ME: joint pain

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Jessica Pillsbury

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Jun 18, 2003, 8:39:54 PM6/18/03
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I had surgery on my shoulder in December to repair some cartilage that had torn. I was supposed to be back outside being physical by April at the latest. Of course other reasons keep me from doing what I want now, but my surgeon can not figure out why my shoulder still hurts so bad.
I have had MRI after MRI and at least 4 or 5 opinions, all from "shoulder specialists" and not a single one could tell me what was wrong. They discussed going back in and checking it out but after my last results with that, it was not an option for me.
What I'm wondering is if the CFS is making it worse than it should be because I experience occasional joint stiffness in other joints.
Has anyone else had a similar experience? Or can anyone shed some light on my situation?

Thanks, Jess

TonytheTiger

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Jun 18, 2003, 8:59:26 PM6/18/03
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Jessica, did you have physical therapy for your shoulder. What about anti-inflammatory such as clinoril? It could be adhesions. Have you been doing range of motion exercises? You should or the shoulder might freeze. The best docs to see are the ones that work on athletes. Go to the same doctor that treats Derek Jeter or at least some decent college team.

Jessica Pillsbury

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Jun 18, 2003, 9:19:35 PM6/18/03
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I've been on a whole slew of meds. Bextra, Vioxx, Ultram, Vicaden,
Oxycodone, Oxycontin, Prednisone, and more. I went through the physical
therapy cycle for three - four months. I do R.O.M. exercises daily, I don't
want to freeze up. And all of my shoulder guys were sports guys, each one
recommended highly.
Not sure what adhesions are. Similar to adhesive capsulitis? I do know what
that is, trying to avoid it.
I am running completely out of energy to continue going to doctors,
especially when they all give me they same look of confusion.
~ Jess

TonytheTiger

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Jun 18, 2003, 9:32:35 PM6/18/03
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Jess, I think you've done everything I would have. I don't have any idea what the problem might be. Adhesions are often had by baseball pitchers. Occasionally, the pitcher just has to retire. Nobody can help him.

Rob

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Jun 19, 2003, 6:19:35 PM6/19/03
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Hi, well about five years ago, I had a disc herniation in the lower spine,
and i was told by two specialists that it would heal in nine months to a
year. . well, i am still in excruciating pain, and i take a very strong pain
med to deal with it, which does, finally work to a large extent . . .so, i
guess that there might be some connection between CFS, which I have had for
over a decade, and problems healing . . . my MRI's show no healing taking
place in the disc area, which was surprising to the doctor a couple of years
ago. .

don't know if this is any help, but i understand and empathize what you are
going through.

rob.

Jessica Pillsbury

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Jun 19, 2003, 6:54:45 PM6/19/03
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Thanks Rob. Sorry to hear you are in so much pain. When it rains it pours...
~ Jess

Wendy Swope

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Jun 19, 2003, 7:49:30 PM6/19/03
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Jessica,

Sorry you are having such a time, dear! You need a second opinion from
a shoulder surgeon who wasn't involved in your surgery. The doctor(s)
involved might have made a mistake during surgery or the physical
therapy that followed. With malpractice being such a big deal today,
the doctor isn't going to want you to check this out with anyone else.
Do it nicely, but do it anyway, to rule out complications from the
surgery.

If a second orthopedic doctor who specializes in shoulders can't figure
out why you still hurt, there are a number of conditions associated with
CFS that could be causing your pain and should be considered. First,
find yourself a rheumatologist who will help you explore the problem.
A good rheumatologist knows all about auto-immunity and joint health.
Conditions you may need to rule out include chronic tendonitis,
fibromyalgia, and arthritis (joint surgery may have required the removal
of damaged cartilage, which can cause severe pain and, later, arthritis;
ask your current doc if he had to remove any cartilage).

Last thing I can think of to check for, and it's a long shot, would be
"frozen shoulder". If you can't move your arm because of the pain
you're in, it is possible you have a frozen shoulder and need
specialized physical therapy, but I think (at least *hope*) that your
current doctor would have picked up on such a condition right away.

Gentle, healing hugs,

Wendy

____________
"Jessica Pillsbury" wrote in message
news:003701c335fb$45cf9000$f2da...@ne2.client2.attbi.com...

Jessica Pillsbury

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Jun 19, 2003, 8:32:33 PM6/19/03
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Wendy, I did have my shoulder checked out by two surgeons who were not
involved in the surgery. My surgeon actual did reccomend it because he
couldn't figure out what was wrong. My surgeon didn't remove any cartilage
but is worried about future arthritis. I am scheduled to see a CFS doctor in
October who also specializes in chronic pain, I plan to ask her about it
too. I have tried everything from steroids to accupuncture. Nobody seems to
know anything else to do.
I notified my lawyer today that I want to move ahead with my case so that I
can get reimbursed for some of these expenses. He said that he would include
coverage for any further medical needs for my shoulder into the case so at
least ther is that.
Thank you for the suggestions though.
~ Jess

kma

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Jun 19, 2003, 11:09:03 PM6/19/03
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Jess,

I can relate to your shoulder pain, as I have 'frozen shoulder'. I think
it's also called adhesive capsulitis. My dr. told me that it's often an
autoimmune reaction. The pain was unbearable the first month and I had to
sleep in a recliner because I couldn't bear any pressure on it. I chose
massage therapy for treatment because I don't do well with physio. I've had
it for 7 months now and the pain is diminishing and my range of motion is
slowly starting to improve. Something else that helped with the deep ache
was Traumeel. It's a homeopathic cream that I rub in the shoulder area
twice a day. No smell to offend and very gentle. I'm sorry you're going
through this.

