Friday, 12 September 2008

Today I had...

... the first MR brain scan, again, after the surgery in March. Six months now since they were in and poking my pituitary. It's been some long summer months, mostly with heavy tiredness and pain in the muscles, but some short breaks for a couple of weeks when I felt better. Then again, tired, weak and in pain...

It has been disappointing; I had expected this summer would be better after so many years of weakness in my body. I try to convince myself (it only works from time to time... haha!) that it takes time for the body to adjust to the "normal" hormone levels. They are still exquisitely normal!!!

So, I expect the MR-scan will also show no residual tumour, at least not for now. It is strange how divergent our bodies can behave... I should be very well, but I feel like shit!


Friday, 1 August 2008

Could these drugs...

... be something that would work for CFS?

Researchers Identify Drugs that Enhance Exercise Endurance HHMI News - July 31, 2008

... Researchers have identified two drugs that mimic many of the physiological effects of exercise. The drugs increase the ability of cells to burn fat and are the first compounds that have been shown to enhance exercise endurance.

Both drugs can be given orally and work by genetically reprogramming muscle fibers so they use energy better and contract repeatedly without fatigue. In laboratory experiments, mice taking the drugs ran faster and longer than normal mice on treadmill tests. Animals that were given AICAR, one of the two drugs, ran 44 percent longer than untreated animals. The second compound, GW1516, had a more dramatic impact on endurance, but only when combined with exercise.

Ronald M. Evans, the Howard Hughes Medical Institute investigator who led the study, said drugs that mimic exercise could offer potent protection against obesity and related metabolic disorders. They could also help counter the effects of devastating muscle-wasting diseases like muscular dystrophy. Evans and his colleagues, who are at the Salk Institute for Biological Studies, published their findings on July 31, 2008, in an advance online publication in the journal Cell. ...


There have been...

... a few days of really hot summer weather here this and last week. The temperature has often been above 30 degrees Centigrade. THIS makes me feel great, at least less tiredness in muscles and less lactic acid-feeling in my legs! Everyone else (almost... hehe) complain about the hot weather, for me it is the ‘once-in-a-year’ time for some relaxing. I should already a long time ago, moved to a much warmer and sunny climate, I know!


Tuesday, 22 July 2008

I’m still...

... so extremely tired all the time. Today I was to an optician; I need new glasses for staring at this screen... hehe. The old one’s broke last week. After a long, almost an hour of checking my eyesight, she concluded that I should go back to an eye doctor before I get the new glasses. Some things were changed from earlier, and she could not (or would not) say if it was a result of the surgery, or ‘normal’ age-related changes. So now I have to find someone at the hospital – in the middle of their summer vacations, when many departments are closed – and try to pester them to give me a time as soon as possible! The Swedish healthcare doesn’t work particularly good during July and August – every doctor and nurse what their holiday then!


Monday, 30 June 2008

It's been a terrible month...

... as you see, I have not posted in a long while! It's been a terrible month. Tired like hell in all my muscles, not sleepy, but tired and weak. Not so much pain this time. I was put on some cortisone again early in June, by my doctor, but it had no effect. Last week when I talked to her again, she could not understand why I was feeling so bad. So, 8 more tubes of blood on friday to the lab, to check a lot of the hormone levels again was the 'answer'!

OK, ok, I do have CFS also, and that could be the explanation, but none of my doctors know anything about that, so I am just in limbo as usual.

Well, I guess I should wait and see until these latest blood tests are done, maybe it is something wrong with some hormone system after all? Who knows...


Saturday, 31 May 2008


... NY Times has a series of articles about CFS. Not particularly informative, as usual, but still some attention to the problem!

Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’ NY Times - Saturday, 31 May 2008


Thursday, 29 May 2008

It's been some bad weeks again...

... a couple of weeks ago, I stopped taking the cortisone I was administered after the surgery and removal of the pituitary tumour. While I was decreasing the dose, I started to feel extremely tired and weak. Now more than two weeks later, I still suffer from this extreme tiredness. I don't know why this happened, I though I would feel stronger when I could cut out the cortisone dose... hehe!


