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Got some semi-bad news from my doc this week. She is about 99% sure that I am suffering from CFS in addition to my other problems. I was just wondering if anyone has any links with good information on them, or advice for coping with the symptoms.

I am actually kind of relieved to finally have an answer, even though it is a bit depressing to know I can only treat the symptoms and change my living habits to make it easier on myself. It is nice to know that there is a reason for all of the random aches, headaches, insomnia even though I really need to sleep and FATIGUE of course. I'm not crazy or lazy after all.

Basically I am just waiting for the doc to run a few more tests to rule a few other (very remote) possibilities out but I have been assured that CFS is most likely.



Last edited by trystianity at 17-Dec-2004 03:35

have they figured out your trigger yet?

Look under

fibromyalgia - FM
myalgic encephelomyelitis - ME (the old name for it)
Chronic Fatigue Immuno Deficiency Syndrome - CFIDS
Or mst commonly - ME/CFS

Also check
Post Viral Fatigue
Over-Training Syndrome (unusual name)


As for specific sites, here is one from a friend of mine:
http://www.geocities.com/helpfulcfs/
I went to high school with this guy. He is a real gem, and a real trooper. He did the extra 2 years of HS to get his HSC.
The links page is pretty good.

http://users.tpg.com.au/rsbeech/
This is Ronnie's page. She is a mother of 4 and up until recently, she never took any time to look after herself unless she was completely exhausted. She is a real inspiration and a real annoyance at the same time. Sometimes i just want to staple her to the bed!

I am a member of a support group geared mainly at Aussies, but if you would like to join, i can send you an invite. There are others, but this one is a select few who support and dont constantly whine (you get an afwul lot of constant whiners in support groups, and its ok, it just gets very draining)

keep all your blood tests. I'll go through my tests and see what that blood-bourne mycoplasm was, and i'll let you know in case you want to test for that too.
Welcome to the world of inconclusive blood tests

If you need anything, just let me know. even if its just to whinge that you have brainfog

Last edited by Callatya at 17-Dec-2004 18:32

For animals, the entire universe has been neatly divided into things to (a) mate with, (b) eat, (c) run away from, and (d) rocks. - Terry Pratchett

you sure it's not from staying up till 5-6am chatting every other night?

---

"That's the trouble with political jokes in this country... they get elected!" -- Dave Lippman

It must be some relief to have an answer and know what you're dealing with.

Over a year ago my doctor diagnosed me with depression. Since then I've been playing the anti-depressant game: Let's try this one...oh the side effects are terrible, let's try another....this one is worse...

When it got to the point of threatening my marriage and me not liking myself I decided I had to do something else. I haven't quit my meds but I'm actively seeking a counselor to work with.

