Thought I should post a quick update
 

Hi Everyone,

Sorry I haven't posted sooner but having a rough time since that physiotherapy experience. Pain levels have been pretty bad, sleeping is also all out of whack and to top it off now I am dealing with a horrible head cold.

Saw the doctor last week and she does not want me returning to that Physiotherapy program. She is going to get me in to see another Physical medicine doctor.

She has also taken me off of the Cymbalta as we thought it was doing nothing for pain...we were wrong. My pain has increased since I have come off it. She is starting me on a new medication Gabapentin (brand name Neurontin) and also Sertraline hydrochloride (trade names Zoloft and Lustral). Has anyone tried Neurontin? If so was it helpful for the pain? The Zoloft is for the depression I now seem to be experiencing.

She has also referred me to a CBT Clinic where I can talk to a Psychologist who specializes in chronic pain.

I have put off starting the new medications a few days as I am so sick with this head cold/flu and want to be able to tell if I am having any side effects or not when I start it. Hard to tell if you are experiencing nausea when you already feel sick.

Anyways just wanted to let you guys know I am okay... but still struggling here. I am hopeful though the new medications and therapy might help!

Take care
Karen

I'm glad to hear that you seem to be getting on the right track (and not going back to that horrible PT program).

I was put on Neurontin for a few months and it was absolutely useless at relieving the pain for me...but I know a lot of people DO get relief so it's just hit or miss. It also completely knocked me out, and unlike the Lyrica that side effect lasted for about a month instead of just a few days. I was even falling asleep while driving...which was pretty scary. But everyone is affected differently.

Hope you start to feel better soon. I think there's nothing worse than getting sick on top of being in pain and trying to start new meds, etc. Fingers crossed that you get better quickly and that the new program works out better for you.

:hug:

Hi Karen - as I recall, you have a lot of same symptoms as me - RSD of the upper extremity, the cervical spine, with bouts of severe head pain if I used my arms. my RSD eventually ended up in the occipital area of my head and my right leg.

I tried both Neurontin and Lyrica (the newer form of Neurontin) before going on Topamax. Topamax has been amazing for my head pain. It is often used for migraines. Even though I am in approx 80% remission from my RSD from monthly 2 day ketamine infusions, I still find that Topamax is extremely helpful.

Neurontin and Lyrica seem to be the most commonly used for RSD. They have a LOT of side effects, like weight gain and grogginess, check them out by googling them.

I take 60 mg of Cymbalta along with 200 mg of Topamax and .30 of Clonodine a day on a regular basis. As needed meds include Fiorcet, oxycodone, and an occassional Frova (a triptan for migraines). I really hope that this helps. Like I said, your symptoms were very similar to mine when I first got sick....

Good luck xoxo Sandy

Neurontin is the cornerstone of my CRPS medications. It has been an absolute godsend for helping me with my symptoms.

As you are quickly learning this is such an extremely individual issue that what works for one, may or may NOT work for the next. There is usually a lot of "trial and error" with finding the right medications. Don't be afraid to experiment and don't just "accept" what they prescribe. You have to fight a bit sometimes to try what is available to you....

Neurontin works great for me, I had some minor side effects when I started such as dry mouth and a little grogginess, but those effects went away with time. No weight gain or anything along that line.

From the doctors I have used, neurontin (gabapentin/generic) is often a first line drug that is tried for neuropathic pain like CRPS.

If you do try it, the generic of neurontin (gabapentin) works well, and one whole heck of a lot cheaper! Dosing of 3-4 times a day is best, as it has a pretty short half/life (wears off fast)

Good luck to you!

Hi Karen, I just wanted to throw out there that I did have some problems with Neurontin. It caused me to randomly pass out. It was not very effective for my pain relief, but as many others stated, drugs do work differently for different people.
That said, good luck with the cold of the northwest. It has been hitting us pretty harsh here in Ohio. Lisa

Hi Karen,

I've been on Neurotonin since I was first diagnosed with CRPS...except for a short break in which I tried Lyrica...and it has helped a lot. I wasn't able to afford it for awhile and believe me, I noticed a huge difference between my pain on Neurotonin and without....each medication works differently with each individual....I had a few side effects when starting but now besides the pain I've only noticed a difficulty in finding the right words when talking or typing and I have memory lapses occasionally. Both in which I'm told are also symptoms of the disease :confused:

I hope your medications work for you and get you a decrease in your pain. None of us should have to suffer and hopefully there will be a cure one day!

I am on Neurontin for the 2nd attempt and find I cannot get past the feeling of exhaustion. I have insomnia and when I finally fall asleep (never for more than a couple hrs. at a time) when i wake for the day, I feel like a walking zombie. I hate this medicine. I tried Lyrica as well, which caused my vision to be blurry all day/night, so I had to stop that. this is why I am trying Neurontin again. I am going to ask my Dr. about topomax since my migraines are getting out of control. It would be great to find a medicine that works for the pain w/out side effects, but that is asking for too much!! I do take cymbalta 60 mg 2 times a day...no real side effects for me, but not sure it is helping!! good luck!!

Thanks for the responses everyone!

Well I am on day 4 of the new medications and unfortunately it is not going so well. Problem is starting 2 medications at one time you are not sure which one is giving you the side effects or not. I think I am going to cut out the zoloft for now.

I am experiencing extreme dizzy spells to the point of almost passing out. Also I am having some real stomach upset. I am going to try to stay on the Neurontin alone and see if the side effects clear up. I am not finding any relief from pain as of yet...but again I will give this medication a chance.

Will keep you updated to let you know how it goes!

Thanks again,
Karen

Oh one other thing I was wanting to ask, did any of you find you had some pretty bad mood swings on this medication? One minute I seem fine then the next I am biting the head off someone or in tears... this is very unlike me. Unsure if its the medication or maybe just the stress and pain I am experiencing.

Take care

Sorry to hear that the medications are not working out so well for you. I know that when I was on Neurontin it didn't help and I had EXTREME exhaustion from it. Unlike the Lyrica side effects which lasted only 3 days...the Neurontin effects lasted over a month.

I know that some medications cause mood swings but I do not remember which ones. I've never experienced it myself thank goodness...but you can check online to see if any of the ones you are taking can cause the mood swings.

I hope everything gets resolved quickly for you. Nothing worse than being in pain and having to deal with trying new medications to relieve it..and them not working. Please keep us posted. :hug: