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It's a Rocky Road to Diagnosis of 'Invisible Illness': Then It Gets Rough

  [ 26 votes ]   [ 2 Comments ]
By Sleepy B* • www.ProHealth.com • May 4, 2011

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* Recently, a poster on the Hunter-Hopkins Center Facebook page asked blogger 'Sleepy B' to write her story, with the goal of helping other patients cope with their neuro-immune illnesses. Sleepy B is a young woman with Multiple Chemical Sensitivities, ME/CFS, Fibromyalgia, Irritable Bowel Syndrome, and SOTS living in the US. She continues adding to this memoir in installments at http://sailingthroughfibro.blogspot.com, and hopes that you will feel free to share her story with others.

They say, “Give a man a hammer and everything starts looking like a nail.” Reading about Sleepy B’s struggles to be diagnosed and usefully treated, we wondered, is something similar going on with doctors and antidepressants?

_________________

Posted Mon, April 11, 2011:

THE ROCKY ROAD TO DIAGNOSIS

“You look depressed.  I’m going to start you off with an antidepressant and refer you to a psychiatrist.”

I looked at the neurologist in utter disbelief; I was there because I was in pain. I had been plagued by excruciating migraines almost every day, for well over a month. I was sitting in his office, my head feeling like it was going to explode, and he was telling me that I looked depressed!

I was 15 and this was neither the first time, nor the last time a doctor would assume I had depression.

While many know exactly when they became ill, I can only narrow it down to the summer of  ’98. I was only 13, but I know I never felt the same after that particularly stressful summer. I ignored my symptoms for the first year, attributing them to other causes.  

Although excessively tired at the time of my trip to the neurologist, I didn’t think much of it. Fatigue by definition is caused by exertion, so I figured it was caused by something I was doing. I blamed it on the fact that school started too early in the morning. During the weekends and the summer I rationalized that I was making up for lost sleep.

I decided that the pain I was always in was from my backpack or gym class.

When I did go to a doctor about the pain, I was told it was just growing pains and it would eventually go away.

Previously, I had no trouble getting good grades in advanced courses while involved in multiple extracurricular activities. I found myself having to give up those activities and honors courses, and still I couldn’t seem to keep up.

By the time I was 16, I would be worn out after only working a 4½ -hour shift at my summer job. This time I couldn’t blame my fatigue on getting up too early; my shift began in the evening.

If I wasn’t at work I was usually sleeping; with all the sleep I was getting, the fact that I always woke up feeling like I had just pulled an all-nighter made little sense. I was so exhausted that I couldn’t think straight. The aches and pains that I used to be able to ignore became more distracting than ever.  

I was confused and frustrated. I was sure something wasn’t right, but none of the doctors I saw could figure anything out.

Doctor after doctor told me all my test results were fine.

A couple doctors insisted I should see a psychiatrist, but I knew I was not depressed. I even did research to see if it was possible to have depression and not know it.

I found I was lacking key symptoms of depression… I neither felt depressed nor lacked interest. I wanted to do everything I used to. I even tried on a daily basis to continue as if nothing was wrong, but the energy was not there. What was wrong with me?

Eventually, I came across the name “Chronic Fatigue Syndrome” and did some research.  It explained everything I had been going through.

Thinking I finally had an answer, I went to my doctor asking him if that could possibly be the cause of all my symptoms.  He went on a spiel about how CFS was not really an illness in and of itself and that it is usually something else.  

My doctor said he would run some tests and see if I had Lyme disease or mononucleosis and rule out anything else.  When the tests all came back negative, he decided that I must have depression.

I argued with him, and he said that I had to be open to the possibilities. So, to prove that I was open-minded, and that he was wrong, I went to a psychiatrist, who informed me that I did not have depression.  

When I went back to my doctor, he proceeded to tell me that I should get a second opinion. I told him that was ridiculous and that it would take forever to get another appointment; so he agreed to give me a referral to a rheumatologist in the meantime, to see if I had fibromyalgia.

It was the rheumatologist who ultimately diagnosed me with CFS and FM. I was 17 by then.  

After such a long struggle, I finally had a diagnosis. It had taken over three years. I wasn’t a hypochondriac, and I wasn’t lazy. Something was legitimately wrong with me.

I knew that there wasn’t a cure and that there probably wasn’t much that could be done for my symptoms, but nonetheless I was relieved.

*    *   *    *

Posted Wed, April 20, 2011:

I HAVE A DIAGNOSIS

What does one do after receiving a diagnosis of ME/CFS or fibromyalgia?

Some of us are just happy to hear that it is not all in our heads. And after such a long battle to get diagnosed, it is easy to think the worst is over. But for many of us, it’s not. Eventually, we come to the realization that we are stuck with an illness that has no cure or universal treatment. In fact, we are still figuring out what causes it.

So many symptoms and issues go along with these illnesses.

The symptoms and their severity seem to vary constantly. We often encounter the infamous Mack (when we “feel like we were run over by a Mack truck”). I used to say I woke up feeling like I was beaten unconscious the night before because every inch of my body ached in pain.

Some days I’ll think I’m fine - until I sit up and the room spins or I’m overcome with nausea. Other days I can’t even get out of bed. If I can get up, it usually feels like weights are dragging me down. Fibro fog constantly makes me feel like I’m trying to listen to what someone is saying after being suddenly awakened during the deepest part of sleep - only every other word registers.  

