SEVERE PAIN

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Glenda2003	SEVERE PAIN	Lead	[-]
Posts: 523 (08/21/04 11:44:48) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Tags : None Sorry to burden anyone with my complaining , I just need someone to talk to before I go insane. My back pain is killing me. My feet seem swollen and they hurt to walk on. My throat feels as if I have a new tumor growing underneath it by my chin. Maybe thats just my imagination. But it feels odd. I am literally falling apart physically. All I want to do is go to bed and sleep. I am in severe pain. God help me to survive this torture that I am living thru.
out2lunch	Re: SEVERE PAIN	#1	[-]
OCPM Hall of Fame Member Posts: 4170 (08/23/04 12:55:02) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Glenda, I sure hope you're feeling much better then you were!! I know all too well, what untreated pain feels like, and wouldn't wish it on my worst enemy! Here's to better days ahead for us all, take care! you're friend
swmeg	Re: SEVERE PAIN	#2	[-]
OCPM Hall of Fame Member Posts: 5107 (08/23/04 16:09:48) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda, im so sorry that your pain levels are so high. You definetely need to see a dr who will treat your disease for the painside of it. It reminds me abit of MS at first the Drs didnt think that MS and pain were connected but they found out they were wrong. Isnt NF like that too and your dr thinks that NF has no pain but you have pain. I really think you need to see a different Dr he isnt doing anything for you . Your med doses are nothing and do nothing so that is why your in pain you need a high dose of pain killer. I went to the dr and complained today about my joints being so painful that they hardly bend i cant bend my toe joints wihtout sever pain so he doubled my artrhritis med without me even asking, why because he coudl see my pain and suffering and he knows me well, he knows i hate asking for an increase becasue i worry about my future but he also knwos that im in alot of pain and he is doing his best to keep me comfortable. That is what drs are suppose to do, keep us comfortable. There has to be a Dr that will treat your disease, you may have to travel though. but wouldnt it be worth it.Just know im praying for you girl Let your heart guide you, it whispers, so listen closely SweetMeg
Glenda2003	Re: SEVERE PAIN	#3	[-]
Posts: 523 (08/23/04 17:04:39) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Thankyou for the replys. Sadly NF cannot be treated except remove painfull tumors , if they are removable. My spinal tumors cannot be removed or i'd go paralized , and still could without surgery , just due to the fact they are on my spine. Plus the leaking spinal fluid is also dangerous for me. Alot of doctor's believe that NF is not painfull , then there are the doctor's that do know it is painfull. All the doctor's I see just put me on a LOW dose of any pain killer. They just refuse to up my dose because they don't feel that I am in THAT MUCH PAIN as I claim. I am on 5 mg's of Oxycodone , 6 tablets , 3 times aday. Sometimes I switch the dose myself and take 9 tablets twice aday. My doctor would blow a cork if he knew I do that. I cannot understand why he won't allow me to be on , say , 80 mg's 3 times aday. Even my dang Pain managment doctor is being a sob and he told his nurse to tell me he will NOT take over writing any Rx's for me. That I have to get all my med's from my primary care doctor. So why the hell go see the PM doctor ? Ticks me off. I have to see him this thursday , a 3 hour drive one way , It will be a wasted dang trip. I just want to cry because I hurt so bad and none of the doctor's I've seen want to help me. I've seen atleast 20 doctor's and they all tell me they cannot help me. Then here lately I have been feeling sick , breaking out in a cold wet sweat and am ringing wet. Feel nauseated. No it is not the flu , or menapause. I just feel like I am dying. I know that is not the case. My health is just POOR. Thankyou for all the kind wishes and suggestions.
