Questions about treatments...
 

Hello I am new to forums, newly diagnosed with RSD but four year sufferer.

Welcome to the forum, sorry for the circumstances.

Gabapentin, like many other drugs, can be tough to titrate to the proper "effective" dosage, which of course varies from person to person. But it is critically important to get to that effective dosage and some doctors bail out too early.

Gabapentin is my mainstay drug for CRPS. I had to go up to 1800 mg (600 mg 3 times daily) before I found relief. What your doctor is doing is prudent.

I don't think the edema or creep of symptoms is being caused by the gabapentin.

There are other drugs though which can be effective for neuropathic pain such as Lyrica, Cymbalta, and others. You might have to experiment a bit to find the right drug AND the right dosage of that drug. Have you tried any other drugs besides the gabapentin?

I'd type more, but my carpal tunnel is acting up. Hope this helps!

No problem and thank you very much for typing through the pain to help answer my questions.

besides the gaba I am on
Flexiril 10mg 3x daily
Norco 325 mg once daily at night time but the bottle says every six hours as needed for pain.
Naproxen 500 mg twice daily.

I also have left over lidoderm patches which my doctor is holding off on refilling til she gets to know my case better. I really wish she would they work if i can keep them on by being still.

she wanted to put me on Baclofin (sp?) but I know from a separate injury that it causes hallucinations for me and not fun ones.

Gabapentin can cause peripheral edema. It does in me. So, yes, it can be causing the swelling.

Tonight after gabapentin last couple of days. It's usually not this bad. No other reason for it. It always happens when I take it.

Attachment 8129



Denise

That looks a whole lot like my leg its so swollen it feels like my toes are being curled upwards. So it can cause it, but not always even if it does sometimes? If that makes any sense.

Thank you, for helping .

You're welcome. Off the top of my head, I believe peripheral edema (like the swelling in my foot) is in the top three of adverse events, occurring in about 8% of people. I don't know the dosage for this adverse event occurrence. Mine is at 300 mg/day.

Denise

For you is it worth your pain reduction to keep taking it despite the edema? and you only take 300mg? my doctor told me to not even check in again with her until I am at 1800mg.

No, for me it isn't worth it. I have about ten lbs of extra fluid on my leg right now and I'm not very big. The swelling is *very* uncomfortable. I'm obviously not a good candidate for it, even at the low dose of 300 mg. Everybody is different though. I only take it when I'm way past desperate. I can't take narcotics or NSAIDs either.

oh wow I am so sorry, what can you do or take?

Second question.

Is there anything that can be done when barometric pressure is doing a rollercoaster and sending you into the upper tiers of pain? yesterdays weather sunshine, rain, sleet, sm marble sized hail, and repeat.

36 hours and counting no sleep due to pain lv 9 on a 1-10 . except for an hour long nap yesterday afternoon.

Please don't give up yet on the Gabapentin. It is not at all uncommon for this medication to take 4-6 for your body to adjust to it. If it does end up helping you with the pain control then it would be so worth it!!

Swelling can be caused by many other things. Have you tried soaking in a warm bath with about 2cups of epsom salt? Doing this several times per week can be really beneficial for swelling etc.,

Sure wish there was an easy answer for the Barometric pressure and its affect it has on us. I used to think moving to a warmer and more stable climate would help but, after reading these boards I have come to realize that even with better weather conditions the pain is still to great. Do you keep a journal?

Wishing you a the best possible day!

sleep glorious sleep
 

Sleep happened! some time after I posted 5:14 i found myself face down on my desk around 6:30 am pst went to bed, slept til noon! hooray!!! Exhaustion won out in the end. :D

2 cups? I have been using 1 but our tub is every shallow unless its so full any movement sloshes water out it doesn't cover the top of my thigh. Tonight I will try the higher salt content and see if it helps.

Yes I keep a Daily journal tracking pain, swelling, stiffness, activities, brief emotional state, and odd notes that how I found out beans cause swelling in me. It was also this last years worth of journal entrees that made it easy for my new doctor to understand and finally diagnose me.

Thank you maybe your well wishes were the ones that finally sent me to dream land by looking at the time stamp it very well could have been. :winky::hug:

Sorry, I just saw this. First, so glad you got some sleep. I'm pretty screwed with the pain meds. Even tramadol makes me sick on my stomach. If I get desperate, I take dramamine or use a scopolamine patch and have to have a full stomach and then sometimes I can take tramadol. Narcotics make me violently sick on my stomach no matter what I do. I have severe bleeding and bruising problems with NSAIDs now after long term steroid use for autoimmune diseases. Otherwise there's nothing I can take but tylenol which is not much.

