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Old 11-11-2009, 09:40 PM   #1
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a difficult question...

Hello all, I have question that has me in a quandry and would love some insight. I am on a waiting list for pain management, the wait is 10 months long and I have 5 left to wait to get in. I have peripheral neuropathy and have been through so many medications to help the burning pain and numbness. One of the medications I tried was Cymbalta. I found a little relief at first and was quickly moved up from 30 mg to 60 mg daily. I remained at this level for 4 months. Then I found out that our medical insurance would no longer cover the cost and it would be a cost of $245 a month, something I can not afford. So I weaned myself off of it. I have to say that was the scariest time of my life. For 7 weeks I could not eat, I couldn't read more than a few words at a time, I couldn't focus to drive and was so dizzy, I was scared to leave the house. I swore I would never take this medication again.

The problem is that my gp is insisting I take it again as she feels it will help me with the pain levels. I am on 6 Tylenol3's /day for the pain, which really do not help but that is all she is comfortable prescribing. My last 2 appointments for refills of the Tylenol 3's she has argued with me about taking this Cymbalta again saying that I am foolish to worry about the withdrawal symptoms. My last appointment I emphatically said no to Cymbalta and she was upset, saying that she is trying to help me and now I won't accept her help. I told her that I could not afford it and that was that. Well today I have a message from her saying that she has spoken with the Cymbalta rep and has 6 weeks free worth of Cymbalta waiting for me in her office and that we will work on trying to get my insurance to pay for it after the 6 weeks supply is done.

I am so upset as I don't know how to handle this. Does it look like I only want narcotics? I absolutely would be over the moon if something like an NSAID or an antidepressant helped with the nerve pain, but they don't. I have tried Gabapentin, Lyrica, Neurontin, Topamax, and several other anti seizure and anti depressant medications.

Pain management was at the order of both my rheumatologist and the neurologist. What will happen to my care if I refuse to take the medications offered?

I am sorry that this is so long, thank you so much for taking the time to read it. If you have any suggestions on how I approach this, please, please let me know.
Sincerely,Daisy

 
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Old 11-11-2009, 10:52 PM   #2
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Re: a difficult question...

Quote:
Originally Posted by daisymaegrif View Post
The problem is that my gp is insisting I take it again as she feels it will help me with the pain levels. I am on 6 Tylenol3's /day for the pain, which really do not help but that is all she is comfortable prescribing. My last 2 appointments for refills of the Tylenol 3's she has argued with me about taking this Cymbalta again saying that I am foolish to worry about the withdrawal symptoms. My last appointment I emphatically said no to Cymbalta and she was upset, saying that she is trying to help me and now I won't accept her help. I told her that I could not afford it and that was that. Well today I have a message from her saying that she has spoken with the Cymbalta rep and has 6 weeks free worth of Cymbalta waiting for me in her office and that we will work on trying to get my insurance to pay for it after the 6 weeks supply is done.

I am so upset as I don't know how to handle this. Does it look like I only want narcotics? I absolutely would be over the moon if something like an NSAID or an antidepressant helped with the nerve pain, but they don't. I have tried Gabapentin, Lyrica, Neurontin, Topamax, and several other anti seizure and anti depressant medications.
To me it doesn't look like you only want narcotics. We have all been there. You are just trying to find something to get rid of the pain. Over he past 3 years I have tried alot of different pain, nerve and muscle meds. One may work for one person and not for the other.

It does seem like your doctor is trying to help you. She went the extra mile and spoke to the Cymbala rep and got you 6 weeks free. If it helps you then in my opinion you should try it. If you have to go off it again, maybe the Dr. could give you something where the withdrawal would not be so bad. It sounds like you went off it last time without your doctor knowing. Not sure if I read that right. I had a Narcolepsy med named Provigil that I took years ago. I was up to 1200mg per day. My prescription plan would not cover it. Every few months the doctor would fill out a form and then it was covered. At the time there was no generic so nothing else to take.

Hope this helps a little.

 
Old 11-12-2009, 02:16 PM   #3
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Re: a difficult question...

Thank you so much hessie28 for responding. You have put this in a new light for me. While I was convinced she just wouldn't listen to me about my reluctance to take Cymbalta, you have made me think that she really does have my best interests at heart by going the extra mile and getting some free samples for a drug that she thinks is worth a second try.
My neurologist did know that I was tapering off it because if the cost, but his taper schedule was pretty quick-two weeks. I suffered so much that I am so scared to take it again.
Thank you so much for your thoughts. What you say makes sense. I am still unsure of what to do, but I now I see it differently.
Cheers, Daisy

 
Old 11-12-2009, 03:15 PM   #4
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Re: a difficult question...