scroogerocks	Re: SEVERE PAIN	#4	[-]
OCPM Hall of Fame Member Posts: 7003 (08/23/04 18:20:16) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda, did your doc say why he is giving you 5 mgs and having you take 6 of them at a time as opposed to taking like say two 20mg ones?? It just doesn't seem right that you are taking six of them rather than one or two of the higher dosages - drs are a strange lot!! I hope you feel better soon! Together...we can make a difference! - Pancreatic Cancer Action Network - www.pancan.org
out2lunch	Glenda & Meg	#5	[-]
OCPM Hall of Fame Member Posts: 4170 (08/24/04 08:47:47) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I certainly agree with Meg!! You need a new dr desperately, as this one just isn't doing his job!! Meg, you certainly have lucked out in the support department my friend!! From such wonderful kids, a great loving and supportive hubby and a dr that actually cares and understands what you're going through, and what he needs to do to keep you as comfortable as possible!! How I envy you girlie LOL!! I hope none of this ever changes for you, as you deserve nothing less!! I hope the increase is what you needed, and that it helps you a great deal!! ((HUGS)) take care! you're friend
Glenda2003	Re: Glenda	#6	[-]
Posts: 523 (08/24/04 10:06:15) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I have NO idea why my doctor keeps me on 5 mg tablets ! I have asked to go to 20 mg's and he say's NO. So I reroute my tablets and take 8 to 9 tablets in the morning and 8 to 9 tablets in the evening. As it all add's up to the same miligrams. He allots me 540 > 5 mg's tablets amonth. And he knows how they should be used up. And if I am afew days too soon , he knows I took them differently. Then I get yelled at and told I won't get any more at all. He Loves to upset me and make me Cry. He doesn't care that I am in pain. ( If he had My Pain he'd be on 1000mg's 4 times aday no lie.) Here the past few days I am having night sweats to where I am ringing wet all night and day. I am freezing to death. No fever. Feel nauseated. It's not the flu or anything like that. I hurt so bad it is all I can do to move my body. I am so tired I wish I could sleep 48 hours straight. There is something wrong with me and I don't know what it is. My pain managment appt. was changed to september 15th. at 11 am , from this thursday , as I am too sick to drive 3 hours to get to the pain clinic over 100 miles away. I need help so bad ! My dear husband works and is unavailable to take me to my appts. I wish I had someone to help me. God I just wanna die sometimes.
angelweezy	Re: Glenda	#7	[-]
OCPM Newbie Posts: 42 (08/24/04 10:47:16) OCPM Newbie Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda, darlin my heart is aching for you right now, I guess it is the mom in me, but even with my severe pain, when I hear of a dear friend hurting, I just want to take all your pain away and carry it myself. does the meds you take have tylenol in them? if they do I would be really concerned that this doctor is killing your liver, god I hope I am wrong, you have so much to deal with. I will keep you in my thoughts and prayers. I love you, we all need to hear that more than we do. Love and gentle hugs your way, Angelweezy
out2lunch	Glenda..	#8	[-]
OCPM Hall of Fame Member Posts: 4170 (08/24/04 12:43:24) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I'd have to say that you're feeling so rotten....freezing yet cold sweats, nausea etc. 'cause you're in so much pain and undertreated!! When I ran out of meds last wk and was going to emerg etc. I felt the same way!! I was in so much pain that I had trouble breathing and felt like I was freezing, yet I was sweating and my hands were all clammy!! I'm so worried about you, as you need a new dr desperately!! I do believe though, that your appt on Sept. 15th will go great!! That's my brother and my son's birthday LOL, and everything about them is great haha!! Seriously though, I do have a good feeling about this appt.!! Know that I'm thinking of you, and praying for you daily!! ((HUGS)) take care! you're friend
swmeg	Re: SEVERE PAIN	#9	[-]
OCPM Hall of Fame Member Posts: 5107 (08/24/04 14:48:43) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda you describe exactly how I have been feeling the past two weeks, night sweats, coldness and nausea but you left out the unbearable jointpain which im sure you have but u forgot to mention. except that im already on high doses so I cant imagine the pain you are in on such low doses. But I do know the feeling of just wanting it all to end, just roll over and let it all end the suffering. I think your Dr is an but you already know that. I wish there was something we all coudl do but it seems all we can do is be here for you to vent to us. wish it ws more im so sorry. Let your heart guide you, it whispers, so listen closely SweetMeg
Tomngrady	my heart goes out to you glenda	#10	[-]
Posts: 37 (08/25/04 09:39:38) OCPM Newbie Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	sometimes I too, seem to go through hades and high water just to get a teeeeensy bit of relief although I am so thankful I got some relief from my last spinal injection, and even cut down on the pain pills for a few days .... It seems most people build up a tolerence to any meds after awhile (not sure cause I ain't no doctor, only what I hear from others) sure hope your doctor would re-think his thinking !!! on the number of pills !! isn't it more cost effective to get a larger-dose pill? I talked to the pharmacist once and he said definitely, go with a bigger dose pill if your doc. will allow it, instead of taking a bunch of smaller dose pills. I wish you the best of luck with your old doc. or finding a new one.
