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Old 03-08-2010, 12:28 PM   #1
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My long awaited appointment with PM and now what???

Hello, I am from Canada and wanted to relate what has happened to me so that I can get feedback and perhaps plan a course of action.

I have suffered from extreme neuropathy for 5 years now in my feet and progressing up my legs. I have seen a Rheumatologist, 2 neurologists and after a 9 month wait, a pain clinic. There is only one pain clinic that serves our large city. I made my way to the clinic on the day of an Olympic hockey game here here as we were the host city of the 2010 Winter Olympics.

I met with a psychiatrist and a physiatrist and a medical student. They quizzed me for an hour about all of the drugs that hadn't worked in the past like the many anti depressants and anticonvulsants that are normally tried for nerve pain. I have Rheumatoid arthritis as well and it is generally accepted that my neuropathy is auto immune. My night are excrutiating and I explained my pain like it feeling like someone crushed my toes, broke both of my ankles, pored acid on them and set them on fire. It never stops, 24/7 and I have been labelled medication intolerant as nothing seems to work for me. And I also deal with the destruction of the Rheumatoid arthritis.

I was totally rushed through the appointment so that the Dr's could get to the big hockey game! One dr even took 2 personal phone calls during my hour appointment making plans about getting to the game.

They gave me a prescription for Cesamet, a drug I have already tried once before and was reluctant to take again. It is a synthetic form of marijuana that made me feel so sick. Then they told me that in 10 days my gp would get a letter from them outlining what my treatment would be and they dismissed me.

My gp called 10 days later and their plan for me was to take the Cesamet, Baclofen and a benzodiazepine, Chlonazepam. They said I could take Tylenol 3's for pain as I have been taking them for the past year. They recommended a TENS unit and a hot pepper cream to rub on my feet. I have already had all of these medications before with no reduction in my pain level at all. But I decided to give all of these another go. Now I am so sick I can't leave the house. I am so dizzy I can't walk without my cane as I fall over. I can't form sentences and think properly. Or drive a car.
Now I don't know what to do. I have done all of the medications again with the same result- I feel too sick to keep taking these medications.

My gp and the other specialists sent me to the pain clinic cause they had run out of drugs to try. Now I am right back where I started 5 years ago, with no reduction in the awful pain at all. And all of the same medications.

Does anyone have any suggestions? I am just so tired of this and now I think all of these pills make me feel very depressed about my situation. I pinned all of my hopes on this pain clinic appointment and they don't even want to see me again. They didn't tell me what to do if these pills don't work out. I am left abandoned again to my pain.

Any help would be greatly appreciated. Thanks so much for letting me vent!
Cheers,
Daisy

 
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Old 03-08-2010, 05:48 PM   #2
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Angry Re: My long awaited appointment with PM and now what???

Daisey,

I am so very sorry to hear about the "no care" you are receiving. I think this is the second post in as many days I have seen someone with neuropathy get this kind of bs. Sorry, but it makes me angry. I wish you had posted this on the "pain managment" board rather than the chronic pain sub board. I think you would get more responses.

I would tell my gp that you have had all of this exact treatment before and it didnt work and you simply must have some pain relief. I'm just the kind of gal who would go down there to the pain clinic with a sign and say"not leaving until someone helps me" Actually that is really bad advice but I don't know what to tell you. I'm not familiar with Canada's laws or health care, (congrats on the hockey game, btw)

I simply would go to my gp and cry!!! Do you have someone who could go with you?? A big burly hubby or boyfriend??

I don't mean to make light of your situation, when stress hits, I automatically go to humor.

I hope someone comes along with some good suggestions. Until they do... I am gonna say a prayer for you tonite and hope you get some much deserved pain relief sooner rather than later.

Hugs
Bullymom

 
Old 03-08-2010, 08:32 PM   #3
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Re: My long awaited appointment with PM and now what???

Thank you so much Bullymom! No one understands like the people who have been through terrible pain. Thank you so much for responding!
My gp really hasn't anymore medications to offer me, that is why the pain clinic was suggested and of course the very thing I was afraid of, the re-trying of meds already tried, came true. I am wondering if I can give these meds a fair trial (would a month be fair?)and then call the clinic and beg to be seen again. This time I will insist my husband accompany me to the appointment. He can be there to ask questions. If I can make it through the days of nausea and dizziness. And the endless nights of pain.
Thanks again!
Daisy

 
Old 03-08-2010, 10:53 PM   #4
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Re: My long awaited appointment with PM and now what???

