Comments on: Cymbalta & Savella – New Fibromyalgia Treatment http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/ Interesting Topics in Neurology Thu, 02 Jun 2011 06:02:09 +0000 hourly 1 http://wordpress.org/?v=3.3 By: KC http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-4077 KC Mon, 25 Jan 2010 23:03:45 +0000 http://sarasotaneurology.com/?p=51#comment-4077 Hello all, I have read your emails and am flashing back to about a year ago. I was depressed and in pain 24/7 with no relief, on pain meds, resting, nothing seemed to help me. Not only do I live with Fibro but I have the joy of being blessed (not) with Osteo Arthirtis of every joint except my left wrist. Thank goodness for my left wrist. LOL. I was told by one Doctor I had 2 years to live if the Osteo didn't destroy my joints and kill me the many boney spurs floating close to my spine would. Enough about me. Rule #1 you won't and can't change anyone's concept of what we live with daily. Like anything they will never know until they walk a mile in our shoes, which hopefully they won't for I wouldn't wish this on my worst enemy. I live with pain now still 24/7, fibro, osteo, migraines daily and much much more yet I am feeling better. I know it doesn't make sense but once I decided in my own mind I was not a victim, a victim to the osteo, a victim to the fibro and other issues it actually helped with the depression and coping with the pain. Face it we will never live pain free, that is in the past for us BUT we can live with the pain. I refuse to give in to this and submit to it ruling my life. MY LIFE. My favorite thing to say to people that say, I am so busy I just feel pulled in 1,000 directions by things and people, I say "the bad news is times flies....the good news is you're the pilot!" We control our destiny. Seek counseling, a family counselor, a true counselor, call your local family center and get a name. Mine it great, he lets me work things out. I talk he listens and understands. I actually after 45 years never thought I'd say this but I went to church. Tired, looking like heck took all my energy that day to attend a session at the Unitarian Universalist Church. They teach love, togetherness, not GOD, Jesus, Mary, etc. Nothing against that just not my style. They call on many faiths for their services and the people are amazing. In 3 weeks after dragging myself each week I started to feel better. The pain will never go away or get any better in fact only worse BUT if you deal with it with a clear mind, as clear as we can have and determination you can beat it down and live a life that you wouldn't have thought possible. I have my bad days, they get really bad with both the osteo and fibro BUT it isn't who I am, it doesn't rule my life. State of mind is really, truly a major part of the battle. 1 year ago I would have said to that, oh yeah right, whatever. Know this, you can't, can't can't do it alone and I am a stubborn irish woman who has always done everything alone. Not anymore!!! After 45 years of doing everything, I mean everything myself I have swallowed my pride the hardest thing for me to do and now the hardest thing for me to do is live with the pain. I now have the skills to deal with it and the depression bouts actually go away now some times, are less drastic and I don't always think if I don't shift in this char I am going to cry with pain when I have to stand up. I just live life and deal with, some days not as well as others but much stronger with the pain. Another key person who won't let you give up and is under rated, your physical therapist. He keeps me going on those days I want to give up. Just give up. I am exhausted and in pain and he doesn't let me give up which is so important when you live with fibro, you let it overtake you and want to give up and let it....hence the depression comes crashing in full speed ahead. I could go on and on about the lack of support in life, Mom's who argue and friends who say, man you're losing it or people who look at you strange when you are trying to remember the word for house or car, that place you live that thing you know it goes on the road...HANG IN THERE AND PLEASE PLEASE PLEASE GET HELP!!!! Help not from a friend or a relative but a stranger who will become your friend, the PT, your counselor, the pastor at your church, the people on this board... Good luck to all and please take care. Sending a hug electronically so we don't hurt each other LOL. Hello all,
