying I am sorry or I wish I could go with you but I am in too much pain. Part of my problem is that I have been a nurse for 30 years and am now disabled. I never thought I would have to live like this in the 2nd half of my life. I would love to have just one whole day without pain of any kind.
So Em, you and me and whoever else is out there, have to hang on!
Hi Cherie, we do keep pushing past the pain as much as is possible. I have gone from an active, vibrant person to struggling and I have now come up w/ a diagnosis I am more than willing to share…Doctorphobia. I honestly do not know how some of them even get through med school…I no longer have any trust in them. They are only doing what they have learned and patients are not even real people-just another piece of human flesh…deleted expletives do have their place and a public forum is not the place…thank you for showing you have ethics.
Medications do dreadful things to me and I do the best I can and no more trust an MD to check a chart nor much of anything else…why their insurance is called malpractice. Why it is nigh on to impossible to do anything.
PT for my knee has my entire body in spasms because this is required to try to get prior authorization from insurance for an injection in my knee as I am allergic to all steroids…of course, I am going to PT and doing the homework. My knee is much worse as well. I was sent for hydro-therapy…
Well, we keep keeping on and if we even come close to self pity our lives are over. I know w/o a doubt that it is up to each of us to keep trying…will admit that the pain I have is enough to have me in tears…not until after I do my homework!!!
Doubtful this will get past moderation, but at least I did vent to something other than a journal because I cannot even hold a pen…Suck it up, old person.
Hello Em!
Thank you for clarifying to Connie ie that Pushing through the pain, as in not letting your health bring you down. To stay strong no matter what is dealt your way. I want everyone to try and look for the bright sides, and stay strong!! Not allowing your health to control your life, nor letting anyone tell you otherwise. At the same time, finding help from medical providers to help control your pain so that you can live your life as best as you can! Not taking “deal with it” from anyone!! Thank you for telling other that as well.
A really strong thumbs up for your post, EM. I totally agree with everything you say… I am also so fed up of reading the advice which tells us to keep active as much as possible. I know it is all well meant but when the pain and stiffness in my legs is SO bad at night that I cannot get to my toilet and I end up wetting the floor? How can someone saying to me to go and exercise when I cannot even make it to the toilet in time – argh, it is so disheartening – I know it is well meant but for many us – though we try to do what we can – fight through the pain and all that advice… it just does not work for so many of us. Hang in there which sounds like such a silly greeting because I can not even bring my arms up to push a super market trolley so no ‘hanging’ on anything.. Luv n hugs in your journey through the wilderness of this illness which so many doctors just won’t take seriously……
I can do the shopping cart thing on a Sunday. I can no longer leap 6 shopping carts in a single bound though…grin.
Still some humor left in me. Appreciate the thumbs up as of now I have been down so long it is beginning to look like up to me.
Colette,
Thanks for taking the time to read my post as well as the comments. Im not entirely sure if this was in response to something Em said or towards me. My column title “Pushing through the pain” is NOT meant to be as if someone was insinuating to ignore the pain, or dismiss it. I meant it in a empowering way! As if, when life throws so many obstacles and illnesses/diseases, to never give up! Be brave and keep living life as best as possible. So Pushing through the pain, keep on going! Fighting to live and not shut down. I do hope that you start to have better days! Stay strong!!
Em, I agree with you. My friends attribute my pain to old age. I’m almost 70 but I know this isn’t just old age symptoms. Hang in there and keep trying to find whatever will give you relief.
I am glad you explained what you mean by “pushing through the pain”. Which I accept. The term “Pushing through the pain” has very bad connotations for people with FM because it implies that you can physically exercise yourself through the pain just in the same way that an athlete or athletic trainee can. Any person with FM doing this will make their symptoms worse and the worsening may last for many days or weeks. As you know 40-50% of people with Fm meet the diagnosis for ME/CFS and such people will suffer post exertional malaise as a result. It is very important to exercise/walk within a “Paced” program.
Hello Ian,
Although I am glad that you read my column as well as the comments made, further understanding that Pushing Through the Pain is meant to be Empowering! Yes, I can see how some people may be more sensitive to the title due to people in their lives to ignore the pain or walk it off. I do NOT think that is in anyway appropriate! Pushing through the pain means to me that you should never let go or stop fighting to be pain free and able to live your life as full as possible! I do hope that you have better days and can eventually be pain free! From, Lisa
Hello. What is ME/CFS?
I have a long story that I may share at a later date. But for now, reading the articles/essays and replies is step 1, perhaps.
Also, general question: do y’all use a Rheumatologist as your advocate/primary for other physicians as needed?
A touch of my recent FM-related struggles is on my blog, website noted below.
Hello Debbie!
Yes, I typically use my Rheumatologist for advocacy and for other physicians to contact when it comes to other health since your rheumatic conditions can control so much of your bodies ability to function. Rheumatologist play a big role in overall health care! I do hope you’re doing good!!
-lisa-
If you have spine pain the below may be of help. @drjohnhaiti
https://fibromyalgia001.wordpress.com/2016/06/06/spine-pain-self-treatment-6-16/
I even had a doctor tell me her daughter was in the Olympics and she pushes through the pain. I always think about what to say afterwards! Her daughter 25 me Almost 60. Needless to say I never saw her again.
