[NanaJ10]

Hi, I am 55, mother of 6/5living, grandmother of 10 and # 11 on the way. I am a 13 yr colorectal cancer survivor, and a 8 yr breast cancer survivor, and thus far a 15 yr RSD survivor. I have RSD in my knee. Developed after a surgery. Now I can't have a knee replacement because of it. am very very limited in walking,swells easil, pain gets unbearable and also will get cold, so cold it burns if that makes sense, Mostly what I have that drives me crazy, that I can barely get through is like hitting your crazybone in your elbow, that feeling but it doesn't go away...OMGosh it is awful!!!!!. I have perm total disability thru wc, and medicare. It is so very discouraging to live this way!!!I I have had a pain management Dr since 2001 or 2002, and am on narcotics. I am given a 3 mo subscription at a time. When I went 2 weeks ago, a different Dr was there, and mine had left, he told me this was my last visit and I would be getting a call from occupational therapy because mine was a workers comp case and they are no longer doing long term..ugh...I am in a panic. No Drs around here... He also...opened the door to my room, and with the door wide open, and standing at it he said loudly, "this is not RSD nope it doesn't present as RSD", he then tells me I have never seen a RSD specialist obviously. OMGosh, I told him I had been to about 11 Drs , from wc and they had all agreed and that I had permanent total disability. he preceded to tell me no one I saw was a specialist, I had nerve damage, and it was to late to get help but isn't RSD. He said I was on low dose narcotics and he was pleased to see that, and I was doing everything correct, and followed by... this will be the last time we will be seeing you here...I said I have been on these meds for years, he said oh I will write u a 3 mo prescription, his nurse said.."you have 3 months to figure something out"... He also ask me to get a spinal cord stimulator, I told him I had it made it worse and the dr took it out the next week. he told me they were very expensive and no dr would just take it out...I told him a good dr would. He ask me about nerve blocks. Finally i said to him, if you would have reviewed my chart you would have seen I had a stimulator and many nerve blocks. He just ignored me. I live in southern Ohio, known as the drug area big time. This was the last pain management I know of and they are now only doing short term treatment and have moved into the back and spinal dept. Drs around hear will abosolutely NOT write prescriptions for narcotics because of all the crooked drs and pain clinic arrests, they are all afraid. I have no clue what to do. I took myself off of 1 med to see how I did without it. After 4 days, my knee was terrible, from 6pm last night until 7 this eve. I was taking max breakthru meds, ibuprofen, tylenol, I even tried rubbing vicks because someone suggested it. Nothing helped. I have finally broke over and took ythe med I had cut down and then stopped. Now i am in a real panic. I can't live with this type of pain. I feel so desperate. My family Dr is same as all the rest, does not write narcotics. So so panicked after last 24 hours.

[LIT LOVE]

3 months actually should be long enough to find a new doctor.

When you say you had a Spinal Cord Stimulator--was that the trial? Or did you go through the trial and then had the permanent one implanted?

There are different options today then when you first started taking narcotics years ago. I'm not saying that what you're taking isn't the best option, but you might consider working with a doc to determine if you'd get better results with some of the newer options.

Usually Schedule II drugs, are only written in 30 day supplies. If you are taking a lesser narcotic, you really shouldn't have a problem finding a doctor to write the scripts for you. Pain clinics are often now unwilling to write them, but it doesn't mean that there aren't other docs that are willing. Having non-narcotic options as an option are a good idea as well. Have you ever tried Lidocaine patches? epsom salt cream which is inexpensive and available on Amazon works well for some--it makes a big difference in my swelling.

Stopping your meds cold turkey is not a good option. At most you'd want to decrease your dosage by 25% every week or two.

WC rules vary from state to state, but in general the insurance companies seem to be trying to take advantage of the backlash against stronger narcotics. Frankly, they were over prescribed, but instead of trying to evaluate each patient, sometimes bad policies are put into place.

I've had my primary WC doc unexpectedly pass away on me, and three others have left there practices over the years for a variety of reasons. It happens. You might consider trying to find the closest RSD/CRPS support group and get a referral for an experienced RSD/CRPS doc. You could also try a teaching hospital. What if a few Ketamine Infusions put you into remission? (Odds are low it'll be that easy but you never know.)

[scubaforsythe]

Hello NanaJ,
Sorry to hear your having so much trouble!! I'm in Northern Ohio and having similar issues!! My doctor told me he did not believe it was RSD due to the fact I had trouble raising my arm above my head. My Red is in my shoulder and a couple days before my initial appointment with him I really over used it trying to help get my daughter into her prom dress, sinching up a corseted dress can be difficult when one arm is paralyzed and the other is injured and is riddled with rsd. But of course, in his almightiness he knew better and decided he would not give me pain meds, but would put me on lyrica and scheduled a nerve block to see if I had red or not. I also don't get a lot of other symptoms, just some swelling, temp differences cannot be felt due to my left side being so messed up from the stroke I had 41 years ago, so this doesn't help him believe me. I wonder if Ohio is just a bad state to get help in??? Have you thought about the Cleveland clinic? I'm not too far from there and if this doctor doesn't un-insert his head from his backside at the next visit, then I will be calling Cleveland clinic.

