Health Organization for Pudendal Education

I have been taking 2400mg of Neurontin for several months now. I have widespread myofascial pain in conjuction to my PN pain. The Neurontin had been controlling my myofascial pain better, but the past month things have gotten out of control again. I started Cymbalta 30mg this weekend, but I had a horrible experience with it. I was so dizzy I couldn't even stand up and I had a horrible headache as well as nausea. I was so cold it felt like I was coming out of my skin (like when you have an initial goosebump reaction) I woke up in the middle of the night with such a bad headache and nausea that I couldn't sleep, but I was so drowsy during the day that I couldn't stay awake. I am a nurse and understand that these side effects can get better with time, but I couldn't care for my 18 month old daughter alone while on this medicine. I think it was just too much CNS depression for me. I am a small person and I feel like that is too much medication in my body.

I guess maybe I could decrease my Neurontin and then try to go back on the Cymbalta, but I was wondering if others who take both Lyrica or Neurontin and Cymbalta had similar experiences. I know everyone can tolerate different meds and different dosages, but just wanted to hear others experiences. I was hopeful that Cymbalta might really get my myofascial pain under better control.

Hi Faith,
I'm wondering why you think Cymbalta will help with the myofacial pain? I'm not saying it won't, I just don't understand why. Personally, I didn't have success with ANY med to treat that condition. I tried antidepressents, heavy duty muscle relaxers, valium, ativan and the condition spread wildly while I was on neurontin. I could be wrong, but I thought cymbalta, lyrica and neurontin were used to treat neuropathic pain? Do you have a history of fibro? I know you've mentioned that you do have those symptoms, but did you have them before your nerve pain?
Wishing you less pain,
Karyn

Karyn wrote:I'm wondering why you think Cymbalta will help with the myofacial pain?

Just because it's FDA approved for Fibromyalgia. Which I know is really more of a neuropathic pain condition, but it presents itself with widespread myofasical pain.

Karyn wrote:Do you have a history of fibro? I know you've mentioned that you do have those symptoms, but did you have them before your nerve pain?

No, you are correct, my "fibro" symptoms started after my nerve pain. But I do have a lot of the symptoms of fibro now and had a lot of predisposing symptoms my entire life. Many people think fibro is set off by a traumatic event and I believe that is what has happened to me. My traumatic event being my PT manipulation that caused my sacral burning and sitting pain. At the time I was also being awoken several times a night by a baby so my body wasn't repairing my overworked and tired muscles anyways. I pray and hope that my myofasical "fibro" pain will go away one day if my PN pain gets better, but I dont' know it may not so I am trying to find a way to live with it in the meantime by trying every med and treament modality possible.

Thanks for your input and kind wishes. I hope you are having a good day.

P.S. I was diagnosed with Chronic myofascial pain syndrome in September, but if you read about it it is more of a regional pain syndrome whereas mine is widespread. A lot of people who have chronic myofasical pain syndrome go on to get fibro. I personally think I just developed fibro, not chronic myofasical pain syndrome, but I guess time will tell.

Hi Faith,
You're welcome for the input and kind words. I soooo wish I had more to offer, though. Do you know much about fibro? I've got very little knowledge about it. However, I don't think many MD's have got a whole lot over me, either. When I was going through my myofacial thing, I was also diagnosed (incorrectly) with fibro. I can't really blame anyone for the wrong diagnosis - I had all the symptoms, except for the trigger points. For me, though, the severe fatigue was coming from:
1. Lack of sleep due to excruiating nerve pain
2. Side effects from meds that sap what precious little energy you've got left and make you even MORE tired
3. Plain 'ol being in pain 24/7! It's exhausting to hurt so much and try to carry on a "normal" life!
Even though it's also poorly understood, it was much easier for some of my doctors to wrap their heads around Fibromyalgia than it was Myofacial Pelvic Pain Syndrome.

Faith wrote:I was diagnosed with Chronic myofascial pain syndrome in September, but if you read about it it is more of a regional pain syndrome whereas mine is widespread.

Hmmm ... I was always under the impression Fibro was widespread. This is the first I've heard of it being regional.

Faith wrote:A lot of people who have chronic myofasical pain syndrome go on to get fibro.

Yes, I've heard that as well. I don't know if I agree with it, though. It's only natural for things to decline if something isn't treated properly and then add drug side effects ....

Faith wrote:I personally think I just developed fibro, not chronic myofasical pain syndrome, but I guess time will tell.

I think this is very important, Faith. I really do understand that these types of pain are foreign; not pain the everyday, average person experiences, so therefore very difficult to describe. You mentioned something over the week-end that has stuck in my head. You said you've got multiple muscular knots.
Where are they? I'm pretty sure you mentioned your neck and some areas on your lower back. (As if that's not enough ...) Anywhere else? Like abdomen?
Thighs? Calves? Now your forearms are hurting, too? Same type of pain? Do you feel muscle tightness in your face and/or forehead? Have you had fibro trigger point testing? I'm sorry to bombard you with all these questions. By all means, don't feel obligated to answer them if you don't want to. I'm just trying to understand. I was under the impression that fibro was caused or felt by over-active nerves just under the surface of your skin. So that, even light touch feels like a major blow. When I had the MPPS, it definitely felt like tightly clenched muscles. But my skin also felt bruised and beaten in the affected areas.

Faith wrote:my "fibro" symptoms started after my nerve pain.

Do you think it may be possible that your muscles are reacting to this unrelenting, debilitating nerve pain? And maybe the muscles won't be able to relax until that underlying cause is removed?