I wish you all the best.


~~~~~~~~~~~~
There is water at the bottom of the ocean

I'm actively seeking a counselor to work with.

Someone I know very well had an attack of clinical depression and stress so bad as to make him unable to get out of bed, he just couldnt do it. The antidepressants seemed to help "take the edge off" and get him functional again, but it was counselling and support that got him to actively re-engage with life, with the pills just providing some support until he hd re-engaged enough to get back into society. He's recovered now, it seemed he needed to do "useful" things to break the cycle of "i'm depressed, I can't get up, it's making me more depressed, I can't get up"

-------------------------------------------------
I like to think that whoever designed marine life was thinking of it as basically an entertainment medium. That would explain some of the things down there, some of the unearthly biological contraptions

Trystianity I wish you all the best..

Cronic Fatigue Symdrome - maybe you have the wrong depression med for your system, what works for one either doesn't work for another, or makes it worse. This is why I'm reluctant to talk to my own doctor about depression or anxiety meds. I've seen a few people get the wrong med for them, it wasn't pretty.

CFS - healthy eating habits, sleeping habits, exercise, and willpower helps the most(same as Fibromalasia).. There is really no meds for this. You might beat it on your own, don't give up

The Amazon Nut...

Sorry it took me so long to reply, I had a crazy winter holiday.

Just got my blood test results back. .. Guess what calla! Inconclusive! *Has welcoming party for herself into the world of inconclusive blood tests*

Anyway, thanks for the sites and all the niceness, it's really appreciated.

Moondog thanks for the idea but I have ruled out chat as the cause of my illness.

Theresa good luck. I have been battling depression for a long time now, and counselling is really GREAT. Meds can give you that boost to help break the depressive cycle but I'm really skeptical on how well they work without a lot of active *head work.* Good luck finding a combination that works for you.

DFM my doc was also concerned that my meds could be causing the symptoms, but that has been ruled out almost 100%. The fatigue started a long time before I went on the meds, but I brushed it off as me just being depressed and feeling crummy. Now that my depression is under control and the fatigue just isn't improving, the "team" - psychiatrist and GP - thinks there's something else going on. I do have the option of switching meds but that involves being of antidepressants for at least 3 weeks so I don't want to go there. Especially since the next one I try might not help my depression like the Effexor does, and also because Effexor has been known to HELP people with CFS in general.

Anyway. . . . not sure on a trigger yet, I have been referred to a new doc that does a lot of work with CFS patients, so I'm hoping he will be able to give me more answers when I see him. My GP was thinking my biggest trigger is probably STRESS, and a history of emotional trauma, so I am learning how to better manage stress and not beat myself up. I have reduced the difficulty of my course load for this term, it was a hard decision to make but I really think it's for the best.

I have my first blood test results. . . a few vitamins looked a little low-ish (Iron, B 12, etc.), creatinine on the low side of normal. Absolute lymphocytes: HIGH (only abnormal result), Monocytes also highish. . . Some other things were a tiny bit off of perfect but nothing really abnormal that explains anything at all. . . . I guess that's why they call it inconclusive. The test for EBV isn't back from the lab yet but I'll let you know when I get it. The specialist may also want to do more testing, or at least that's what my GP said. :%)

I didn't get a test for blood-bourne mycoplasm. . . . don't know what it is actually.

*Puts on her rubber boots* My doc said it only gets deeper and more confusing and nastier and more frustrating from here. Better prepare myself, and if I can't be healthy I might as well be happy.

Calla thanks for the support group offer, I think i would like that if it's ok. . . I don't like whiners either but everyone needs a good rant sometimes. [/font][/font][/font]

I'll get right onto it

And high WBC counts aren't unusual. I'll have to dig up my old tests and see, we can compare notes

your specialist will probably have an immune function test, so see how your immune system reacts to certain infections. Like an allergy test, but for illnesses. They seem to like testing this one regularly.

I had 7 vials taken the first time i went to the specialist... eat and drink before your appointment

Just stick in there, you will come through it



For animals, the entire universe has been neatly divided into things to (a) mate with, (b) eat, (c) run away from, and (d) rocks. - Terry Pratchett

Your lucky to have a doctor that even admits CFS exists, let alone diagnose you with it!

I went to my doctor concerning that one day *My old doctor who has known me my whole life, or at least until I stopped being his patient.*

After I talked and went through all of my concerns, he just looked at me and said "your just depressed".

Now, I've had emotional issues such as that, in the past, and he knew this, but he DISMISSED me with that answer. After he said that the discussion was over, he said nothign further, and I never went back to see him.

Strange enough, that year, when I went to see him was the HAPPIEST time period of my life, to this date. I was certainly not depressed.

When I get home, and have a chance to look online, I'll give you a nice link to a very active message board on CFS.

I hope your doctor has performed a battery of thyroid tests: T3, T4, TSH.