Why are you on a waiting list for PM? Why do you have to wait for 10 months, I don't understand that. I mean if you're in pain, why do you need to be on a list?

 
Old 11-12-2009, 03:51 PM   #5
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Re: a difficult question...

Hi, I live in British Columbia, Canada and in one of the biggest cities, Vancouver. We only have one hospital that has a Pain Management Clinic and the wait list is 10 months. Hard to believe I know. There is a 2 week in house stay where you are evaluated or you can be seen as an out patient. I think it criminal to make people wait in pain, but our system seems to be crumbling. We can't pay privately to get help faster. We just have to wait and hope we make it.

 
Old 11-12-2009, 04:00 PM   #6
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Re: a difficult question...

OK, now I get it. Wow, I thought the health care was screwed up in the US! But here money talks and there are pain management doctors. You might have to wait a month or two to get an initial visit but that's about it. I was lucky and my friend's wife is a nurse at a local hospital, she knew someone and they got me in to see my doctor very quickly, I think it was within a couple of days. Good luck, I hope you can get some relief soon.

 
Old 11-19-2009, 11:27 AM   #7
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Re: a difficult question...

Oh my goodness! I am so sorry. The only thing I can say and you probably don't want to hear this is that most of us with any kind of chronic pain or nerve pain are put on Cymbalta or Effexor, I went through a nightmare on Effexor so never never try that one. I am on Cymbalta 40, I was on 60 neither one honestly does me any good but lowering my sex drive. Great. One thing I will tell you some of this with the doctor is you have to be willing to meet in the middle, you don't want her to stop writing the scrips for the tylenol I know they don't help you say but I bet they help more than you realize. I am not trying to be mean but it does sound like your doctor is trying to help you I have NEVER had a doctor call me to try to help with any meds. I know the wait to the pain clinic is unbearable I have been there counting the months which go on like forever. I wish you the best that it is a great pain center isn't there another one that could see you in the meantime. I know you also don't like the Cymbalta but maybe she would up you to Lortabe if you agree to go back on. Take it every 2 days you shouldn't withdrawl and it will keep it in your system and it should get you to your PM appt. Now after you are out see if she can help you again get more free or send you to a psyc doctor who always has free sample only of 60 though. I can get through a couple days between doses but it is ALWAYS best to take it every day or it may make you hinky!
I am just trying to help, working with the doctors is like a game it isn't supposed to be but it is. You want her to help you at all you have to do what she wants. You'll get there but it is a pain in the butt. That or find another regular doctor till you PM appt. THat willl only give you pain meds but it is highlly unlikely they won't want you to be on an anti-depressant. I hate it too, but if I refused it I know I wouldn't get my monthly meds and the pain would just take over and wither me away. I can't eat, sleep comfortably. I still don't have my pain under control, but am grateful I have something. I need more per day than I am getting. I am thinking of switching but scared it might be worse if I do. Anyway, that's my problem I wish you the best and try to get through alll this with what you want to do and don't let them dictate but they hold the cards for us which stinks. I have been through the whole thing you are going through now and it will get better you will know when to fight and when to give in. I hope the PM clinic helps you feel better I really do. What is peripheral nueropathy, I have all over burning nerve pain??? They are still trying to figure out what is wrong with me.

 
Old 11-19-2009, 12:51 PM   #8
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Re: a difficult question...

Sounds to me like your doc has gone the extra mile and beyond. If she has 6 weeks of samples for you, my guess is that she will fight for your insurance to cover you with the med also, OR get more free mes for you. Cymbalta is both an antildepressant and a nerve med. There is a higher dose that she can try if you don't feel that this one is sufficient. I take this in conjunction to my Topomax and between the two of them find that I get pretty good coverage.

Personally I would give your doctor a second chance. She seems to have your best interests at heart...and should you have to go off of it again, I am sure that she can arrange a taper that will work better than the one that you just did.

goos luck...

 
Old 11-19-2009, 09:48 PM   #9
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Re: a difficult question...

I can't thank you all enough for your replies. I am truly lucky to have a caring doctor. When I read back my post, I sounded like a really ungrateful patient and that the doctor just wouldn't listen to me. Thank you all for pointing out that she did go the extra mile and now I see it in a better light.
I wish all of this pain hadn't changed me! I never used to be so cynical. I have tried so many medications, some with such terrible side effects. I guess I am really just scared.
I appreciate all of your help and wish you pain free days ahead!

 
Old 11-20-2009, 07:09 AM   #10
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Re: a difficult question...

Pain changes you, it eats away at your soul, your personality, it changes you. Pain is an evil beast (at least that's how I think of it). I've tried all the anti-depressive drugs too, (effexor, lyrica, etc) and non of them worked for me. I went and saw a PM doctor and that's what help me.

