Tuesday, May 16, 2006

Being newly diagnosed with fibromyalgia is difficult, yeah?

My dear newly diagnosed friend,

Being newly diagnosed with fibromyalgia is difficult, yeah?

What does the future hold???

For a long time (it takes a long time, for most of us), you longed to get diagnosed. And now that you have it....It seemed like the whole world has just collapsed on you, and you don’t have your usual level of energy (or any energy, in fact) to fight it back or escape from it. On certain days, you don’t even have the energy to ponder about the consequences of having these condition or syndromes.

I have been through it, and thousands, if not millions of people with fibromyalgia and CFS went through it. (I know that fact offered no comfort to you). Some of us might have suspected that we got it. But like everyone else, we still craved to hang on to that ounce of normality and hope, preferring to find some other reasons for the unprecedented or abnormal level of fatigue we experience.

We are desperate to find out if there is some “organic”(is something the doctor could measure or test) reasons for the pain.

I thought I might have been happier if someone were to tell me that I have cancer or some other more “normal” diseases - that means there are drugs, treatments and stuff that could be done to “restore” myself to health one day. Having a typical life-threatening disease would mean I will have one of two possible outcomes: survivor-restored to “health” and normal life again vs. death. Because my “track record” as a human being and as a patient shows that I am pretty hardy, I knew I would win “another battle”- if it is cancer or something else. In other words, these still have some sort of HOPE!

But what do you do if you have fibromyalgia or CFS??? These two are different stuff, but you have one thing in common—ENERGY crisis!!! ( pardon the pun)

Is there anything that could be done for you?
They might offer to prescribe tricyclic antidepressants for you; eg amitryptiline to relieve some pains. For many newbies, finding out that you have been given an anti-depressant itself could depress and upset you and sap your energy enough. Why do they give you an antidepressant?!!

I was shocked. My knowledge of drugs meant it was a really hard blow to me then. I remember as an undergrad, when I first read the side-effect profiles of these drugs, I was totally sympathetic with mental patients. I thought no wonder many patients were “non-compliant”!!!. I wouldn’t mind being “depressed” or “mad”, if these drugs give so many problems.

It does work well for some people; but for me, I feel more fatigued than already fatigued. The side-effect profile of these drugs mirror so much of what we are already having, I wondered why we are given this! Was there nothing else?? The reason is simple, there is really nothing else in the medical artillery to tackle what we got.

To cut the long story short, there is no really effective medical treatment for us. The only stuff that seemed to have “some evidence” is the tricyclic antidepressants eg amitryptiline (fantastic, just as these drugs are no longer preferred by mental patients, we can keep the business going), and some other stuff for neuropathic pain (gabapentin and pregabalin- again stuff that did not “take off” in the marketing sense, for diabetic patients). Everything else is either non-evidence based (ie have not been shown to work well in a well designed clinical trials), or non-conventional and alternative medicine (again, more anecdotal evidence from users rather than proper trial.)

Feel a certain level of hopelessness?(Or fell asleep....?) I remember feeling that time, “there is no obvious treatment for me, and I don’t have the energy to sieve through all these to find out what might actually works! Oh yeah. I was broke too. I had to let go of my job, and used up all my savings for blood tests etc etc. At that place where I was, there is no disability benefits etc, and there was no FREE treatments, even for conventional, proven medicine unless you don’t have a penny to your name and absolutely pathetic! As my husband was still working- no chance!!! If you want to try unproven stuff, good luck!!

My only “treatment” then was sleep, and massage (which used up the rest of my savings).

Only months later, I started to slowly find some energy to do something again. Until today, more than one year later, I am still unable to work. I am desperate to go back to work now, but I know I can't hold a job down. I just don’t have the energy to survive working for 8 hours, much less the 14 hour days my job required.

So, how am I now?

Am I happy? Yes!! Generally. In fact I think I am happier as a person than I was.

Am I satisfied in my life? Yes, I am, despite all these struggles with energy crises (I struggle on two levels, to keep warm on a cold day- gas bills going up, and also my own energy level).

Do I see a future? Yes and No. The future I see is definitely different front the future I saw. It was to be a picture of a happy family- two kids, two jobs, and relatively rich in monetary sense. I had lots of “potential” in terms of my career then. Now, I don’t see myself holding a great career etc etc. I don't dare to wish to have kids, because by the end of last year I had PCOS. In fact, I know I have to give up some “high maintenance” “friendships”- no energy amd $$ to maintain.

What I have is a more compact life. Smaller circle of friends. MUCH MUCH less money to spend. Much less energy to do lots of things-including getting angry or upset or unhappy.

I just expect a simple life, a happy life. I just wish for enough energy to take care of myself and my family. If taking care then meant good allowances for my parents and siblings who are still in school, taking care now means talking to them, making sure they are well, don't worry too much about me, and motivating and emotionally supporting my younger siblings, who now have to juggle part-time work and university to support themselves and my elderly parents. It is very very hard on them. They get lots of difficulty applying student bursaries for poor students, as my story as a well-educated woman sitting at home was not acceptable. At times I cry to think that they go through all these because of what I am going through. I feel that I failed. I FAILED as a daughter, as a sister. I failed.

However, it is not all sad soppy outcomes!

There is always a blessing in disguise, in every situation. I believe.

My brother particularly, seemed to have "benefited" from this sudden change of responsibilities. Somehow he feels that he is the “man of the house” now, and works really hard. Whereas I used to worry about him (the least hard working among us), he now seems so sensible and work hard on whatever chances thrown at him!! He used to think that our parents would live well in their old age because of me, now he knows that he got to do it! He needs a good job, and a good income one day, to support them. He no longer can say, “Don’t worry, my sis is super-capable!” What a change!

So, what does the future hold for me? I am not sure.. What will be will be, que sera, sera!

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Dr. Don said...

I am an MD who has suffered from FMS. I developed it before it had a name and was told by my medical colleagues that "nothing was wrong"! :( I have treated hundreds of people with FMS and I research cutting edge and "outside the box" treatments. I just created this blog...do you think there is a need for a blog/website where advances in treatments for FMS are discussed in layman's terms from a doc with FMS? I would like to offer some hope to the too many who have lost it. Your thoughts would be greatly appreciated.Also, any suggestions on other FMS sites / blogs would be a big help.
Dr. B

Woman said...

Dr B,

You are an MD, and I am also a health care professional- with a PhD.

My question is:
Did you have any problems finding reliable and sensible information about FMS despite having MEDLINE, access to full articles in medical journals and EBM tools?

Yes? Because you were too tired?
Because there are not much reliable data? Because there were so much opinion rather masked as facts from so called experts? Confusing data? How do you interprete them?

If yes, then non medical people probably would have a much harder time, and your efforts will be very much appreciated. I think just speaking up and letting people know that an MD like you get fibro too, helps a lot. How many of us have been termed psychosomatic cases before? Other than a good dose of info, it also offers some chance to cling on to sanity, if not hope.

(I just hope it is not one of those website which promised a "cure" etc. That would have wasted my time replying your comment.)

Devin Starlanyl - I personally believe is an underrated site to start with.

Best wishes, and let me know if I may be of help.

Dr. Don said...

A definite yes to difficulty finding information and a NO to offering a CURE like so many websites do. The idea would be to offer hope, to distill current medical information into usable format, and even talking to individuals about their current treatment (or lack thereof). What do you think.
Do you recommend any other FMS communities to talk with?

Thanks, Dr. B