Glenda2003	Re: glenda	#11	[-]
Posts: 523 (08/25/04 10:58:48) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	No I am not taking any form of tylenol. Just 5 milligrams of Oxycodone ( 6 tablets 3 times aday ). That is a piddley 30 milligrams. Not much pain relief. I am seeing the doctor on Friday (Primary care doctor ) to get the Oxycodone refilled. I will once again ask for a larger dosed tablet. He's gonna say NO though ! I take Zoloft for anxiety attacks and it has been causing me major side effects. I looked it up on the net and there is a legal law suit because of Zoloft and it's bad side effects. Some of which I expierence. I should join the class action law suit. But I don't want to get my doctor in trouble. He gave me the zoloft to help with my anxiety attacks. Although it is an anti depressant pill. I have felt real depressed and felt like I wanted to die and that is a side effect. So I am weaning myself off the damn Zoloft. I am tired of being in MAJOR PAIN and feeling sick to my stomach all the time. Then to be sweating to death day and all night long , to where my clothes are drenched. I appreciate everyone's warm wishes and suggestions. I would be lost in a cloud of fog without all of you here at the CP board. My quality of life is really poor and I just hope and pray it gets better. My poor husband is so worried about me being ill all the time. He said that I scare him really bad. He's afraid to come home from work and find me dead. ( Not self inflicted ) Just dead because of my BAD Health. I would give anything in the world to be healthy and Pain free. But sadly my life has been this way since I was a toddler. 47 years of pure torture due to my disease "NF" and all the painfull tumors. I am so ashamed of how I look. I have so many tumors all over my body , but it's the one's on my face that makes me cry and makes people stare at me and give me horrible expressional looks. Well I have babbled enough I guess. Thankyou once again for caring about me. It is appreciated greatly. Love you guy's. Glenda
gusse	Re: glenda	#12	[-]
Posts: 227 (08/25/04 23:48:36) OCPM - 100 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Glenda, I can't believe I'm suggesting this, but I just found something at a natual foods store that has helped my back pain. I have no idea how safe it is or if it could cause dependence. I am the last person who would use one of the herbal remedies, but I got desperate, too. Its main pain reliever is Kava Kava. Maybe someone out there knows something about this. There are several herbal remedies for pain of various sorts and I believe there was one for nerve pain, which must be at least part of your pain. I am only suggesting this because, like Meg said, it sounds like you need a new doctor. And it will probably take a while for you to get one. Demand a second opinion. Don't let them tell you how you should or shouldn't feel. Get your husband or someone else close to you to go with you. That always helps me be more assertive. I am so sorry you are suffering. ((((((((((((hugs)))))))))))) gusse
Glenda2003	Re: glenda	#13	[-]
Posts: 523 (08/26/04 09:39:06) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Thankyou for the suggestions , I have gone thru GNC and even bought their book about what you can take for what disorder. I have tried so many GNC products that supposidly relieve Pain and sadly they just don't work for the Pain that I have from all these damn tumors growing on my spine. I am in so much extrme PAIN that I feel as if I was beat by an axe and cut to pieces. Oh lord how I hurt. I just want to scream out in pure agony. I am sorry to burden anyone here with my continued complaining , please forgive me.
