Wow, I'm so sorry many of you have to take so many meds....that's rough in many ways. Must be difficult to tell the symptoms from the side-effects at times :confused:

I used to take a few, but my list is now only:

Lyrica 50mg twice a day.

I feel very lucky compared to you guys :o My pain can be pretty bad, but I'm mostly coping ok at the moment, and I've deliberately chosen a clearer head over pain relief, purely for work (cash) reasons. Some days I wonder if that's wise :rolleyes:
Things I've used but largely given up on:

Amitriptyline (effective for two months only, very dry mouth)
Gabapentin (terrible stomach problems)
Tramadol (only worked a few times, now just get a woolly head)
Lidocaine patches (only use for protracted bad flare, not v effective for me)
Codeine (kept for bad flares only, works a bit, regular use gave me digestive problems)
Diazepam (made me very sleepy and confused)
Various lesser pain meds. They work a bit for a headache or whatever, but don't touch the CRPS pains. Very strange pain type we have to deal with!

Good luck everyone and I hope you have a better day :)

Bram.

I'm glad you can manage without meds and wish I were in your shoes to do so!! Regarding it being difficult to tell the difference between symptoms and side effects.. well at least for me any side effects have been primarily; headaches, nausea, fogginess, sleepy, and dry mouth and agitation from some. The pain of CRPS for me, is the feeling that my muscles are being cut or torn down my thigh, like two hot wires are being touched together from my groin to just below my knee's, random extremely painful lightening bolt pain throughout my legs and never ending burning.. my right leg has been swollen since the day I awoke on the recovery table, it is cold and blue even though it burns and even the slightest cool air to hit my leg causes the hot wire pain to get substantially worse as does the swelling. The skin is so sensitive to the touch that I can't even lightly brush a piece of lint off my thighs etc., and these pains are constant every second of everyday .. So YES, I can tell the difference between the side effects and the pain of CRPS. I am still battling the shame I feel for relying on them - if I didn't I would need a padded room!

No one medication takes the pain away and in fact many of them don't do much to dent the actual CRPS pain. Some allow me to sleep a little longer and others allow me to enjoy intimacy or do a couple of chores, do my PT etc., without being in tears doing it. Sometimes the tears still come.. but not everyday like before.

Some of the side effects go away after our bodies get used to this new medication and very slow increases also prevent the side effects from popping up again due to the increase. Some side effects like dry mouth is annoying but the benefit of the medication might make it worth it to continue using it. Obviously that is individual and thankfully with that particular side effect there are remedies. For me, I will try a new medication only if there are 2 goals of the medication, and if any side effects subside given enough time or through dose adjustments. Like with the Butrans patch.. I vomited daily for over a week and then that finally went away, now I don't have a single side effect from it and it does two things: reduces pain intensity and it allows me to do more which in turn elevates my overall mood. When I tried Lyrica I was so agitated and suicidal this was not a good one for me.. very scary.

So glad you don't require so much and I hope this continues for a very long time!

Just like the symptoms of CRPS are different for everyone our medication choices and tolerance are all also very unique and it takes a ton of patience and trial and error to get a good combo in place.

Thanks for all of your input on this question. I forgot to add a few things so am doing that now so that you can also compare notes with what you're taking to if you want. The whole list is as follows:

Advil-200mg 2pills 3x daily
Percocet - 5/325 one pill 3 to 4x daily
Gabatpentin (Generic for Neurontin) 600mg mg 3x daily
Gabatpentin - 100additional mg taken 1x daily as needed for extra bad pain days
Alprazolam - (Generic for Xanax) 0.5mg 3x daily
Zoloft - 100mg once daily
And the two additional ones I forgot to list earlier are:
Dexilant DR 60mg once daily and
Vitamin D 50,000IU Softgel once a week
And Voltaren Gel - apply 2grams to wrist four times a day as needed

Thanks again for all of your input and I hope we can all maybe take less someday soon. It's starting to flurry here and is freezing out! The snow's coming I can feel it!!!

Hi all! These are my medicines that I take.

Cymbalta 60 mg 1x a day
Lyrica 200mg 2x a day
Trazadone 150 mg 1x a day
Lorazepam 1mg 3x a day
Baclofen 10 mg 2x a day
Exalgo 12 mg 1x a day
Hydrocodone 7.5mg as needed
Oxycodone 7.5mg as needed

If you ask me, this is way too much medication! I just wish it didn't take all this medication for us to fell only a "little" better.