It's really up to you if you want to re-try the same old meds again, but I wished you had taken your husband to this appt. For some reason, this seems to help. When men see us women all alone, they tend to step all over us. Please take your husband to every future appt., and tell him beforehand, that if things aren't going your way i.e.(prescribing the same old meds) that he should step in and speak up. That was so wrong the way that clinic put a game before their patient, esp. when you waited so long for this appt. I would call the clinic, explain what happened, and demand in an assertive way to be seen again. Explain that you will not take these meds again, and that you tried to explain that to them but they rushed you out. Or be seen by another pain clinic if that's an option. Good Luck!!....janiee

Last edited by janiee08; 03-08-2010 at 11:00 PM.

 
Old 03-08-2010, 11:02 PM   #5
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Re: My long awaited appointment with PM and now what???

bullymom is right-sounds like you were totally intimidated; on days i'm feeling a little non-confident I bring my husband into the exam room with me; and he backs me up when he sees me getting weak-he will say "doc you gotta do something i cant stand to see her like this" or whatever he feels he needs to say because the man lives with me and sees what i deal with-Is it possible for you too go to US pain clinc?

well my heart goes out to you- Sam

 
Old 03-09-2010, 09:12 PM   #6
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Re: My long awaited appointment with PM and now what???

Thank you so much Jainee and Sam!
Great advice! I appreciate it so much that you took the time to respond!
Seeing as I had to wait 9 months for the original appt with the pain clinic, I am hoping that I can get back in fairly quickly. And for sure I will be taking my hubby. He has seen what I go through on a daily basis.
Best wishes,
Daisy

 
Old 03-10-2010, 09:02 AM   #7
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Re: My long awaited appointment with PM and now what???

Daisy,
So sorry I didn't get back sooner. I think that your plan of trying these meds for a month and then taking hubby is fine for you to try if you think you can stand it. Not everyone has a "bully" in their personality, and I think you are of a much kinder and gentler spirit. Not everyone is comfortable with going in gang busters like I suggested. Do what you feel comfortable with sweetie. When you do return and if they completely dismiss you again. Then you will have to get in their face. If you don't you will be sent home with nothing to help you and off you go to suffer yet another month. Give your plan a try but promise me if two weeks go by and you are miserable..... Call Them!!

You are entitled to care and I can't stand it when I hear stories like this. Ultimately you are the one who has to go through those doors and tell them how you feel. I hope you get some relief very soon. Keep us posted kiddo.

Bullymom

 
Old 03-11-2010, 02:27 PM   #8
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Re: My long awaited appointment with PM and now what???

Hi Bullymom
I am so glad that you questioned me about my decision to continue with meds that make me ill. What was I thinking?? I just can't take the Cessamet, Baclofen,and the Klonopin any longer. Time to call that clinic back and see if I can get another appointment.
I don't know why I find it so difficult to fight for myself. I would let nothing stop me from getting help for any of my kids, but I am so scared that I will look like I am a pill seeker. I would be ecstatic if any of the more than 12 medications that I have tried would have helped enough to reduce the pain and agony in my feet.
This has been going on for 5 years now and I want to enjoy my life again, I want to think of something other than the pain and things I can't do. I feel loyal to my doctor of 15 years but this is a really crazy relationship. I have done everything I have been asked to do. I have taken the drugs, acupuncture, rubbed all kinds of expensive creams and potions on my feet and lost 25 lbs with no results pain-wise. I have asked point blank for something stronger than the Tylenol 3's, even just to take at night but she refuses to give me anything other than the Tylenol 3's. I do understand that she is afraid of addiction problems, but I have never been addicted to anything in my life. I don't smoke, or drink or do any other behavior that would lead her to believe I would have a problem. I never take more medication than is prescribed.
Thank you so much for letting me rant on. You have no idea how much I appreciate these boards and people like you and jainee and sam and ex for everything.
I promise I will take my husband to my appointment and not let my defense mechanism of trying to be funny and pleasant over ride my ability to get across the point that I can not spend another 5 years battling this neuropathy wiithout help. It is time to wear my "big girl" pants!
Thank so much everyone!
Best wishes,
Daisy

 
Old 03-12-2010, 05:24 PM   #9
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Re: My long awaited appointment with PM and now what???