free2b sandy	Re: SEVERE PAIN	#14	[-]
Posts: 1 (08/26/04 14:21:46) OCPM Newbie Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Hi Glenda this is Sandy! It is possible to have a tumor there, remember I have one behind my throat, and most of the time I can't even swallow. The Drs won't remove it, and the one on my neck by my brain stem, u know, the plexi? They waited to long, and now the brain stem is wrapped around by the carotoid.....did I say that right? the carotoid artery is wrapped around the brain stem is what I wanted to say. This is a cool board, thanks for letting me know about it, now I know where to go when I feel all alone and no one understands, but I know u do, and that really makes all the difference in the world. I'll try to come on at the same time as u, and we can chat. My neck and back hurt so much after sitting here a bit, but I wanted to let u know, I'll be back, and I feel the same as u do, 11+ on a pain scale of 1-10. Well, I think I will go for awhile and if there is anyone out there who can help us, that would be great, our Drs won't or can't or whatever, and u can vent to me anytime u want, so I will try to start coming here more!!
out2lunch	Re: SEVERE PAIN	#15	[-]
OCPM Hall of Fame Member Posts: 4170 (08/26/04 15:23:57) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda, sweetheart, there's absolutely nothing to forgive you for, or for you to be apologizing!! We're all here for eachother, and that includes YOU!! We all just wish that we had some concrete answers for you, so you can acquire SOME pain relief!! Your dr's just being so unfair and inhumane! I certainly hope that when you do find a new dr, you report this !! ((HUGS)) hun, wish there was more I could do....but I'm here!! you're friend
out2lunch	Sandy....	#16	[-]
OCPM Hall of Fame Member Posts: 4170 (08/26/04 15:47:39) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Sandy!!! I'm so sorry that you're in so much pain and having to deal with idiotic drs too! CP life, just simply SUCKS, wouldn't you say?? I'm glad to hear that "you'll be back", as we all would like to get to know and chat with you!! You couldn't have found a better forum, with warmer, more caring and understanding people, then OCPM!!((HUGS)) take care! you're friend
wiggles 1325	Re: SEVERE PAIN	#17	[-]
Posts: 6 (08/27/04 07:07:27) OCPM Newbie Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Sorry to here about your pain hope you feel better. its weird my son had to go to hospital because he had a kidney stones and the Dr. he had said he knows how he feels wrote for pain meds strong ones and treated him like a king I am glad because I know it hurts but it was all because the Dr, had the same thing . I know it is wrong to think this way but I wish my doctor had what i have for at lest 2 weeks so he can feel the pain I have to go through every day . alwaysmile wiggles
Glenda2003	Re: SANDY	#18	[-]
Posts: 523 (08/27/04 08:56:35) OCPM - 500 Club Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	I am so glad you made it to the chronic Pain board. Everyone here is great. I would love to introduce my friend Sandy everyone , she also suffers from Neurofibromatosis. She is in Severe pain like I am from hundreds of tumors thru out her body as well. Love ya Sandy , well look forward to seeing you post again. Glenda
out2lunch	Wiggles...	#19	[-]
OCPM Hall of Fame Member Posts: 4170 (08/27/04 10:12:42) OCPM Hall of Fame Member&OCPM Forum Host Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Having a dr that also suffers with some form of cp, doesn't always work LOLOL!! I thought the same as you, when my dr was diagnosed with Chrone's Disease, but it didn't turn out that way!! I figured that I'd finally get some recognition from him, since he was suffering too!! All I got, was him closing his office without any notice! So, be careful what you wish for....it may not happen as you'd like it to!! Take care! you're friend
chronicpainbusters	Re: SEVERE PAIN	#20	[-]
Posts: 4 (08/27/04 10:53:31) OCPM Newbie Reply Quote More My Recent Posts Message Me Connection Blocking Invite Ignore User's Posts Report Post	Glenda, I'm so sorry that your pain levels are so high, that's awful. Try and get some rest. I'll keep you in my thoughts and prayers and hope that something comes along for you soon. I'm a big believer in light at the end of the tunnel, I just have trouble finding the tunnel sometimes... lol Anyway, take care. bcnu heather www.cybercsj.org/pb/index.htm www.endhomelessnessnow.org bcnu heather www.cybercsj.org/pb/index.htm

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