Yes,I posted before about the reaction I got when even doctors find out that narcotics are part of the protocol. So tired of it all,too. I agree that so far I have found no drug to take away my pain. The combination of neurontin,hydrocodone and lorazepam makes it bearable. No one gets this unless they have it. So many doctors don’t have a clue either.
Surgery remains off the table for me, at least until there is no choice, it seems to be a last resort these days. Pain management injections only made me worse, so hyper sensitive that it has not entirely left me 5 or 6 years later. Biologics are now off the table because of recurrent infections.
Lyrica only helps with nerve pain, and the Daypro for the bone and joint pain is not cutting it anymore. It used to be th med that helped me the most, but not now. The Ethyl Chloride helps, but I cannot use it often, according to my Rheumatologist, so I hang onto that for when I must ride in the car.
When the pain gets as bad as it has been lately, it changes me completely. I lose my good nature, my humanity, and unwillingly become a monster!
Hi Lisa,
OOH, that's freaky! It's amazing how many different side effects there can be to meds! It just made me loopy, like I was spinning, that was bad enough!
Lyrica just make me swell once in a while, and I just have to stop it for a day or two.
So sorry that you have not been able to find anything that helps. There are some rubs the gals use on the Sjogren's site, Voltaren is one, and some have prescriptions for compound rubs, meaning they are made up especially for them according to Doctors orders. It may be something to consider. I get amazing relief from OTC Sportscreme, it even helps joint/bone pain.
It's good to hear from you!
Wishing you well,
SK
Lyrica seems to work best for me.
I also have had a difficult time getting the narcotics I need, from doctors and pharmacists. Because of a law change on TN they will not prescribe the med that worked very good for me for 10+ years. Now they will only prescribe it for addiction, which means I would have to drive 45+ miles EVERY DAY to get it and tell them I have abused my meds ( which I didn't ).
I also do find cannabis helpful, the laws in TN won't allow me to get it medically (although my Dr is OK with it ) but some types definitely help more than others and are hard to find.
Hi cool mamma duck,
This is not the first time I have heard this about TN. Some friends on BF Fibro site have been upset about this for years. Of course they have much more serious injuries and illnesses to be considered.
They seem (TN) to have total disregard for those who live in chronic pain. It is my personal belief that this is a decision to be made by the attending physician, NOT the legislature.
Writing to your representatives may be the ONLY way to change this.
SK, This summer was REALLY rough for me. I walked into my drs appt and was told the DEA had been there and they could no longer prescribe my medicine. They gave me a different medicine and a referral. It was over a month til I could get in, the med change had me climbing the walls. Then when I went to my new appt my neurologist hadn't sent my records. Long story - short they were rude, discharged me and I ended up in the hospital. I am still recovering, physically and mentally. And now have no option but to try and adjust to a medicine that dulls the pain but makes me even more tired and loopy and other problems with side effects. I don't know what to do. I took my medicine right, did everything I was supposed to, now I'm being punished for other's mistakes. Do you know anyone i could write to that might could help?
I've never dealt with the DEA, but I imagine their decisions are tough to overthrow. I do know that they are trying to get Oxycontin off the streets, and away from patients because of loss of life. I don't know that this is the med you were finding effective, but I can only guess. Many pharmacies are refusing to fill it even if you are able to get the prescription.
Here is an idea of what is happening...
Actually ,it's not. When I got sick they weren't even prescribed. A doctor wrote a nasty letter,because I didn't "look" sick. I ended up in a methadone program, and it worked great for me and had been stable at 85mg - 100mg for over 15 yrs until June.Also , the more I am learning about fibro, I seem to have those symptoms also.
Question: Do any of you, double type or have other difficulty with touchscreens?
BTW I get oxycodone now and I don't feel like it is as good especially for chronic pain. The methadone worked for me, was long lasting, cheap, and didn't make me feel high.
The best thing to say about legislatures and their attempts to Control the intake the various things For various people except for themselves is the following:
Working with these medications is much different in the field than it is in the legislature or the lab.
