Managing fibromyalgia

Posted by mrs artavia @mrsartavia, Aug 29, 2013

Hello everyone, I am looking for anyone who suffers from fibromyalgia and can suggest healing methods, medication and I would like to compare symptoms. Mine feels as if I had the flu, headache, joint aches, terribly tired, pain around the glands, stomach pain, low back. If lyou can please write with any comment or suggestion for relief, or any idea what causes it I will appreciate it thank you.

@ladyjane85

I was thinking this was my support group for fibro and back pain . Have
heard some diff meds, altho I never respond well to anything. But thank
you @disgusted (that’s the way I have felt for 30 years now with 5
surgeries on back and all the diff procedures which do not work. @ladyjane85

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In reply to layjane85 who wrote – I was thinking this was my support group for fibro and back pain . Have
heard some diff meds, altho I never respond well to anything. But thank
you @disgusted (that’s the way I have felt for 30 years now with 5
surgeries on back and all the diff procedures which do not work

Yes, online support groups are good. I realized that after I posted my reply. What I meant was having a live support group. That also helped. I also had one back surgery which did not work, so I know how you must feel. My heart goes out to you for your suffering for so long. I hope you have a supportive family.

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@disgusted I do not have as much pain at night anymore, but often have
insomnia from RLS. I use melatonin and valerian root (supplements) and
occasionally an o/c PM med. But I can still have a no sleep night for no
reason, or only 3 to 4 hours. Gabapentin makes me drowsy all day with no
pain relief. from @ladyjane85

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@disgusted I just get an email with each one’s message separately. So
do not know what came before – prefer to answer thru the separate email
than to go on to line to the chat room with the 16 or more msgs I rcv each
day on my gmail from the Mayo chat. Rrealised it was not a response to
something I wrote.
from @ladyjane85

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@ladyjane85

@disgusted I do not have as much pain at night anymore, but often have
insomnia from RLS. I use melatonin and valerian root (supplements) and
occasionally an o/c PM med. But I can still have a no sleep night for no
reason, or only 3 to 4 hours. Gabapentin makes me drowsy all day with no
pain relief. from @ladyjane85

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In reply to ladyjane85 who wrote – I do not have as much pain at night anymore, but often have
insomnia from RLS. I use melatonin and valerian root (supplements) and
occasionally an o/c PM med. But I can still have a no sleep night for no
reason, or only 3 to 4 hours. Gabapentin makes me drowsy all day with no
pain relief.

I am fortunate that my insomnia was unrelated to RLS or even pain (that developed after the insomnia, but became a major contributor to the insomnia). I don’t take the Gabapentin for sleep, but i agree with you about the side effect of daytime drowsiness. I have often taken a nap during the day as a result, but try to limit them to mornings if I can. For my sleep I have found temazepam to be really helpful. It causes me to go into a state of relaxation in which I simply stop moving. It sounds really odd, but if I don’t happen to get into bed in time sometimes I will fall asleep while reading and wake up at midnight or later when my clock strikes, only to find that my head has not nodded off and I am still holding the open book. Then I go into slow mo to get to bed.

The bottom line, as my sleep doc told me, is that there are a lot of drugs for insomnia out there. He started me on his plan A nine years ago and it is still working. So, keep trying and hoping that something will work for you.

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@ladyjane85

@disgusted I just get an email with each one’s message separately. So
do not know what came before – prefer to answer thru the separate email
than to go on to line to the chat room with the 16 or more msgs I rcv each
day on my gmail from the Mayo chat. Rrealised it was not a response to
something I wrote.
from @ladyjane85

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I know. It is certainly confusing. I decided to copy and paste the
message I reply to. I hope it makes it simpler for people to understand.
Some of the posts seem to be unrelated to others around them.

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@colleenyoung

@disgusted What did you GP do that helped? What is your diagnosis?

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@1langla I get these msgs on my gmail and do not know who you were
responding to. I try to write person I a sending to and then say who I
am. But I will say a rheumatologist some 20 years ago pressed on the
points they know mean fibro – cannot remember whether it was 12 or 18
points on the body (one can look it up) and told me early on, but since I
have so much back trouble I did not believe the dr. Several more told me
also thru the years so had to believe I also have fibromyalgia, but I still
maintain I cannot tell – do not have the usual symptoms, bec I hurt so much
with many back symptoms. But there are trigger points they can press.
from @ladyjane85

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@ladyjane85

I was thinking this was my support group for fibro and back pain . Have
heard some diff meds, altho I never respond well to anything. But thank
you @disgusted (that’s the way I have felt for 30 years now with 5
surgeries on back and all the diff procedures which do not work. @ladyjane85

Jump to this post

@disgusted from ladyjane85 I am now 86 and for the last 4 years I
moved to a continuing care facility bec it was impossible to do housework
and could only stand 10 min before pain was so bad that hard to cook. Had
been looking into facilities for 3 years on line and visiting nearby ones.
Only one in my county was a licensed continuing care. No family nearby.
Daughter did move down to Tampa whereas I am on the Atlantic coast of Fl so
she only comes when I land in hospital. At this age one has many health
problems though I look young. She has a family and works so cannot come
often so do not call on her unless hospital lets her know. Have one
bedroom and living room, sm kitchen. Light housekeeping done for you and a
meal in formal dining room. CC living is expensive however, but they can
never throw you out even if you run out of money…

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I also had the added difficulty that as a man they did not think that I
could have fibromyalgia because they think it is a “woman’s problem”. I
also had intense back pain and my doctor ran me through a complete cycle of
tests for other things, all of which came up negative. At that point I was
hoping that I would have a fatal illness that would at least end the pain.
When he applied pressure on the tender points and I responded he determined
that i had fibromyalgia.