Sending healing love and hugs

[LIT LOVE]

Originally Posted by scubaforsythe

Hello NanaJ,
Sorry to hear your having so much trouble!! I'm in Northern Ohio and having similar issues!! My doctor told me he did not believe it was RSD due to the fact I had trouble raising my arm above my head. My Red is in my shoulder and a couple days before my initial appointment with him I really over used it trying to help get my daughter into her prom dress, sinching up a corseted dress can be difficult when one arm is paralyzed and the other is injured and is riddled with rsd. But of course, in his almightiness he knew better and decided he would not give me pain meds, but would put me on lyrica and scheduled a nerve block to see if I had red or not. I also don't get a lot of other symptoms, just some swelling, temp differences cannot be felt due to my left side being so messed up from the stroke I had 41 years ago, so this doesn't help him believe me. I wonder if Ohio is just a bad state to get help in??? Have you thought about the Cleveland clinic? I'm not too far from there and if this doctor doesn't un-insert his head from his backside at the next visit, then I will be calling Cleveland clinic.

Sending healing love and hugs

Just because a person can't feel temp difference by touch, it doesn't mean they don't exist. There is special equipment used to accurately measure temp, and if he doesn't have it, he should send you to be tested.

Temp regulation issues can also come and go, and an experienced CRPS doc will not expect any symptom to just magically occur during a few appointments.

[scubaforsythe]

Agreed!!! Doctors just don't seem to care or are afraid to diagnose it. They make you feel like you are wanting to have this and not just wanting an accurate diagnosis and proper treatment...

[NanaJ10]

Ty all for your replies. I will try to respond about what each have suggested. I have never heard of most of these things. In 2001/2002, I was just sent from the surgeon to pain management, and there I have been left, my Dr wrote 3 mo prescriptions, but each prescription is 1 month supply, so for each pain med I get 3 prescriptions. I am taking them so sparingly, I am pretty much home and bed bound because i am so scared of having no medicine, honestly, I can't imagine. . I did not even know about these other things. I live in southern ohio. 1 county away is listed as the drug capitol and it is in documenatries on tv etc. The pain clinics...illegal ;;;started in Scioto county according to the news. But that is not the kind I have gone to, mine has been legitimate, however because of these illegal clinics and the drugs so bad many drs won't write anything. I have been reducing my meds myself. I can't tell if the flares are because meds are reduced, or just normal flares. Cleveland clinic I think, is peobably around 300 miles from me? I am at the southern part. Anyway driving is a HUGE issue for me and I have to get someone to take me and I am positive I won't get anyone to take me there. The closest teaching college is Ohio State Univ., again 2 hr drive. I have made a appt. with my family Dr. I had previously ask him about writing my prescriptions so I didnt have to go to pain management and he wouldn't. However I made this appt. to discuss with him if he knows any specialists within a hr drive or so, anyone who treats and understands RSD . The only specialist I ever saw was the 1 workers comp sent me to several times for evaluations and he doesnt have a reg office, and sadly is not a option.I have never heard of ketamine and going to look that up, nor about the saline. In 2002 I had nerve blocks, I really can't remember if they worked, if they did it couldn't have been for long. The stimulator, that is hard to explain. I was getting ther temporary, and he had a hard time getting it,he told me finally when it was in the area it would have to be permanaent...it was out 1 week later, it made it soooo much worse!!! The last dr appt the nurse said it couldn't have been perm because temp and perm are 2 diff things, she said I didnt have it at all...I sure have a scar on my back for having nothing !!! They have my chart...geesh, look it up !!! But I guess they didn't really care anyway. Would have been nice if they had said, we can't see u anymore but here is a RSD specialist we will refer you to...As for the stim. I can only go by what the Dr told me when he did it, and he was the original pain management dr. I was so unaware of all of this stuff. All I heard back then was there was really nothing they could do but trial and error on meds. Originally it was a antideprtesant and seizure ,and and narcotics...only change all these yrs later is no antidepressant and lower doses of pain meds. I feel so cheated ...living in a very rural area, being poor, it seems I have just kind of been left hanging with no one saying...this is available etc. I am hoping to get a good referral to some type of Dr. from my Dr. In the meantime I am worried, I can't help but be. When it gets about7/ 8 I have been breaking over to take pain med, then usually 6 hrs later because I let it go so far I take a 2nd. I also take ibuprofen, tylenol, benadryl occasionally to sleep, I have tried vicks, and several other creams on my leg, but I can't bear rubbing anything on it. I have tried desentzation...again same thing but believe me I have really tried that many times and have sent myself to 7/8 that is so difficult to calm. I do breathing tech, I try to redirect my attention, I taught myself to crochet etc., but u all know nothing can really ever get rid of it. it makes me so scared thinking how will I cope, I guess because the only help I have had is the pain meds and I just think back to when I 1st got it, and until I finally got medicine... If something, whatever it may be , doesn't help and I get as I was before..I don't think I can cope or will have the desire too. ..... Praying my Dr can send me to someone who knows about RSD..... Ty so much, and prayers you will be pain free, and they will find a treatment for us all.

