Re: Pain specialist

[Guest guest]

First, none of this has happened to me yet, but it is everything I fear. I am allergic to most pain medications. They do nothing. It is like they gave me nothing. They were amazed. I have not tried or had to try oxycontin but have feared the illegal usage would hinder me when I may need it. I missed that Oprah show. Print this message and take it to your pain specialist et all because you won't be able to articulate on the spot when they are hovering over you like "hurry up".

-----Original Message-----From: imkatietoo [mailto:imkatietoo@...]Sent: Friday, November 21, 2003 10:32 PMRheumatoid Arthritis Subject: Pain specialistHi. My name is Katy and I'm 48. I've been a member of this group but have not visited it for a long time. I have RA along with myelodysplasia, a blood condition sometimes called pre-leukemia). I had sudden onset in January 1997. Went to bed thinking I was coming down with the flu or something and woke up the next morning and my whole body from head to toe (including jaws) was so painful I could not move. After 4 months of being bedridden and running 104 temps and going downhill fast I was admitted to the hospital for blood transfusions (I had no iron in my blood) and high doses of steroids by IV. At first they thought I had Stills Disease because my RA factor was negative, and still is. After going thru all the medical treatments, we have finally found something that works for me and keeps me out of bed and functinal. I've already had both hips replaced, a year apart one in 1999 and the other in 2000. Not sure if the hips deteriorated so fast because of the RA, the several high dose steroid iv treatments or both. I was on 20 mg of Prednisone daily for so long and have finally been able to taper it down to 5mg a day. Needless to say, I have developed osteoporosis because of the Prednisone. Right now I am taking 25mg inject of MTX weekly. Daily meds are 5mgPrednisone, 20mg Paxil at bedtime, 10mg Amitryptiline at night and I take 500mg of Hydrea every 3 days which is a chemo drug for the blood disease. For pain, every day I take 40 mg of Oxycontin 3 times a day and if I need it 2 Norco 1 to 3 times a day). I am on 5 vials of Remicade every 8 weeks. My progress has been gradual but I am now able to take care of myself, do house chores, shopping and even drive now. If I pace myself and take rest periods thru out the day (my fatigue is still horrible) I do very well compared to how I was even three years ago. Now, the problem I'm facing. With all the negative publicity about oxycontin and the government breathing down doctors necks, I am scheduled to see a pain specialist next week. I think the insurance company is also behind it because the oxycontin is costing over $400 a month (which I cannot possibly afford if I didn't have a RX card). The insurance company has to authorize the doctor to write it for me or they won't pay for it at all. I know I'm seeing the pain specialist to see if there are any alternatives to the oxycontin and I am scared to death that they are going to take me off of it and I'm going to end up an invalid again and be in constant pain. Before I started taking the oxycontin, I couldn't even hold a coffee cup or pull up my underwear because of the pain in my thumbs and hands. And then I'm afraid that if they do take me off the oxycontin and see that I really do need it and put me back on it, it isn't going to work any more. I watched the Oprah show the other day about prescription drug addicts and then I started wondering if I'm addicted to it. I've been taking it for 3 years. What if I am addicted to it but I still need it for the pain. I am so afraid of having that pain again. I don't think I could have survive going thru all that again. Since I've been on pain medication for so long, I have built a resistance to it because my 2nd hip surgery was so painful and had a difficult time getting relief from the doses they were giving me that the nurse couldn't believe I could be in as much pain as I was after giving me so much of whatever she was giving me. Now I'm afraid to have any kind of surgery at all. Maybe I just have a low tolerance to pain (although I didn't before all this happened). Has anyone here experienced any of this? Have you seen a pain specialist and what do they do? I know they like to get you off of pain medication if they can. Believe me, I really do wish I didn't have to take pain medication to function. Before getting sick, I would suffer for hours with a headache before I would even take Tylenol. What will I do if I am addicted to this medicine but I still need it for the pain? I have taken Vioxx and still do when I get really really bad but I'm supposed to stay off these kind of medications unless I really need it because the other anti-inflammatories resulted in my developing a huge bleeding ulcer. Am I just being Paranoid about all this? Please advise me if anyone can. Sorry this is so long but I really don't have anyone else to talk to that can understand what I'm talking about. Thanks, Katy

