My PT said to massage the pelvic floor muscles gently, swiping your finger in the shape of a C. Internal pelvic floor work just caused flare-ups for me because I had a nerve entrapment, but it helps some people with tense muscles. Have you seen a pelvic floor PT yet?
Violet
Pudendus or Piriformis and tingling sensation into both feet
Re: Pudendus or Piriformis and tingling sensation into both feet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pudendus or Piriformis and tingling sensation into both feet
Update on my situation:
On March 24, I saw a neurologist and was prescribed Gabapentin for unexplained neuropathic pain. I take this 3x 600mg and it has helped me so far. I rarely had any symptoms and the frequency of urination has decreased. I had a much better life and the problem of cpps disappeared into the background. Actually, I should slowly stop taking the medication starting in the fall. Then in September I had a herniated disc L5/S1 and severe pain. That overshadowed the whole thing. After I reduced the pain through physiotherapy and exercises, the Cpps problem came back. In addition, the heating in the office was out and the cold gave me constant pain. In the morning it was only 10-15 degrees in the room and we heated with a hot air blower. The doctor said I should increase Gabapentin every 3-4 days, up to a maximum of 3600mg. I am now at 2700mg and unfortunately it no longer has any effect, but I do have side effects. I get sick and become very mentally unstable. I've also had kidney grit again for a long time, which irritates my urinary tract. For that I take Blanel so that it dissolves and it is part of my problem. After urinating, it burned again for a long time and the pain became very severe again. What could help me? Does Gabapentin become ineffective over time?
On March 24, I saw a neurologist and was prescribed Gabapentin for unexplained neuropathic pain. I take this 3x 600mg and it has helped me so far. I rarely had any symptoms and the frequency of urination has decreased. I had a much better life and the problem of cpps disappeared into the background. Actually, I should slowly stop taking the medication starting in the fall. Then in September I had a herniated disc L5/S1 and severe pain. That overshadowed the whole thing. After I reduced the pain through physiotherapy and exercises, the Cpps problem came back. In addition, the heating in the office was out and the cold gave me constant pain. In the morning it was only 10-15 degrees in the room and we heated with a hot air blower. The doctor said I should increase Gabapentin every 3-4 days, up to a maximum of 3600mg. I am now at 2700mg and unfortunately it no longer has any effect, but I do have side effects. I get sick and become very mentally unstable. I've also had kidney grit again for a long time, which irritates my urinary tract. For that I take Blanel so that it dissolves and it is part of my problem. After urinating, it burned again for a long time and the pain became very severe again. What could help me? Does Gabapentin become ineffective over time?
Re: Pudendus or Piriformis and tingling sensation into both feet
I'm sad to hear that your pain has gotten bad again. I have read that gabapentin can lose its effectiveness over time, but I haven't seen any scientific studies confirming that. Your pharmacist might be able to answer that question. You could try some other medication such as pregabalin (lyrica), duloxetine (an SNRI antidepressant), or buprenorphine which is a narcotic that doesn't cause a tolerance to build up. If your pain is primarily burning with urination, you could try a tricyclic antidepressant medication such as amitriptyline or an SSRI antidepressant. If you have tense pelvic floor muscles, you could try baclofen.
Violet
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pudendus or Piriformis and tingling sensation into both feet
Hi Filofax,
I'm sorry to hear about the uptick in pain. That is a high dose of gabapentin. I was on it for about two years along with other meds. My dose was much lower than yours (I think the most I took was 300 2x a day), but I became worried about the side effects. You also have to taper off of it very very slowly to avoid withdrawal problems. I tapered off I went much slower than the doctor thought was needed, because I was concerned about those effects. I found amitriptyline and nortriptyline pretty effective (main side effect for me was the need to sleep longer at night, but the component of also helped me get and stay asleep when my pain was bad). I also took a low dose of tramadol every day. It does lose it's effectiveness (so they increased it to a stronger drug at some point), but it is effective, had fewer side effects, and doesn't require the slow taper. To keep my tolerance low, though, I almost never took more than one a day. But, I think it's in the (low grade) narcotic category, so doctors may be reluctant to prescribe it now. Have you tried ice and/or heat as non-medicinal ways to deal with the pain? They were both very important for---and I still use heat (heating pad on high). There are also medications that reduce urinary frequency. I was on a couple of different ones (e.g., tolterodine), and both were effective.
Take care,
April
I'm sorry to hear about the uptick in pain. That is a high dose of gabapentin. I was on it for about two years along with other meds. My dose was much lower than yours (I think the most I took was 300 2x a day), but I became worried about the side effects. You also have to taper off of it very very slowly to avoid withdrawal problems. I tapered off I went much slower than the doctor thought was needed, because I was concerned about those effects. I found amitriptyline and nortriptyline pretty effective (main side effect for me was the need to sleep longer at night, but the component of also helped me get and stay asleep when my pain was bad). I also took a low dose of tramadol every day. It does lose it's effectiveness (so they increased it to a stronger drug at some point), but it is effective, had fewer side effects, and doesn't require the slow taper. To keep my tolerance low, though, I almost never took more than one a day. But, I think it's in the (low grade) narcotic category, so doctors may be reluctant to prescribe it now. Have you tried ice and/or heat as non-medicinal ways to deal with the pain? They were both very important for---and I still use heat (heating pad on high). There are also medications that reduce urinary frequency. I was on a couple of different ones (e.g., tolterodine), and both were effective.
Take care,
April