[Jennijojo]

Originally Posted by NanaJ10

Ty all for your replies. I will try to respond about what each have suggested. I have never heard of most of these things. In 2001/2002, I was just sent from the surgeon to pain management, and there I have been left, my Dr wrote 3 mo prescriptions, but each prescription is 1 month supply, so for each pain med I get 3 prescriptions. I am taking them so sparingly, I am pretty much home and bed bound because i am so scared of having no medicine, honestly, I can't imagine. . I did not even know about these other things. I live in southern ohio. 1 county away is listed as the drug capitol and it is in documenatries on tv etc. The pain clinics...illegal ;;;started in Scioto county according to the news. But that is not the kind I have gone to, mine has been legitimate, however because of these illegal clinics and the drugs so bad many drs won't write anything. I have been reducing my meds myself. I can't tell if the flares are because meds are reduced, or just normal flares. Cleveland clinic I think, is peobably around 300 miles from me? I am at the southern part. Anyway driving is a HUGE issue for me and I have to get someone to take me and I am positive I won't get anyone to take me there. The closest teaching college is Ohio State Univ., again 2 hr drive. I have made a appt. with my family Dr. I had previously ask him about writing my prescriptions so I didnt have to go to pain management and he wouldn't. However I made this appt. to discuss with him if he knows any specialists within a hr drive or so, anyone who treats and understands RSD . The only specialist I ever saw was the 1 workers comp sent me to several times for evaluations and he doesnt have a reg office, and sadly is not a option.I have never heard of ketamine and going to look that up, nor about the saline. In 2002 I had nerve blocks, I really can't remember if they worked, if they did it couldn't have been for long. The stimulator, that is hard to explain. I was getting ther temporary, and he had a hard time getting it,he told me finally when it was in the area it would have to be permanaent...it was out 1 week later, it made it soooo much worse!!! The last dr appt the nurse said it couldn't have been perm because temp and perm are 2 diff things, she said I didnt have it at all...I sure have a scar on my back for having nothing !!! They have my chart...geesh, look it up !!! But I guess they didn't really care anyway. Would have been nice if they had said, we can't see u anymore but here is a RSD specialist we will refer you to...As for the stim. I can only go by what the Dr told me when he did it, and he was the original pain management dr. I was so unaware of all of this stuff. All I heard back then was there was really nothing they could do but trial and error on meds. Originally it was a antideprtesant and seizure ,and and narcotics...only change all these yrs later is no antidepressant and lower doses of pain meds. I feel so cheated ...living in a very rural area, being poor, it seems I have just kind of been left hanging with no one saying...this is available etc. I am hoping to get a good referral to some type of Dr. from my Dr. In the meantime I am worried, I can't help but be. When it gets about7/ 8 I have been breaking over to take pain med, then usually 6 hrs later because I let it go so far I take a 2nd. I also take ibuprofen, tylenol, benadryl occasionally to sleep, I have tried vicks, and several other creams on my leg, but I can't bear rubbing anything on it. I have tried desentzation...again same thing but believe me I have really tried that many times and have sent myself to 7/8 that is so difficult to calm. I do breathing tech, I try to redirect my attention, I taught myself to crochet etc., but u all know nothing can really ever get rid of it. it makes me so scared thinking how will I cope, I guess because the only help I have had is the pain meds and I just think back to when I 1st got it, and until I finally got medicine... If something, whatever it may be , doesn't help and I get as I was before..I don't think I can cope or will have the desire too. ..... Praying my Dr can send me to someone who knows about RSD..... Ty so much, and prayers you will be pain free, and they will find a treatment for us all.

Sending prayers and hugs!

[LIT LOVE]

They always do a trial SCS first, and it always comes out within a week. The permanent version includes implanting the battery pack as well. (I'm terrified that a even a trial might cause spread.)

I'm only making this clear in case it comes up again. Just say, "I had an unsuccessful SCS trial."

If your doc was writing Schedule II drugs early, he actually could have lost his license. You can do an internet search with your meds to figure out what schedule they are. It's IMPORTANT to know. Regulations vary and if you're taking non Schedule II drugs, it will be easier.

[scubaforsythe]

Originally Posted by LIT LOVE

They always do a trial SCS first, and it always comes out within a week. The permanent version includes implanting the battery pack as well. (I'm terrified that a even a trial might cause spread.)

I'm only making this clear in case it comes up again. Just say, "I had an unsuccessful SCS trial."

If your doc was writing Schedule II drugs early, he actually could have lost his license. You can do an internet search with your meds to figure out what schedule they are. It's IMPORTANT to know. Regulations vary and if you're taking non Schedule II drugs, it will be easier.

Lit, I wondered why my pm doc did not prescribe anything other than lyrica for pain my first visit. He must have been wanting to know if the block worked or not before he prescribed anything else for pain. I wish they would have explained that to me, I thought he was just being a <bleep>...

thanks for that info!!!

[Littlepaw]

It is helpful as far as the regulations if the doctor can document that lower level meds were not effective before jumping in with anything stronger. Their prescribing actions are highly regulated and audited now, more so than ever before. If lower level can work that is better for the patient. might have been a combo diagnostic and CYA...