New and in emotional distress

[Skye83]

I've been lurking as much as my pain permits. I can see that many of you can relate to what I'm going through. I can't sit too long and can't afford a laptop-if you look at my profile, you can see a few details of my situation. I think that my emotional pain is getting the best of me. I can't afford to see the psychologist I used to see and frankly, I don't believe he really believes me either. I'm talking about the *severity* of my pain. Not only the burning and razor blades hacking at my hips and legs, but the excruciating pressure and pulling. I've read some literature that there are some persons with central pain who have the "pulling" and "gripping" sensations-to me, these are understated discriptions. I'll try to describe the sensations later when I can come up with something better. Right now, I'm just feeling so damn alone. I'm on my 3rd pain management dr. Twice, she has said "it could be worse." Last visit, when I told her the crushing was worsening, she said I needed to be stronger. I took it as meaning I had some sort of character defect. Tomorrow, I'm taking my minister, who's also a friend, with me, as an advocate. Every time my dr. makes these comments, I feel invalidated and ashamed. I fight off strong feelings of slitting my wrists every time I get home after an office visit. My husband has never spoken up to my doctors-that I'm worsening, can do less and less, can't even manage a day trip. It's too painful to sit up or even tolerate the vibrations of the car. I'll have to make a separate post as to all that has been tried for my pain. SCS exacerbated the crushing. If it weren't for amitriptyline, I wouldn't be able to sleep. Setting aside medical issues, I desperately need to reach out to those who understand the emotions I'm going through, feeling ostrasized by the medical community, my family and even my local chronic pain support group. Every single one of the persons in my group gets *some* relief of some sort and not one has central pain. There is *no* way I can say to them, "it could be worse." I know how it feels to be on the receiving end of that kind of statement. And yet, on top of everything else, I feel envious they can still do far more than me. I just can't *say* it to them. So much for support there. I feel safe in finally delurking here and venting. I'm scared-I'm getting worse and no one believes me. My minister/friend is planning on helping me make the point to my doctor that I've been incredibly strong up to now and that the doctor's demeaning comments are negating my resolve to stay so. I've printed out David Berg's "How to comfort someone with central pain" and underlined some key points that put into words how I feel. I'm taking that to the doctor, too. I fear that the doctor may become defensive and tell me to get another doctor. That hasn't happened yet, so by posting to you all my current situation, I feel I have a safety net of some sort if things don't go well Thurs the 20th. I have to talk about this to people who understand. Thanks for reading. I've learned a lot from this group and I hope I can give back eventually.

[teena]

Hi!

First let me say that you are NOT alone!!!

And let me also tell you that you should NOT feel ashamed because of your pain. I am glad your Minister plans to go with you to your Dr. I have heard the comment that there's strength in numbers! >>smile<<

Your pain is YOUR pain, and can't be compared to anyone elses. Only YOU and God know the extent of your pain...

Personally, I hope you get some relief soon! You remind me of a lot of people on this forum who battle central pain every day...

Better days ahead, Skye...and God bless!

Teena

PS...if you want to email me, please do...I'm at heartscriber@excite.com but I won't be checking my email again until tomorrow...

[alan]

I've got the pulling and gripping sensations (among others, including burning), and you're right, those words don't adequately describe what we're feeling.

Day trip? Nowadays, getting away from home for a couple of hours is a major achievement, and I'm rarely feel up to doing even that.

[ptamom]

Hope your appointment goes well with your friend/advocate. Sometimes we all need a little support, and I hope that you get the help that you desperately need. I too suffer from central pain...but not anywhere near what you and Alan describe. I still get out almost any time I want...but somedays put me in bed. Reading others posts about their pain has put mine in perspective...and I can deal with it alot better. I wish you well with your search for relief, and thank you and Alan for sharing your "pain" with the rest of us. Please let us know how things have gone for you.

[Skye83]

Dear Teena, Alan and ptamom:Thanks for responding to my post. I have a migraine now, so will keep this short. Sometimes just typing out my thoughts helps the headache, so here goes.