Mary Anne

TonytheTiger

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Jun 19, 2003, 11:18:34 PM6/19/03
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Jess, many things can cause shoulder pain including insufficient blood flow, nerve impingement, muscle or tendon strain, damaged joint capsule, damaged cartilage. You can distinguish between muscle and cartilage problems. If stretching hurts, and exercise does not the muscle is okay. If exercise hurts and stretching doesn't, the problem is in the muscle or blood flow or nerve.
----- Original

Chris Poole

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Jun 20, 2003, 11:30:29 AM6/20/03
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I'm not sure if I can access the newsgroup from work.
Not sure how to send an e-mail to the group either.. so
I am responding to this as a test.

:)
Christine

loddie_may2003

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Jun 21, 2003, 10:16:01 AM6/21/03
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Hello all,

I may be totally off the wall.....or my doctor is....but has anyone ever heard of a parasite verses CFS??

My doctor is checking me for Parasites.......have been sick since last fall.....nausea, diareha, dizzy...weak....fatiigued, anxiety attacks and just an over all flu feeling. Also vision problems.

Please let me know what you think.

Hope you all have a great weekend with energy and a feeling of wellness.

Laurie

:)
Christine

Jess,

Mary Anne

---------------------------------
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SBC Yahoo! DSL - Now only $29.95 per month!

Shadow

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Jun 21, 2003, 10:29:27 AM6/21/03
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At 07:15 AM 6/21/2003 -0700, you wrote:
>Hello all,
>
>I may be totally off the wall.....or my doctor is....but has anyone ever
>heard of a parasite verses CFS??
>
>My doctor is checking me for Parasites.......have been sick since last
>fall.....nausea, diareha, dizzy...weak....fatiigued, anxiety attacks and
>just an over all flu feeling. Also vision problems.
>
>Please let me know what you think.
>
>Hope you all have a great weekend with energy and a feeling of wellness.
>
>Laurie

Hi Laurie. I have the same symptoms plus intermittent fever, swollen
glands and a few others but all of my docs at the time I was diagnosed went
with CFS. I've been checked for parasites (stool samples) a few dozen
times and nothing ever showed up. But that doesn't mean they won't find
something with you and be able to take care of it. Let us know how it
goes. Take care.
Vicki

msauve

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Jun 21, 2003, 5:09:17 PM6/21/03
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Hi Laurie

Parasites can often be a problem in CFS. How is your doctor testing you?
Unfortunately most stool tests I understand are very unreliable for detecting
parasites. If he thinks you are at high risk for parasites, he should treat
you anyway to be sure. My gp has two patients currently with CFS symptoms who
he is treating with flagyl. If it works, he may do the same on me as I got
sick in Japan 7 months ago.

Good luck. Keep us posted on how it goes for you.

Monique

>===== Original Message From Chronic Fatigue Syndrome discussion CFIDS/ME
<CF...@MAELSTROM.STJOHNS.EDU> =====

loddie_may2003

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Jun 21, 2003, 10:25:28 PM6/21/03
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Hello,

Thank you for your reply, I also have swollen glands, periodic sore throats and periods of low grade fevers.....geez.....What will it take for a Dr. To totally diagnose this for me?? I have been off work for only 4 weeks and cannot imagine the way I feel going back to work at this point.

How frustrating.....but.....I guess I will do anything the docs want me to try and FINALLY feel better.

Thanks again,
Laurie

---------------------------------

loddie_may2003

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Jun 21, 2003, 10:34:50 PM6/21/03
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Hi Monique,

Thank you for your response, He is testing me my stool samples.......and i have a colonoscopy scheduled for the 3rd of July.

Would not it be great if he did find parasite and I did not after all have CFS???? !!! then they could treat me and then I would finally feel good again???

Am I now off the wall?? If I am it is a dream worth thinking about.

Hope you are doing okay.

Laurie

msauve <msa...@ualberta.ca> wrote:
Hi Laurie

Parasites can often be a problem in CFS. How is your doctor testing you?
Unfortunately most stool tests I understand are very unreliable for detecting
parasites. If he thinks you are at high risk for parasites, he should treat
you anyway to be sure. My gp has two patients currently with CFS symptoms who
he is treating with flagyl. If it works, he may do the same on me as I got
sick in Japan 7 months ago.

Good luck. Keep us posted on how it goes for you.

Monique

>===== Original Message From Chronic Fatigue Syndrome discussion CFIDS/ME

=====
>Hello all,
>
>I may be totally off the wall.....or my doctor is....but has anyone ever
heard of a parasite verses CFS??
>
>My doctor is checking me for Parasites.......have been sick since last
fall.....nausea, diareha, dizzy...weak....fatiigued, anxiety attacks and just
an over all flu feeling. Also vision problems.
>
>Please let me know what you think.
>
>Hope you all have a great weekend with energy and a feeling of wellness.
>
>Laurie

---------------------------------

Jeanne Redmon

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Jun 21, 2003, 11:18:45 PM6/21/03
to
Hi Laurie,
I know someone wrote a paper on parasites and CFS. I can't find it right now
but will keep looking, and post it if I can find it.
Your symptoms sound typical of CFS. I have had them all for lots of years. I
hope you will get relief soon.
Hugs, Jeanne

**************************

loddie_may2003

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Jun 22, 2003, 7:24:01 AM6/22/03
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Jeanne,

Thank you for writing to me. I would love to read the paper on this if you find it. If not, thank you for thinking of me anyways.