[Guest guest]

Hello .. no.. i don't think you are an hypochondriac.. i, too, had been just about convinced that i was a case for the white coats. i understand, and hopefull someone on this list can give you better answers than I, but, although my problems have not progressed as far as yours, i've been to where i was unable to touch, pull or push or get up from a chair or comode,, had to make commode higher in able to use it.. and so on and on... for years i was brushed off as suffering from anxiety or 'a nervous condition.'

i have found some help, though.. i have changed my eating habits by cutting out red meats and very little other meat.. eat a little chicken breasts, fresh fish, and tuna or albacore, ..

do not eat refined sugar. use only an herb called Stevia (clear liquid extract) to sweeten nearly everything i need to sweeten.

i quit using dairy products, i use almond milk or Kosher soy milk.

no fat or low fat. use olive oil when necessary or desired .. ..

no carbonated drinks (never drank alohol either anyway so don't have that to give up <grin>.) i drink fresh sqeezed lemonade using reverse osmosis water and sweetened with stevia.

lots of almost raw or raw vegetables and fruits and nuts, organic when possible. recently i begun to drink an organic egg with a fruit , fresh, frozen or canned, and soy milk with stevia to sweeten and maybe a dash of vanilla fraped in the blender for breakfast along with my medication, vitamins etc. and if i eat bread, wholewheat or rye. course it all has some white in it but some whole is better than none.

i get protein from all that, plus i have begun to sprout the dried beans and rice and then cook them and that gives a lot of protein.

i recently got so bad in feet and legs i could hardly walk, and just a few days of the raw organic egg shake my ability to walk and less pain has really amazed me. i found that if i do the proteins and vegetables, (low..very low.. carbs) in the morning and for lunch, my legs don't hurt as much. then i add the carbs along with the proteins and greens for evening meals. the carbs give a feeling of well being and i can relax better within an hour after taking them.

I use quite a few herbs like ginger (antinflamatory and stimulator). i use it along with my food or incapsulated and also made a liniment using ginger and comfrey tinctured in isopropal alcohol (rubbing alcohol) and that relieves a lot of pains in the joints. next time i make some i think i will add some cayene as it will heat and stimulate and be like heating the joint.

i also had esophageal reflux but quit taking the pills for it and enstead use ...as needed.. acidolphus between meals, DGL (a form of licorice) about 20 minutes before meals and vegetable enzymes after meals. only time i have a problem with stomach now is when i break down and have any kind of meat, like roast, burgers, franks, lunch meats or have an icecream binge. etc..: ) this has helpd me tremendously as i hadn't been able to sleep lying down flat for several years until i started with the above.

i am still working at getting my eating habits coraled, but so far what i have been doing has really made a difference. i am just past 75 and so figure i have several more years left to get better. i study a lot about herbal remedies and amazingly, a lot of it works. i am forever amazed!

the only prescriptions i am taking is naprosin 500 mg morning and night and a 5 mg prednisone in morning... and i aim to get so well i can get off that!!! i do take Vit E, multivitamins, calcium and freshly ground flax seed (for omega 3 oils). allso use some herbal teas, chew a bit of dried or fresh sage nearly every day. i grow some of my herbs so have to get better so i can keep up with the garden..LOL!!!

i have been using growing and using some herbs for many years, but have learned a lot more since i started researching on the net. there are several herbal news groups/mail lists that i have learned from and i hope to learn more so i can get over this blamed peripheral neuropathy so i can use my fingers better to type and capitolize without stopping to hit the right key!.lLOL ..

well.. i rambel on.. but i hope you will, if not already watching your intake, think about it.

