Overwhelmed, Hurting so bad, What Next? Mind spinning!

[Len]

Len, sorry to hear of your bad situation.

I have found little relief in pain killers. Can't tolerate morphine or fentanyl at all (allergic). Hydromorphone (Dilaudid) helps a little. Demeral makes me sooo stoned. As an immediate solution, see if you can get a drug called sodium oxybate. It is the only thing that gives me any relief. It puts me to sleep, so at least I get a break from the pain for a few hours. The trade name for the drug in Canada and US is Xyrem. It is also known as GHB, the date rape drug. Don't know what the status is as a prescription in Israel. I know this drug has a bad reputation as a drug of abuse, but so do all the other pain killers. Sodium oxybate was originally developed as an anaesthetic for surgery, so it will put you out of your misery for a few hours for sure!

This is such a big help, thanks! I have gone to the hospital 7 times BEGGING for pain relief - last time my husband was in tears, begging them to put me in a coma on a respirator so I could get to sleep and some pain relief (got nothing - it was so hard for me to see my husband in such desperation too!).... sodium oxybate/GHB seems like it would have been the perfect solution.

Once I did get morphine IV, but it did not touch the pain at all, including the coccyx pain - now it makes sense to me because it is nerve pain, but at the time I was so confused how IV morphine could not touch pain. (Not one person in the ER could say that
"perhaps it is nerve pain"??? Ufffffffff....)

(Is pain management a problem in America and elsewhere? Never once could I get any sort of pain management in hospital. I was even admitted 4 times for 'pain management' but just took the meds I had with me (morphine and liquid oxycodone) - crazy.) Pain clinics are still rather rare here too and the wait is forever....

[Len]

But I think you need more info before deciding on a PN diagnosis. There are other things that can cause similar symptoms and it sounds like you haven't had a PN block yet or a proper exam from someone experienced with the disease.

Did you see my reply to birdlife? Is it common to get diagnosis by symptoms? (Even from American Drs.) I am making appointment for EMG other test (sent in request this week), and think I have found someone here who does do a PN block (however I have recently read in a few places that blocks that provide short acting relief to the ganglior impar area can also be used diagnostically....ahhhhh, the best 6 hours of my life!

Internal physical therapy massage helps some people with pudendal neuralgia but I think the suggestion that a 6 week's program of PT would solve your problems seems very optimistic. With your history of exercise it's good to at least be evaluated by a PT for any musculoskeletal factors such as SIJD that could be contributing to pelvic pain. I think it's reasonable to try PT but you want to have a plan B in case it doesn't help or if it makes you worse. I was not able to tolerate internal pelvic floor massage and gave up after it caused a week-long flare-up. My PNE was a result of exercise including the elliptical and it sounds like your problems could possibly be related to exercise too.

It seems very unrealistically optimistic to me that PT could even touch my horrific pains, but I am not an expert. Question, even if most of the pain is in the rectum, would internal floor therapy help this area too? (Sorry if this is a silly question, I am just learning how all of this is connected to the pelvis.) I am going to a pelvic floor physio place tomorrow, but the one woman there who knows about PN is on two week vacation. Any hints on what I should tell the woman I am seeing? Or things I should ask her to check for? Thanks!!!

Also unfortunately I don't have such a history of exercise - well not consistent for a while. I got so caught up in my career, hi-tech, sometimes sitting 10 - 15 hours a day.... crazy. I am pretty sure that is where this mess came from. However it did mention something on the MRI of the sacrum, I am almost certain about SIJD on both sides. I did ask at least ten doctors about it and all said it was nothing (including the #1 orthoped/spine surgeon in the country.... not that it means anything).

Have you checked at University hospitals in Israel to see if there are any interventional radiologists who do pudendal nerve blocks?

I just mentioned this on a reply to someone else, that we did find one person here who supposedly does this block. (The pain clinic dr I originally went to said no one does...). I called and this doctor is not accepting any new patients. Uffff! So I called his private clinic and have an appointment with him in one week. (So much for wonderful socialized medicine , it's great and free, unless you are in an urgent situation. Now I will have to pay him $300.00 to see him..... crazy. We have spent at least $6000 on the process to getting this diagnosed (by doctors (most a waste of time) that all could be seen for free, but the wait was too long), and this is in a country where all medical care is supposed to be free. )

Take care,
Violet

You too, thanks!!!!

[calluna]

Hi Len - just coming in on this - I was diagnosed by symptoms alone. No blocks, no tests of any sort. But my case was a bit unusual, the diagnosis was very clear right from the beginning.

With regard to meds - I know you have already said that you've tried everything, but your doctors seem to be focussing on opiates, which really are not first line or even second line treatment for neuropathic pain. Here is a link to a UK guide - have your doctors run through all this? I expect they have - but I thought it might be worth mentioning on the off-chance.

I do hope things improve soon for you.

[Violet M]

Did you see my reply to birdlife? Is it common to get diagnosis by symptoms? (Even from American Drs.) I am making appointment for EMG other test (sent in request this week), and think I have found someone in Israel who does do a PN block (however I have recently read in a few places that blocks that provide short acting relief to the ganglior impar area can also be used diagnostically....ahhhhh, the best 6 hours of my life!