Along with these illnesses comes a lack of understanding from others, as well as difficulty finding a knowledgeable doctor.

I naively thought once I had been officially diagnosed that I would get the help I needed. I also thought I was done with antidepressants and psychiatrists. I was surprised to find how little changed after I received my diagnosis.  

The rheumatologist who diagnosed me referred me back to my primary doctor. So what happened when I went back to my doctor?  He informed me that:

• I should still see a psychiatrist  - for patients with chronic illnesses develop depression,

• And I should take some antidepressants because they tend to alleviate pain and fatigue.

I tried to explain to my doctor that I had taken antidepressants back when I was having migraines because the neurologist convinced me that they would make my migraines go away.

Antidepressants hadn’t made my symptoms go away then; why would they make them go away now?

He told me that all antidepressants were different and that I should try the ones I hadn’t. I figured there was no harm in trying.

Some people have great success with antidepressants for ME/CFS or FM. My experiences continued to be anything but successful.

*    *   *    *

Posted Wed, April 27, 2011:

WHEN SIDE EFFECTS ARE WORSE THAN SYMPTOMS

I was only 17 when my doctor put me on [ the antidepressant] Wellbutrin for my ME/CFS and fibromyalgia symptoms.

Shortly after starting it, I began waking up in the mornings on my own. I didn’t take naps during the day anymore; in fact, I hardly ever slept.  

At first I thought it was great. Then I started developing paranoia, anxiety-attacks, and even minor hallucinations. I was so scared… I thought I was developing schizophrenia.  It wasn’t until I talked to my mom about what was going on that I realized that it was probably from the Wellbutrin.

I was so used to having no response to medications at all, that I actually forgot there could be side-effects.  

My doctor lowered the dosage. I continued taking Wellbutrin only because I wanted so desperately to be awake more hours than I was asleep.

After lowering the dose the side-effects went away; a while later all the effects diminished.

Telling me I had developed a tolerance, my doctor upped the dose. Again I enjoyed having insomnia, rather than sleeping all the time. A little while later, the bad side-effects came rushing back, even worse than before.  

I was at my aunt’s house when I actually started blacking out. I felt like I was in a dream that I couldn’t wake up from. I wanted to turn it off, to make it stop, right there and then. My aunt called the doctor, who said to slowly go back to the old dose: For the time being, there was nothing that could be done. I had to be taken off the drug slowly to prevent severe withdrawal symptoms.  

It took a while for the symptoms I had to dissipate and, despite following the doctor’s directions, I still had withdrawal symptoms. It felt like something was crawling through my body, and I desperately wanted it out. It was the worst feeling in the world; I couldn’t even fall asleep to sleep the feeling off.  

Later on, my doctor actually tried to convince me to try Wellbutrin again.

That time I refused. Being awake only a few hours a day beat what I had gone through. At that point, my doctor said that there was nothing else he could do for me; I would have to just deal with it.   

My experience with Wellbutrin made my symptoms seem bearable. I figured that was as good as it was going to get.  Still only 17, I gave up on ever finding a doctor who could help me or a treatment that would work. No medication beat awful side-effects.  

(STORY TO BE CONTINUED IN UPCOMING POSTS AT http://sailingthroughfibro.blogspot.com/)

- Sleepy B


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DISCUSS THIS ARTICLE   (2 existing comments) Post a Comment 


WOW!
Posted by: loopygirl69
May 4, 2011
Sounds like my life story. I wish I could say I'm glad I'm not alone with the ignorance of some doctor's, but I can't be happy that I'm not the only person suffering like this. I was diagnosed in 1995 with FM, now every doctor I see says "I don't perscribe my FM patients narcotics" like I EVER asked for them, and if they would listen to my list of drugs that I have tried, narcotics aren't even on the list. And because I have FM, every other thing that goes wrong is "nothing to worry about, it's just your Fibro" I could be having a heart attack and my current doctor would tell me it is the fibro and try to up the dosage of my antidepressants.
Reply Reply

don't rule out Lyme, Babesia, etc -- blood tests *not* conclusive
Posted by: artifact
May 5, 2011
I, too, was 'diagnosed' with Chronic Fatigue Syndrome, and felt relieved to 'know' what was wrong with me, even if there weren't any dramatic treaments for it. After dragging along for another 4 years, it turns out that I was infected with both the Lyme pathogen (Borrelia spp) and Babesia -- a nasty little 'bug' (protozoan) related to the ones that cause malaria and sleeping sickness. Blood testing for Babesia is entirely worthless, it must be diagnoses based on symptoms. Blood testing for Lyme is a major grey area, and somewhat subject to interpretation. Be sure to use the *Sensitive* Western Blot from Igenex lab in Calif. And look up Burrascano's 2008 Treatment Guidlines on the web to better understand the interpretation involved. Several prominent docs (Teitelbaum included) specializing in CFS have concluded that at least 1/3 of CFS patients actually have Lyme and/or a related co-infection. Also realize that about half of Lyme victims do not recall ever having a tick bite, nor having the bullseye rash. Lyme symptoms are incredibly diverse, with involvement of neurological as well as hormone systems, plus cartilage, eyes, etc.
Reply Reply
 
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