This post will not be so much about CFS...

I have not been posting for a long time. The reason: I have felt quite bad for all of this summer, not because of the CSF (even if that is part of the problem) but because of another condition I now have as well.

Some years ago, I noticed my hands and feet had grown and I also felt more tired and had a lot of pain everywhere. Yes, you heard right! My feet grew 4 sizes in about a year! It turned out I had a pituitary tumour that was producing growth hormone (GH), so my body in some respects started to grow as if I was in my teens again. Anyway, now two years later, my doctors have tried four different medications to stop this excessive GH production. Unfortunately, all of them have given me such bad side effects I have been forced to stop the treatments.

What I can figure out myself, these terrible side effects is post likely a result of my CFS! I get pain and even cramps in my leg muscles, much more chest pain than usual and also some disturbances in the heart rhythm and some other reactions like totally blocked out in my brain and ability to concentrate, when I take these drugs to curb this particular pituitary tumour. Most of the drugs have interfered with the dopamine system, so it’s a very complex interaction; the endocrine specialists doesn’t know or understand it themselves. It’s only because of my own knowledge and experience in cell biology I have been able to trace down some new findings and get some kind of explanation of why I have reacted this violently on the treatments.

This is not the only other medical problem I have had in the years before. But I might come back to that later some time.

I’m not complaining. I only tell my story to say it is possible to survive even when you suffer a lot constantly. I guess it is because of our intrinsic ability to adapt to what we feel in our bodies, as human beings. The ‘only’ difficulty has been how friends and even family disappear when it gets ruff... instead of staying and supporting. It could happen to anyone! It’s our biological fate.

Anyway, now after two months, I am mostly off all these side effects I have experienced this summer again. On the other hand, what is waiting is for my doctors to decide on surgery of the tumour or not instead. I am waiting for this decision this week. It is really a tiny operation, right through the nose bone and into the part of the brain where the pituitary sits, but it is a delicate procedure. I’ll just have to wait and see.

ZenMaster

Here are some references...

...to the original work I talked about in my previous post. If anyone is interested I can send you a more complete list. Just send me an e-mail and ask for it!

ZenMaster

References related to energy metabolism in CFS:

• Assessment of cardiac metabolic disorders with positron emission tomography.

  Waldenstrom A, Langstrom B. Curr Opin Cardiol. 1991 Dec;6(6):965-71. Review. PMID: 10150067 [PubMed - indexed for MEDLINE]

• Human uterine smooth muscle exhibits a very low phosphocreatine/ATP ratio as assessed by in vitro and in vivo measurements.

  Steingrimsdottir T, Ericsson A, Franck A, Waldenstrom A, Ulmsten U, Ronquist G. Eur J Clin Invest. 1997 Sep;27(9):743-9. PMID: 9352245 [PubMed - indexed for MEDLINE]

• Ionophoric action on the cellular membrane as a pathophysiological mechanism in syndrome X: myth or reality?

  Waldenstrom A, Ronquist G. J Intern Med. 1995 Sep;238(3):187-9. No abstract available. PMID: 7673847 [PubMed - indexed for MEDLINE]

• Disturbed energy balance in skeletal muscle of patients with untreated primary hypertension.

  Ronquist G, Soussi B, Frithz G, Schersten T, Waldenstrom A. J Intern Med. 1995 Aug;238(2):167-74. PMID: 7629485 [PubMed - indexed for MEDLINE]

• Coxsackie B3 myocarditis induces a decrease in energy charge and accumulation of hyaluronan in the mouse heart.

  Waldenstrom A, Fohlman J, Ilback NG, Ronquist G, Hallgren R, Gerdin B. Eur J Clin Invest. 1993 May;23(5):277-82. PMID: 8394817 [PubMed - indexed for MEDLINE]

• Phosphocreatine turnover and pH balance in forearm muscle of patients wit syndrome X.

  Soussi B, Schersten T, Waldenstrom A, Ronquist G. Lancet. 1993 Mar 27;341(8848):829-30. No abstract available. PMID: 8096030 [PubMed - indexed for MEDLINE]

• Angina pectoris patients with normal coronary angiograms but abnormal thallium perfusion scan exhibit low myocardial and skeletal muscle energy charge.