Symptoms are really important in the diagnosis - probably the most important piece of the puzzle - but there are other illnesses with the same symptoms so you would be wise to get more pieces of the puzzle. Ganglion impar block is not specific for a diagnosis of PNE but since it gave you significant pain relief, you might want to consider a more permanent procedure as described on this website:

http://arizonapain.com/pain-center/pain ... par-block/
http://tinyurl.com/7ya7oof


Local anesthetic is usually administered for diagnostic ganglion impar blocks or for patients with noncancer-related pain. For patients who have a documented response to the administration of local anesthetic onto the ganglion impar, a therapeutic block is preformed with administration of the neurolytic agent like phenol. Radioablation of the ganglion impar is also another treatment modality for longer-lasting pain relief.

On our old forum we had a women who had a good response to a ganglion impar block. She went on to have a therapeutic block with phenol and the last we heard it had been very successful.

It seems very unrealistically optimistic to me that PT could even touch my horrific pains, but I am not an expert. Question, even if most of the pain is in the rectum, would internal floor therapy help this area too? (Sorry if this is a silly question, I am just learning how all of this is connected to the pelvis.) I am going to a pelvic floor physio place tomorrow, but the one woman there who knows about PN is on two week vacation. Any hints on what I should tell the woman I am seeing? Or things I should ask her to check for? Thanks!!!

A visit to a PT who is knowledgeable about PN could assist in your diagnosis. If you have pain along the course of the pudendal nerve when it's pressed on, that is one positive sign of pudendal neuralgia. Internal PT can help rectal pain if you have muscle tension in the levator ani muscles toward the back of the vagina. But with your extreme sensitivity, you might want to think of a visit to the PT as diagnostic and based on the assessment you could then decide whether it might be helpful therapeutically. Some pelvic floor PT's recommend kegals and strengthening exercises but you want to avoid kegal exercises and stretches that could cause a stretch injury of the nerve if you have an entrapment.

Regarding nerve blocks, I've not heard of many people experiencing a cure or significant improvement but there are a few people who have been lucky. I hope you have good results from yours.

Take care,

Violet

[Len]

With regard to meds - I know you have already said that you've tried everything, but your doctors seem to be focussing on opiates, which really are not first line or even second line treatment for neuropathic pain. Here is a link to a UK guide - have your doctors run through all this? I expect they have - but I thought it might be worth mentioning on the off-chance.

Thanks, this is extremely helpful. I have printed it out to go over with my family doctor.

I have tried lots of stuff before opids, but I do see my doctor isn't so educated on neuropathic pain - seems like it took a while for anyone to understand it's neuropathic pain, though not sure why it took so long... if someone doesn't respond so well to morphine (even IV), then there is a good chance it is neuropathic! Have started Lyrica (last week).

Thanks again.

[Len]

Hi again,

This is my last post/question, promise. You all have been so helpful.

1) Something amazing happened yesterday and today - the pain has gone from a 10+++ (even look at my first desperate email written on Friday) to a 4 -5 or so. After nearly four months of being paralyzed by horrific pain that has left me prisoner to my sofa, this is something amazing. Wow. I am still in pain, but it's more of a 'not-nice-nerve-discomfort-feeling-ache' than 'knife-stabbing pain'.

Is this something that happens? Pain levels go up and down? It's just that pain was sooooo horrific this past weekend, knives stabbing in rectum (even anus) harder than ever, plus lighting bolt pain moving to vagina area....

(Although now that I think about it, I have had pain levels go up and down a bit - last month went to the supermarket with my husband when pain was down a bit, and paid dearly for it with 10++++ pain for the next week, absolutely nothing helped it, same thing a few weeks ago....)

(My sister-in-law is getting married next week. Thought there was no hope in me going - could barely stand - now have a bit of hope. Keep your fingers crossed!)



2) A few of you have written that I have symptoms that can overlap other conditions, or that symptoms might not be 100% PN. Can you tell me which symptoms those are, or what else this could possibly be? I am asking because doctors are now stuck on the diagnosis of PN, and the entire focus is there. I do NOT want something else to be overlooked - that would be nightmare. Any reply on this would help me immensely so can speak to my doctors about it. Don't want to miss something.


Thanks (a million times!),
Len

[calluna]

So glad to hear that you are feeling some improvement!

You started pregabalin/Lyrica last week - I wonder if that is coincidence or not....?! But yes, pain flares can happen, level of pain goes up and down. Usually the pain is delayed, sometimes by a couple of days. I suggest that you stay with the lifestyle changes, ie avoiding sitting, having scheduled rests, using ice regularly - even though the pain is less.

By the way, you might perhaps find the Pain Scale helpful. I've found it very useful as people take it seriously if you can show them where you are on the scale. Also it is useful for keeping a pain diary, which can be informative and helpful when you look back on it, sometimes you see patterns that you didn't know were there at the time....