My visit was a disaster in one respect, a blessing in another. I fired my doctor. When I simply tried to bring up the subject of how I felt when she would make remarks like "it could be worse,", she got very defensive, started off on a litany of all the things (medically) she had done for me, told me my pain was intractable (duh!), and that I had taken more of her time than any other patient. Excuse me-I didn't realize I was such an albatross. She said she had patients younger than me, paralyzed and spastic. I should realize how lucky I am. (Yeah, today, just getting ready to see her, being driven over there and then getting home, was a BIG ordeal for my body. I'm soooo lucky.) I do not have visible signs of pain, except for the lopsided way I sit. How can one get it across to some people who aren't interested in how central pain feels? I don't know whether she will take the time to read David Berg's "How to Comfort Someone with Central Pain." I found out I was the only central pain patient she has (or had). My minister/friend was very helpful sorting out what the dr had said because in the middle of all this I started crying. Damn, I hate when that happens (the crying.) But at least, I had an objective person with me who totally agreed that my dr. was trying to dump me and that she (the doctor) had no interest in the emotional aspects of our relationship. Even tho I feel crummy now, I guess it will pass. I already have an appt 3 weeks from now with another pain dr on the other side of town (drawback), but more compassionate. (I consulted with her once earlier this year.)

Alan, thanks for telling me you have the same gripping and pulling. I haven't found many others who have this component. Mainly, it's the burning and razor blades I hear about. Do you think the gripping/pulling is more agonizing? For me, it is. It's almost what I can only imagine as a gigantic boa constrictor with razor blades twisting the lower half of my body off. Sometimes, I wonder if it doesn't relate to spasticity in some way. I say that because twice I have had an intrathecal baclofen trial and after I got home, I realized that the baclofen had helped. Once I missed an oral baclofen dose and the crushing was off the charts by 10pm. Almost went to the ER when my husband noted I had missed the baclofen.

Anyway, I appreciate the support here and I'll start participating more instead of lurking. If any doctors read this board, I hope they will know how their judgemental words can hurt. Also, for any doctors, I have noted IV Versed helped my central pain at least 50%, more than 8 hrs after the IV was stopped. I have heard intrathecal Versed trials are starting for central pain. Unfortunately, I don't have a pump in place to try it.

[alan]

Firing your doctor was the right move. Finding a good, compassionate pain doctor. was a good move.

I don't bother comparing the pulling with the burning. Both are bad. The pulling across my shoulder blades limits my use of my arms, the burning of my abdomen interferes with eating and breathing.

Are you a para or a quad?

[whiterabbit11]

Skye, Alan and friends,
Congrats on canning the doctor. the "take it like a man" assholes have no business being called Doctor. Alan's heard enough of my bitching to know how I feel about them. You can spot the phonies when they walk in the door looking smug and not listening to a word you say. I've caught them in lie after lie because so many think you're brain dead. They can fool the run of the mill patient and become well respected by dazzling them with B.S. A lot of them get more concerned acting assoon as they know you're looking for new blood. It took me an entire week to get it through my ex-docs head that I really didn't want him around. He was my Dr. for 4 years and when I asked for my records he had 20 whole pages mostly bad-mouthing me while during the 4 years all he did was tell me what a joy of a patient I was and what respect he had for my accomplishments. I first caught onto his crap when he told me thatI got osteomyelitis in a 2 week period after he discharged me. He said I took poor care of myself over this 2 week period causing my hip to rot away. I could go on and on but once I finally found a compassionate caring Dr. I felt better emotionally and physically. Now she quit to have time with her kids-can't blame her for that. I don't think I've got neuropathic pain, but my scoliosis is causing real bad side pain. I've broken 6 ribs on that side and I fear I've done it again and my shoulder is worse every day. I finally get to see a specialist tomorrow so I'm praying he can keep me going. The psych. pain is just as bad when there are damn few people you can talk to. Don't you love the comments you get when you mention it to the well meaning ,but dense AB who says "I know just what you're going through, mine feels the same way whenever it rains" or "I was in one of those (WC's) for 2 months, but I was determined to get out out of it and my sheer grit made me walk again." Well I gotta go, talk to you guys later. WR

[whiterabbit11]

I know I do a lot of blabbing, but I forgot to mention what may have been similar to the gripping feeling I got fromspasms that nearly twisted me into knots, thhen let go for a couple seconds and the same thing> My baclofen pump stopped them. I know Alan said he had intrathecal injections w/o relief but maybe they'll work on Skye, correct me if I'm wrong Alan.WR

[teena]

By telling your Dr. to take a hike, you have given yourself a new start...and I hope all goes well!

