Me current improvement 3: Diagnosis time

[dejurgen]

About:
In this part I describe the events that lead to my CFS/FM diagnosis. It shows how my longtime declining health turned into a gradual onset case of ME/CFS. Together with other parts of the series it should help other patients see similarities and differences between their and my case. This in turn could help them better understand how things I did could potentially affect them.

Extra load upon a weakened body:

• Mid thirties I bought a new to be build house. In order to save money I decided to do a fair amount of finishing in the house myself with the help of my dad.
• In hindsight it sounds unreasonable to do this given how often I was totally exhausted after work even before this. But as my doctor and other doctors said, most of my symptoms were due to stress. I can enjoy some amount of DIY and working with my hands could help reducing stress. So I hoped that doing some physical work at a moderate pace would reduce the so called stress-induced fatigue. This hope was in vain.
• A short while after I began finishing the interior of my house, I got involved in a nasty conflict at work. This further drained my energy levels.
• I kind of evaded this conflict by moving a bit in the organization. This caused a temporary increase in workload. Together with the remaining DIY and moving, it was way too much. If I would have come out of a long quiet period and have been in good health, I might have been able to get through this period for some time. But I hadn’t had a quiet period for a very long time and my health was already in a precarious situation.

Ridiculous “fatigue”:

• During that period I had to drag myself out off bed, push me very hard during the working day in order to be able to keep up at my job and completely crash once at home.
• It took me about 15 minutes to do one flight of stairs when going up. That was doing one half in a few minutes, sitting for 5 minutes midway, trying to get to the first floor in another 5 minutes and resting another 5 minutes at the top.
• Going down went faster. I had several instances I wasn’t able to do it wright and fell/slid down, fast and painful. I had some injuries but was lucky they weren’t too bad, thanks to a few walls breaking my fall.
• Crossing my own quiet street by walking became challenging. When pushing myself very hard at work I had some focus. When I got at home and had given all I had during the day, it was like I lived in a gray fog making vision blurred, senses and reaction speed slow and dulled. It was like I was thinking in slow motion and the world around me was put in fast forward.
• At home, many times I bumped into the door frame. When trying to pass through a door opening, I did no longer realize I had to leave some extra space for my shoulders to fit through the door opening. Just seeing the opening in front of me wasn’t enough. It’s so basic. Any animal soon learns. But for my mind that was too much a challenge when my energy for the day was spend.
• At that time, finishing my house was obviously put on hold. It was a bit of indoor camping but that was the least of my problems.

The burn-out pitfall:

• After several months it got a bit quieter at work. I finally got the energy to go to my doctor. The diagnosis was burn-out. He proposed I would do some more sport.
• I felt I was not ready to start exercising. If I would get any more exhausted I would not be able to get to work safely. So I luckily decided to wait until I rested and improved sufficient.
• 3 months later I could walk again 4 to 5 km with some rest on several benches in between. It was the last time ever I had a slow and partial recovery by resting. I decided to give exercising a try and went 2 times a week to a guided group session in the gym.
• The first week in the gym went fine. My endurance was below par but my strength was above average. The next week my body began to suffer a lot. The last time I went I could barely pull the bar with zero weight added. Still, this very small effort made my arms tremble and shake fast 5 cm sideways for 5 to 10 minutes. Despite the cheering to continue by the instructor and participants I decided to quit. This wasn’t normal and continuing made no sense whatsoever to me.
• In the coming weeks my condition kept declining rapidly despite rest. That’s what I call the burn-out pitfall: testing the burn-out hypothesis before the ME/CFS hypothesis by starting to exercise more. If it’s wright, you improve. If you have got ME/CFS however then disaster awaits.

Step wise diagnosis:

• This time I prepared myself before going to my doctor. I had clear and logical reasoning coupled to observations why this couldn’t be stress, depression or burn-out. He went along and did some more testing.
• When results for blood vitamin D levels came in, his take on the situation seemed to suddenly switch. I had 5.5 units where the minimum level was 20. He said he had each year in spring patients with a clear winter fatigue with vitamin D levels dropping between 15 to 20. I guess he very rarely saw such low values as I had.
• He sent me to a few doctors and awaited each time their conclusion before deciding where to go next. Blood tests, X-rays and MRI scans were done to exclude the most common diseases like cancer, HIV, RA, MS, Lupus… also able to explain extreme fatigue and pain. At another center I had two scientific proven intolerance tests done. Both gluten and lactose intolerance turned out negative.
• One doctor had some experience with patients with CFS. In his experience there were a few common potential causes of CFS that had to be looked into. With directed questions he knew I had a few weaknesses to viruses. Therefore he decided to try and give me Isoprinosine (Imunovir).
• Within one week my still declining health stabilized. The next week there was some recovery that leveled out while continuing taking the drug. I am very glad this good doctor helped me to learn and love this medicine. It made a huge difference in my ability to fight back this disease.
• As it was now clear that all this pain I had for so long was not an expression of stress but just plain pain, I asked my doctor to subscribe me again Cymbalta. It helped me quite a bit with pain in the past. I stopped taking it before as I believed that, if it were stress induced pain, I had to learn to reduce stress rather then taking medications all my life. For those considering Cymbalta as a pain medication, know that it helps some but there are thousands of patients who call it one of the nastiest drugs there are both in side effects and withdrawal problems.