Then it got amusing. He asked me if I had any ideas as to how to proceed.
I did not know much other than Lyrica was being advertised, so he started
me on that. After a couple of days (it was Mother’s Day and I was out of
town with my family) I broke out in hives, so that ended Lyrica. Then I
suggested gabapentin and he started me on that. I began to get relief from
the pain when I got into megadoses of it and it has been working for me
since then. The side effects have not been too bad for me, so I have been
a happy camper, counting myself extremely fortunate, and hoping and praying
for other fellow sufferers.

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I know exactly how you feel. I was at that point myself. I had to hire
folks to come into my home and care for me. I was only 55 and looked at
least ten years younger. My mother, who was in her late 80’s at the time
simply could not fathom my idiocy and mocked me for wasting my money. I am
functioning normally now, although things tend to take longer for me to
do. My neighbors probably think I am pathetic because I don’t mow my lawn
weekly like they do. I am glad my lawn is heavily shaded so that the grass
grows very slowly. I rebuilt my garage, which was falling apart and put in
a heated driveway. I live in Iowa and we have snowy winters. I am so glad
I don’t need to get out and shovel the snow.

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@disgusted

I also had the added difficulty that as a man they did not think that I
could have fibromyalgia because they think it is a “woman’s problem”. I
also had intense back pain and my doctor ran me through a complete cycle of
tests for other things, all of which came up negative. At that point I was
hoping that I would have a fatal illness that would at least end the pain.
When he applied pressure on the tender points and I responded he determined
that i had fibromyalgia.

Then it got amusing. He asked me if I had any ideas as to how to proceed.
I did not know much other than Lyrica was being advertised, so he started
me on that. After a couple of days (it was Mother’s Day and I was out of
town with my family) I broke out in hives, so that ended Lyrica. Then I
suggested gabapentin and he started me on that. I began to get relief from
the pain when I got into megadoses of it and it has been working for me
since then. The side effects have not been too bad for me, so I have been
a happy camper, counting myself extremely fortunate, and hoping and praying
for other fellow sufferers.

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@disgusted from ladyjane85 That is right, they tend to think fibro as
a female ailment, but common among men also. Lycra was very bad for me.
Gabapentin – I have tried 2 x’s thru the years, never in megadoses bec also
side effects. Tthank you for your good note, The best to you.

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@ladyjane85

I was thinking this was my support group for fibro and back pain . Have
heard some diff meds, altho I never respond well to anything. But thank
you @disgusted (that’s the way I have felt for 30 years now with 5
surgeries on back and all the diff procedures which do not work. @ladyjane85

Jump to this post

Well there are people here pulling for you. Do you have any sources of diversion such as reading, watching some favorite programs?

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@disgusted

I also had the added difficulty that as a man they did not think that I
could have fibromyalgia because they think it is a “woman’s problem”. I
also had intense back pain and my doctor ran me through a complete cycle of
tests for other things, all of which came up negative. At that point I was
hoping that I would have a fatal illness that would at least end the pain.
When he applied pressure on the tender points and I responded he determined
that i had fibromyalgia.

Then it got amusing. He asked me if I had any ideas as to how to proceed.
I did not know much other than Lyrica was being advertised, so he started
me on that. After a couple of days (it was Mother’s Day and I was out of
town with my family) I broke out in hives, so that ended Lyrica. Then I
suggested gabapentin and he started me on that. I began to get relief from
the pain when I got into megadoses of it and it has been working for me
since then. The side effects have not been too bad for me, so I have been
a happy camper, counting myself extremely fortunate, and hoping and praying
for other fellow sufferers.

Jump to this post

Responding to ladyjane85 who wrote – That is right, they tend to think fibro as
a female ailment, but common among men also. Lycra was very bad for me.
Gabapentin – I have tried 2 x’s thru the years, never in megadoses bec also
side effects. Tthank you for your good note, The best to you.

The best to you, as well.

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@ladyjane85

I was thinking this was my support group for fibro and back pain . Have
heard some diff meds, altho I never respond well to anything. But thank
you @disgusted (that’s the way I have felt for 30 years now with 5
surgeries on back and all the diff procedures which do not work. @ladyjane85

Jump to this post

Thanks!Hopefully,that means praying 4 me 2.Huh?I do read&watch tv.

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What did your doctor give you for sleep? My sleep is awful after a knee replacement. Focusing on the pain with different meds (percoset, gabapentin, acetaminophen), but still up every 2 hours. Beatricefay

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Hello, where did you find the Dr. that help you for sleeping? I myself have hard time sleeping, I only get 3 or 4 hrs.I have been taking sleeping pills for a long time and I don’t to use them anymore. Thanks for the info.

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