Hey daisy,

You don't need to put on your big girl pants, YOUR DOCTOR DOES!! I feel so bad for you and I have seen this all too often. Don't be to hard on yourself and feel like a wimp, you are not. For someone to go through what you have for as long as you have is pretty dang tuff IMO. I have spent the last 37 years around many doctors and I too am more timid when it comes to my pain medication. I think most of us are. So afraid they will just stop rx for any little reason. They have allot of control over us and its sad. I know you love your doc Daisy, but you should not have to suffer like this. I think you need to tell her what you just told us... you have done everything asked of you for 15 years. If she isn't comfortable rx the meds maybe she could suggest someone who would. You hang in there. I don't know how the weather is in your area, but now here in Ky it is so damp and rainy and the weather change is killing me right now. Make your list so when you go to the doc you will remember everything to ask. Good luck and please keep us posted. After all, you are not asking for that much. With your diagnosis, I can't imagine you would have a hard time finding a doctor who would be comfortable rx more than tylenol #3.

Take care,
Bullymom

Bullymom

How far away would you have to go to vist another pain clinic? I don't know much about Canadas health care system or what restrictions they put on you.

Last edited by bullymom; 03-12-2010 at 05:30 PM.

 
Old 03-16-2010, 02:32 AM   #10
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Re: My long awaited appointment with PM and now what???

Oh canada. Hi daisey. Why are they doing it to you?. why don't they just prescribe narcotic pain meds in Canada?. how is that possible?. It's not a third world country, right? If you have been trying everything and nothing nothing help then it's time for oxycontin I guess. baclofen they give you over there?. that's nothing. this drug whould be out of the market. it does nothing for muscle pain. Doesn't clonazepam help you some with the pain??

Yes with narcotic you will need to increase the dosage. That's what they are afraid of over there in canada I guess. Even in Australia they give narcotic pain meds.

I don't know what to think of. If I was you, I would go to the pain clinic and demand oxycontin, period. If they don't give you, you should consider going to u.s pain clinic. You will need to pay though. but suffering till the rest of your life like that?. why do they give you marijuana? that's what I was afraid of. they say it's less addictive huh. easier to get off it huh. no need to increase dosage etc.

Never knew canada is afraid to prescribe narcotic. Doesn't sound too good you know.

ARe you able to sleep ok at night?

 
Old 03-16-2010, 01:21 PM   #11
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Re: My long awaited appointment with PM and now what???

Hello nochange and hi bullymom,

I am so sorry not to respond sooner- I have been under the weather with a bronchial infection.

Thanks to all of my healthboard friends advice, I did get up the courage to confront my dr about the lack of pain control. Actually I broke down last night and it really scared my husband. I have been living a life filled with pain and I could not face this for another 30 years. So with his support and all of your advice I met with my doctor and just laid it out on the line. I said that I needed something more than Tylenol 3's and that I needed to be taken seriously. THis time I wasn't going to be brushed off with more prescriptions for Tylenol 3's that did little to battle the pain. I HAD to have something to help ease this burning relentless pain. I have done all that has been asked of me regarding medications, B12 injections, acupuncture, MRI's, EMG's and still no relief from the horrific pain that I have been in for 5 years. Today the doctor has agreed to put me on a small dose of morphine. I can not tell you how relieved I am!

Things are very different in Canada about the way we look at and treat pain. At least in my part of Canada there is only one hospital that deals with our whole province and patients that need pain relief. When I went to that clinic after waiting 9 months, I was so upset because they were telling me to take the same drugs I have already tried. More anti convulsants etc. They didn't work 5 years ago so I really didn't see the point in re-trying them, but I did.
With the same results.... And it is SO difficult to get narcotics. Chronic pain is not recognized for the debilitating problem that it is.

But now I am hoping that at least I can sleep for more than 1 1/2 hours at a time, maybe I will be able to take my precious little dog for a walk, and hopefully I will be a happier wife, mom and grandma.

But without these boards and others who understand, I would never have been able to face this. You have always given good, solid and caring advice.
As I have said before, I appreciate each and everyone who has responded to my posts.
Thank you from the bottom of my heart!!!
My best wishes to all who suffer from pain, a nightmare that no one should have to endure!
I am hoping that I will see the light at the end of a very long and dark tunnel!!
Daisy

 
Old 03-16-2010, 03:42 PM   #12
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Re: My long awaited appointment with PM and now what???

DAISY!! I can not tell you how happy I am to hear they are finally listening to you. I am so very proud of you. I was afraid it was going to have to take you getting in their face in order to get some results. I can't wait to hear how you do on the morphine. I know Ex is of the opinion that it is the best pain reliever out there and I surely value her opinion. You may very well notice a considerable difference in your pain levels even with a low dose. I hope so. Anything will be better than tylenol # 3. IMHO

Keep up posted on how you are doing ok??

Congrats on standing up for yourself. I bet those big girl pants look good on you too

Bullymom

 
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