I hope all here has a bright sunny shiny day without symptoms of our wonderful conditions!!!

Hugs,

Laurie

---------------------------------

msauve

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Jun 22, 2003, 1:49:19 PM6/22/03
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Hi Laurie
Of course you are not off the wall. I think we all hope to find something that
is the causes or causes of our illness so we can eliminate it. I have met a
few who have. Let's hope one day we do too!

Take care
Monique

Patricia M

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Jun 23, 2003, 10:27:54 PM6/23/03
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>Would not it be great if he did find parasite and I did not after all have
CFS???? !!! then they could treat me and then I would finally feel good
again???
>
>Am I now off the wall?? If I am it is a dream worth thinking about.

Seems kinda bizarre now, but when I tested positive for Hep C in 1998, after
being dx'd with CFS in 1992, I was actually thrilled! Finally! I had
something legitimate.

So yes, I can understand how you feel.

Pat

loddie_may2003

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Jun 25, 2003, 7:25:08 AM6/25/03
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Hello all.

I am writing to tell you of my experience yesterday with a neurologist that I had looked so forward to seeing and was set up by my family Doctor.

I went to him in great hopes of him helping me. I took my list of symptoms and all the meds that I have been taking. I had been to him one time before for Guillan Barre and just knew that he was going to be able to help me.

WRONG!!! He could have cared less what my list of symptoms were, or what meds I was on, had me do a couple of short physical acts....( finger to nose, walking heel to toe etc.,) and said that he had gotten reports from my Doctor and that there was really nothing that he could do for me. I was trembling from being so weak yesterday. It was a bad day for me and I explained to him that.

Well.....guess what he told me?? He ask me if I consumed alcohol ( why would he ask me that and what gave him the idea?) and I said now and then I had a couple but only at night to sleep. He told me that all of this could be from alcohol !!!! I have had nothing to drink since Saturday and that was coffee with Hazlenut!!!
And before that....it was the last Saturday with the same drink.

I was so insulted and hurt, he totally blew me off and told me that I may think about some counciling for stress....( I am not stressed other than I want so much to feel better !!!) and exercise, gave me a script for sleeping pills, put me on a higher dose of Welbutrin and off two more weeks. Said that there was nothing he could do for me!!

I was thinking.....I remember when I worked 12.5 hours a day that I had told my family Doctor that one time.....my work was so stressful that at night sometimes after my long day at work ( Corrections Officer) that I had a couple of drinks to sleep......well for goodness sakes, that was a long time ago......certainly not while I have not been working.....and certainly not everynight and certainly not needing it!!! I also had told my family Doctor that if I did not have 1-2 drinks that I would take a sleeping aid instead.

I told the neurologist yesterday that I was insulted, I could not stand alcoholics and drunks and that my last marriage ended due to his alcoholism, but he would not listen to me. It is like my family doctor talked to him and told him what he thought about me and that is their diagnosis. Like I am a alcoholic sick girl that does not want to work anymore!!!???

I cannot sleep over this. I am so upset. I am going to call my family doctor today and tell his nurse what a big fat joke that appointment was, due to whatever he told the neurologist. I am also going to make sure that she knows to tell my doctor that he needs to get off of the alcohol thing. Geezzzzz.....I cannot believe, that he actually thought the reason that I was trembling was due to alcohol. I was so weak yesterday, headache and had terrible vision problems,,,,,,how in the world would my one coffee and hazelnut from saturday afternoon have anything to do with that???

I am so hurt and so lost. I am convicted apparently by my doctors now that I am an alcoholic, only because when I worked those hours a while back that I would have 1-2 drinks at night sometimes to slow down and relax.

With CFS....we are dizzy and weak enough. We get headaches enough, we feel icky enough without having to have alcohol to make us feel worse.......why won't they listen??
Why would we want to drink and be drunk and feel worse than we already do???

I need to get over this...can anyone give me a piece of advice??? I only slept 4 hours last night and woke up this AM angry and hurt of what happened yesterday.

Thanks for taking the time to read all of this......I am just so upset.

