New Drugs - anyone else?
 

I haven't put my own post on here for awhile, but have been keeping up with most of you. So maybe some of you can add an opinion.
I'm starting to feel like a human chemistry set.

Most of us know there is no medicine for CRPS/RSD & everything we get is "off label" & made for other diseases/conditions and may happen to work for us.

Mid November my P.M. Dr. rx'd 2 new drugs: Topamax (for migranes) for me to try. I took it for about 6 wks. It did not seem to have any effect, other than G/I issues so I stopped. I did not want to try 2 new drugs at the same time.

So, now I'm on day 6 of taking Namenda (for Alzheimer's). I guess she thinks there is some connection of how the drug works on the nerve reactions in the brain.

I'm still taking Cymbalta, low dose Lyrica, Baclofen and I still get Stellate Ganglion blocks about every 3 weeks. I've had 20-21 of those & I'm really tired of getting stabbed in the neck and being a zombie for the day.

I'm past a year mark with this. I hate to use the term "give up", but has anyone else just stopped with all the experimentation and found a way to
just settle for the disability and cope?

How bad are the blocks? Do they hurt? I will probably get one soon.

Well, I'm given the option of sedation or not for the proceedure.
The very first one was attempted by a different Dr. than I have now.
He only used x-ray guidance and hit arteries & caused too much bleeding to
proceed. (1st & last time with that Dr.). That really scarred me!!

I found new P.M. Dr. who used x-ray & ultrasound guidance. I love her as my
Dr. and have stayed a patient. I always opt for conscious sedation (versed by IV).

It feels like a lot of pressure (hard to describe) and briefly a very uncomfortable feeling but not painful. The versed sort of relaxes me & I trust her now so it's o.k. You can't drive for the rest of the day & I always have a little spotty memory of the next 10-12 hrs.

I don't know that there is a way to cope if you just drop all meds and treatments. This disease just gets worse and worse the longer you have it. Every doctor I have seen tells me that the quicker it is diagnosed and treated the more the damage can be retarded.
I have had CRPS/RSD for 7 years and the best thing I have found is Ketamine infusions. They gave me back my normal pain free life. When I started them 2 yrs after DX, 40% of my body had CRPS and the pain had me bedridden and suicidal. I was on 100mg of MS Contin 2x a day, 40mg of Oxycontin up to 6x a day, a 75mcg Fentynol patch, Lyrica, Clonodine, Neurontin, and Topamax. After 6 months of infusions the pain was back down to the original site and I was able to come off all the meds (with the help of Suboxone). After another 2 infusions even the Suboxone was gone. I went back to work and life went on normally except for that 1 day a month.
Don't give up Hun. The place you end up is not pretty. I know feeling like a guinea pig is not fun but you can find what works for you so you can at least manage the pain.

Willow
May you walk in the eye of your Gods!

OMG, what an ordeal you've been through and so many meds !!
Thank you for your input & story.
So, how many Ketamine infusions over the 6 mo. period? Were you inpatient for them and if so, for how long were you admitted? Did insurance cover any part?
So far I'm able to avoid the narcotics except for P.T. Maybe I should wait until it gets that bad?

That's weird. Alzheimer's medicine isn't exactly known for helping RSD symptoms. That's just bizarre. I wouldn't take it but that's just me.I think they are just trying things. But I know what it's like in the 90's I was misdiagnosed (previous condition) and I was put on everything under the sun. I know that feeling of being a test subject.

Heather

If I understand correctly, Namenda is in the same family of meds as ketamine, methadone and tramadol - NMDA receptor antagonists.

Memantine treatment of complex regional pain syndrome: a preliminary report of six cases.

http://www.ncbi.nlm.nih.gov/pubmed/17314583

Az-Di - how much physical therapy have you done? I believe PT is the reason I am not in my w/c full time. I did 3x per week for one whole year. Expensive? Yes. Worth it? Heck yeah! I am off most narcotics. Take cymbalta, tramadol, lidocaine patches, voltaren gel and some percocet.and don't forget warm soaks in epsom salt / magnesium. I was offered topamax, but I didn't want to take it. I also have done several lumbar sympathetic blocks. Be well - Lottie

Oh, yes! Lots of P.T.!! They are worth their weight in gold! I was allowed 60
visits per year by insurance and used them up in 6 mo. so when I had to pay out of pocket I had to cut back. They feel I have reached a plateau of sorts so now I will still work to keep what I've gained.
P.T. is the only time I take Nucynta (narcotic).
I take pretty much what you take except tramadol, what is that?
Thanks Lottie!

