This is part 2 in my series about Chronic Fatigue Syndrome. In my last article, Chronic Fatigue Syndrome (Cfs) – What? Is That Even a Real Disease? Read more: http://www.bukisa.com/articles/445760_chronic-fatigue-syndrome-cfs-what-is-that-even-a-real-disease#ixzz1Cb2DoPjK, I explored my unfortunate introduction to CFS.
CFS is a strange disease. It has no apparent bias towards one or two symptoms, but instead is happy to take over your body in many ways, making you a stranger in your own skin. Not only does it affect your body, but it affects your mind as well. Mine came on with so many symptoms and at such a rapid pace I never even saw it coming.
Looking back my biggest worry was that I would lose my job. Since that ship has now sailed, I can see many ways I wish I had approached things differently.
I was having so much trouble staying awake and focusing that I kept going to the doctor. I had so many symptoms I didn’t even know which ones were important to talk about. Here is a summary of the things I was experiencing:
- Extreme fatigue (funny – there is no word to adequately describe the fatigue… extreme, overwhelming, all consuming… even these attempts don’t do it justice)
- Memory problems
- Inability to focus
- Trouble sleeping (talk about cruel, you are so exhausted but can’t seem to sleep?)
- Strange problems with my vision
- Trouble staying warm
- Menstrual problems
- Bowel problems
I had a battery of tests done but it wasn’t until the test for Epstein Barr virus came back with a really high positive that my doctor finally seemed to understand maybe something was really wrong. There are multiple EBV tests that can be done: one test shows past infections, another shows current infections, and the third shows upcoming infections. Anything above a 0.9 is a positive, and mine came up over 5.0 with current infections. It was my third visit, and it took three weeks after the test to finally get an appointment.
My doctor finally brought up the words “Chronic Fatigue Syndrome” and I was shocked. She scheduled me to go see an Infectious Disease doctor. I was so scared – infectious disease? Could I have given something to my family or friends? Those words struck fear in me I can’t explain. I was afraid to tell people because they might not want to be around me. The Infectious disease doctor explained to my doctor that they didn’t see people for EBV. The suggestion was testing for a battery of sexually transmitted diseases (STD’s). More blood tests and a couple of weeks later, it was confirmed that it was not an STD. Talk about a horrific waiting period. I was imagining everything bad in the world, and spent hours researching EBV and STD’s. So far my experience was frightening and consisted of a lot of waiting
In my research information was conflicting whether EBV and CFS are associated. Medical doctors seem to be of the opinion they are not related, and naturopathic doctors feel it is. Needless to say my doctor still didn’t know what to do with me.
I had taken a leave of absence from work at this point and the time clock was ticking. Time was not on my side to figure out what was wrong and get it “fixed” before my FMLA leave was going to run out – so I tried changing doctors to someone who would get test results back to me faster. This was a BIG MISTAKE! If you have someone who is willing to work with you, research the illness, and believes in CFS you should hold on to them like the biggest strike of gold in the world!
I was referred to an allergist who confirmed allergies, but thought the rest was in my head. I was sent to a psychologist. The psychologist had a three month waiting period. I couldn’t sit back for three months and do nothing so I went back to the computer to do more research.
I ended up asking my doctor to send me to a Rheumatologist (I had researched what doctors in Washington State would help with CFS, and the help there was bleak. The best I could find was to see a Rheumatologist… so that was where we started). I waited the three weeks to see the specialist my doctor referred me to, only to find out they didn’t work with CFS. Another referral later, and I ended up with a specialist who didn’t really work with it, or even believe in it, but he was willing to see me. He spent the time trying to convince me that it wasn’t CFS because I didn’t have constant fevers. He sent me to an ENT because it must be problems with my ears. My ears came back just fine, and I told him nothing in my research said a lack of fevers ruled out CFS. He was furious that I questioned him. We agreed to part ways as patient and doctor. I needed a partner in this journey, not a dictator.
I went to a CFS clinic, the only one I could find in WA, but they didn’t take insurance and the cost was prohibitive. I was not able to go back. CFS was confirmed. I went to another Rheumy recommended by a friend who had fibromyalgia. I didn’t think I had fibro because I had misconceptions about what that meant. It was at this time that I received a confirmed diagnosis of Fibromyalgia. This doctor did not have expertise in CFS either, but explained to me that many people who have one have both. Although he didn’t have a lot of knowledge about it, he wasn’t averse to working with someone who had it and was willing to try and work with me. We got along well and finally I felt like I was not alone in this, but had someone to help me in this journey. I was started on medications to treat the fibromyalgia.
The three months had passed and I finally go to my appointment with the Psychologist. Unfortunately, he said that once a Rheumy was involved, he didn’t have much to offer (that was an expensive waste of time!)
I got a referral from another friend to a naturopath (ND) who confirmed they had experience working with patients who have CFS and Fibro. I can’t express how many times I wanted to give up. I can’t convey the feeling of failure, hopelessness, and frustration over trying to get someone, anyone, to help me. Being told it was in my head, when I was already so afraid that could be true. Being told CFS didn’t exist, being told the many things I was told. A person struggling with this demon is already so beaten down and defeated, isolated and exhausted, unsure and insecure – it is horrible that it is so difficult to find help. I made an appointment with the ND and still see her today.
I still don’t have a medical doctor that specializes in chronic fatigue syndrome. I can’t find anyone who in my area who does. I’m just lucky enough to have kept fighting and advocating for myself until I found someone willing to try and help me. Now I have a team of doctors, and we are all playing on the same team, because we work together; my rheumatologist, my regular doctor, and my naturopath. When able, I also get counseling because the depression that comes and goes is so overwhelming.
I leave this installment repeating one thought: You have to be your own advocate. You have to remember that medicine is not cut and dry, and doctors are learning as well. Advocate for yourself. Educate your providers and make sure you only work with people who treat you as their partner. Don’t give up. Look for support groups online, or in your area. http://www.dailystrength.org/c/Chronic-Fatigue-Syndrome/support-group is a place I found to help me.
In my next segment, I will talk about the different treatment options I’ve tried, been through and am still trying.