Laurie

Pat

---------------------------------

Marnia He Sapa

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Jun 25, 2003, 7:49:15 AM6/25/03
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Yes, the bad ones are beyond polite descriptors. But they are not all
bad. I do understand -- a couple weeks ago I drove six hours, stayed in
motels etc for days in order to see a doc who spent 4 minutes to blow me
off, after, as you say, not even reading the information I'd provided (and
which his nurse had said was excellent). What does this say? It says this
particular doc -- neuro for you, internist for me -- in fact isn't informed
and isn't honest enough to say, I don't want you for a patient because I
don't want to deal with this murky CFS. And as to being accused, more or
less, of being alcoholic because you were shaky -- I've had people inform
me that I'm alcoholic, a cocaine addict etc because I couldn't walk
straight, or sleep, or was shaky, or looked like living death or whatever
-- I'd always be just floored and say "Why do you think that?" Well, guess
what? In every single blessed case the answer started "I know because I'm
a recovering alcoholic or cocaine addict or whatever and I know your
biggest problem is you just haven't admitted etc." I knew a fellow with
Parkinson's who said he got the same stuff -- always from people who don't
know you well, and who certainly didn't know you before you fell ill. I
know it's really upsetting, but don't let it get to you. Well, it has
gotten to you, but what I'm saying is, deep breaths. Warm bath. Herb
tea. Dim lights or no lights at all. Nice soft relaxing music you can
reach to turn off from where you're lying down. Melatonin or a sleep med
if you take 'em. Think of all you've survived already. Think how sheepish
they will feel when eventually all the research is in, the disease is
better understood, and there is some form of standard treatment even if no
cure. You have survived thus far, you are stronger and more flexible than
they can possibly appreciate. Now get ready for a giggle. People who know
me reasonably well often suggest that I take up drinking a glass of wine or
whatever because they are sure it will help me sleep. Why? Because it
helps them sleep! Projection is an amazing thing. So all those folks who
say it's all in your head, or your a malingerer, or an addict -- are really
giving you some pretty scorching information about themselves, and know
nothing whatever about you. And lastly, my dear one, get thee a new family
doc. Them what willfully misunderstand, misdirect, blow off, deny,
diminish and dismiss don't merit your time, precious energy or the $150
bucks they charge for a 4-7 minute office visit! And get somebody to paint
your toenails! Nothing cheers a person up like the silliness of painted
toes! hugs, Marnia

loddie_may2003

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Jun 25, 2003, 8:29:51 AM6/25/03
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Marnia,

Thank you for writing to me.

I bet you were so upset taking all the time, gas and miles to be blown off in 4 minutes!

For me, hearing other peoples experiences makes mine look not so bad after all. Even tho I still am so upset and hurt.

I am planning on getting a new family Doctor. This was all so uncalled for. I am also planning to write the neurologist a letter and explain my feelings to him as I will not be seeing him again either!

Hot bath??..... I am headed there right now. Then maybe a nap after very little sleep last night.

Thank you again,
Laurie

---------------------------------

Marnia He Sapa

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Jun 25, 2003, 8:58:00 AM6/25/03
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Laurie, yeah, I felt like smacking the guy 3 of the 4 minutes. Travel
always screws up my already disturbed sleep patterns -- I hadn't slept the
night before, so I wasn't shaky, I was "glazed."

>For me, hearing other peoples experiences makes mine look not so bad after
>all. Even tho I still am so upset and hurt.

Well naturally. Jeez, the man invalidated your entire experience of
life-destroying disabling disease because he doesn't know diddley. There
are several terms for such people, none of them polite. And yours is
plenty bad, just unfortunately common. I'm glad you're changing family
docs, and hope you get a good lie down. I'm headed there too, this is the
fourth night this week for awful insomnia, I've at least been down prone
all the others, but couldn't face lying there for ten hours again -- the
travel always knocks my already screwy sleep all to the dickens. Overtired
= gross insomnia. Stupid senseless illness counter-intuitive! :) I need
my toes painted! best, Marnia

Lisa

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Jun 25, 2003, 11:42:26 AM6/25/03
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The last time they sent me for an Independent Medical Exam, she asked me about my alcohol use (which I admit is more than is good for me) and in her report, exaggerated every specific I gave her. I said, 2-6 beers once or twice a week, never before 3pm, and never in my life have I had even one drink every day for longer than two weeks, became "Some weeks she drinks 6 to 8 beers from noon until 3 pm for 2-3 weeks in a row (it helps her sleep) but then she stops abruptly reasoning that "I cannot be an alcoholic as I can quit so easily." " I never said anything like that. It's the stereotypical "I can quit anytime I want to" of the alcoholic in denial.

I can't remember if I told her, but 20 years ago, before CFS, I did "self-medicate" for depression and drank a lot more than I have since.

I suppose, at her discretion, she could have concluded that I'm an alcoholic in denial and probably drink more than I reported (although it wouldn't have been true) but to state as a fact that I drink more than I do, and to quote me as saying something I didn't . . . if only I had taken a witness or tape recorder, I wonder if that would come under "malpractice." That was very prejudicial and cost me a LOT of money.

Even at that, her conclusions listed "Intermittent Alcohol Abuse" 7th down on the list and below Chronic Fatigue Syndrome (that was 3rd).

In spite of that long list, she found me not disabled and cleared for full-time work, so they cut off my disability income. But that's a long story I told already with a relatively happy ending.

But, anyway, know you're not alone. I think so many doctors are so insecure about the lack of a definitive blood test for CFS that they'll grasp at any other diagnosis. Hmm. There's no definitive test for either "depression" or "alcoholism" either -- so why are they so eager to grab those diagnosis? Oh, I'll bet it's because they can pass those problems off to someone else. "Go see a shrink. Go to AA."

--Lisa

loddie_may2003

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Jun 25, 2003, 12:41:07 PM6/25/03
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Lisa,

I did not hear your ending.....I would love to hear how you came out on things in your relatively happy ending that you stated.

Thank you for sharing with me your situation......it gripes me how we are treated by some doctors. And I also feel that they can pass us on by naming it alcoholism and or depression....no way to clearly diagnose those either......but then off we go to a shrink or AA.