  Waldenstrom A, Ronquist G, Lagerqvist B. J Intern Med. 1992 Apr;231(4):327-31. PMID: 1588255 [PubMed - indexed for MEDLINE]

• Low energy charge in human uterine muscle.

  Wedenberg K, Ronquist G, Waldenstrom A, Ulmsten U. Biochim Biophys Acta. 1990 Jan 29;1033(1):31-4. PMID: 2137351 [PubMed - indexed for MEDLINE]

Now comes the big news...

...even though it is almost twenty years old!

In the late 1980-ies and early 1990, my cardiologist together with a biochemist at the hospital designed and performed a series of experimental investigations that really turned out to give some new results on what is wrong when you have CFS.

In short, something is wrong with the energy consumption, or as we cell biologists say the ATP metabolism. ATP is the prime energy molecule in cells, and most of it is produced in the mitochondria of cells. It was not that there is too little ATP, on the contrary the synthesis in my heart or skeletal muscle cells were 3-5 times the normal when tested on biopsies. Still, after only a few minutes work, the ATP levels could drop to only 10 or 20 percent of the normal values, while in normal people it only decrease 10 or 15 percent in total, during the same conditions. Furthermore, it took more than an hour of rest to regain the ATP levels I should have, while the control persons got their ATP back within a few minutes.

Another observation from these experiments was that the acidity, or pH value, inside the muscle cells dropped dramatically, from the normal 7.2 down to 6.0. This was so extreme that no one had seen before, and was believed the cells shouldn’t survive, but obviously I did – well my muscle cells was live and had no ultrastructural damages seen in many other conditions. When this result was repeated at several occasions, and with different techniques, we had to believe they were correct. The low pH was also related to production and release of large amount of lactic acid in the blood.

All these experimental data fits so well with the clinical picture! I can move around, but slowly in order to not ware out totally. However, when exercised in some way – like walking for a while slowly – it can take more than a day, even two days before I am back to my “normal” level of strength. And I still feel – always – as I have been running a marathon in my legs. That is a lot of lactate all the time, giving me muscle ache.

Later, I will try to tell more about the specific tests that were done – give more technical details – because I think this is a very important finding they did, not only on me but on a small group of people with CFS here where I live. However, it was never noticed at other research places, even though most of these results were published in scientific journals. One explanation could have been it was rather difficult and complex experiments to perform, but I really don’t know why.

Well, so much for my story today. No treatment came out of this, and I still suffering the same way, untreated. And the reason for this metabolic disturbance, the original cause, is still of course obscured.

But if you want, go ask your doctor about these things! Maybe there are someone that will be able to take up this again, and come a little further!

ZenMaster

Sometimes, everything slows down...

Sometimes, everything slows down...

... like the last week. And this...

ZenMaster

What an excellent machine...

What an excellent machine a computer is, particularly when you have CFS. I can write a sentence, or sometimes only a half, save it to some later time when I feel a little better, go back, write more, rewrite, find words or information in small bits and pieces to add, and then, after a while this kind of coherent text appear! I don’t know how coherent I am in my thoughts, but at least it looks quite impressive to me when I see this growing after a while! Hehe...

To continue my story: I guess I had my moments with my doctors, since I am a cell biologist by training and fascination. I’m not a medical doctor, just a Ph.D. who have worked with cells, how they are built, look like, grow and function, so I know some details about life in general that doctors don’t know! (Hehe...there I got it!). Of course, this was a problem as much as a strength. I probably got in conflict with half of the doctors I met, because they couldn’t take a patient knowing more about some details that they didn’t understood. The rest half could grudgingly accept my questions – and order some more tests – and then there were one or two that really could talk and discuss with me what was going on, what they knew or not, and even come up with new ideas to test together! I guess I was lucky after all! But the first such doctor came to the cardiology department I spent a lot of time at, only 2 or 3 years after I became ill the first time.

During these first years, I had numerous ultrasound tests of the heart, gamma-camera tests, and coronary angiograms, not to mention all kinds of regular blood tests. None of these showed there was really anything wrong with me.

