[kathy d]

Hi All,
I am asking for your help because I have to go to my neurologist this Friday and I need to find out what type of pain medicine I can try that work on us RSDers. I stopped using Fentanyl last week (yes, I thought I was going to die last week) and have started OxyContin (again) since I had an allergic reaction to the Fentanyl after a few years and had to stop it. The OxyContin is not working and I wake in the morning in severe burning pain and then the pain medicine is gone too. So, I get a double whammie of agony and can't continue this way and need something time released I guess. I need something that will help me sleep through the night (if there is anything that works for me) too if possible. I have tried just about everything under the sun and nothing seems to work. There has to be something maybe new on the market or a few years old to help with this unbearable pain. I don't think anyone should have to suffer in this way. I have full-body, Fibro, Rheum. Arthritis, and Osteoporosis too which doesn't help much either. Any suggestions would be a great big help to me. Thanks for all your help and great posting. Hope everyone has a better day today.
kathy d

[SandyRI]

Have you tried Methadone? I don't know if there is a time released version of it.

Good luck. I am using Fentanyl now, can't imagine getting alergic to it. Sorry about that. I also use Percocet for breakthru.

I read your other post regarding the WC insurance company ordering a halt to your ketamine treatments before they even started. What did the judge do? Did your attorney appeal the decision? What state do you live in? I would insist that my attorney keep fighting, don't give up.

Have you tried Lidocaine infusions? They helped me a little bit - especially in areas of spread like my right leg and my feet. I know that they feel different then they did before. Unfortunately, they have never touched the pain in my head or my neck or my shoulder, which are the original problem areas.

Good luck. Like I said before, don't give up, ever.

XOXOX Sandy

[dreambeliever128]

I was on Methadone for over 5 years and just got off of it all together about 8 months ago. I do keep it around though for flareups. I like it. I like you tried everything going and got sick on all of it.

If the dosage is started low and work up on it, I think it's better that way. It is the only med that I found that knocks the pain completely while it's in the system. I also use Lidocaine patches along with it at times or just by themsleves. They help some too.

Read up on all of the side effects of any meds you are recommended before you go in and ask for them so you will know which ones you may not want to ask for.

Good luck,
Ada

[kathy d]

Hi Sandy,
Thanks for your reply. I appreciate any and all the help I can get. I have not tried Methadone and will use that as one of my suggestions. I had a nurse tell me months ago that she had seen alot of success with it at the hospital for those with chronic pain. I will talk to my doctor about it on Friday. I took Fentanyl for over four years then all of the sudden the night I changed the patch about 10 hours afterwards I would wake up with severe internal itching all over my body, hives on my forehead and neck!! It was strange but my body is a mess.

Sandy, concerning your question about my wc judge in PA. My attorney made other arrangements and could not go that day so I went by myself along with a caretaker who wheeled me around. The other attny presented a letter he said was evidence and forgot to give me one and the judge said goodbye and that was it. Judge told me to have my attny get a copy of transcripts and that was it. I've heard nothing from no one since 9/14?? I am waiting for ins to approve my nerve freezing procedure before Ketamine and have heard nothing on it either. In the past three months I have sent letters with documentation to Pres. Obama, my congressman, my senator, the PA Ins Commission, the CA Ins Commission where the wc company is HQ at, and their HQ in So. Calif. along with the dealership where my injury occured and I am waiting for all of their replies. I will not give up to them. They have been treating me unethically for awhile now and I can't believe they make me wait in agony for over three years now and then say no when I can get it done.

I have had Lidocaine done in 2006 which only worked for about 2 months and it was exhausting. I had great results with chiropractics and wc said they did not feel I was doing well and they stopped that which I am still fighting for over a year now waiting for a judge's decision. It is just so hard when you are ill and dealing with all this mess. Thanks again for replying and it was nice to meet you.
Take care,
kathy d

Originally Posted by SandyRI

Have you tried Methadone? I don't know if there is a time released version of it.

Good luck. I am using Fentanyl now, can't imagine getting alergic to it. Sorry about that. I also use Percocet for breakthru.