Thanks Again,
Laurie

--Lisa

loddie_may2003 wrote:

wrote:
> >Would not it be great if he did find parasite and I did not after all have
> CFS???? !!! then they could treat me and then I would finally feel good
> again???
> >
> >Am I now off the wall?? If I am it is a dream worth thinking about.
>
> Seems kinda bizarre now, but when I tested positive for Hep C in 1998, after
> being dx'd with CFS in 1992, I was actually thrilled! Finally! I had
> something legitimate.
>
> So yes, I can understand how you feel.
>
> Pat

---------------------------------

Bethany Wilson

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Jun 25, 2003, 2:46:09 PM6/25/03
to
Hi Laurie,

Unfortunately, most of us have had an experience like yours. Sorry you had
to go through that. The first time is the worst!

Going to a doc like that is like going to a dentist for a heart attack. They
speak, with annoying confidence, from their knowledge......which is
nothing!! At least a dentist would call 911. Hopefully.

I was diagnosed in July, 1989 as having Epstein-Barr. I've never been to a
doc since for CFS. I used to be married to a doctor, and one thing I learned
from him was not to "bother" (his words, not mine!) a doctor when you had
something that couldn't be treated. Colds, viral illnesses, upset stomachs,
etc. He was a pediatrician and would tell me when to take the kids to the
doc, like if they might have a strep throat.

So I've done my own doctoring all these years, by talking to people on this
list and trying out dietsa and supplements that made sense to me. I had one
shouting match with a doc here that I went to see for a "frozen shoulder." I
mentioned I had CFS. He said he didn't believe in it. We got into an
argument. The loudest part went like this - him:"All you people ever want
is to come in here and get on disability!!"....me: "I'm not on disability
and I've never applied for it in my life!!" ....SILENCE ...(accompanied by
stunned look on his face hahaha)

He had me confused with a patient (someone I knew) who was coming in to have
him sign off on her disability forms. I went home and called my friend to
warn her. She took her husband with her to the appointment (he's a shrink)
and the doc signed the papers with no protest. Later, I learned the local
Womens' Center has a list of docs to avoid, and his name is on it for being
"demeaning to women." Even his advice about my frozen shoulder, which is
what I went to see him for, was wrong. I figured out a way to cure it by
myself - many painful weeks later.

Unless I travel across the country to see one of the well-known CFS experts
like Cheney or Bell, I assume total ignorance on the part of any doc I see.
I discount their opinions about CFS as much as I would my next-door
neighbors. There are docs out there who will admit their ignorance and
actually learn something about treating CFS, but they're hard to find. I
finally gave up and called that friend I mentioned earlier to ask if her
husband knew any decent shrinks in this area. From reading CFS-L, I wanted
to try a couple of meds, and I wanted a shink to prescribe them, not some GP
who didn't know about side effects. So now my only doc is a shrink 70 miles
away who prescribes my meds and thinks about things for me to try (which I
never do because his knowledge is so limited ;-) He's a child and adolescent
psychiatrist - now who would ever think to consult him about CFS? But he's
an interesting guy from South Africa, so we spend the 30 minute session
talking about stuff in general, not my illness.

People who are uninformed speak out of ignorance, and health professionals
in general classify you according to others they've seen before you. They
don't see you as an individual. I was a health professional before I got
sick, so I know that when they're seeing a new person, they don't look for
individuality, they look for signs and symptoms they're familiar with, so
that they can put the person into a category they're familiar with. That's
the job they're supposed to do, and if they lack knowledge, they can make
egregious errors.

Better luck next time!
Bethany

loddie_may2003

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Jun 25, 2003, 3:25:14 PM6/25/03
to
Bethany,

Thank you so much for your very interesting letter.

I am not sure who I would talk to if it weren't for this forum. I am still so ashamed, embarrassed and intimidated from yesterday. I tell my Mom everything but I cannot tell her about the Doc treating me as if I was an alcoholic.

I called my family Dr. today and talked to his nurse. She read me exactly what was sent to this neurologist. There was mention of alcohol but nothing that should have even been thought about for a second, as in "this patient drinks 1-2 alcoholic beverages a night sometimes". I am not sure why the neurologist treated me like he did, other than thinking about what you said about the Dr's not seeing me as an individual. She told me that she was going to tell the Dr. about it and see if he wanted to do anything else with me.

Still upset.....need to stop my whining and realize.....there is not alot of hope.

Thanks again,
Laurie

---------------------------------

Lisa

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Jun 25, 2003, 7:50:56 PM6/25/03
to
After a year, two appeals totaling about 500 pages, $7000 spent on a lawyer, loans I had to default on with a resulting staggering tax bill, I did get my disability income back. Not for CFS. Because I'm crazy.

My social life, career and financial prospects were cut off at what should have been the flower of my life, many doctors and most layman blame me for this, because of my weight, drinking or laziness, and I'm dependent for my subsistence on an arbitrary hand-out that I can lose at any moment. You're damn right I'm depressed! I'd be crazy if I weren't.

But, so far, they haven't sent me for another IME, and the continuing disability payments have allowed me to get my taxes and debts paid off, so I'm better off than most people who haven't been able to work for 15 years.

To paraphrase the ending of a favorite short story of mine, that's as happy an ending as could be expected with CFS.

