IndianaFull-Time Wheelchair User and I can not take anymore.

[MelissaO]

I am 46, female and have Limb-Girdle Muscular Dystrophy. I have been in a wheelchair for 25 years and the last 9 years I have been full-time 12 hours a day. I work long hours. In February of this year I started having the burning, itching, raw, electrical shock and stabbing in my entire genital region, especially all of the lady bits. I have been to my PCP and my GYNO. I do not have any female issues like yeast or bacterial infections. My PCP put me on Gabapentin 300mg 4x a day and this is not working. My GYNO put me on lidocaine and it is barely working a couple of hours and wearing off. The Gabapentin makes me feel high and I hate it, but there is no way I could go without it. I need a PN doctor who knows about this condition and I can get a true diagnosis and treatment or I feel like I can't take it anymore. Does anyone know someone around my Indiana area and someone that would know exactly what to do?

Thanks,
~Melissa

[April]

Hi Melissa,

I'm sorry to hear about your pain. You can review the list of medical professionals on the home page to see if there is a pn specialist near you (physical therapist or pain doctor). You can also ask your pcp to refer you to a pain doctor, ideally one familiar with pelvic pain. I would also ask him/her to refer you to a physical therapist who treats pelvic pain. Urogynecology clinics often refer patients to pelvic pts so you or your pcp could call a urogynecologist to pt suggestions. I'm tapering off gabapentin right now, and it is difficult to taper off of in part because you get an uptick in pain. You also have to go very slowly (10% of your current dose per month) to avoid other side-effects, and many doctors don't realize this. Given your reaction to it (and I don't blame you. It's the only medication I regret taking), you may want to talk to the pain doctor about slowly tapering off of it and trying something else (e.g., amitriptyline, tramadol).

If you want to go to clinic with lots of experience diagnosing and treating pn, you might have to travel. Hibner and colleagues (in Phoenix) are a good option.

April

[MelodyW]

Hi Melissa,

I'm sorry to hear about your pain. You can review the list of medical professionals on the home page to see if there is a pn specialist near you (physical therapist or pain doctor). You can also ask your pcp to refer you to a pain doctor, ideally one familiar with pelvic pain. I would also ask him/her to refer you to a physical therapist who treats pelvic pain. Urogynecology clinics often refer patients to pelvic pts so you or your pcp could call a urogynecologist to pt suggestions. I'm tapering off gabapentin right now, and it is difficult to taper off of in part because you get an uptick in pain. You also have to go very slowly (10% of your current dose per month) to avoid other side-effects, and many doctors don't realize this. Given your reaction to it (and I don't blame you. It's the only medication I regret taking), you may want to talk to the pain doctor about slowly tapering off of it and trying something else (e.g., amitriptyline, tramadol).

If you want to go to clinic with lots of experience diagnosing and treating pn, you might have to travel. Hibner and colleagues (in Phoenix) are a good option.

April

Hi April,

May I ask why you regret taking the Gaba? Was this due to its ineffectiveness or the negative side effects? Which medications did you find helped you the most? If you're available, could you PM me?

[April]

I regret it because I've learned how harmful it is. I have also had side effects from tapering (fatigue, pain, short bouts of depression) that I'm sure would be much worse if I went more quickly (I'm generally using the 10% a month plan). I don't know if it works or not for me, but I don't think it's worth it even if it does work. I think amitriptyline is a safe medication. You can also get narcotics (e.g. tramadol) that work if you don't take them continuously. I think ice and heat are really the best, though. Sure, I'll pm you.

April

[Goldenturtle]

My name is Richard. I have been living in terrible pain for the last 10 years. I'm at the point finally where I probably can do the surgery with Dr Hibner. I spoke with him recently and he's in transition right now getting ready to start working at the new hospital in Phoenix. The reason I'm writing you here today is to tell you what I've been doing to take the edge off of my pain. I use the diazepam/baclofen suppositories. I also had my primary care doctor here in California prescribe for me 15 mg of extended release oxycontin. Additionally he's giving me another prescription for 5 mg oxycodone. I usually take the oxycontin at the same time I do the suppository. It takes about an hour but usually about 60% of my pain goes away at that point. If you ask Dr. Hibner to prescribe the oxycontin and oxycode to you, he will probably NOT do it. That's why I asked my primary care doctor here in California to prescribe that for me. I have been using the combination of these for the last 3 years. If it wasn't for the oxycontin and the oxycodone, I will probably be dead by now because there have been times when the pain is simply unbearable. So as I said previously I usually take the oxycontin at the same time I insert the suppository and if after about an hour I'm still in a lot of pain band I take the 5 mg oxycodone as well. If you're in a lot of pain I strongly suggest you give this a try

[cwb125]

I have a close friend who is in a wheelchair. We get along, in part, because we both understand what it is like to suffer from something. I cannot fathom having both conditions concurrently. Please know I will say a prayer for you and really empathize with your situation.