I have read your emails and am flashing back to about a year ago. I was depressed and in pain 24/7 with no relief, on pain meds, resting, nothing seemed to help me. Not only do I live with Fibro but I have the joy of being blessed (not) with Osteo Arthirtis of every joint except my left wrist. Thank goodness for my left wrist. LOL. I was told by one Doctor I had 2 years to live if the Osteo didn’t destroy my joints and kill me the many boney spurs floating close to my spine would. Enough about me. Rule #1 you won’t and can’t change anyone’s concept of what we live with daily. Like anything they will never know until they walk a mile in our shoes, which hopefully they won’t for I wouldn’t wish this on my worst enemy. I live with pain now still 24/7, fibro, osteo, migraines daily and much much more yet I am feeling better. I know it doesn’t make sense but once I decided in my own mind I was not a victim, a victim to the osteo, a victim to the fibro and other issues it actually helped with the depression and coping with the pain. Face it we will never live pain free, that is in the past for us BUT we can live with the pain. I refuse to give in to this and submit to it ruling my life. MY LIFE. My favorite thing to say to people that say, I am so busy I just feel pulled in 1,000 directions by things and people, I say “the bad news is times flies….the good news is you’re the pilot!” We control our destiny. Seek counseling, a family counselor, a true counselor, call your local family center and get a name. Mine it great, he lets me work things out. I talk he listens and understands. I actually after 45 years never thought I’d say this but I went to church. Tired, looking like heck took all my energy that day to attend a session at the Unitarian Universalist Church. They teach love, togetherness, not GOD, Jesus, Mary, etc. Nothing against that just not my style. They call on many faiths for their services and the people are amazing. In 3 weeks after dragging myself each week I started to feel better. The pain will never go away or get any better in fact only worse BUT if you deal with it with a clear mind, as clear as we can have and determination you can beat it down and live a life that you wouldn’t have thought possible. I have my bad days, they get really bad with both the osteo and fibro BUT it isn’t who I am, it doesn’t rule my life. State of mind is really, truly a major part of the battle. 1 year ago I would have said to that, oh yeah right, whatever. Know this, you can’t, can’t can’t do it alone and I am a stubborn irish woman who has always done everything alone. Not anymore!!! After 45 years of doing everything, I mean everything myself I have swallowed my pride the hardest thing for me to do and now the hardest thing for me to do is live with the pain. I now have the skills to deal with it and the depression bouts actually go away now some times, are less drastic and I don’t always think if I don’t shift in this char I am going to cry with pain when I have to stand up. I just live life and deal with, some days not as well as others but much stronger with the pain. Another key person who won’t let you give up and is under rated, your physical therapist. He keeps me going on those days I want to give up. Just give up. I am exhausted and in pain and he doesn’t let me give up which is so important when you live with fibro, you let it overtake you and want to give up and let it….hence the depression comes crashing in full speed ahead. I could go on and on about the lack of support in life, Mom’s who argue and friends who say, man you’re losing it or people who look at you strange when you are trying to remember the word for house or car, that place you live that thing you know it goes on the road…HANG IN THERE AND PLEASE PLEASE PLEASE GET HELP!!!! Help not from a friend or a relative but a stranger who will become your friend, the PT, your counselor, the pastor at your church, the people on this board… Good luck to all and please take care. Sending a hug electronically so we don’t hurt each other LOL.