Faith wrote:Many people think fibro is set off by a traumatic event and I believe that is what has happened to me.

Yes, I've heard of that, too. Car accidents, surgery, etc... I don't disagree with the trauma part. But I think it has something more to do with the spine. That's where I think the trauma is really coming from. I have absolutely no proof of this.

Faith wrote:My traumatic event being my PT manipulation that caused my sacral burning and sitting pain.

Hmmm ...

Faith wrote: pray and hope that my myofasical "fibro" pain will go away one day if my PN pain gets better, but I dont' know it may not so I am trying to find a way to live with it in the meantime by trying every med and treament modality possible.

I think you're very brave, Faith. This is so hard and I admire your positive attitude.
Warmest of regards,
Karyn

Faith wrote:I have been taking 2400mg of Neurontin for several months now. I have widespread myofascial pain in conjuction to my PN pain. The Neurontin had been controlling my myofascial pain better, but the past month things have gotten out of control again. I started Cymbalta 30mg this weekend, but I had a horrible experience with it. I was so dizzy I couldn't even stand up and I had a horrible headache as well as nausea. I was so cold it felt like I was coming out of my skin (like when you have an initial goosebump reaction) I woke up in the middle of the night with such a bad headache and nausea that I couldn't sleep, but I was so drowsy during the day that I couldn't stay awake.

I had the same reaction with Cymbalta. It is primarily an anti depressant but my pain mangement Dr suggested it as it can also help nerve pain. I only lasted 2 days on it though and then gave up on it. I felt terrible on it ,my pupils were dilated the whole time.

Faith wrote:I was diagnosed with Chronic myofascial pain syndrome in September, but if you read about it it is more of a regional pain syndrome whereas mine is widespread.

Karyn wrote: Hmmm ... I was always under the impression Fibro was widespread. This is the first I've heard of it being regional.

No, I was saying chronic myofasical pain syndrome is regional, but Fibro is widespread. I was diagnosed with chronic myofasical pain syndrome, but my pain is widespread which is what is confusing.

Karyn wrote: You mentioned something over the week-end that has stuck in my head. You said you've got multiple muscular knots.
Where are they? I'm pretty sure you mentioned your neck and some areas on your lower back. (As if that's not enough ...) Anywhere else? Like abdomen?
Thighs? Calves? Now your forearms are hurting, too? Same type of pain? Do you feel muscle tightness in your face and/or forehead? Have you had fibro trigger point testing? I'm sorry to bombard you with all these questions. By all means, don't feel obligated to answer them if you don't want to. I'm just trying to understand. I was under the impression that fibro was caused or felt by over-active nerves just under the surface of your skin. So that, even light touch feels like a major blow. When I had the MPPS, it definitely felt like tightly clenched muscles. But my skin also felt bruised and beaten in the affected areas.

Chronic myofascial pain syndrome is identified by trigger points (tight painful knots) whereas fibromyalgia is tender points. You can however have myofascial pain syndrome in addition to fibromyalgia. Fibromyalgia has more of the fatigue and sleep issues. I have musular knots in my neck, shoulders, back, butt, calves, abdomen, arms....so about everywhere I also get headaches (probably from lack of sleep and knots in my neck) I can take deep pressure though which is typical of myofasical pain syndrome. A rheumatologist tested me for the tender points which I have most of. She believed I had fibromyalgia, but really it doesn't matter. I already take Neurontin.

Karyn wrote:Do you think it may be possible that your muscles are reacting to this unrelenting, debilitating nerve pain? And maybe the muscles won't be able to relax until that underlying cause is removed?

I hope so!

Faith wrote:I have musular knots in my neck, shoulders, back, butt, calves, abdomen, arms....so about everywhere

Oh, Faith! Warm, gentle hugs to you! Yes, that's definitely myofacial pain.

Faith wrote:No, I was saying chronic myofasical pain syndrome is regional, but Fibro is widespread. I was diagnosed with chronic myofasical pain syndrome, but my pain is widespread which is what is confusing.

No, not confusing at all. Myofacial pain may start as regional, but I beg to differ about it not being widespread. You're a perfect example of that. The myofacial conditions SPREADS. The way it was explained to me by various medical professionals is: you've got a problems with a particular muscle group. The bodies natural defense mechanism is that when one muscle group is in trouble, another group will rush in to help out, but doesn't alleviate the original muscle group. From there, a repetative chain reaction begins with more muscle groups trying to compensate for the affected areas; hence the spreading.
Make sense?

Faith wrote:I can take deep pressure though which is typical of myofasical pain syndrome.

Interesting! I couldn't tolerate massage at all! I'm really glad this brings you at least temporary relief!

I am about to start on cymbalta and lyrica after having nasty withdrawl from Gabapentin. Probably should have stayed with the Gabapentin BUT I wanted to see just how well my last injection was really working, seemed like a good idea at the time! I don't want to have 2 months worth of flu like symtoms coming off them again if I can help it.
Fingers crossed that the above work for me. Tramadol does seem to work for my muscle pain tho', although mine is only buttock muscle pain, primarily piriformis it's the nerve stuff that is so hard to address.
Take care
Helen

Hi Helen,
Thank you very much for contributing! I wasn't aware you could have withdrawal symptoms from Neurortin. Very interesting. The only thing I was aware of while discontinuing Neurontin was that you needed to wean off of it slowly, due to risk of seizures. I hope you're feeling better - 2 months is a long time to have flu-like symptoms AND PN pain.
Best wishes with the cymbalta and lyrica. I hope they work better for you.
Warm regards,
Karyn