--Lisa

Marnia He Sapa

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Jun 25, 2003, 8:08:59 PM6/25/03
to
More to the point, these particular doctors are not qualified to make such
a diagnosis. Every time disability review comes round, instead of the
state of Oregon (who handles it here for the feds) sending me for a helpful
test -- molecular medicine, MRI, fMRI etc -- they send me to visit with a
very wonderful local psychiatrist, as their choice for "their"
physician. Cheaper than any other tests, you see. I really like
her. Anyhow, she puts me through cognitive tests and all sorts of things,
very conscientious, but she is also watching for things I'm not even aware
of, tiny compensatory things for rest, what happens to my voice over two
hours. Not 4-7 minutes. She is charged with diagnosing whether or not I'm
depressed and she is very very clear with me that there is no way any
competent professional could find me so. Arm chair psychologists, on the
other hand, make a list of symptoms which serve their theory, then trim,
hammer or embroider what ever is said by or observed superficially in the
patient(or friend or spouse) to fit. When these people are doctors, their
notes carry some weight unless directly refuted by several other doctors at
disability review. It's assinine, but if the point is to deny disability
claims, it's used. Yes, I didn't take one last time either, and I even
have one, but I do think, with new doctors especially, new to us, a tape
recorder is a good idea. Also for any disability appointments. I think
people could likely be fired/reprimanded for some of the things they say,
put in notes, quote, that are grossly incorrect if one had evidence it was
incorrect. But the presence of a recorder might, for these types, be seen
as confrontational. Bad docs- phooey! rant rant. I'm done. best, Marnia

>Laurie


>
>Lisa <lisa...@uci.net> wrote:
>The last time they sent me for an Independent Medical Exam, she asked me
>about my alcohol use (which I admit is more than is good for me) and in
>her report, exaggerated every specific I gave her. I said, 2-6 beers once
>or twice a week, never before 3pm, and never in my life have I had even
>one drink every day for longer than two weeks, became "Some weeks she
>drinks 6 to 8 beers from noon until 3 pm for 2-3 weeks in a row (it helps
>her sleep) but then she stops abruptly reasoning that "I cannot be an
>alcoholic as I can quit so easily." " I never said anything like that.
>It's the stereotypical "I can quit anytime I want to" of the alcoholic in

>denial.(snip)

>I suppose, at her discretion, she could have concluded that I'm an
>alcoholic in denial and probably drink more than I reported (although it
>wouldn't have been true) but to state as a fact that I drink more than I
>do, and to quote me as saying something I didn't . . . if only I had taken
>a witness or tape recorder, I wonder if that would come under
>"malpractice." That was very prejudicial and cost me a LOT of money.
>
>Even at that, her conclusions listed "Intermittent Alcohol Abuse" 7th down

>on the list and below Chronic Fatigue Syndrome (that was 3rd).7th down on

Cath K

unread,
Jun 25, 2003, 9:44:50 PM6/25/03
to
Laurie, I just went over and checked the co-cure site, and found the
following research abstract:

http://groups.yahoo.com/group/Co-Cure/message/4735

Ideal versus reality: physicians perspectives on patients with chronic
fatigue syndrome (CFS) and fibromyalgia.

<snip>

Different strategies are developed to handle the encounters with these
patients. The results also illuminate the physician's interpretations of
patients in moralising terms. Conditions given the status of illness were
regarded, for example, as less serious by the physicians than those with
disease status. Scepticism was expressed regarding especially CFS, but
also fibromyalgia.

Moreover, it is shown how the patients are characterised by the
physicians as ambitious, active, illness focused, demanding and
medicalising. The patient groups in question do not always gain full
access to the sick-role, in part as a consequence of the conditions not
being defined as diseases.

..............

Sounds like some doctors I know ;-( I *think* we're making progress in
doctors taking CFS seriously, but it's certainly taking a long time....

Cath

Cath K

unread,
Jun 25, 2003, 9:36:22 PM6/25/03
to
Jeez, do I ever know how you feel.... at the time I got sick, my
psychiatrist (treating me for mild depression) decided it was major
depression, and recommended electroshock therapy... totally ignored anything
I said that didn't fit his preconceived diagnosis. And my primary care doc
told me that all that was wrong with me was deconditioning and a mental
block against going back to work.

It can be so dangerous for doctors to know anything at all potentially
negative about you. These docs knew I was struggling with mild depression,
and instantly concluded that was my total problem. But I needed help for
the depression - damned if you do and damned if you don't.

It hurts so much... it is such a betrayal of trust for that doctor to treat
you the way he did.

The good news is that, after a couple years of searching, I have assembled a
team of good doctors who not only 'believe in' CFS, but (except for my
primary care doc, who freely admits to not knowing much) are quite
knowledgeable about CFS. But it took a lot of looking, and the willingness
to ditch doctors who didn't measure up. And at the same time being
diplomatic, because I knew they would be contacted regarding SSDI and my
long term disability insurance claim, and I didn't want them PO'd at me.

{{{{hugs}}}}

Cath

msauve

unread,
Jun 25, 2003, 10:22:27 PM6/25/03
to
Hi Laurie

I am so sorry that this happened to you. I had a similar experience a couple
of months ago. I was off work and they sent me to their gp and psychologist
b/c they said my docs had not come up with a diagnosis and I was apprachign
the end of my general illness benefits so if I continued to need to be off
work, I would need to file for disability. I had already been to three gps and
an internist and none could figure out was was worng with me. I have given
more blood in the last year than in all my 33 previous years combined!! :o)
Anyway the gp treated me horribly. I was so upset when I got home I cried and
screamed and could not sleep for a few nites. Thanks to my boyfriend who
calmed me down by telling me that the doc was the idiot and obviously did not
understnad CFS. After that expereince I called the ME Scoiety here and got
them to recommend a specialist. He is an internist and is great. He really
beleives in CFS and beleives that htere are ways to treat it - differnt for
everyone but we have to find a way that works for me. So now he is helpign me
to get the next 6 months off work by goign to 'rehab' consiting of yoga and
mild exercise for a couple of hours a day. He got me on meds to sleep and
mild exercise and my gp has me on a bunch of vits. My gp's wife had CFS for
several years so he is also very inderstanding. Two motnhs ago I could barely
take a shower. Now I am buying my own groceries, cookign for myself, seeign
friends gain, and even goignon for bike rides! :o) It took some work to find
these docs but don't give up there are some understandign ones out there. And
for the majority who don't seem to be so that we unfort. have to encounter,
don't let them get to you. If they could even walk a day in our shoes. Oh how
many times I wished that gp could. She told me I was just depressed and would
feel better if I went back to work. I was never depressed befroe I got sick.
Who's not goign to feel depressed not being able to do anythign they love and
having to ask for help all the time!?