I read your other post regarding the WC insurance company ordering a halt to your ketamine treatments before they even started. What did the judge do? Did your attorney appeal the decision? What state do you live in? I would insist that my attorney keep fighting, don't give up.

Have you tried Lidocaine infusions? They helped me a little bit - especially in areas of spread like my right leg and my feet. I know that they feel different then they did before. Unfortunately, they have never touched the pain in my head or my neck or my shoulder, which are the original problem areas.

Good luck. Like I said before, don't give up, ever.

XOXOX Sandy

[SandyRI]

Kathy,

IMHO, your attorney should not have left you to fend for yourself in court. And now what does he have to say about the delay? It is hard for anyone who is not sick to truly understand how hard it is to live day after day like this - each day can be so incredibly difficult. Stay on top of him as much as you can.

I wonder if Dr. S's double blind study that was released had any impact at all. It was supposed to have been so important for all of us. Perhaps in reality the insurance companies have more power than the courts. What a joke!! Judges are supposed to protect the people and render fair decisions, not side with big business.

Good luck. Sandy

[msdrea83]

i went through every med. in the book pretty much. ms cotin seemed to help a lot in the beginning. i've been taking ketamine orally for 3+ years now. started at 20mg/mL 2-3 mL every 2 hours. then just about 4 months ago it got increased to 50mg/mL. I haven't had to take it much the last year due to the ketamine infusions i've recieved. from 2 infusions i was in remission for 6-7 months total, no pain, no medication...

[Imahotep]

Nothing has really worked well for me.

Thankfully I do get a little impact from tramadol and prefer it with acetominephine.

Morphine in large quantity makes me so I don't notice it as much but I still feel it.

Tylenol 3 will make the window to get to sleep larger and longer lasting.

[ALASKA MIKE]

are you sure the hives were from the fent patch?

i have had several problems with fent in the past especially when it was changed at 72hrs, now at 48hrs life is better. i broke out in hives and had tons of pain and all kinds of side effects this summer when i tried lipitor. we couldnt figure out what was going on since i was on it over 3 weeks when the bumps stated but once i stopped at about 5 weeks, everything got better so my point is sometimes a med can take weeks and not hours or days before you get side effects. any new med in the past month??

there is no other med even close to fentanyl so i can feel for your pain and i agree humans should not have to suffer this much.

[AintSoBad]

I've been on methadone for 18+ years, starting @ 60mg, dropping to 15mg. 2nd Accident up to 100mg. now back to 60mg. (With adjuncts of course, diazepam, cymbalta, etc. for other injuries). I have fibro, (which I don't even notice with rsd, why bother? four herniated discs, and a subdural hematoma, tbi. And TOS.

The methadone is wonderful, and inexpensive. A little miralax/day and it's a complete difference.
Remember, we're NEVER going to get total pain relief. We want to make it livable.

You might want to ask your attorney if he's insured! If yes, ask for a copy of his Ins. Certificate, if no, look for a new attorney.
JMHO.

I wish you the best!

pete

[kathy d]

Originally Posted by ALASKA MIKE

are you sure the hives were from the fent patch?

i have had several problems with fent in the past especially when it was changed at 72hrs, now at 48hrs life is better. i broke out in hives and had tons of pain and all kinds of side effects this summer when i tried lipitor. we couldnt figure out what was going on since i was on it over 3 weeks when the bumps stated but once i stopped at about 5 weeks, everything got better so my point is sometimes a med can take weeks and not hours or days before you get side effects. any new med in the past month??

there is no other med even close to fentanyl so i can feel for your pain and i agree humans should not have to suffer this much.

Thanks Alaska Mike for your input as well as everyone else,
You guys are the best to me!!! It is great to know I can post here and get a great, truthful, reply from people who are honestly trying to help me. Mike...I was down to changing the patch every two days and over the last three months it got better. I took it off two Sundays ago and have not had one hive or itch since then. I really did not have any other new medicine. I have been on Fentanyl since beginning of 2005 and never had problems before now. Strange huh? Since changing I have more pain in different parts of my legs and body it is weird too. I have the doctor appt this Friday so I will let you know what we decide to do. Thanks again for your input.
kathy d