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feeling discouraged and frustrated about pain and fatigue

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Posted 10/19/2009 7:45 PM (GMT 0)
I don't mean to whine and I try not to post threads like this, but I really need to vent to people that understand.

I just had 50 people over yesterday for my sons birthday. I am so worn down no matter what i do for myself.
My husband has also been less than his usual supportive self. I got a disabled parking permit and i was so happy and greatful but hubby kinda poked fun at me.
He made some comment like your not really disabled. Its the same thing with using a cane. He pokes fun at me and says you are really not going to use THAT are you?? It makes me feel self
concious and embarrassed.

My
body cant take too much more. My mind cant take too much more pain. I am on a fentanyl patch and oxycodone and I dont think the oxycodone is working all that well. /I have a pm appt tomorrow but they scare me and i am afraid to say anything.

thanks for your support and advice.
Posted 10/19/2009 9:20 PM (GMT 0)
merrygirl

First off don't be afraid to talk to your PM, tell him the truth about your pain, and how it is not being effectively treated, let him/her figure out what to do about it! But do let him know that you are still in pain! Give a many details about it as possible, who, what, when, where, and why, anything and everything that might be of help to him, so he can better understand what you are going through!

Next thing I know exactly what you are going through with using the cain and the handicap parking pass! At my youngest daughters wedding I brought a really nice special cain to use when I walked her down the aisle. One of my "outlaws" ( my brother inlaw) said to me just before the wedding " you aren't going to walk her down with that cain are you? You don't need that! Your not a old man!) I was so mad at him, such a jerk! it runs in all my outlaws I think! Yes I did use my cain when I walked her down the aisle! My wife and kids use to razz me about the handicap parking pass. I use to tell them if they did not like it I could go to the back of the parking lot and let them off, and then they could walk up and I would then go park in the handicap space and I would be inside waiting for them. Since the pass was not for them anyway but for me. Funny they never wanted me to do that!
It is Ok to vent your frustrations merrygirl, we understand! all to well!

White Beard

P.S. We all over do it from time to time, and we always pay for it afterwards,  Your just being a good mom and being human!  Can't fault you for that! smilewinkgrin

Posted 10/19/2009 9:35 PM (GMT 0)
Merrygirl,

Boy do I understand the feeling of being scared of your PM doctor!! I had one several years ago that was a complete jerk. He never listened to me, told me to go the ER if I was in that much pain, and would sometimes decide I dont need anymore pain meds and give me a very small amout of my pain meds and tell me to taper off and then a few months later represcribe my pain meds back to me just for the heck of it. It never made sence to me, it was like the more I complained about my pain, the more he would take me off of the meds, but the less I complained he would give me more. And he use to love to call me fat, I am 5'6 and weigh 150lbs, I may not be a supermodel, but I am far form being fat, he even asked me if I was pregnant once, and I have no belly!!!!

I could only take so much of this doctor, every time I went to an appoitnment I would make myself sick with the anxiety and have panic attacks. But it was hard cause he's the only the PM doctor around that took medicaid so I was forced to put up with im, but then one day I had enough and decided to never go back and that was the best choice I ever made.

You would think that most PM doctors should know when your in more pain, but some of them out there just dont care and I think they think it's funny to watch us suffer and that way we dont bother them as much. But it's jsut so hard with PM doctors dissapearing like crazy cause of them being scared of DEA and the ones who are around are almost impossible to get into.

-Carmen
Posted 10/20/2009 12:45 AM (GMT 0)
for your support guys. I dont feel as bad about my situation tonight I have a bad problem with fatigue and pain and in the afternoons I have a real hard time getting through. I just wish my husband realized that I am not ok. I dont want to have to tell him all ths are time that I am not in pain and exhausted. Its really frustrating. I feel like no one understands me. My pain docs are generally nice, but very serious and i always worry I am going to say the wrong thing.

I have an appointment in the morning so maybe they can offer something new, I did trigger point injectioins last week, and I think it sent me into an awful flare.
Posted 10/20/2009 1:09 AM (GMT 0)
I think b/c my challenges are not obvious physically, people have a hard time comprehending the seriousness of my problems. I too, have a handicapped placard and have been approached by some in parking lots that have questioned my legitimacy--I usually try to come up with something shocking and outlandish to tell them or a really, really bizarre thing that's happen to me medically that makes their face wince--bowel diseases are good for that. Sometimes if I'm extra cantankerous I will throw in that I was a pretty healthy person one day and boom, sick, and then a slow decline ever sense--freaks people out that they too can get sick some day. I don't know what my point is, but I just don't think anyone can really understand what any one of us is going through. Dark humor gets me through.
Posted 10/20/2009 10:06 AM (GMT 0)
I feel for you Merrygirl. I have to go to my PM today and let him know that my meds aren't cutting it and that the pain keeps progressing. My husband is supportive and tells me not to do anything but who will do it. He works all day and I feel bad if he has to come home and work again, it's not fair to him either. Also, with CP we need to get up and move, can't just sit in the recliner all day or the stiffness gets worse. You had a busy day yesterday with the party so do try to take it easy for a couple of days. I did some painting last week and am still paying for it.
Good Luck!!
Posted 10/20/2009 2:14 PM (GMT 0)
Merrygirl..