Tuesday, 6 May 2008

Seven different genetic types of CFS’ discovered...

Geneticists from St George's Hospital, University of London have identified a biological basis for seven different subtypes of chronic fatigue syndrome.

The research findings are to be presented to a conference in Cambridge.

Read more: Seven genetic types of ME' found

BBC - Monday, 5 May 2008 00:02 UK


Tuesday, 8 April 2008

A biological link between pain and fatigue?

A recent University of Iowa study reveals a biological link between pain and fatigue and may help explain why more women than men are diagnosed with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome.

Link: U. Iowa study finds biological link between pain and fatigue


I'm still...

... recouperating from the surgery. It is getting better... slowly.


Wednesday, 12 March 2008

I still feel like...

...I have been smashed up on my nose and eye... hehe! The eye is running, and sometimes there is a little bleeding inside the nose. But on the whole, I have to say, it has gone pretty well. The worst thing: I had to shave off my moustache and beard, I have had for more than thirty years! My kids hardly recognized me; they had never seen me without it! Neither did I! I also have a lo of headache, so it makes me worried something is wrong.

But it was a ruff week, last week... But I guess it is just wait and see.


Monday, 10 March 2008

Finally I have had... transsphenoidal surgery last week, to remove the GH producing tumour in the pituitary.

Well, it was a little more complicated than just up through the nose, they also had to go in and open up from the outside of the nose, close to the tear duct on one side and the eye, so I was cut at two places during the procedure. Therefore it took six hours, instead of the regular 3 hours for the transsphenoidal surgery.

This was a few days ago...

Everything seem to have been going well, I could go home already on Friday. Tired and weak, of course, but somehow already feeling better in many parts of my body that have given so many symptoms and pain the last several years. Well, I have to wait and see. In a month’s time, the endocrinologists will make a lot of tests, to see what have happened with the pituitary function.


Tuesday, 12 February 2008

I wonder if...

...this has anything to do with the extreme fatigue in CFS also!


Fatigue relief drug's heart hope

BBC News, UK - Feb. 11, 2008

Scientists are developing a drug which relieves fatigue after strenuous exercise - and it could benefit heart failure patients as well.

Leaky Muscle Cells Lead To Fatigue

Science Daily - Feb. 11, 2008

What do marathoners and heart failure patients have in common? More than you think according to new findings by physiologists at Columbia University Medical Center.

Finding May Solve Riddle of Fatigue in Muscles

New York Times, United States - Feb. 11, 2008

One of the great unanswered questions in physiology is why muscles get tired. The experience is universal, common to creatures that have muscles, but the answer has been elusive until now.


Remodeling of ryanodine receptor complex causes "leaky" channels: A molecular mechanism for decreased exercise capacity

Bellinger, A. M. et al. Proc. Natl Acad. Sci. USA 105, 2198-2202 (2008).

Tuesday, 5 February 2008

Still haven't got...

... any exact time for the surgery. When I called the hospital last week the co-ordinator hadn't made any progress yet in the planning. So, I am waiting for the phone to call... this waiting is like hell!


Thursday, 31 January 2008

Stopped taking the medication...

This Monday, I stopped taking the medication for the pituitary tumour. It was the fifth attempt! I already feel much better, not so tired and no ache left in my legs anymore.

I also had a new appointment with the neurosurgeon, and he again is prepared to perform the operation instead. But it is a sensitive procedure, especially how my tumour is situated; he is not sure he will reach it the usual way. And since it is the third time he have planned for surgery, I am not sure he will do it until it is done! Backing off a couple of day's before the operation is planned is extremely emotional draining.

So, I just have to wait and see what happens next.


Thursday, 17 January 2008

One Reality with CFS...

One reality with CFS is that there will be long breaks when you don't have energy or strength to do anything...

That is the reason for no post for a long time!