]]> By: Piyumi http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-4050 Piyumi Wed, 25 Nov 2009 12:16:35 +0000 http://sarasotaneurology.com/?p=51#comment-4050 Hi All What would be best new coming treatment for fibromylagia. Thank you Hi All
What would be best new coming treatment for fibromylagia.

Thank you

]]> By: SandyCorbin http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-4039 SandyCorbin Mon, 09 Nov 2009 19:34:21 +0000 http://sarasotaneurology.com/?p=51#comment-4039 Dr kassiceah, Hope you see this. Im hurtin. Trying to be patient, and treading water, so to speak. Feel like Im about to take a dip. Ive been trying the exercising. cant do two miles a day. Not even every other day. Feel pretty okay, while walking, but my mind still wanders to the negatives.At home, my mind has a mind of its own, completely.I cant keep this up dr. K., Im hurting too badly.Honestly the pain is like an 8, and that IS lower than it was while on the Cymbalta, but its not getting any better, and neither am I. The clonazepam relaxes me some before sleep. I take it at 6 to avoid the hangover, but Im OH SO SLUGGISH still the next day for hours and frequently nap now, tho I fight it. I guess what Im trying to say is IM not Functioning.The clarity is so gone forever it seems, and this cognitive deficit is so very frightening, as much as the pain.Im so very frustrated Doc, and I dont know what to do with myself anymore. Pain, Fog and deficit, fatigue. Yes it could be worse my therapist says, but he doesnt live with this evil disease, thats so very invisible to everyone but me.Ive seen him for 4 months and with the right Patient hes probably great (hes got 25 years experience, and responded to the 9/11 crisis, being from PA), but his approach to therapy leaves me feeling helpless, and unhelped, and unhelpable.Not much else is helping either.I may change therapists, but not without thinking its me, cause it seems no matter what choices I make, theyre poor ones in the end.All I know is that Im not feeling better when I leave his Office, and its been four months, as I said. Please help me doctor, im so very needing something that I dont currently have. What is it? I tried wiki, and your too smart for me. P.S., youre right the anti depressants made me more depressed. If you respond, fantastic and if not, Ill assume you didnt see this, maybe. Sincerely, Sandy Corbin P.S._ tha nks Dr. K. for what you have done, as always. Dr kassiceah, Hope you see this. Im hurtin. Trying to be patient, and treading water, so to speak. Feel like Im about to take a dip. Ive been trying the exercising. cant do two miles a day. Not even every other day. Feel pretty okay, while walking, but my mind still wanders to the negatives.At home, my mind has a mind of its own, completely.I cant keep this up dr. K., Im hurting too badly.Honestly the pain is like an 8, and that IS lower than it was while on the Cymbalta, but its not getting any better, and neither am I.

The clonazepam relaxes me some before sleep. I take it at 6 to avoid the hangover, but Im OH SO SLUGGISH still the next day for hours and frequently nap now, tho I fight it.

I guess what Im trying to say is IM not Functioning.The clarity is so gone forever it seems, and this cognitive deficit is so very frightening, as much as the pain.Im so very frustrated Doc, and I dont know what to do with myself anymore. Pain, Fog and deficit, fatigue. Yes it could be worse my therapist says, but he doesnt live with this evil disease, thats so very invisible to everyone but me.Ive seen him for 4 months and with the right Patient hes probably great (hes got 25 years experience, and responded to the 9/11 crisis, being from PA), but his approach to therapy leaves me feeling helpless, and unhelped, and unhelpable.Not much else is helping either.I may change therapists, but not without thinking its me, cause it seems no matter what choices I make, theyre poor ones in the end.All I know is that Im not feeling better when I leave his Office, and its been four months, as I said. Please help me doctor, im so very needing something that I dont currently have. What is it? I tried wiki, and your too smart for me.

P.S., youre right the anti depressants made me more depressed. If you respond, fantastic and if not, Ill assume you didnt see this, maybe. Sincerely, Sandy Corbin P.S._ tha nks Dr. K. for what you have done, as always.

]]> By: Sandy Corbin http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-4021 Sandy Corbin Thu, 22 Oct 2009 00:55:58 +0000 http://sarasotaneurology.com/?p=51#comment-4021 Sarah hope you see this. I didnt think my post went thru, so Im just looking back.Oh to be fourty again, and know what I do now. You lucky gal!Ill fill you in on something, you cannot change people. Just learn how to live with them or leave them if you must and can.When they tell us fms patients to see a shrink, we all need it by the time we get older(at the very least), not that were crazy, but just coping with the dumb stuff and sometimes people.So if I recommend a therapist(mental health or psychologist) its not because I think your crazy (as Dr. K. once told me) its because we need to learn to EFFECTIVELY cope with people that seem to want to drive us crazy, or just dont understand.Wouldnt more understanding alone be great? Sometimes we can really internalize and it seems to inevitably manifest in PAIN, us fibromites.Im hoping that cognitive behavioral therapy will lead to less pain with me,(but I talk a great game dont I!:) and it doesnt hurt in any way (well infrequently), but Ive been a rolling stone gathering moss, and Ive gotta shed that weight.Psychotherapy HAS helped me in the past. I lost a good therapist and couldnt find another for a while. Bottom line, talk to somebody who can help you figure out how to appraoach your individual situation, without additional pain, emotional/physical. Therapists are Specialists in the area of talk. No I dont think your crazy, but gal if you dont learn how to effectively cope, you might drive yourself crazy by letting them get you down. Sorry for the wordiness.Good luck Sarah. Hugs! Sandy Sarah hope you see this. I didnt think my post went thru, so Im just looking back.Oh to be fourty again, and know what I do now. You lucky gal!Ill fill you in on something, you cannot change people. Just learn how to live with them or leave them if you must and can.When they tell us fms patients to see a shrink, we all need it by the time we get older(at the very least), not that were crazy, but just coping with the dumb stuff and sometimes people.So if I recommend a therapist(mental health or psychologist) its not because I think your crazy (as Dr. K. once told me) its because we need to learn to EFFECTIVELY cope with people that seem to want to drive us crazy, or just dont understand.Wouldnt more understanding alone be great? Sometimes we can really internalize and it seems to inevitably manifest in PAIN, us fibromites.Im hoping that cognitive behavioral therapy will lead to less pain with me,(but I talk a great game dont I!:) and it doesnt hurt in any way (well infrequently), but Ive been a rolling stone gathering moss, and Ive gotta shed that weight.Psychotherapy HAS helped me in the past. I lost a good therapist and couldnt find another for a while. Bottom line, talk to somebody who can help you figure out how to appraoach your individual situation, without additional pain, emotional/physical. Therapists are Specialists in the area of talk. No I dont think your crazy, but gal if you dont learn how to effectively cope, you might drive yourself crazy by letting them get you down. Sorry for the wordiness.Good luck Sarah. Hugs! Sandy

