--- In RHODE_ISLAND_FIBROMYALGIA-CFS_SUPPORT@yahoogroups.com,
jcl4753@a... wrote:
> hi kerrie,
> i am a rhode islander with fibro, cfids, myfacial pain,
ibs,headaches, i had
> a hysterectomy so i got rid of my endometreosis.
> i know what it is like to be alone with no one to believe you.
> i have been lucky in that most of the dr.s i have been to know
about my
> issues.
> i go to dr. rafal at rehab of rhode island in north smithfield.
> who are you seeing for your fibro?
> i have had it for a good part of my life but wasn't diagnosed
until about 17
> years ago. i am now 51.
> i am extreely interested in being part of the rhode island group.
> please feel free to email me to talk about anything. fibro or just
if we are
> having a good/bad day.
> i'm disabled too so i am always home.
> joan

Hi Joan! Welcome to the group. Right now it's just the few of us
here, but I really hope in time we can get more RI'ers (or ANYONE
with fibro) to post here. The main reason I made this group was
because I searched all over the place looking for a RHODE ISLAND
based support group. It's been great chatting with people on the net
and I have made lots of awesome friends that way, but I would really
like to make some friends that I can possibly meet in real life. I
really believe that we fibro people should stick together. It's hard
enough to cope with the illness, but when you have to go it alone it
makes everything so much worse.

I have pretty much lost all the "friends" I had before I became ill.
I really feel that once they realized I could no longer do anything
FOR them that they forgot about me. I also know it didn't help to
have to decline every offer I received to go anywhere cause I feel
so crummy.

Speaking of feeling crummy...... I apologize for taking so long to
reply. I know you probably won't take it personally, but in my
experiences some people DO, so I feel the need to explain myself. I
just don't get on my PC as often as I would like. I have my good
days and bad days, but the bad sure do outnumber the good. Since I
last posted last month, I have been feeling very poorly. I just
haven't got ANY energy. I spend the majority of time in bed either
sleeping or resting. I know I should make an effort to get up and at
least stretch. That's what my rheumatologist says. BTW- I go to Dr.
Wendy Silversmith in Providence on Eddy Street. She is part of
University Medical Foundation. I have heard A LOT about Dr. Rafal.
Dr. Silversmith has referred me to him at the fibro clinic in
Smithfield. Unfortunately, I haven't been able to go due to
transportation issues. I live in Providence and I have no car. My
husband takes the car to work so I have no way to get anywhere
during the day. Most of the time I have to ask (or beg rather) my
parents for rides to doctor appointments so I know there's just no
way to get to the clinic. I sure would like to go though because Dr.
Silversmith has RXed heat therapy and deep tissue massages for me.
It's been about 2½ years since I was diagnosed with fibro but I
believe I have had it a lot longer than that. I'm hoping to get to
see Dr. Rafal eventually. Dr. Silversmith is a very good doctor,
IMO. She is the one who diagnosed me with the fibro when all the
other docs were stumped. I went to sooooo many docs too. I was
accused of faking it, just drug seeking, etc. all the time I KNEW I
was sick. I lost my job over this too. I haven't worked in 3½
years now and I am still not on disability. I applied and was denied
so I appealed and I have yet to hear back from them.

If you wouldn't mind, could I chat with you about disability? We can
take it to email if you'd like. I have spoken with a lawyer who told
me that I would win, but that it would be difficult due to my age. I
feel this is not fair and that it is age discrimination. I did not
ask to get sick and they are using my age against me. I was told by
disability that should I get it, they would be giving me a very
large sum of money in retro pay, which I need more than anyone could
know. At the moment I do not even have any heat in my apt. because
of not having any money. That makes the fibro so much worse too
cause of the cold. When I was first diagnosed, Dr. Silversmith told
me that I would never get on disability because fibro was not a
valid illness. But a few months later I learned that it was on the
list. I really think they are trying to screw me out of getting it
and are using my age as the excuse.