The path leading to CBT/GET:

• While I had my health stabilized to or below 50% of normal, I decided to not to give my body a full rest but rather to work half time. With health close to 50% of normal that sounds doable but a lot of this energy is used for eating, basic hygiene, shopping for groceries, basic tidying up the house, friends and family… so that less then half of the energy that is needed to do a full time job was available. In reality I lacked sufficient energy to do a half time job.
• I tried to work part time for almost a year. Next to it I went two times a week to a physical therapist doing light exercises to keep me in shape and hoping it would help recovery. The therapist did adapt intensity to my requests, but I still was believing that in order to improve I had to work hard for it.
• Maybe it was too optimistic an estimate of me that I was close to 50% of normal health at that time. In order to somewhat cope with my part time job and daily life I had to suppress my emotions a lot. Many say only negative emotions do cost energy but in my experience that is clearly not true. Pavlov's dog wise I learned to control and restrict my emotions a lot: even just being plain happy caused a huge surge in pain body wide. This was most likely due to even positive emotions costing far more energy than I could spare. Strong surges in pain often follow exhaustion quickly with me, within minutes sometimes.
• When health further declined during that year I had to take the decision to cut back from working completely and hope for the best. As over here large amounts of ME/CFS patients are cut off of vital access to benefits I reluctantly had to go to the “specialized” CFS/FM center where CBT/GET was the one and only therapy for all. I had to chose between a big chance to be cut off financially because “I did not prove to be even willing to do any effort to get better” and risking damaging my health further potentially to the point it was plain obvious for all I was truly ill but at least have money to pay for food and housing. That was a tough choice but I went for the latter, hoping that being a bit careful would help prevent disaster.
• Due to long waiting lines for CBT/GET “therapy” I had another 1.5 years of relative life quality.

Hormonal substitution:

• In the meantime I went to a doctor who had a mixed reputation in treating CFS. Some patients were very happy with him, others not at all. Medical establishment shunned the doctor.
• Based on a mix of tests the doctor decided I had a clear problem of a damaged hypophyse and needed 4 hormones to supplement the problem. He also claimed I had leaky gut and had to stop the 2 medicines that worked somewhat form me (Isoprinosine and Cymbalta) because “they were poison”. For the leaky gut problem he prescribed a box full of supplements, vitamins, minerals, probiotics… To me and my own doctor the blood tests were at the very least in range. Only the urine tests showed values clearly out of range but my doctor had no experience with it.
• As I had to have a brain scan soon after anyway I asked to take a look at the images and see if the hypophyse was normal. Despite the doctor prescribing hormones’ very clear conviction it was damaged there was absolutely nothing abnormal to see I heard.
• Several months and a blood test later he claimed I had improved a lot. I clearly replied I felt worse. He stated it was impossible, I was better. When I still claimed I felt worse he said another hormone was at the limits of what it should be and he would add it to my regime. A few months before however he claimed I was lucky I did not need this hormone as it was a very expensive one.
• Both these claims plus the fact that he diagnosed me for having a very clear and strong hormonal problem based on using the urine values as proof (where no one else could find any problem with the blood values) conflicted too much with the fact that he claimed I obviously improved while he had no new urine values and did not even suggest to redo this test.
• As I was in another diagnosing center where they very much disliked this hormone approach they redid some blood testing and a professor tried to convince me that I absolutely did not need any supplementation. If I would have improved the professor would not have convinced me, but I was worse and the hormone prescribing doctor did some things causing me to doubt already so I decided to quit the hormone therapy.
• I did not added Isoprinosine and Cymbalta to my medications scheme at that time as I still believed leaving them out was the better choice for improvement.
• It was a lucky circumstance I went to this center as the professors assistant clearly explained me the importance of not quitting hormone therapy at once. The therapy had shut down my own hormone production and cutting supplements at an instant could plain kill me. Nobody before considered telling me! Knowing myself I could have decided one day I’d just quit them as they didn’t help me, so that was vital information!

Most important thing I learned here:

=> Stopping hormone therapy must always be done under medical guidance for if not it can be deadly!