The fellow at the pain med docs told me there were some newer generation meds similar to gabapentin for neuropathic pain that didn't have some of the side effects like the peripheral edema I get but they didn't want to give me anything until I'd had several sympathetic nerve blocks so they could see how they did. I had complications with pulse and BP on the very first nerve block and can't have more so that plan is dead in the water now and still no pain meds.

FWIW, I've found Delsym, a cough medicine which is dextromethorphan, at OTC dose does a pretty good job helping with some of my symptoms, both the local (pain and swelling) and systemic (unsteadiness, pulse and BP fluctuations, etc.) ones. It's an NMDA receptor antagonist like ketamine but much, much weaker. But it does help with sympathetic nerve pain and the other problems associated with it. It keeps me awake though. I still use it every day and take a OTC dose Benadryl at night to help me sleep.

I've also been using pharmaceutical grade DMSO diluted to 50% as a topical on my entire right leg for pain, inflammation and swelling. It's irritating to my skin so I usually only manage to use it once a day instead of three times but it helps. Some gets in your system so it may help with systemic problems as well. You just need to be careful that your skin is clean because it carries other things in with it.

Epsom salts in the bath do seem to help. I feel tingling (a good kind) in the affected areas when I soak in it that I don't feel when it's not in the bath water.

Hope this helps. Hang in there and good luck.

Denise

You to, I hope those blocks work for you, I can't imagine not being able to take my meds on days that i have run out or missed a dose oh boy i know it.

No, can't have any more blocks either :( BP and pulse too unstable.

So there is nothing really effective you can do? :eek:OMG that's horrible. Have you tried the special K coma? or could you try it? I don't know much about it but I have heard it is having relatively good results as a last resort treatment.

I'd certainly like to try some type of ketamine infusion but I'm having trouble getting that to happen. It would have been my first choice, cut to the chase treatment. At the pain specialist they wanted to do other things first like the nerve blocks and maybe SCS. However, if I can't have a nerve block, I'm not sure how many of these other procedures I can have either. I'm kind of inbetween old plan and new plan now.

It took nearly a year to get a diagnosis and it's now just over a year that I started having symptoms. I've been to 11 specialists. I'm pretty frustrated at how slowly everything has gone.

Yet, in many ways, as this disease goes, I feel fortunate that nobody ever tried to say it was all in my head or blow me off, because I had prominent physical signs -- mainly the ever worsening swelling in my right leg, now all the way up to my waist. In fact one specialist didn't think it could be RSD/CPRS because my leg was way too swollen. Another big part of the problem with diagnosis was I had no known precipitating event. For a long time they were looking for cancer, like a lymphoma. But doctors were always trying to get to the real root of the problem and I realize everybody who has this isn't or wasn't that fortunate. It's just taking too long for me to get to a point where I feel I'm actually being treated, and treated successfully. Reading these various forums I still feel lucky overall though.

So the answer is I hope eventually something will be done. But things are still in progress.

I hope you are doing better and getting some rest.

:hug::hug:
From what I am understanding there are a lot of risks associated with the Katamine treatment so that s why the hold it til last.

if i wasn't so far it wouldn't be half as hard to see the obvious swelling, I have always been chunky though so :p even when I was at my peak physically 19 trying to get into the air force I stilled weighed 20lb over what they wanted. I was just born a Harty Dwarven lass to a family of hardy dwarven people! :winky: Don't have that problem this last week it seems!

So a total of two years? with no precipitating event ? from all the stories I have hear it seems fast. I back read nearly all the intros ... had the time couldn't sleep and all that. Some made my cry :( some made me mad :mad: back on topic... it took so long for me to get diagnosed I too felt very let down when I found out there was no 'cure' and the only way get the correct treatment since its case by case is trail and error. so keep at it bug your doctors silly til they find something for you.

Has either one of you discussed and epidural infusion with your doctors instead of a ketamine infusion? That is part of what I have been doing for the past week. There are many supporting articles/case reports regarding the success of 4-6 epidural infusions and the principle theory behind it is similar to that of a ketamine coma but with much less risk/cost. I'd be happy to share specifics if either of you have any questions about it.

Tessa

Hope they work Tessa
 

Hi again Tessa, I hope your day is going much better and sleep is once again becoming your friend. I just was curious as to the infusions... Are they working for you, the ones you are doing now? I surely hope so. Keep us posted. Bright smiles and soft hugs Tessa.

