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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by NikkiT2 on November 13, 2006, at 5:33:09
how do you cope with intense pain?
I'm not coping.. I am failing to pull myself together and cope.. and, I'm falling back on old coping mechanisms that are not healthy for my mind..
I'm fed up of trying to reach out to my best friend RT (real-time.. ie, not online - though welive a couple of hundred miles apart now, so its mainly conducted online these days), saying "hun, I don't know how I can get through today" and her replying with one line of vague support and then half a page about her new damned boyfriend.. I'm happy for her, he's a good man.. but.. last friday I truly felt that suicide was my only option.. I was trying to tell her this, but all she seemed to hear was "oh, tell me more inane details about how many hours you have spent on the phone to said man again". I ended up having to grab my bag and walk out of the house as I was scared to be alone..
I'm too scared to tell doctors I am feeling this desperate about it.. My lovely diagnoses of BPD means I will simply be written off as attention seeking, or drug seeking or something.. When I broke down in tears about it, one doctor suggested referring me back to a pdoc. No, I need pain relief, not a 6 month wait to see a psychiatrist..
One of the pain killers has caused rally really terrible gastro problems.. I explain that I need a change of medication, that I am desperate for it.. so she refers me to a gastroenterology consultant..
NO.. I need a pain specialist who can see me before next March.
The pain is too high for me to be able to meditate it easier.. to sleep it easier.. to focus on anything else.. My work is suffering badly.
someone just stop the pain for a little while for me..
please?
Posted by NikkiT2 on November 13, 2006, at 5:54:40
In reply to when pain relief is not working.., posted by NikkiT2 on November 13, 2006, at 5:33:09
Posted by Dinah on November 13, 2006, at 8:22:55
In reply to when pain relief is not working.., posted by NikkiT2 on November 13, 2006, at 5:33:09
((((Nikki))))
Please don't be afraid to be an advocate for yourself just because of your medical history. In fact, you know that better than anyone. I know that it's hard to stand up for yourself and fight for what you need when you're feeling rotten. But it's so important to do that you need to do it, or have your husband help you do it, or a friend or relative.
You have a legitimate medical condition that needs pain relief. You shouldn't be ashamed of asking for it, or telling your doctors how it's making you feel or what you're thinking of doing. If they see it as attention seeking, it's their mistake, not yours. It's your job to be honest with them.
Although again, I know how hard that is to do. And how discouraging it is when nothing gets done even if you do say something.
Nikki, I'm as constitutionally unsuited to bearing chronic pain as anyone, but I do think you should hang in there for now, and keep trying to find someone who'll help you.
Posted by NikkiT2 on November 13, 2006, at 8:32:50
In reply to Re: when pain relief is not working.. » NikkiT2, posted by Dinah on November 13, 2006, at 8:22:55
Well, the doctors have decided all they will offer me now is anti inflammatories.
I have to wait for the appointment with the pain doctor in March for anything stronger.
Its now 13 years since I first saw a doctor for this.
I'm just down right tired of fighting for decent treatment.. I don't have the time or energy. And I don't have the friends or loved ones who want to support me in it either.. I'm only any use if I am fighting for them, advocating for them. I doubt any of my family could even find the flat I live in. I'm only any use when supporting them.
I've kind of had it you know.. once and for all.
Posted by Dinah on November 13, 2006, at 8:42:31
In reply to Re: when pain relief is not working.. » Dinah, posted by NikkiT2 on November 13, 2006, at 8:32:50
((((Nikki))))
March is inexcusable. :( I guess the cost is prohibitive for private doctors? Can you ask that you be notified of any last minute cancellations? That's how I got to see my headache neurologist within her six month waiting list.
I suppose emergency rooms are no better?
I know it's asking a lot, but please try to hold on until you see the pain doctor. Pain doctors tend to be a lot more understanding of what their patients are going through since they see it daily, and also since they must be sympathetic or they wouldn't have chosen that specialty, right?
I know that March seems light years off right now. Is there any way to break off the time chunks into smaller ones to get through?
I know that Babble isn't the same as someone real life holding you. But if you can think of any way we can help, please let me know.
Posted by Declan on November 14, 2006, at 12:41:03
In reply to Re: when pain relief is not working.. » NikkiT2, posted by Dinah on November 13, 2006, at 8:42:31
You weren't on a Fentanyl patch, Nicki?
When I have bearable sciatica I'm inclined to regard it as being good for my spirit (I am not my pain), but it doesn't need to be that much stronger for the pain to be simply disabling, and an emotional burden as well. The problem with opiates is tolerance (of course!) and getting them at all. Pain is easier to bear if there is some respite from it.
