I have a lot of central sensitization along with my PN. Some doctors say it's fibromyalgia, but I don't think it's really fibro. Anyways, I wonder those of you who take muscle relaxants or medicines in the evening to help with sleep/muscle fatigue what do you take or what do you think works the best?
I have tried tricyclics (i.e. amitriptyline, desipramine), flexeril, ativan, bacolfen/valium suppositories. Some nights I sleep really well with my normal 800mg Neurontin dose at bedtime, but sometimes I wake up several times throughout the night and feel like I was hit by a truck when I woke up, every muscle in my body would work. I've been taking Ativan occasionally 0.5mg for pain and it helps a little, but I noticed when I took it at night I think I did sleep better and woke up more rested. I've been thinking about trying to get on bacolfen PO throughout the day as it is longer-lasting than Valium to help with some of my muscle issues. Any thoughts? Seems like my 2400mg Neurontin just isn't cutting it anymore (i wonder if one can build up a tolerance to it). I don't do well with Narcotics or Tramadol.
Muscle Relaxants
Muscle Relaxants
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: Muscle Relaxants
Hi Faith,
Would you be willing to try gentle massage to loosen up your muscles? I'm not suggesting "myofacial release" by a PT and I do NOT recommend any type of massage in your pelvic area. I tried all of the meds you listed (and then some) with no success. You may also want to consider that your muscles won't relax because of the excruiating nerve pain you're experiencing. It seems some doctors like to throw the "fibro" diagnosis at you when they don't know/understand what's really wrong with you. I don't think you have it, either. IMO, I think it's possible that your muscles are severly clenched by a specific response to the nerve pain. Your body is trying to protect itself. Until that underlying cause is addressed and removed, I don't see how the muscular component can improve a great deal.
Would you be willing to try gentle massage to loosen up your muscles? I'm not suggesting "myofacial release" by a PT and I do NOT recommend any type of massage in your pelvic area. I tried all of the meds you listed (and then some) with no success. You may also want to consider that your muscles won't relax because of the excruiating nerve pain you're experiencing. It seems some doctors like to throw the "fibro" diagnosis at you when they don't know/understand what's really wrong with you. I don't think you have it, either. IMO, I think it's possible that your muscles are severly clenched by a specific response to the nerve pain. Your body is trying to protect itself. Until that underlying cause is addressed and removed, I don't see how the muscular component can improve a great deal.
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Muscle Relaxants
When I realized how well valium worked for me, I tried the muscle relaxer Soma because the PA who does my meds told me that as a muscle relaxer it is much stronger than valium. However, although the Soma is a stronger muscle relaxant, it was not as effective for me as the valium. It couldn't hurt to try, but You might want to try oral valium seperately and compare efficacy vs. side effects, valium vs. muscle relaxer. I had more sedation with the Soma; the sedation from valium was very temporary and then I adjusted to it and feel normal even when I take a relatively high dose on "flare days". The adult dose of valium is up to 25mg daily, so if you are on less, you might want to work on weaning yourself up to a higher dose and see if it benefits you more than a muscle relaxer would.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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- Posts: 157
- Joined: Sat Sep 18, 2010 3:12 am
- Location: Oklahoma
Re: Muscle Relaxants
A pain management doctor told me the muscle relaxer Zanaflex also has a small effect on the central nervous system and thus an analgesic effect also. It's a fabulous muscle relaxer for me, but I could only take it at night because it knocked me out.
Lauren
Lauren
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
Re: Muscle Relaxants
When Valium helps us, as it does myself, one tends to think that the muscle tension in the pelvic floor is causing all of our issues. i.e. that the nerve is being compressed by muscles that are in spasm. I know that does not seem to correlate with surgical findings, but it is interesting that Valium helps so many of us with nerve "entrapments".
cari
cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Muscle Relaxants
Valium also has an effect on the central nervous system, I'm not sure if anyone really understands its role in pain control. But I do know that I felt better for about a week after getting an impar ganglion block, which the Doc told me means that my autonomic nervous system is involved in my pain syndrome. The autonomic nervous system is also involved in anxiety disorders, which is what valium was originally designed to treat. I really don't know what valium does centrally, but I know abrupt withdrawl (vs. weaning) after prolonged use of a high dose can lead to a withdrawl syndrome which might include seizures. So, it is definitely a centrally active drug, and only a very mild muscle relaxer.carolynm wrote:When Valium helps us, as it does myself, one tends to think that the muscle tension in the pelvic floor is causing all of our issues. i.e. that the nerve is being compressed by muscles that are in spasm. I know that does not seem to correlate with surgical findings, but it is interesting that Valium helps so many of us with nerve "entrapments".
cari
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.