I had my mitral valve prolapse, but that I knew of before, and probably have had all my life, and it was perfectly constant, so it hadn’t change and wasn’t an explanation to my sufferings.

OK, they could see some smaller areas in the heart muscle that had ‘some’ sort of disturbed micro-circulation from the gamma cam pictures; the capillary vessels didn’t allow the blood to flow properly at times. But this finding was varying from time to time, different areas and different extent, so they really didn’t know what to do about it. Anyway, at this point, I got a diagnosis: negative angina or spasm in the capillary blood vessels in the heart!!! The older female cardiologist explained it as ‘sometimes we see patients with the same symptoms as with angina pectoris, but they don’t have any blockages in their big coronary arteries’. Later I learned that up to 10-30 percent of angina patients are in this group!

Well, this prompted the doctors to put me on beta-blockers, calcium-blockers, digitalis and a few other conventional heart medications. Of course I didn’t get better, but I took them for years anyway, silly as I was. Sometimes I had as many as 12 to 15 different pills to take every day! And, ohh yes, nitro-glycerine in various preparations: fast working pills under the tongue, slow releasing to swallow, drip when I was at the hospital, even a paste to put on the chest twice daily!

Well, at least they tried to find something that would help! What a guinea pig I was, but THAT I didn’t mind! Better try something than being ignored!

This weekend...

This weekend has been harsh. That’s why I haven’t blogged for a few days. But that’s how it is living with CFS, some days are worse, some days are less bad, none are good!

ZenMaster

That first summer...

That first summer, my then wife really didn’t understood what was going on with me, and got very annoyed about my ‘laziness’, as she put it. Our two kids were still very young, about four and two years respectively, so of course it was a busy time with them. We both also had advanced jobs, which took much time and effort for both of us. I never questioned that I was ill this first period of time, you don’t do that when your body play such tricks with you, and give you such sensations as when you first come down with CFS. You really feel something is wrong throughout your body, if you have strength enough to think at all! The questioning came later, and I would say exclusively because of people surrounding me, constantly questioning my state, saying like: “You don’t look ill, so why don’t you go about your life as usual” and other similar things. You have certainly heard all these comments yourself! Well, anyway, that first year after becoming ill I went through a LOT of tests and investigations at the hospital, I guess since I originally was placed at the cardiology department, but also because my own opinions! I knew something was wrong in my body, and I was constantly nagging and after the doctors, asking questions and demanding answers, even if it would be “I don’t know”. This is of course the most difficult answer a medical doctor can give! Not for the patient, but for him/herself! Now my energy is depleted in my brain, so I will have to continue later....

It all started...

It all started one weekend with an intense flu-like condition. It didn’t extend more than two or three day, but I experienced severe chill, muscle ache and general malaise. After that I felt OK again. Three or four week later, I suddenly developed chest pains and became more and more weak and just wanted to sleep. Since this was during the summer holiday I didn’t do anything special, just trying to take it easy, and slept all the time. Later I started also t develop joint pain, in my ankles and knees and hands. A month and a half later when I was supposed to go back to work, it didn’t work at all. I ended up at the emergency room, at the university hospital where I lived. This was some 27 years ago. Since I had significant chest pains still, and had been in contact with cardiologists at the hospital before (I had a minor mitral-valve prolapse discovered a few years earlier) I was put in the cardiology ward. Over the next year(s) I spent more time there than home, running tests, just resting with extra oxygen, or getting morphine to ease the pain; getting back because of severe chest pain and fatigue outbreaks, checking for heart infarct, which they of course never found any evidence for. Half of the doctors said I was imagining, being a hypochondriac, half didn’t know what to say, and then there was this older, experience female cardiologist who told me that “I have seen this many times before, but we don’t know what it is”! Well, so much for today. I will tell the rest of the story later... I’m sure this is not a unique story about how CFS can present itself, on the contrary quite common.

Living with Chronic Fatigue Syndrome

I have had Chronic Fatigue Syndrome (or CFS) since the mid-1980. Here I will try to tell about my daily life and how I am coping, give hints about what is known about the causes of CFS, and stimulate discussions between fellow sufferers. Even if the condition have been known for quite some time, only now at a few places, it is taken seriously and is called a real disease. But we all know that - we with CSF.