 
Old 11-28-2009, 04:00 AM   #11
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Re: a difficult question...

Hi Daisy..I am glad you are feeling better about things. I too have chronic pain and I am allergic to all antidepressants and I cannot take any NSAIDS because I have many stomach ulcers. I know our struggle with finding something that works. And each patient, as much as we have in common have our differences. This is not a cookie cutter type of thing. Sometimes my doctor would screw up his face (That confused look...lol) when I told him that Celebrex hurt my tummy. In most patients I guess that does not happen. I would not apologize for what my system does!

I wish you the very best. We do have to be our own advocates. It is hard, but coming here and receiving so much support and information helps. I am new to this site, but so very impressed with how everyone shares, offers insight and information and just simply cares.

Take care..
Madison104

 
Old 11-29-2009, 01:48 AM   #12
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Re: a difficult question...

I'm so sorry about the pain you're experiencing and the long wait for pain management. Just to let you know, I do find that I have to be on narcotics for the chronic pain I experience from my spine issues and joint pain but I also have significant nerve pain, which I do find I have to take Neurontin for. I understand you have already and tried neurontin and it's not effective for you, however I think you will find (even once you are finally seen by a pain management Doctor) that you will need to be on a medication that targets nerve pain. And maybe that is what your Doctor is trying to point out - for me the narcotics do not touch my nerve pain.

I think though it will really help once you're on effective pain management - they will find on a balance and really work with you to ensure you're on the right narcotics and the right medication that will target your nerve pain. I'm so sorry about the long wait getting in to see a pain management Doctor. I do understand what pain does to you, I know before I was on effective pain management, everyday was a struggle - just getting out of bed seemed like so much work and it really effected my attitude and outlook.

Have you decided anything one way or another on the Cymbalta? Keep us posted on how you're doing. My concern about the Cymbalta is it sounds like you had a bad reaction to it when you were on it before? What does your Doctor say about the reaction you had to it the PREVIOUS time you were on it?


You're in my thoughts.

~ Fiona Jo
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Last edited by Fiona_Jo; 11-29-2009 at 01:51 AM.

 
Old 12-01-2009, 04:07 PM   #13
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Re: a difficult question...

Hello Madison and Fiona Jo, thanks you so much for your kind words and support.

I did pick up the 6 week supply of Cymbalta from my doctor with the promise that I will think about the benefits and drawbacks, and then make a decision. I have an appointment with a neurologist who specializes in small fiber neuropathy on Thursday and would like to talk to her before I start the medication to see what her opinion is.

My withdrawal was so frightening from Cymbalta the first time, brain zaps that left me scared to leave the house, dizziness and an inability to read or sleep. I am really reluctant to give this drug another go. My gp says that I shouldn't let the withdrawals stop me from taking something that may be beneficial and that we would deal with the wd when the time came. I am still hesitant, but do not want to make anyone that is trying to help me upset. I just really don't feel that there was very much relief from the nerve pain with Cymbalta. Unfortunately that has been my experience with all of the anti epileptics, anti depressants and anticonvulsants I have tried so far. Nothing relieves the burning shooting pains and the never ending vibrations in my feet, along with no temperature sensation or the ability to figure out where my feet are so I don't trip. Thus both my Rheumatologist and Neurologist have labelled me " medication intolerant". It is hard not to get discouraged!

I thank you all for your replies!
Best wishes to all!
Daisy

 
Old 12-01-2009, 08:13 PM   #14
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Re: a difficult question...

Quote:
Originally Posted by dmarcus48 View Post
Pain changes you, it eats away at your soul, your personality, it changes you. Pain is an evil beast (at least that's how I think of it). I've tried all the anti-depressive drugs too, (effexor, lyrica, etc) and non of them worked for me. I went and saw a PM doctor and that's what help me.
I couldn't agree more! Marcus is so right....CP changes you....Forever. IMHO, once one has exhausted all the traditional therapies and possibilities, it's time to explore the use of LT narcotics. Although not perfect by any means, they do offer millions of people the opportunity to live with dignity.

Regards,

Ex

 
Old 12-11-2009, 06:32 PM   #15
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Re: a difficult question...

There is SO much information on the internet about Cymbalta withdrawal, including comments that it is worse than coming off heroin, that I do not believe you are unreasonable. I think that not all physicians have really gotten this yet. They think it's being exaggerated or the patient in over-blowing the extent of it to get narcotics, but you and I know, this is not the case. I would never, ever take Cymbalta after googling "Cymbalta withdrawal" and reading astounded for two hours. So, I'm with you. The doctor may have good intentions but she is uninformed on this medication.

 
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