Hi AZ-DI, tramadol is a pain reliever also known as Ultram. It works in a similiar way to narcotics but without many of the side effects. Glad to know you have been doing lots of PT. That is so important! I personally find it hard to stick with when I don't have therapy appointments & cannot afford to pay out of pocket. I try to schedule my exercises on my calendar as though I had an appointment with my therapist :-)

Hi AZ-DI, I hope your feeling better today. Though my several of my drs have confirmed more spread in my limbs, they are keeping me on the same meds but at higher doses. I hope that your drs can find a way to keep you as pain free as possible. Take Care.

Hi Az-Di,

I have tried most of the meds and treatments for CRPS over the years,and had the stellate blocks many times without too much trauma ...the meds are all trial and error as we are all different, and I agree that most of us will always need some from of meds to maintain.
What I do on my own, now that PT is off my books for insurance reasons, is adaptive Yoga... and it is helping so much! My body feels relief as does my mind. I also use magnesium supplement for my muscles and cramps mostly,but it does also calm nerves, somewhat. Short walks when I am able also help keep me going. I don't know. We just keep on trying!!

May we all have easing from this pain, :hug::grouphug:

Hana

Since I am newly diagnosed the first treatment so far is Gabapentin which is I think a antidepressant right? side effects tired all the time even if I cant always fall asleep, seems like more swelling then normal but it could also be just the rsd spreading again.

for pain coverage I have tried
Physical therapy but I was only allowed 15 visits a year. did have to relearn to walk apx 4 mo after the accident with one pt , i hated him he would use his body weight to force my leg straight. some of the worst pain ever.

second round of pt a year later this one insisted on icing :eek: my leg every time I left in more pain then when I entered but she was the first one who thought of rsd and correlated my reaction to ice and it.

medications i have tried for pain control without knowing it was rsd

baclifin (sp?) I had hallucinations but it did help with pain via cramp up.(off)
flexiril for spasms and cramp ups (on 10mg 3x daily)
naproxen for swelling- just takes away the worst of it.(0n 500mg twice daily)
vicodin - hurt my tummy (off)
norco- easier on my tummy and takes the top off the pain. (on one 350mg once daily)
lidoderm patch - works well (on only for the worst of flair ups apx 3 patches twice a month)

I am not on all these medication but i am still on some of them hopes that info helps.

AZ-DI
I was one of those they used for trial narcotics from day one and I took so many pills a day for the rsd they didn't have crps back then that I got sick of pills. Along with rsd I had a brain injury and ptsd so I sucked up meds like a vacuum sucks up dirt. I never refused any narcotics and I was fortunate to never get sick from them also. Before I had to go to detox I was on the fentynl <--sp? 100 patch and 120mg of oramorph pills a day. My shoulders and upper arms were so raw from the patch I couldn't use it any more. I took several medications used for other symptoms just for the side effects. Almost 19 years later I am off narcotics, methadone being the last for about 8 years am now scheduled for two neurotransmitters.

It is your body and your decision but if you drop all meds you may increase pain as you let rsd loose and you also may find it difficult to get "back" on meds if your doctors know you decided to drop all meds. They just might think your pain was manageable and not help you. I would think it over very carefully because long term rsd/crps patients in here can see themselves all over again through you . We all had that regime to go through AZ-DI but today they have a much better grip on meds for your affliction than they had 19 yrs ago. Sorry this is so long but I really think you need to evaluate where you stand before you jump! Best off luck with your choices and perhaps you should seek out a neurologist in a pain clinic... I hope your evening goes well and our answers give you positive thoughts. Hugs and smiles from another rsd brother.

Namenda 28 mg at night
Memantine 10 mg 1-3 times per day

Amazing!

I was diagnosed within 6 months of symptoms started pt and did that 6 months, have been on many meds including cymbals a, lyrica, and depression meds sorry can't remember all, gabapentin, clonidine, and many more. Swapped flexeril for bacoflen and take 20 mg baclofen 3x a day currently and can take up to 8 hydrocodone a day they are 5/325. Also have lidocaine gel I can use, and warmth hot showers, and arm brace which is neoprene with lining of fleece. I wish I could get better care, I hate taking the hydrocodone it causes headaches, dry mouth, wide awakeness and many more side effects. Seems dr don't wanna change me tho