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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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#1 | |||
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Junior Member
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I was on gabapentin at 900mg for 2 or 3 months maybe and while it wasn't really doing anything for me I expected an increase at my next appointment with my PM. Since my neuro had originally prescribed it, she told me to increase it and we doubled. That was 2 weeks ago and I just hit 1800 this Thursday.
Here's the problem (and some people may not be interested because the topic is sex, but I'm putting this here specifically because of the number of us who use this drug), I can't orgasm anymore. I ended up curled up in my husband's arms last night sobbing like a child. I haven't had issues before so I can't imagine what else could possible be causing the problem. Is this something that is common or that anyone else has had? If it wasn't Saturday I'd be on the phone to my doctor. I have an appointment Thursday but if they have an opening earlier in the week I'll go. I'm so frustrated and angry that I'm on the verge of flushing my bottle of pills. I can't live like this. I can do all my medical problems, but I can't do this. I don't know what to do.
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"...it needs to be about 20% cooler." Celiac DX Dec 2012; over 30 years symptoms to DX CRPS DX March 2014; 5 years, 1 month from first symptom to DX |
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"Thanks for this!" says: | Russell (05-05-2014) |
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#2 | ||
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Junior Member
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I can't speak personally on this topic but I googled it and it appears as though it's not at all uncommon side effect of the medication.
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#3 | ||
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Senior Member
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I'm so sorry Adalaide, that is one side-effect no one wants...
![]() I know a lot of folk on this forum are on gabapentin and it works very well for them, but it's not right for others. I went on to gabapentin myself a while ago, and had to come off it because it wrecked my stomach. But....big but, I noticed a change in that side of my life as well, things just weren't the same, and I definitely wasn't sorry to be off the stuff. I was on lyrica before it at a high dose, and went on to gabapentin because my GP thought I'd have fewer side-effects (plus I suspect the fact that lyrica is expensive had a bearing on his thinking ![]() As Heidi said, ring your doc ASAP, and ask her opinion. Meds are a very personal thing, and each one of us has to find the right mix for them. I can only give you my experience and opinion. My pain doc said gabapentin was 'nasty stuff' after I'd come off it... Which coming from discussions about opioids and other strong stuff, hit home. You will find something that works for you, never give up on it. The search can be tough though... I understand your fear and distress completely. It's horrific when you feel like this disease might take something so precious away, on top of everything else it has affected. Try not to panic. That side of things sorted out pretty quickly once I was off it, and I've been fine since thank goodness. I have my fingers crossed that this is unconnected and a temporary issue for you. Sometimes stress and other factors can affect that side of your life more than you think. Take care of yourself, try not to worry, and let us know how you get on with your doc. Bram ![]()
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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#4 | ||
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The first time I was on gabapentin it took my libido way up. I think that's why we have a second beautiful baby boy lol. This time it took it way down as in no interest what so ever. It effects everyone differently. I'm glad my poor husband is in Korea for the year because I might have to change to a different med. I read somewhere when I was looking at side effects of the different meds used to treat this that it does happen to some people and some people have no side effect of it. It all depends on the person. I hope this helps some.
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#5 | |||
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Junior Member
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Thank you so much for the responses. It helps so much to know I'm not completely alone. I did decide today that doctors aside, I can't be on this medication anymore. I'm not stupid, and I know I can't just go off of it, but I also have been on it before and know how to start tapering which I will begin before my appointment Thursday and see if they can get me on an accelerated schedule. I'll end up criminally insane if this isn't resolved fast. Fortunately my husband is being very supportive and says that he wants this resolved as much as me.
I did get a little relief at least today for my pain. I had to go to my best friend's office because I trade work with her since I'm trying to start my own business. I showed up in tears because I got terrible cramps on the way there. She called a friend who does this whole essential oil thing and had her come right over. Now, I'm all fine with the hippie health stuff... I don't use shampoo or soap, but you can't help CRPS by rubbing freaking oil on people's feet. I wasn't just skeptical, I outright thought it was stupid and a waste of time. But whatever, I humored her. Surprisingly I feel better than I've felt all week, more "hit by a truck" and less "hit by a string of trains." I hate it when I'm proven wrong. ![]() ![]()
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"...it needs to be about 20% cooler." Celiac DX Dec 2012; over 30 years symptoms to DX CRPS DX March 2014; 5 years, 1 month from first symptom to DX |
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"Thanks for this!" says: | Allanira (05-04-2014), allentgamer (05-09-2014), Brambledog (05-04-2014), eevo61 (05-04-2014), rachel's daugther (05-23-2014) |
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#6 | ||
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Senior Member
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Lmao, I was just as skeptical, but it seems there are some hippie health freak things that actually make a difference... The first time the PM folk mentioned meditation, I rolled my eyes and thought 'here we go'...but in the end I think it's what got my mind and attitude back on course, which helped my pain more than any med I've tried so far. And I use the lovely essential oils in massage myself...smelling amazing certainly helps me in some way! I now go by the basis that anything that helps me feel good, in any way, helps my mood and my mind...and my pain
![]() So glad it helped even just a little. If it made any difference at all, I'd say it's worth investing in some and trying the self-massage thing. I can't afford to go and have a professional do it, so I researched self-massage on t'internet and did it myself ![]() Bram.
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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"Thanks for this!" says: | eevo61 (05-04-2014), visioniosiv (05-05-2014) |
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