For the first few years, until this past June, the only thing I was
given for the terrible pain was Ultram and Skelaxin. The Ultram did
nothing but make me feel worse. I was taking so much Tylenol that I
have had abnormal liver enzyme counts. I have since found another
doctor who is now my primary care doc who actually takes the pain I
have seriously and believes that it should be treated, no matter
what my age. I think she saw how bad I was the first time I had an
appt. with her. I told her flat out that if I had to live my life in
such pain then I chose not to live at all. She RXed methadone for
me, at my request. She offered Oxycontin or morphine first, but I
chose methadone due to the fact that it lasts so much longer and
works SO MUCH better than Oxycontin or morphine, without
that "loopy" feeling. My husband has a RX for Oxycontin so I have
tried it but it is not for me. The methadone has worked wonders for
the pain. I feel like I WANT to live now.

Also, they had me on Skelaxin for the first 2 years but I did not
get much relief from that either so I asked my new primary doc about
trying a new muscle relaxer. She RXed Robaxin for me first, but it
didn't work for me so we tried Zanaflex next and that is what I am
now on. I don't know if any of you have tried it, but for me, it is
like a miracle drug. It works better than anything else they have
given me for the stiffness. The only other thing that worked any
better was Valium, which is a REAL muscle relaxer but they are not
about to script that for me. I wouldn't even bother asking. I can
always get it online though. When I first saw Dr. Silversmith I
asked her about methadone for pain because I have chatted with many
fibro patients who are on it for pain but she told me that they
could not RX methadone for pain. She said it was only used for drug
addiction, i.e., methadone maintenence. Come to find out, she was
wrong. I have some friends that are pharmacists who told me she was
wrong. I am so glad that I asked my new primary doc about it because
she went and called Dr. Silversmith right away and they discussed
trying me on the methadone. It has been so much better ever since. I
should also tell you that Dr. Silversmith has told me that I am one
of the most severe fibro cases she has ever seen, and she deals with
a lot of them. I KNEW I was in bad shape, but even I was a little
shocked to hear that. The only thing that has made anything any
better for me is the methadone and the Zanaflex.

I try to exercise when I can, but due to the adhesions I have,
it is very, very difficult. If I can chat with you about
endometriosis it would mean so much to me. I have gotten nowhere
with that. I had a laproscopy in Jan. 2003 and they found adhesions.
I was told there was no endo but I do not believe it because the doc
who did the lap. didn't know anything about endo. He wanted to put
me on Lupron without even checking to see if I had endo. I have
since left that doctor. So far, every single doctor I have seen,
both GYNs and other docs have told me that they have no idea what
would cause the adhesions. Not one of them knows that endo causes
them! This is beyond me. My current GYN wants to do another lap. but
I do not want him doing it. They don't know much about endo. I want
to go up to Brigham and WOmens in Boston to go to an expert to see
what is wrong with me. I have even contemplated having a
hysterectomy but I am only 27 y/o and I do not yet know if I want
children or if I can even have them. I am in such MISERY over this.
I have my period ALL YEAR. I've had it over a year straight, no
joke. The docs seem to think I am lying or something but I swear I'm
not. This happens to me all the time. I've gone months without
one and I can go a year or more with it. I have chatted with
hundreds of women with endo and I belong to all the endo groups and
sites. I have almost ALL the symptoms so I don't know why I can't
find a doc to help me. It seems like the docs in RI just don't know
much about it at all. I refuse to be put on Lupron due to the fact
that every woman who I have ever met or chatted with that was on it
told me to avoid it at all costs. Even a RN and a doc who has endo
told me not to go on it. THere's even a class action law suit about
Lupron. You can only be on it for a year in your whole lifetime. So
even if it does provide relief from the pain, it's only for a year.
And the side effects alone are worse than the endo in many, many
ways. No thanks. I have enough problems with adding to them. I
really believe I DO have endo though, I just have way too many of
the symptoms and the adhesions. I've never had any abdominal surgery
before the lap, so I didn't get them that way.