Take care!

Teena

[TD]

By even pain specialists. My Neurologist believes I have a "graphic" description so I will share it with you.

The next time your hand or foot goes to sleep, take a large spoon and start wacking it. At the same time have someone begin pulling on it with gloves covered with cement. This is how my whole body feels 24/7.

I call these the burning tingles which is a woefully inadequate description as you know. There is a member here who used to have a website called painonline. The website had the most comprehensive explanation of central pain I have ever come across. There is a new website, www.pain.com (http://www.pain.com) , which has some excellent material as well. I have found some interesting articles in their pain library. Here a link to the search screen

http://www.pain.com/library/librarysearch.cfm

search under the articles for central pain. I found nine articles that cover the subject. It is a bit heavy reading but you may find a few interesting tidbits and your pain specialist may not have read them.

Keep us updated on how things go.

"And so it begins."

[alan]

You remember right - intrathecal baclofen did nothin for me. Everybody's different, though.

Scoliosis is another problem I could do without. I hate feeling, looking, and being lopsided!

[Skye83]

I just wanted to thank you for your reply and great description of your "pain". ("Pain" is just an understatement, in my opinion.) I'm sorry to hear you have it all over your body. My central pain is the lower half, tho more and more, I'm waking up with my arms burning. So it could be spreading.

David Berg is the moderator of this site and if you click on his name, you can see the link to his outstanding central pain site. It's still there (painonline) and I've printed out many a copy of articles to take to doctors.

I've also been to pain.com, but I appreciate your reminder because I haven't looked lately at their archives.

I can certainly see I'm not alone and it sounds like there are some people like you and Alan who have central pain more extensively. My heart goes out to you. I continue to hold on to the hope that research will yield help for all of us, tho I know it won't be tomorrow.

[antiquity]

Welcome Skye and thank you for sharing your experiences.

[calico]

Skye, of all the suffering we've had, the absolute icing on the cake, the coupe de grace, the pinnacle, is suffering the doctor fools with their analytic judgements regarding which of their patients is suffering more. If there's one thing in life that only we can define for ourselves it is how much we are suffering and the extent to which it is affecting us. It is nothing but extreme arrogance for THEM to tell YOU WHAT you are experiencing and HOW it should affect YOU.

When this whole mess started, I had the silly-assed misconception that doctors were professionals who were working for me. This was the reality in my line of work - I had clients and I worked for them. Maintaining this attitude is a bare-bones necessity to stay in business, and at a far more basic level, MY MOM TAUGHT ME TO BE POLITE AND RESPECTFUL TO PEOPLE. I don't give a rat's ass what kinds of pressures and demands medical school and practice puts upon them. If they've lost their basic human compassion and manners along the way IT'S TIME TO FIND ANOTHER LINE OF WORK. We shouldn't be praising Allah and kissing the ground when we stumble upon a doctor who meets this MINIMUM COMPETENCY. They SHOULD BE common as dirt.

I refer you to the best explanation of suffering and its effects that I've ever read:

Go to www.thelancet.com (http://www.thelancet.com)
Search for this article by C. Richard Chapman and Jonathan Gavrin:

"Suffering: the contributions of persistent pain"

The article will be listed several times and some of the listings will say "FREE" next to them. You'll be able to access these.

Another old but true saying: "You can't make a silk purse out of a sow's ear". So if what you have is a doctor made of pig-parts, don't bother trying to convert them. Don't feel disappointed when they're dumb as a bunch of rocks. MOVE ON.

Calico