Posted by NikkiT2 on November 15, 2006, at 4:07:41
In reply to Re: when pain relief is not working.., posted by Declan on November 14, 2006, at 12:41:03
I no longer feel like the pain is good for my spirit.. infact, its getting to the point where it is very very bad for my spirit. Bad for my spirit, for my career, for my life, for my marriage..
I was on the 12 fentanyl patches, the a diffrent doc refused to prescribe me any more.. but then I saw old doc again yesterday and she has put me up to 25mcg patches..
I put my first one on last night (about 12 hours ago).. and today feel quite quite wierd. I think there is a reduction in pain, but my sensation loss and altered sensation is much more pronounced, and my head is all over the show!! I *have* to return to work tomorrow.. and not too sure I can face it like this..*sighs*
a holiday from this would be very very nice...
N xx
Posted by Declan on November 17, 2006, at 17:14:07
In reply to Re: when pain relief is not working.. » Declan, posted by NikkiT2 on November 15, 2006, at 4:07:41
Perhaps I was being a little facetious. But when pain comes to visit you sometimes try to find some redeeming value in it, just to pass the time.
Once I crushed the end of my finger between 2 large rocks and danced around the yard for 20 minutes.
It was kinda like a spiritual experience. I was really surprised how mental it was, surfing these waves of pain. The physical you take for granted.
Posted by Phillipa on November 17, 2006, at 21:29:48
In reply to Re: when pain relief is not working.. » NikkiT2, posted by Declan on November 17, 2006, at 17:14:07
Ouch Declan a fentanyl patch sounds a lot better to me. And please be careful with yourself. Love Phillipa
Posted by Declan on November 18, 2006, at 2:32:02
In reply to Re: when pain relief is not working.. » Declan, posted by Phillipa on November 17, 2006, at 21:29:48
Posted by NikkiT2 on November 18, 2006, at 4:37:05
In reply to Re: when pain relief is not working.. » NikkiT2, posted by Declan on November 17, 2006, at 17:14:07
I guess the problem is, the pain is 24/7.. I can't dance around 24/7..
The 25mcg patch hs definately kicked in now, and I am feeling a reduction in pain.. a couple of days of feeling quite, um, high and wibby wobbly, but that seems to be calming down now too..
Now I have the whole issue of it being fentanyl to deal with, and need to make some ~huge~ life decisions around that..
Oh joys!
Thanks by the way. you made me smile, and I like that!
Nikki xx
Posted by ClearSkies on November 18, 2006, at 23:44:31
In reply to Re: when pain relief is not working.. » Declan, posted by NikkiT2 on November 18, 2006, at 4:37:05
Nikki, has RFS been suggested as a dx? I just watched a tv show, "medical mysteries", where a dancer with nerve injuries developed a neural pain loop that persisted after her physical injury healed.
Here's a link about the condition:
http://www.rsdhope.org/Showpage.asp?PAGE_ID=82&PGCT_ID=3872Didn't know if you had seen this.
ClearSkies
Posted by NikkiT2 on November 19, 2006, at 5:28:27
In reply to Re: when pain relief is not working.. » NikkiT2, posted by ClearSkies on November 18, 2006, at 23:44:31
But treating it is so hit and miss.. The only thing that seems to have shown any real help in me is Botox, but I can't afford half my salary to pay for it!!
And none of my other docs want me to risk pregabalin.. I can't risk a break down in my mental health (though, the pain is depressing me so very very much.. but, I am finding some relief now on the fentanyl, which is great. Combined with red wine, I even sleep now!!)*sighs*
Nikki xx
Posted by ClearSkies on November 20, 2006, at 14:16:07
In reply to RSD/CRPS is my diagnoses... » ClearSkies, posted by NikkiT2 on November 19, 2006, at 5:28:27
I read about ketamine treatment at one of the RSD websites. There was a thread about it here too,
URL: http://www.dr-bob.org/babble/20050418/msgs/486025.htmlI hate to hear of you being in such distress, Nikki.
CS
Posted by notfred on December 26, 2006, at 1:49:18
In reply to RSD/CRPS is my diagnoses... » ClearSkies, posted by NikkiT2 on November 19, 2006, at 5:28:27
> But treating it is so hit and miss.. The only thing that seems to have shown any real help in me is Botox, but I can't afford half my salary to pay for it!!
>
https://www.botoxreimbursement.us/botoxstatic/reimb_support_patient_assistance.shtml
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