Wow, this is turning out to be a long post! I started this group to
hopefully help others with fibro and maybe have them help me. We all
need to help each other though. I know I can't be the only person
out here who feels so alone in it. It's ironic, I have looked and
looked for a support group that meets in person and I found one this
past weekend in the Sunday paper. Have any of you heard of it? If
you have, have any of you gone to it? I was planning on going
tonight but I don't feel up to it today. I will post the info on
that support group in my next post so everyone can see it.

Do you have fibro AND chronic fatigue syndrome too, Joan? I do. I
have an appt. at the end of this month with my rheumatologist, Dr.
Silversmith. I have been getting fevers almost every day and I get
sick at the drop of a hat. Every little cold or bug that comes
anywhere near me or if anyone who is around me who's sick- I get it.
Ed told me that these are big CFS symptoms. My rhem. told me that
the fibro wouldn't cause the fevers. As good of a doc she is, she
seems to be in the dark about a lot of things about the fibro and
CFS. I have gone to so many appts. with articles or documentation
about things I got off the net and they never want to read them.
They never even look at them. It's like they think I am trying to
come across like I know more than they do and they can't stand that.
I just hate that! All I want them to do is look at it and let me
know what they think. I've done things like make up forms in Excel
with my symptoms and how often I get them, etc. and they act like I
am just being a hypochondriac. Because of what I have gone through
with doctors, I just don't trust them. Even the ones I like I don't
totally trust. So many times I have been misdiagnosed or given meds
that I have told them I am allergic to.... It's so disheartening.

Do you or anyone else have multiple drug allergies and/or
sensitivities to chemicals? I am allergic to ALL NSAIDS (Motrin,
Aleve, Bextra, Vioxx, Toradol, etc.) and I'm even allergic to stuff
like Trazadone and Elavil. They have tried me on both trazadone and
Elavil but I had hallucinations on both. Even after that, I was told
to try the trazadone again. Don't they think we can tell when we
cannot tolerate a medication? Sheesh! I'm also asthmatic so if I
take any NSAIDS, my throat swells up and I cannot breathe. I've even
had allergies to certain birth control pills. It makes it hard for
them to treat me I guess. Most docs think I'm lying about the
allergies so they RX them for me anyway. Thankfully the pharmacy
refuses to fill them and they'll call the doc and tell them so. I
have worked as a certified pharmacy technician so I know a decent
amount about medications. What I don't know I can either look up or
ask one of the pharmacists I used to work with. It's nice to know
about the drugs they RX me cause it's something that will be going
in MY body. I won't take anything without learning about it first.
Look at what happened to Vioxx. I have had multiple doctors try to
RX that for me, even when I told them about my allergy to it! When I
worked in a pharmacy, we used to fill Vioxx for almost every kind of
pain a person had, whether it be for menstrual cramps or chronic
pain. I'll never forget the pharmacist saying that it was an outrage
that the doctors were scripting Vioxx for anything when the patient
could just as well take Motrin or something. The docs get certain
encentives from the drug companies like money or free "stuff" for
scripting certain meds, like Vioxx. Now Vioxx has been pulled off
the market due to the harm it was causing. This is a big reason why
I am wary of being put on newer meds. You just never know. They had
my dad on Vioxx and it ended up raising his blood pressure
dangerously high. Vioxx is just one of the many meds out there that
the docs prescribe freely because they get something out of it too.
It's just not right. There are so many of us fibro patients who are
not having our chronic pain treated at all or are barely being
treated. I hope we can end this sort of thing by banding together.

Anyway, before I start going off on a tirade here, I will wrap this
up. I hope to hear from you soon! If you don't see me post for a
while it just means that I am in a lot of pain and just can't sit at
the PC. I try to get on here as much as possible and post and keep
up with it all when I am up to it. Please, feel free to add any
links that you feel would be helpful to anyone.

If you would like to email me, Joan, my email address is:
LadieKerrie613@... I'd really like to chat one on one with
you. Thanks and I hope you feel well. Talk to you soon!

~*Kerrie*~

--All human actions have one or more of these seven causes: chance,
nature, compulsion, habit, reason, passion, and desire.

Aristotle (384 BC - 322 BC)