No, I haven't spoken to my doctor about any other treatments yet I was only diagnosed February 19 and the gaba is the first treatment we are trying. and i would be happy to hear about another treatment option.

The pain cycle
 

I feel so stupid because i do it almost every time. Once i get a good day a 6or 5 on my pain scale i see all those back logged things and start in on them. creating the pain that will haunt me for days.

Today I was around lv 7. My cat was going nuts about the kitchen drawers so I opened them... guess what was in there not just utensils a mouse!:eek: He scampered to the back and was gone. I yanked all three out and there way back in the cabinet was a mouse hole! and my little friend had left a little present in every single drawer!:eek: so what does stupid me do... bleach and wash everything! Then even worse I got down on the floor and puttied over the hole. This sounds fast but it took nearly all day between the breaks I needed and the fumes. I ended up just laying on the floor for a quite a while afterwards until I could right myself again. I really need a flow chart or app or soething to tell me hey this is not a good idea stupid. Remember what happened last time.

How do you ladies and gents ever get out of that loopy cycle?

What's the medicine in the epidural? I've had several epidurals with steroid for back problems in the past that went well but that was before this RSD pulse and BP complication. Not sure I could get an epidural if I can't even have a nerve block.

Also, what if anything could this do to help systemic symptoms I have like the passing out from BP and heart rate fluctuations, severe Charlie horse like muscle cramps, bone changes (loss) in many parts of my body fron the RSD, etc.?

Has anyone tried this?
 

No Llynnyia I have never tried that heated knee pad.

I would however like to address your question about Gabapentin. I have been on it for a long time and had no side effects at all but that is me. We are all different in our metabolisms. I take 1800mg a day now 3- 600mg tabs . When I got off the methadone I doubled the Gabapentin to see if it would assist in the absence of the narcotic for the pain. Taking 3600mg of Gab----- a day did absolutely nothing to help the pain. I still take the 1800 mg a day though and they added new medication one yesterday. I now take 10 different meds a day.

Whatever you do, consult your doctor with any changes before you react with meds is my advice Llynnyia. I hate to say it but you can't prove the gab---------- caused the swelling until you take it again. I had to do that with Niacin. My face and neck turned bright red and wicked hot and we thought it was the Niacin. I walked over to my meds one night and grabbed one. My wife asked " what are you going to do"? I said "take one and find out for sure " She didn't think that was a good idea. As soon as that pill stopped going down my face started turning red . There we were....proof !! Before that we were only guessing.


Don't stop until you see or call your doctor and or make sure it was the medicine that caused the swelling . I wish you the best Llynnyia and hope your discomfort is more bearable. Smiles and hugs.

Hi Llynnyia,

I would try to continue with the Gaba for at least 4-6 weeks. Most meds will have one side effect or another but more often than not the body will adjust over a period of 4-6 weeks (+/- for each individual) of taking it regularly. Keep a log of your side effects along with the timing of when they start, then peak and then later taper this will help you and your doctor work on timing of medications to reduce unwanted side effects during waking hours if/when possible.

Hi cdwall,


The medicine in the epidural is a combination of Ropivacaine and Fentanyl & Saline which is continuously pumped rather than just one injection or bolus and there is no steroid in it. It isn't the same as a nerve block - I mean yes there are some similarities but also many differences.

I also have issues with low BP and heart rate so I am monitored very carefully for that and had an EKG prior to the first test injection to see if this was even a viable option for me. I am actually on the cardiac floor for the monitoring of the BP and heart rate - I have a heart monitor attached that is constantly watching all heart activity. My average BP is 84/48 but has been as low as 62/42 (see picture attached) and my heart beat is as low as 35-55 beats per min. I am sharing that with you so that you might be able to discuss treatments with your doctor that need closer monitoring rather than it being not an option. Like you - I also have spasms/cramps/tremors that sound cause uncontrollable jerking of my legs which is why I take baclofen and keppra those both really help.

Bone changes are also common with CRPS and made worse simply because pain stops us from using the painful body parts. My doctors and I discuss treatments that will not only reduce pain but also help me remain or enable me to be more mobile, so that I can combat the effects CRPS II is playing on my skeleton.

I'm not entirely sure if continuous epidural has been proven effective for RSD/CRPS or not since much of my research and treatments are for CRPS II/Causalgia.

I hope some of that made sense.. Tessa