pjdxxxw
10-19-2006, 11:04 PM
Hi, I am Dee and I forgot to delurk earlier. I had been diagnosed (symptomatically)
as having Lupus in 1987, but now it seems that
FM is in question. I am on one of those PPO plans where you need
a primary care doctor which I hate because of my history they say
I am too complicated and need to be referred out, etc.
The Rheumie I had for the past 19 years moved father away so trying
a different Rheumie at this time. He drew blood while waiting for old
records and according to his test results he "does not see lupus but
I will need to see your history". In the meantime I had been experiencing
back, knee and neck pain for 3 months as I tried to weed through general
and family practice doctors trying to find one that would just take over
everything. No luck. So, here I am still feeling miserable. Maybe someone
here can give some insight (from personal experience) as to what may be
helpful.
I have in the past had elevated ANA titers (speckled) and low platelets,
and some other Lupusy stuff out of whack a bit.
For the past 18 months to 2 years I have not been able to wear a bra
because it set off pain around the lower rib cage. However the past few
months I would get this pain in the flank area esp. no matter if I wore a
bra or not.
Lower back pain - vertebrae slightly out of whack.
Knee pain if I stand too much. I am somewhat over weight, wear a size
16 to 18 depending on the style. At times feels like my hips will pop out.
Insomnia from pain and/or snoring spouse I am somewhat sleep depreived
and as one gal put it feels like I sleep on marbles...hips, shoulders, etc...
sore from matresses and need something that does not jiggle much or I get
a headache from the motion. I have tried the cheaper memory foam mattresses
...no good. Plan to try the Sleep Number mattress. (Anyone tried those?
Do they help you?)
At this point I am fatigued, trying to find a pain med that will not cause
me to have a headache on the third day and would like to sleep well.
NSAIDS cause me to bruise, Percocet and Ultram will cause dizziness
and headache even if I just take one tablet at bedtime and none during
the day. I seem to do best if I take a sleeping pill but I don't want to take
those every night and keep needing more and more for them to work. Anyone
have suggestions as to what may work for my problems??? I am really tired
of being a guinea pig for doctors who have not felt this way and say let's try
this.........:(
At this point inmy illness (whichever it is) I am frustrated, disgusted with
my insurance and feeling a bit depressed because of all the running around
trying to get something to work for me.
.
as having Lupus in 1987, but now it seems that
FM is in question. I am on one of those PPO plans where you need
a primary care doctor which I hate because of my history they say
I am too complicated and need to be referred out, etc.
The Rheumie I had for the past 19 years moved father away so trying
a different Rheumie at this time. He drew blood while waiting for old
records and according to his test results he "does not see lupus but
I will need to see your history". In the meantime I had been experiencing
back, knee and neck pain for 3 months as I tried to weed through general
and family practice doctors trying to find one that would just take over
everything. No luck. So, here I am still feeling miserable. Maybe someone
here can give some insight (from personal experience) as to what may be
helpful.
I have in the past had elevated ANA titers (speckled) and low platelets,
and some other Lupusy stuff out of whack a bit.
For the past 18 months to 2 years I have not been able to wear a bra
because it set off pain around the lower rib cage. However the past few
months I would get this pain in the flank area esp. no matter if I wore a
bra or not.
Lower back pain - vertebrae slightly out of whack.
Knee pain if I stand too much. I am somewhat over weight, wear a size
16 to 18 depending on the style. At times feels like my hips will pop out.
Insomnia from pain and/or snoring spouse I am somewhat sleep depreived
and as one gal put it feels like I sleep on marbles...hips, shoulders, etc...
sore from matresses and need something that does not jiggle much or I get
a headache from the motion. I have tried the cheaper memory foam mattresses
...no good. Plan to try the Sleep Number mattress. (Anyone tried those?
Do they help you?)
At this point I am fatigued, trying to find a pain med that will not cause
me to have a headache on the third day and would like to sleep well.
NSAIDS cause me to bruise, Percocet and Ultram will cause dizziness
and headache even if I just take one tablet at bedtime and none during
the day. I seem to do best if I take a sleeping pill but I don't want to take
those every night and keep needing more and more for them to work. Anyone
have suggestions as to what may work for my problems??? I am really tired
of being a guinea pig for doctors who have not felt this way and say let's try
this.........:(
At this point inmy illness (whichever it is) I am frustrated, disgusted with
my insurance and feeling a bit depressed because of all the running around
trying to get something to work for me.
.
Sponsor
kirstee
10-20-2006, 01:20 PM
Hi Pjd:
I know you are frustrated. Before I was diagnosed with FM, I was ready to pull my hair out from frustration. I did a lot of research after I received the diagnosis, and found a lot of information from "What Your Doctor May Not Tell You About Fibromyalgia" by Dr. Paul St. Amand. A lot of the whacky symptoms I was having was finally validated after reading this informative book. Dr. St. Amand also elaborates on ways of coping, and the type of medication that he uses to help FM patients feel better. Since I lived in the area of Dr. St. Amand's practice at the time, I started seeing him and I now believe in what he is doing. I am almost totally symptom free.
It sounds like you have more complexity to your affliction than I, but maybe this book could help you to remediate some of the issues you are having.
I have seen some people on this board refer to Dr. Teitlebaum's methods of helping FM patients. This may be another alternative treatment plan to look into.
My blessings to you as you search for answers!
Kirstee
I know you are frustrated. Before I was diagnosed with FM, I was ready to pull my hair out from frustration. I did a lot of research after I received the diagnosis, and found a lot of information from "What Your Doctor May Not Tell You About Fibromyalgia" by Dr. Paul St. Amand. A lot of the whacky symptoms I was having was finally validated after reading this informative book. Dr. St. Amand also elaborates on ways of coping, and the type of medication that he uses to help FM patients feel better. Since I lived in the area of Dr. St. Amand's practice at the time, I started seeing him and I now believe in what he is doing. I am almost totally symptom free.
It sounds like you have more complexity to your affliction than I, but maybe this book could help you to remediate some of the issues you are having.
I have seen some people on this board refer to Dr. Teitlebaum's methods of helping FM patients. This may be another alternative treatment plan to look into.
My blessings to you as you search for answers!
Kirstee