Take care Laurie. My thoughts are with you,
Monique

>===== Original Message From Chronic Fatigue Syndrome discussion CFIDS/ME

<CF...@MAELSTROM.STJOHNS.EDU> =====

>Patricia M <pcmo...@flash.net> wrote:
>>Would not it be great if he did find parasite and I did not after all have
>CFS???? !!! then they could treat me and then I would finally feel good
>again???
>>
>>Am I now off the wall?? If I am it is a dream worth thinking about.
>
>Seems kinda bizarre now, but when I tested positive for Hep C in 1998, after
>being dx'd with CFS in 1992, I was actually thrilled! Finally! I had
>something legitimate.
>
>So yes, I can understand how you feel.
>
>Pat
>

loddie_may2003

unread,
Jun 26, 2003, 12:45:17 AM6/26/03
to
Cath,

I am so happy for all of you that have found some competent doctors who know about CFS.

I wish that some of the uneducated quacks would just realize that if we felt good......we would want to go to work, we would want go and take care of things....we want to be normal......if we felt good!!! Like we all have just chosen to be feel like we have the flu and want to feel miserable each and everyday. Yeh..... I am so upset still...... we take our time and our money to go and get help......If I felt good, I would have rather gone shopping or out to luch or whatever. Why do they think that this is all our choice???

I am going to eat and eat to get these sleeping pills soaked up ......they are making me feel so weird.

Thank you again for writing to me. It really does help to hear others thoughts...

Laurie

{{{{hugs}}}}

Cath

---------------------------------

loddie_may2003

unread,
Jun 26, 2003, 12:53:24 AM6/26/03
to
Thank you Monique, for your words of encouragement.

The neurologist that I saw prescribed me with a sleeping pill.....tonight I thought...okay, I will try this. The bottle said to take 1-2 pills even tho earlier I had read about it and people take it two times a day. I only took one and it has only caused me great problems tonight. Each time that I thought that I was falling asleep.....horrible thoughts would scare me into tossing and turning.....scarey thoughts.....my skin was crawling and still is. The name of it is Trasadone or Trasodone?? It is downstairs or I would read it for you.
So.....another sleepless night.

I did not think that I was that depressed, but if this keeps up....I am sure that things will only get worse.

I only hope and pray that I will go to sleep before long.....but I feel wide awake and weird all over.

I am going to look into finding another Dr. Tomorrow, that is if I can get out of bed. I am supposed to return to work on the 7th.......this also depresses me. I cannot imagine doing my job ( Corrections Officer) the way that I feel.

Thank you for your letter to me. Even tho I sound so down, the letters help me to feel a little better knowing that others have had some of these hard roads as well. I am sorry for all of us!!!

I want to and will not give up hope to beat this.......and try real hard not to let another Dr. beat me down. But there are those days......

Thank you again,
Laurie

Bethany Wilson

unread,
Jun 26, 2003, 1:11:58 AM6/26/03
to
Hi Laurie,

you wrote:
>
> The neurologist that I saw prescribed me with a sleeping pill.....tonight
I thought...okay, I will try this. The bottle said to take 1-2 pills even
tho earlier I had read about it and people take it two times a day. I only
took one and it has only caused me great problems tonight. Each time that I
thought that I was falling asleep.....horrible thoughts would scare me into
tossing and turning.....scarey thoughts.....my skin was crawling and still
is. The name of it is Trasadone or Trasodone??

I take trazodone every night for sleep, but it doesn't work for everyone.
I've never heard of anyone taking it twice a day though for sleep. I've
taken it by mistake in the morning, and I can hardly stay awake for about 6
hours.

It's not a strong medication. It's actually an older anti-depressant that
fell out of favor because it did little to alleviate depression, plus had
the side effect of sleepiness. So docs started prescribing it as a very mild
sleeping pill, and giving the patient something else for depression.

I had the same kind of reaction you did only it was to doxepine, another old
anti-depressant that causes sleepiness. A lot of CFS patients take it for
sleep and swear by it.