I don't like that I have to consume so much medication & I still can't stand for anything to touch my foot & the bottom part of my leg as it is spreading up the leg now. I haven't worn a shoe in 6 months, let alone a sock. It is now getting cold & I can't put anything on my foot & my meds only help a little bit, but not enough for a shoe......ugh!

Thanks Tessa. It certainly does take a while to get things manageable!

I want to just make it clear that although I don't have the pains you describe every minute, I do have them on a regular basis and daily, and they are hellish, as you know :rolleyes: My problem is that my limited meds are to do with the fact that nothing I've tried so far has had enough effect on the symptoms to make them worth taking. All were tried under supervision of my pain doc and all given a chance to build up and get past the early intolerance issues. Last time I saw her we discussed the fact that my choices for meds are very limited now unless I go the route of opioids - and given my limited experience with them, and with the way my body has reacted to other meds, they would almost certainly rob me of the ability to work in the way that I can at the moment, and more importantly the ability to be the kind of mum I want. I can't bear the thought of that so I have the pain and a clearer head. When my kids have reached adulthood, I'll probably give the opioids a try.

I'm not offended, and I'm certainly not comparing my pain with yours or anyone's. It's not that I don't require much - I wish it were! Although I hate taking meds, I must confess to wishing I could take something that actually helped more. Ironically the low Lyrica dose does more for me than when I was on a high dose. This is a strange disease, and as you say, we (and our bodies) are all very different ;)

I don't think me taking little meds makes me lucky or brave or mad or anything else lol, it's just the way me and my CRPS have worked out for now. I live in hope that me and my doc will find something that works better for me! I'd take that like a shot :p

Good luck everyone and have a peaceful night x

Bram.

Meds
 

300mgs Gabapentin 2in morn 2at lunch 4 at night
50mgs of tramadol 2in morn 2at lunch 2 at night
20mgs citlophram 2in morn
losec in morning

Natural
Meditation by Dr Jon Kabat-Zinn Ph.D Great book of his Full Catastrophe Living
Well worth a look if your open minded

And Cannabis when the pain is real bad which has been proven to help
neuropathic pain Rock on Peace out

Hi
 

No i Dont take that never heard of it i just wrote my list sorry i cant be of any help.

Hi Bram, I understand what you're saying. Everyone's different and Lyrica is a medication. It is similar to the Neurontin that I take. I take meds that don't help others and visa verse. The fact that you don't take as many other drugs as some of the rest of us, doesn't mean you're not suffering as much as the rest of us. You just can't tolerate certain drugs, plus the cost of some are hard to afford. My husband has a good prescription plan thank goodness or I would be in big trouble. I've tried some drugs others take like cymbalta and morphine that make me feel worse. I also am afraid to try the SCS because of fear of infection and my scoliosis. It helps some, but my neurologist and gp said not to do it. After my two surgeries I was given morphine and it didn't help and made me feel worse. Demoral seemed to help me more. Some people prefer morphine. We are all different, but not matter what we take or how much we take for our pain from rsd, we all have rsd and rsd is painful and stinks no matter what we do to try to relieve it. It is one of the most highest ranked chronic pain conditions in the McGill Pain Index. I understand how you feel Bram. Hang in there my friend and take care.

Hi Freebird, Thanks for your input. I think medical marajuana has become legalized in New Jersey and see you use it sometimes. I am curious about how this may help the pain. I think I may talk to my dr about it if it is indeed legal in the state I'm in. Thanks again for sharing your pain relievers with us. Take care.

lol.. in case it came across differently than intended I was not insinuating that you didn't have pain on a regular basis.. we all do!! What I was commenting on is what appeared to be a question:

I was just trying to say that at least for me none of the side effects compare to the pain inflicted upon us by CRPS so they do not cause for confusion of where the pain is coming from. I know I would trade a bag plum full of side effects over the daily pain CRPS gives me..

For new people fear of side effects can be harmful if what they hear keeps them from trying something that might work for them and that is why I tried to explain a little more about allowing for time and dosage adjustments. It wasn't to question you at all, really.

I would say you are lucky and brave!

Cheers,
Tessa