Hello Connie,
Thank you for taking the time to read and respond to my introductory post. That was NOT right with the olympic coach to tell that young lady to ignore the pain or work through it. As I have told a few people who commented, that my title of Pushing through the Pain was meant to be as a empowering title. I know life can throw some really hard obstacles with our health, I simply meant that everyone who lives in pain, and with other conditions/diseases, to never give up! Keep going forward and not let your health run your life, you live it the way you want and as best as you can! Don’t let anyone or anything get in the way of that!! I do hope you are feeling ok! Take care!
I do keep active, but must pace myself. PT is working a number on me…One thing flares and then the internal fireworks begin…Also have remains of Lyme Disease so when my body gets stressed.
3 more weeks of PT and ONLY there for rehab on knee…Not until noon today. New PCP (other one left) is not in agreement w/ a specialist about my thyroid dosage and changed it!!! I am truly a mess now!!!
I try hard to be positive. Getting difficult. I take only 1 med and she just had to muck w/ it…doing the best I can.
I have gotten to where I see MD after a name I get angry…I am not a happy camper as currently I feel I have control over nothing except my own behavior and it is not easy at this time. Even a trip to get groceries is traumatic. My thyroid med dosage is wrong and I was told to give my body time to adapt. Imagine what this is doing to the fibro pain!!!!
I will get back on track. Thanks again for listening to my ranting. Not looking for pity just terribly frustrated.
Don’t worry about the ranting. We all have to do that sometimes. And, we definitely see your point. It is frustrating to go through this pain, day after day, and not have any relief and no hope of it. Keeping a positive attitude, exercising, staying mentally active… all good things, but some days you just don’t want to.
Got that right!! And, it is okay. I do the things you mentioned and do know when my positive attitude slips a way for too long it can be a long road back.
There days my brain says, “go” and my body replies, “not going to do”! Yup, the bod usually wins.
Have a good weekend or as good of a one as possible to all on this battlefield.
Just back from PT and saw a different therapist-did a superb job w/ a mini-knee massage and also taped the knee…an improvement!!
Update…I did get the prior authorization for knee injection…some good news.
Time to take a break as I am fully deserving.
Thank you Tim! The comments I’ve been getting have really been bothering me and in a way bringing me down. I appreciate what you said, and thank you for taking the time and reading my post! Keeping a positive outlook, not allowing your health to control your life is one of the best things you can do for yourself. Keep going with your head held high. 😊
Your amazing…love your positive energy. The minute you let yourself travel into self pity mode it begins a spiraling downword effect. Yes, we could all stay in bed all day, due to the pain we are in. But we can also refuse to accept the pain as a straightjacket. The mind does control us, so put happy thoughts in there. It helps. Does it make it all go away…NO. But it does remove some of the darkness.
Joanie,
Thank you! What you said just now made my day! You’re absolutely right, having a positive outlook can help how you feel tremendously! I’ve met numerous people who let their health affect them in all ways and overtime became bitter. I just don’t want to live that way. Is it hard having health problems and being in pain daily, absolutely! But don’t let it tear you down and take over your life completely. Keeping your head up and trying to find ways to keep a positive outlook helps! Thanks for the feedback and I truly hope you’re doing good!
**Lisa**
I wonder how some seem to be lucky enough to have/get the family support. Only last night my husband told me “to get a job, there is nothing wrong with you, It is all Bullshit”. I know I should not stay living in the same house as he, but where do I go, at the age of 60, and have no money to survive. Yes I do the general housework, as someone said, am the accountant (doing the banking and paying the bills etc). Why is it that there are people out there who Just Don’t Get it? I’m sorry for this comment, but there are days that I just can’t find “the support” that I Need. Yes, this is at 12 midnight as I am going through the stages of Not being able to sleep, and this is wearing me down. I cannot talk with my TMJD, I have trouble driving, and the arthritis in my hands/fingers and most areas of body, plus the Fibro, are the reasons I cannot hold down a job. I worked for 30 years as an RN supervising an ED, but now feel so useless and my mind works over=time as I still have my “brain”. Is this why I get no support, for they do Not see the Pain? How do I become the Invalid that he expects me to be so he can see?
Hello Bebi!
First off, please don’t feel sorry for commenting on my column! I am more than happy to reply and show you some support. I am so sorry to hear that you are going through such a hard time! What your husband said was hurtful and if he truly realized what are you are having to live with, should show more compassion and not aim at crushing your feelings! Living with daily pain interferes with every aspect of of life. I’m a house wife as well due to being disabled and I know exactly how hard it can be even just to be the accountant, maid, shopper, event coordinator and more. You likely work harder than he does when you factor in being in pain, exhausted and so much more. Being up all night with insomnia only gives you more time to relive those hurtful words your husband said to you. You have an invisible disease, several by the sounds of it. I wish people could see just how hard living with illnesses that aren’t easily seen by the naked eye can be. You are not useless Bebi! Not by a long shot! Have you looking into SSD? When I was unable to work anymore, I applied for Social Security Disability. I have a friend who has Crohn’s disease and her husband has said those very things to her as well. It breaks her heart, just as much as I can see what your husband has said did. He was completely out of line saying what he did. You deserve better! If you ever want to talk, I don’t mind. Try and keep that chin up!
From,
Lisa
Way to go Lisa!!! I too push past the pain…sometimes to a fault but I tell people that I can rest when I am dead. I know that not everyone is able to do this. I have my bad days but there are those days when I sit down at night and I look at what I have accomplished and smile. Unfortunately many of us that suffer from Fibro do not have a good support system. I have learned to be my own cheerleader. God will help me with the rest.