And yes, many many legislators operate under the hideous hatred of the concept from the 60s, which they still believe this even for people who can hand over the Genetic testing showing the flaw with which a given person has to deal… they ask," if it feels good, Do it. Right?."
And they'll have the temerity to tell you that to your face.
Further they'll also say if we remove laws against rape and murder and we will not have any problems with rape and murder right?
No lie is too outrageous for legislators going after drugs of any kind to utter, especially when such ladies and gentlemen are in no way qualified to make any decisions or judgments about medications because they're not physicians.
Next time you are in a discussion with one of them, and they're giving you the business, ask them where they got their degrees in medicine.
Go to a different doctor.
You may have to move... in California, so long as you are not abusing your meds, you have a right in law to opiate palliation.
What was the actual evidence that you had done something wrong? Or was it the practice itself that was in trouble?
The DEA doesn't get to decide what is appropriate medication for you. Period.
CoolMommaDucky said:
SK, This summer was REALLY rough for me. I walked into my drs appt and was told the DEA had been there and they could no longer prescribe my medicine. They gave me a different medicine and a referral. It was over a month til I could get in, the med change had me climbing the walls. Then when I went to my new appt my neurologist hadn't sent my records. Long story - short they were rude, discharged me and I ended up in the hospital. I am still recovering, physically and mentally. And now have no option but to try and adjust to a medicine that dulls the pain but makes me even more tired and loopy and other problems with side effects. I don't know what to do. I took my medicine right, did everything I was supposed to, now I'm being punished for other's mistakes. Do you know anyone i could write to that might could help?
Exactly!
I have talked with several people who have been given methadone, most had catastrophic injury, but knowing what you all have taught e about CMT, this disease is about as close as it gets.
I’ve lost touch with them, so not sure they can still have it prescribed. I’d say that they are controlling this particular substance, but who can really know.
It’s a wonder we can still get anything stronger than NSAIDS!
Never happen.
Some groups who believe they have been agrieved or damaged by oxycontin want to stop larger pills 80mg+ from being manufactured, so that they cannot be crushed up and snorted.
Oxycodone, the acvtive ingredient, is simply pharmaceutical heroin.
But a bottle of aspirin will kill you. So will a slight overdose of Tylenol, which is very dangerous to your liver.
On the other hand 370 mg oxycodone taken at once will not kill you.
This is all about getting high and saving police jobs, as they lost their war on marijuana.
Agrieved people want a lot of things. One man whose so died from cocaine use, wanted the Federal government to visit murder charges on anyone caught selling cocaine in any cicrumstance, to make up for those whose lives have been lost.
Just because someone/some groups wrote something on the internet doesn't mean the Feds want to get ride of oxycodone, oxycontin, ect.
Further, the USA is not the only place in the world. In Canada, heroin itself is used as a painkiller.
SK said:
I've never dealt with the DEA, but I imagine their decisions are tough to overthrow. I do know that they are trying to get Oxycontin off the streets, and away from patients because of loss of life. I don't know that this is the med you were finding effective, but I can only guess. Many pharmacies are refusing to fill it even if you are able to get the prescription.
Here is an idea of what is happening...
https://www.google.com/webhp?sourceid=chrome-instant&ion=1&...
I know Eric, I'm constantly having the blood tests for liver and kidneys, as my greatest source of relief from arthritis joint damage are the NSAIDS. So far Daypro works best for me, but my Rheumatologist is always warning me not to exceed the daily limits. He tells me to take morphine if I need more than the recommended dose, that it's safer!
My new neurologists started me on Imiprimine for nerve pain and it’s been amazing since day one! Gabapentin took some of the pain away but made me a zombie, unable to focus. No side effects with Imiprimine except better quality of life.
so I’m on Gaba 900 x4 daily, Immovane for sleep, percocet for the really bad days. thank goodness i live in canada! DEA can’t get me here lol. and yet it’s 4:00am and I’m still awake due to pain… seems like not much has improved in our treatment
I have problems with the heat and real cold.