You just never know what's going to work for you till you try it!! Such fun
getting those side effects. :(((

At least trazodone doesn't take long to wear off. I hope you get some sleep
soon!
Bethany

Jeanne Redmon

unread,
Jun 26, 2003, 1:32:31 AM6/26/03
to
Dear Laurie,
I am so very sorry that you are having such a hassle with the doctors. I
have found that neurologists are hard to deal with when one has CFS. My
support group members have had trouble. I had a good one who diiagnosed me
with MS in '85, but don't know how he is with CFS as we moved across the
country. Have you looked at the good doctor list in your area? It is on
the Co-Cure site. If you don't have the URL or want me to look it up for
you, write me back channel and tell me where you are. Try to not think of
the bad guys for awhile, and rest. I am thinking of you, and praying that
you can find a good doctor, and get some answers. Wouldn't it be great if
the problem were alcohol? We could cure that.
Hugs, Jeanne

Marnia He Sapa

unread,
Jun 26, 2003, 1:48:54 AM6/26/03
to
Me, way bad dreams on itsy doses Elavil. best, Marnia

Laurie:


>thought that I was falling asleep.....horrible thoughts would scare me into
>tossing and turning.....scarey thoughts.....my skin was crawling and still
>is. The name of it is Trasadone or Trasodone??

>Bethany:

Felicia Jackson

unread,
Jun 26, 2003, 2:56:07 AM6/26/03
to
********This is a moderator notice being posted to CFS-L/alt.med.cfs
in the Other topic. Please send any replies to the moderators at
cfs-l-...@maelstrom.stjohns.edu rather than just replying
to this email and sending it to cfs-l. *****************

Hi all:}
Just a brief reminder that when responding to a post we all try and
remove(cut/snip)as much of the
original text of the post we are replying to as possible. We've had quite a
few responses to this
thread that have had 50+ lines of previously quoted text in it and we all
need to try and cut that
down as much as possible. It can be a hardship for those who still pay for
every minute that
they are online or every byte they download.

Thanks very much!
Felicia

Felicia Jackson
CFS-L/CFS-CHAT Moderator
Personal Email: f_ja...@sbcglobal.net
Moderator's Email: CFS-L-...@MAELSTROM.STJOHNS.EDU

ELN/kdurkin

unread,
Jun 26, 2003, 3:29:56 AM6/26/03
to
I can't take trazedone; it makes
me jolt awake with nightmares and
doesn't really help me sleep. One
of its listed side effects is nightmares.

Kathy
--

Bethany Wilson

unread,
Jun 26, 2003, 3:45:13 AM6/26/03
to
Isn't it weird how different we all are? I sleep 9 hours a night like the
dead using trazodone and rarely remember my dreams anymore. And NEVER get up
to pee!! ;-) But slip me some melatonin and it's nightmare city.
Bethany

Jeremy C B Nicoll

unread,
Jun 26, 2003, 8:14:02 AM6/26/03
to
In article <2003062519243...@web40208.mail.yahoo.com>,
loddie_may2003 <loddie_...@yahoo.com> wrote:

> I am not sure who I would talk to if it weren't for this forum. I am
> still so ashamed, embarrassed and intimidated from yesterday. I tell
> my Mom everything but I cannot tell her about the Doc treating me as
> if I was an alcoholic.

I was thinking about this yesterday, and decided that if this happened
to me I'd write to the (UK's) BMA. You could write to (is it?) the AMA
(or other doctors' professional groups). Or does your town/ county/
state have any patients' pressure groups, or even a local newspaper that
might be willing to print something - for all you know this doctor might
be treating many people badly (the Doc might even be ill!).

There should be some way of at least getting an apology.


--
Jeremy C B Nicoll - my opinions are my own.

TonytheTiger

unread,
Jun 26, 2003, 12:05:17 PM6/26/03
to
Jeremy, In Oregon there is a state board of medical examiners. They'd be the one I'd contact. I believe every state licenses their own doctors. You have a good idea about complaining. It just takes a letter and a stamp.

Marnia He Sapa

unread,
Jun 26, 2003, 5:11:55 PM6/26/03
to
Nope, Jeremy, no apologies this side of the pond. Apology can be construed
as admission of wrong-doing, and them's grounds for litigation. Even when
cash settlements are made, there's always a clause that states this in no
way admits to any wrong-doing. tra la, best, Marnia

Bethany Wilson

unread,
Jun 26, 2003, 5:20:00 PM6/26/03
to
> Nope, Jeremy, no apologies this side of the pond. Apology can be
construed
> as admission of wrong-doing, and them's grounds for litigation. Even when
> cash settlements are made, there's always a clause that states this in no
> way admits to any wrong-doing. tra la, best, Marnia

How times have changed. Sigh. When my father died of colon cancer in 1972,
our family doctor wrote a letter of apology to my mother, saying that if he
had sent my father off for tests earlier, he would probably still be alive.
Can you even IMAGINE that happening today in our litigious world? Hopefully
there will be a swing back into a middle ground someday.
Bethany

TonytheTiger

unread,
Jun 26, 2003, 5:56:39 PM6/26/03
to
Hi Bethany
If a doctor chops off the wrong leg or kidney, they should pay. In the 50's doctor's got away with murder. As bad as the legal system is, it's better than the medical system. The Oregon legislature passed a law limiting damages for pain and suffering to 250,000. The Oregon Supreme Court nullified the law. Sky's the limit in Oregon as it should be. Let a jury decide.

loddie_may2003

unread,
Jun 26, 2003, 8:21:06 PM6/26/03
to
Hi all,

I just wanted to write and tell everyone "thank you " for all your words of encouragement, your stories and your circumstances, your support and your time for replying to my message of all that I have been going thru.

I have taken all your thoughts into mind and started working on looking for another Dr. today. Also, realizing that he is and idiot for treating me that way. For heavens sakes,,,,I went to see him to feel better and left there feeling worse than ever. Shame on him.

Reading all the wonderful replys has helped me to feel so much better......

Thank you so much,
Laurie

---------------------------------

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