An underperforming thyroid can mimic mental illness and women, moreso than men, are affected. Also, women seem to feel better at the higher end of the normal scale, as opposed to the lower end.

More info:

http://www.thyroid.ca/Articles/EngE10F.html

http://www.thyromind.co.uk/

I witnessed first hand, what low thyroid values can do to someone - my mother. We thought she was losing it and so did the family doc. Then it occurred to him to take the above tests and surprise-surprise. Within a day or two of being on synthroid she was a new person - sleeping well and with lots of energy. She was a basket case before that - running from cycles of depression, heavy fatigue and a really short fuse. She wanted to die. We had just lost my dad 2 months prior so it was easy to dismiss as stress related. Thankfully, the doc covered his bases.

If your doc only gave you one of those tests above, request the others.

I should note that mom had none of the more outward signs of ill-functioning thyroid that are listed, rather they were more behavioral.



Last edited by Cory_Di at 07-Jan-2005 13:50

Last edited by Cory_Di at 07-Jan-2005 13:52

Cory: That is true. In an effort to understand the complexity that is me, there has been several different doctors through out my life, that run the thyroid tests on me.
Though I do tell them "It's going to come back fine", and of course, they always do.

BUT, it is something to consider if you have not yet.

It can change with age too. Symptoms can begin before it starts showing up in the bloodstream (especially, women on the low side of normal). Our doctor estimates that mom probably began having issues in her early 40's, but that it didn't show until her late 50's - a path he suspects I may follow.

I too have battled fatigue, and the doctor checks my thryoid values at least yearly, sometimes twice. My poor mother fought the depression and fatigue for years before it showed up in her blood. Once on the synthroid, it all went away.

Last edited by Cory_Di at 07-Jan-2005 17:22

Who knows maybe their is hope for me then. I have depression and fatigue have for about.. 10 years now.
So I suppose I just need to wait until I'm 40 or 50 and maybe SOMETHING will finally show up in tests.

No joke! That is what my doctor explained to me about thyroid issues. Who knows, maybe something is happening chemically that they haven't figured out how to measure with a test yet. It's only recent that some realize the importance of the T3 test which they use to blow off.

Last edited by Cory_Di at 07-Jan-2005 19:32

Trys: Here you go, these are the links I was gonna give you for CFS communities.

http://p082.ezboard.com/bsunshine35446

http://www.fibromyalgiasupport.com/chat/forums/index.cfm?b=FM

BUMP!



Well I went to see my doctor again... She checked me over for *tender points* that are used to identify fibromyalgia....it was kind of a weird exam, one of those "Does it hurt when I do THIS?" things...

So when all of that was over she said that I had a bunch of those tender points and she thinks I'll be getting a diagnosis of FM-CFS (fibromyalgia-chronic fatigue syndrome) from the rheumatologist that I'm visiting on the 15th of February. I went to see her because I've been having a lot of really bad tension headaches/migraines and a lot of back and neck pain recently, and have been in the hospital twice in the last 2 months or so for headaches that don't respond to the prescription I have at home. I've always had weird muscle pains and such but lately it's been a real PITA.

So....my first reaction was "OH great, something else! Just what I needed!" but after talking to the doctor she said it's very common for people to have both illnesses, since they tend to overlap a bit. She said that there are researchers who believe that they may be the same illness, so I shouldn't worry about it. So....that's ok.

Anyway, as far as further testing goes, thanks for the info, Di. I'll ask my specialist about thyroid tests when I see him. It would be great if it were a thyroid issue, as that would be something more easily correct-able. I will also make sure I eat some breakfast on the morning of my appointment, calla. Thanks for the tip.

The only difference she said I need to be worried about is that I'm going to have to focus more on pain management than if my only diagnosis was CFS. My doctor wanted to wait until I see the specialist before prescribing any pain medication, so until then I'm fiddling with at-home stuff.

I'm going to sew some of those heated pillows with grains and lavender in them to put on my neck and behind my back when I'm feeling sore and cranky, I was also looking at getting a hot water bottle to take to bed with me. It IS winter and I ALWAYS have chilly feet and legs. My *other* is always complaining about it. Hot water bottles don't seem to be very popular at the moment for some reason so I'm having a hard time finding them. Those electric heating pad things are all over the place but I would much rather use something more natural I guess. :%)

I have purchased a little organizer to use as my "symptom diary" because my doctor said that the specialist would probably REALLY appreciate one. I just hope I can remember to use it....

I was told that I HAVE to bundle up and not get cold so my mom is crocheting a set of super-warm mittens, hat and scarf for me. I also have a new "car blanket" that I take on trips to keep my legs warm and new aromatherapy bubble bath to warm me up when I come in from the cold.

I've started taking some new vitamins, and they do seem to be helping a bit. My doctor said that the specialist I'm going to see is a big fan of nutritional supplements. The vitamins I'm taking right now are pretty expensive though. I'm going to have to see what I can do to afford all of this.

To be honest this is all kind of overwhelming! :%)

If anyone has any DIY pain relief ideas let me know. [/font][/font]