all best wishes and love.. lee h

----- Original Message -----

From: imkatietoo

Rheumatoid Arthritis

Sent: Friday, November 21, 2003 9:31 PM

Subject: Pain specialist

Hi. My name is Katy and I'm 48. I've been a member of this group but have not visited it for a long time. I have RA along with myelodysplasia, a blood condition sometimes called pre-leukemia). I had sudden onset in January 1997. Went to bed thinking I was coming down with the flu or something and woke up the next morning and my whole body from head to toe (including jaws) was so painful I could not move. After 4 months of being bedridden and running 104 temps and going downhill fast I was admitted to the hospital for blood transfusions (I had no iron in my blood) and high doses of steroids by IV. At first they thought I had Stills Disease because my RA factor was negative, and still is. After going thru all the medical treatments, we have finally found something that works for me and keeps me out of bed and functinal. I've already had both hips replaced, a year apart one in 1999 and the other in 2000. Not sure if the hips deteriorated so fast because of the RA, the several high dose steroid iv treatments or both. I was on 20 mg of Prednisone daily for so long and have finally been able to taper it down to 5mg a day. Needless to say, I have developed osteoporosis because of the Prednisone. Right now I am taking 25mg inject of MTX weekly. Daily meds are 5mgPrednisone, 20mg Paxil at bedtime, 10mg Amitryptiline at night and I take 500mg of Hydrea every 3 days which is a chemo drug for the blood disease. For pain, every day I take 40 mg of Oxycontin 3 times a day and if I need it 2 Norco 1 to 3 times a day). I am on 5 vials of Remicade every 8 weeks. My progress has been gradual but I am now able to take care of myself, do house chores, shopping and even drive now. If I pace myself and take rest periods thru out the day (my fatigue is still horrible) I do very well compared to how I was even three years ago. Now, the problem I'm facing. With all the negative publicity about oxycontin and the government breathing down doctors necks, I am scheduled to see a pain specialist next week. I think the insurance company is also behind it because the oxycontin is costing over $400 a month (which I cannot possibly afford if I didn't have a RX card). The insurance company has to authorize the doctor to write it for me or they won't pay for it at all. I know I'm seeing the pain specialist to see if there are any alternatives to the oxycontin and I am scared to death that they are going to take me off of it and I'm going to end up an invalid again and be in constant pain. Before I started taking the oxycontin, I couldn't even hold a coffee cup or pull up my underwear because of the pain in my thumbs and hands. And then I'm afraid that if they do take me off the oxycontin and see that I really do need it and put me back on it, it isn't going to work any more. I watched the Oprah show the other day about prescription drug addicts and then I started wondering if I'm addicted to it. I've been taking it for 3 years. What if I am addicted to it but I still need it for the pain. I am so afraid of having that pain again. I don't think I could have survive going thru all that again. Since I've been on pain medication for so long, I have built a resistance to it because my 2nd hip surgery was so painful and had a difficult time getting relief from the doses they were giving me that the nurse couldn't believe I could be in as much pain as I was after giving me so much of whatever she was giving me. Now I'm afraid to have any kind of surgery at all. Maybe I just have a low tolerance to pain (although I didn't before all this happened). Has anyone here experienced any of this? Have you seen a pain specialist and what do they do? I know they like to get you off of pain medication if they can. Believe me, I really do wish I didn't have to take pain medication to function. Before getting sick, I would suffer for hours with a headache before I would even take Tylenol. What will I do if I am addicted to this medicine but I still need it for the pain? I have taken Vioxx and still do when I get really really bad but I'm supposed to stay off these kind of medications unless I really need it because the other anti-inflammatories resulted in my developing a huge bleeding ulcer. Am I just being Paranoid about all this? Please advise me if anyone can. Sorry this is so long but I really don't have anyone else to talk to that can understand what I'm talking about. Thanks, Katy

[Guest guest]

When I started to read your letter I thought of adult onset Still's disease and then noticed that it had been considered and rejected. Another board I follow has a person who posts as Island Woman who has Still's and has some symptoms in common with you. Perhaps you would like to post on that board and see if you can get some assistance there. http://www.arthritisinsight.com/cgi-bin/wsmbb/wsmbb.cgi?SB+KYWRJLLXVS/AKFCLKZQUN+config Good luck and God bless. (I haven't checked that board this week so maybe Island Woman is still missing from the board. She apparently lost power when a bad storm hit the Virgin Islands.)

