Hi Linda & all,
Thought I would relate my experience re: PD and fibromyagia, for what it
might be worth.
Linda S. Breedlove wrote:
> A couple of months ago Ed's doctor prescribed amitriptyline for him, as
> he does not have tremors but has *much* pain, especially in the mornings,
> along with stiffness. (He had already been on Sinimet, permax and
> eldepryl for three years).
I DO have tremor, primarily in my left hand, which has been managed pretty
well with Sinemet and Sinemet CR. In recent months my right hand, foot and
head have become more involved, especially when stressed or very tired. A
different neuro has been trying to help me with the progression. He gave me
Permax first. It put me "in a fog" somewhere between reality and the twilight
zone. It did help the tremor. Two weeks ago the neuro stopped the Permax and
put me on Parlodel, 1/2 tab twice a day. It has helped the tremor, somewhat,
without the other problems.
Prior to my diagnosis of PD, 18 years ago, I had been told by doctors that I
had arthritis. *Much* pain and stiffnes has been part of my experience also.
I was told that pain wasn't a PD symptom and that it was probably arthritis
related. Taking four aspirin up to four times a day for the pain was the Rx.
About six or seven years ago I began having burning sensation and pain in my
biceps. I heard a report about fibromyalgia that sounded a lot like what I
was experiencing. I told my neuro at the time about it and he put me on
Fenoprofen (sp?) which helped the burning feeling. The general muscle pain
continued to be a problem.
> He hasn't taken any yet, as he's somewhat reluctant to, so I don't know
> if they'll work...but here's my question: I've been reading some about
> the disorder Fibromyalgia (or fibrositis, its new 90's name) and
> discovered this amitriptyline is the drug given for that disorder, as it
> promotes "deep" muscle-restorative sleep. It's about the only effective
> drug for fibromyalgia patients.
About a year ago I got to the point that I wanted to try and find out whether
or not I had fibromyalgia. I thought I probably did based on my own research.
I went to see a rheumatologist for help. After several visits and
examinations he concluded that I didn't fit the complete profile of symptoms
(tender to painful at _?_ number of joint touch points etc.) to have
fibromyalgia. He tried a couple of meds, but I ended up taking 2 Daypro
daily. This helps some, but I still have general soft tissue pain in most of
my body. My family doctor tells me to take Tylenol for the pain. It does
little or no good. Anacin seems to help most, but because the Daypro is an
anti-inflammatory the doctor doesn't want me to take it.
I don't recall amitriptyline being mentioned by any of my doctors. Is that
the name it is dispensed under or are there other name(s) for the drug?
> Has anyone on this list had any experience with getting incorrectly
> diagnosed with Parkinson's Disease, when, in fact, they had
> fibromyalgia? Or vice versa?
I said all of that to basically say, I still don't know for sure. With moving
from Ohio to Florida, changing insurance providers etc. I've seen several
neurologists over the years. All of the them have agreed with the PD
diagnosis, a couple of them, however, somewhat questioningly. And me, I've
accepted the PD diagnosis, also somewhat questioningly, and, by God's grace,
try to deal with the aching etc. one day at a time. It gets worse this time
of year, here in Florida, where we have almost daily afternoon thunderstorms.
My body tells me the storm is approaching long before it gets to us. It's
often more accurate than the weatherman.
> Ed's symptoms sure fit the fibromyalgia syndrome more than PD.
> If anyone knows about *both* these disorders, please let me know what you
> know. Thanks.
That's about all I "know", and I'm not sure about that......but then neither
are the doctors I've seen.
I wish you and Ed the best. If you, or anyone reading this, know or learn
anything more definitive, I would sure like to hear about it.
SOON!
Gaylon Johnson
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* On the Suncoast of Florida *
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"When the outlook is dark, try the UPlook!"
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