]]> By: sarah http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-3981 sarah Tue, 22 Sep 2009 10:57:04 +0000 http://sarasotaneurology.com/?p=51#comment-3981 I wish my Mother, who i lived with and who has seen me every day of my 17 years with Fibro, would try to understand Fibro Fog. We had a terrible (one sided) fight yesterday that sent me into a flare and a headache i still have all these hours later.... because she said she told me to do something and I said i honestly didn't remember. I am so sick of being FORTY and still being "punished" for my inability to remember. She loses her phone, her keys and her glasses every day and we all have to not say a word. But when the person in the house with a legitimate reason (and I write EVERYTHING down, i make double lists, i have a corkboard in every room... i am committed to doing the BEST i can) for forgetting drops the ball once? It's the end of the world. If anyone reads this and has suggestions for getting our families and other people in our lives to understand or at least be sympathetic, please help. I can't do this with her any more. I'm, tired of being told how worthless i am. I wish my Mother, who i lived with and who has seen me every day of my 17 years with Fibro, would try to understand Fibro Fog. We had a terrible (one sided) fight yesterday that sent me into a flare and a headache i still have all these hours later…. because she said she told me to do something and I said i honestly didn’t remember.

I am so sick of being FORTY and still being “punished” for my inability to remember. She loses her phone, her keys and her glasses every day and we all have to not say a word. But when the person in the house with a legitimate reason (and I write EVERYTHING down, i make double lists, i have a corkboard in every room… i am committed to doing the BEST i can) for forgetting drops the ball once? It’s the end of the world. If anyone reads this and has suggestions for getting our families and other people in our lives to understand or at least be sympathetic, please help. I can’t do this with her any more. I’m, tired of being told how worthless i am.

]]> By: Sandy Corbin http://sarasotaneurology.com/2009/09/20/cymbalta-savella-new-hope-for-fibromyalgia-patients/comment-page-1/#comment-3980 Sandy Corbin Mon, 21 Sep 2009 22:20:26 +0000 http://sarasotaneurology.com/?p=51#comment-3980 Loved the article about Cymbalta. Dr. K. rocks, plain and simple. I'm coming off narcotics for the first time in Forever,it seems. I've placed a lot of faith in this man, a Board Certified Neurologist, who was the First to diagnose, F.M.S. and I'm not a faker. He undertook weaning me from some very powerful and destructive medicine. I am grateful for both, and if he doesn't deserve my faith and trust,nobody does.I'm trying the Savella now. Thanks Dr. K., I'm buying in to it and I'm sure it'll be great! Sincerely, Sandy Corbin Loved the article about Cymbalta. Dr. K. rocks, plain and simple. I’m coming off narcotics for the first time in Forever,it seems. I’ve placed a lot of faith in this man, a Board Certified Neurologist, who was the First to diagnose, F.M.S. and I’m not a faker. He undertook weaning me from some very powerful and destructive medicine. I am grateful for both, and if he doesn’t deserve my faith and trust,nobody does.I’m trying the Savella now. Thanks Dr. K., I’m buying in to it and I’m sure it’ll be great!

Sincerely, Sandy Corbin

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