The death of 'I'

I have been trying so hard - and for so long - to stay strong. But I can't do it any more.

3 days ago I finally gave up my fight against allopathic medication and started Medrol, a Group A corticosteroid for the inflammation of the muscles and nerves. I no longer know why I put myself through the agony of the Lyrica & Cymbalta withdrawal symptoms, if I simply had to start on such strong medication again.

I feel defeated.

In fact, it's like there is no longer an 'I' left to either be strong or feel defeated. There is just pain and fatigue.

And I'll do just about anything to stop it.

At the very least I tried to stick to the hope that with the steroids, the pain would finally get a little bit better; that after 9 long years, my body would get a break from the agonizing misery....but it hasn't. And that may be the most disappointing thing of all.

The constant dizziness - I don't know whether it's the CFS/FM or the medication that's responsible - has been getting worse to the point where even lying in bed I feel the need to constantly hold onto something so I don't fall.

 I've never wanted to be that person who's always miserable and complaining. I always told myself that even if I can't help being miserable, I can at least not complain.

But since that 'I' no longer exists, I guess I can finally be weak and break down and cry...

Breathe again...

Here's a pretty good article by Dr. Bruce Cambell on his life with CFS/fibro...

ME/CFS and Fibromyalgia: Rebuilding Life in the Face of Loss

Holtorf Medical Center

Today I went for my blood test. I had 9 vial of blood taken. I'm kinda chuffed abt that. Last month, there were 13 vials taken. Maybe that means they're honing in on something?

I've tried various kinds of medicines over the years - anti-depressants, anti-migraine pills, anti-epilepsy pills. I've tried allopathy, homeopathy, ayurveda, acupuncture, herbal supplements, vitamins, minerals you name it. And I know that this is the case with almost all CFS patients.

But last month I tried something new. I went to the Holtorf Medical Group, which specialises in fatigue syndromes. The founder Dr. Kent Holtorf suffered from CFS himself. He has now opened a center for "natural, prescription Bioidentical Hormone Replacement, Complex Endocrine Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Infectious Diseases, Fatigue Syndromes and Neurological Illnesses".

It's just been over a month since I started treatment at the Holtorf center and over the years I have learnt not to get too excited about a possible treatment for my CFS, but I have to admit, I am "cautiously optimistic" about this.



Some of the reasons for my optimism are as follows:

I have been tested for hypo-thyroidism time and time again, but I was only tested for T4, and never for reverse T3. Holtorf prescribed a number of tests for me, which, in 7 years, had not been tested by any of the doctors (endocronologists, neurologists, GPs, gastroentologists) that I had visited. And some of these tests, including the reverse T3, are positive.

I know it sounds kind of whacky, but any CFS patient will understand why I whooped for joy on learning that some of the test results were positive. This was the first time I had physical proof that something was actually wrong with me! It wasn't "all in my mind"!

I don't think that the mild hypothyroidism or the other deficiencies they found are responsible for my CFS in it's entirety. However, I do believe that curing these will help my overall health and energy levels.

Till now, I couldn'y fight my illness because I didn't know what to fight. All the causes seemed invisible. But now that I have somthing to focus on, well, just let me at it!

P.S - In case youre wondering, I got all the tests and medicines given to me by Holtorf, double-checked by my GP as well as another doctor. Both doctors agreed that the diagnosis and treatment seemed correct & logical.

Ms.F.August 11, 2011 3:00 AM

Update - sorry for the long delay in writing this update, but you know how it is when you have CFS - nothing is ever done on time :)

So, to answer some questions below:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone below put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. What has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt Holtorf, you can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html

All the best!