----- Original Message -----

From: imkatietoo

Rheumatoid Arthritis

Sent: Friday, November 21, 2003 7:31 PM

Subject: Pain specialist

Hi. My name is Katy and I'm 48. I've been a member of this group but have not visited it for a long time. I have RA along with myelodysplasia, a blood condition sometimes called pre-leukemia). I had sudden onset in January 1997. Went to bed thinking I was coming down with the flu or something and woke up the next morning and my whole body from head to toe (including jaws) was so painful I could not move. After 4 months of being bedridden and running 104 temps and going downhill fast I was admitted to the hospital for blood transfusions (I had no iron in my blood) and high doses of steroids by IV. At first they thought I had Stills Disease because my RA factor was negative, and still is. After going thru all the medical treatments, we have finally found something that works for me and keeps me out of bed and functinal. I've already had both hips replaced, a year apart one in 1999 and the other in 2000. Not sure if the hips deteriorated so fast because of the RA, the several high dose steroid iv treatments or both. I was on 20 mg of Prednisone daily for so long and have finally been able to taper it down to 5mg a day. Needless to say, I have developed osteoporosis because of the Prednisone. Right now I am taking 25mg inject of MTX weekly. Daily meds are 5mgPrednisone, 20mg Paxil at bedtime, 10mg Amitryptiline at night and I take 500mg of Hydrea every 3 days which is a chemo drug for the blood disease. For pain, every day I take 40 mg of Oxycontin 3 times a day and if I need it 2 Norco 1 to 3 times a day). I am on 5 vials of Remicade every 8 weeks. My progress has been gradual but I am now able to take care of myself, do house chores, shopping and even drive now. If I pace myself and take rest periods thru out the day (my fatigue is still horrible) I do very well compared to how I was even three years ago. Now, the problem I'm facing. With all the negative publicity about oxycontin and the government breathing down doctors necks, I am scheduled to see a pain specialist next week. I think the insurance company is also behind it because the oxycontin is costing over $400 a month (which I cannot possibly afford if I didn't have a RX card). The insurance company has to authorize the doctor to write it for me or they won't pay for it at all. I know I'm seeing the pain specialist to see if there are any alternatives to the oxycontin and I am scared to death that they are going to take me off of it and I'm going to end up an invalid again and be in constant pain. Before I started taking the oxycontin, I couldn't even hold a coffee cup or pull up my underwear because of the pain in my thumbs and hands. And then I'm afraid that if they do take me off the oxycontin and see that I really do need it and put me back on it, it isn't going to work any more. I watched the Oprah show the other day about prescription drug addicts and then I started wondering if I'm addicted to it. I've been taking it for 3 years. What if I am addicted to it but I still need it for the pain. I am so afraid of having that pain again. I don't think I could have survive going thru all that again. Since I've been on pain medication for so long, I have built a resistance to it because my 2nd hip surgery was so painful and had a difficult time getting relief from the doses they were giving me that the nurse couldn't believe I could be in as much pain as I was after giving me so much of whatever she was giving me. Now I'm afraid to have any kind of surgery at all. Maybe I just have a low tolerance to pain (although I didn't before all this happened). Has anyone here experienced any of this? Have you seen a pain specialist and what do they do? I know they like to get you off of pain medication if they can. Believe me, I really do wish I didn't have to take pain medication to function. Before getting sick, I would suffer for hours with a headache before I would even take Tylenol. What will I do if I am addicted to this medicine but I still need it for the pain? I have taken Vioxx and still do when I get really really bad but I'm supposed to stay off these kind of medications unless I really need it because the other anti-inflammatories resulted in my developing a huge bleeding ulcer. Am I just being Paranoid about all this? Please advise me if anyone can. Sorry this is so long but I really don't have anyone else to talk to that can understand what I'm talking about. Thanks, Katy

[Guest guest]

,

I have seen a pain doctor and the first visit takes longer sometimes

because they want to look at what test you have had done and dicuss

the best treatment for you. Please be aware of what they precribe you

for pain. I went to one and the doctor put me on a very strong

narcotic pain patch that you get dependent on, the patch made me have

bad headaches so after a while I choose to go off of them and it was

the worse thing I ever went through. Now I am very careful to what

they give me. Good luck.

Sue

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