((((((gentle hugs))))))

I felt the same way until last Thursday.  I have had an increase in pain slowly over the last month.  My pain procedures were wearing off.  I ended up in the hospital two weeks ago with extreme pain.  I went to my pain doc and told him about the trip to the ER.  I just wanted to know how I was to get an emergency appointment when I'm passing a stone or tissue.  He sat there and thought about it for a few minutes.

To my surprise he was trying to think of an emergency stash for me.  He up'd my perc 10's from 120 a month to 135 for emergencies.  Told me to use them wisely.

So don't feel scared.  The doctor is their to treat you and your pain.  If he or she is a good doctor they will listen and have some compassion.  Be very honest with your doctor he can't treat your pain unless you tell him 110% truth of how you feel.

So sit back and take a deep breath and spill your guts.. yeah

Wish you well and keep us updated.

Laurie

 

Posted 10/21/2009 11:45 PM (GMT 0)
well thanks everyone. Its nice to know that I am here where people understand and relate.

I went to my pm and it went fine. I explained that this month had been bad and that I thought my pain control could be better. After going through all the details, Including my waking up at night now in pain... she did the following...

I can change my patch every 2 days instead of every 3. It seemed like every 3 rd day is a struggle and a bad pain day.

She gave me one more oxycodone a day to a total of 3 a day.

and she gave me a muscle relaxer called zanaflex.

OMG! the muscle relaxer worked miracles for me! I have never taken one. All the pain in my shoulder muscles and a lot of my fibro pain was gone!!!!!!!!!!! wooo hoooo!

The problem is that it was a little too strong and could not drive or do anything important. I can take it up to 3 times a day, but wont be able to.. But I am so grateful to have it and be able to take it at night. yippee.

so in the long run being honest helped me. I still find pm a scary process.

I was a little scared that I was on too much meds and wouldnt wake up from sleep, but I did and I am following directions carefully. Does anyone else worry about this or think about it??

thanks for all your advice.

hugs,
melissa
Posted 10/21/2009 11:57 PM (GMT 0)
 

   Miss Melissa,

 

     It sure is good to hear from you again! I hope things continue to improve for you! Fantastic news

 

*huggs*

  dani

Posted 10/22/2009 2:41 AM (GMT 0)
MerryGirl,
I can only take the muscle relaxer at night too (zanaflex) as it does make ya really really sleepy...
but it's also had for me to take my pain meds during the day too, I can only take 1/2 of a norco or
else, they make me too sleepy...
The muscle relaxer does help a lot, I'm glad your doctor listened to you, sounds like it was a good visit...
Hope you can get more low pain days...
lots of soft hugz...
((((((((((((((((((((((((((((((((((((((((((((((((Merry Girl))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 10/22/2009 3:13 AM (GMT 0)
I'm so pleased you got help Merry Girl, why are you scared to talk to your PM? Are they not very approachable or just too stand offish? It amazes me that some professionals are impossible to talk to. My gynae specialist is like that, I ask him a question and instead of answering he goes raving off on some tangent. I get a whole lecture about something I don't really need to know about! He is quite eccentric.
I also have to weigh up pain relief vs sleepiness if I need the stronger meds. It's not a good decision to be forced to make. But I'm really happy the muscle relaxant is working for you, best wishes, golitho
Posted 10/22/2009 10:34 AM (GMT 0)
I also started Zanaflex 2mg a month ago. It is prescribed 1-2 3Xday as needed. Mine has a score line so it can be cut in half. If I need to get things done during the day I will just take a half one to help the spasms but not make me too sleepy. Check with your doctor or pharmacist to see if you can cut yours in half. Glad to hear your feeling better!
Posted 10/22/2009 3:13 PM (GMT 0)
Melissa I'm so happy the appointment went great.  I usually feel alittle of fear but only that I make sure I follow my contract.  I fear about losing my meds if I ever did I would just curl up and die.  So you know I follow my contract to the detailed point!!!

I also take muscle relaxers and I can't even take half of one without wanting to go to sleep.  So it is a night med for me.

Your question about if any of us fear not waking up with all these meds.

YES I always tell myself which ones not to take with another.  I can't take my muscle relaxers with my klonpin because that is a mix for my respitory system to fail.  I also have to make sure if I take my sleeping meds not to take any of the others.  Its confusing but I want to live.  yeah

I also have to watch taking one of my cholesteral meds with BP meds.  The Cholestoral one will rule out the BP meds.  Sometimes I even wonder if there are anything else I need to know. smhair

Just keep us updated I always like talking with you... smilewinkgrin

Laurie

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