Progresively worse - from nerve to muscles. Please help

[bunny]

Hi all!
I have been away for some time form the forum, trying to tackle things on my own.
As my condition is getting worse I am trying to figure out some ways to help myslef.
I know it is a long read but if anyone could advice me I would be grateful.

Starting some time ago I had two fissure and cryptitis surgeries (6 and 3 years ago). Not long after the second one I started having some tenderness in the muscle right next to my anus (legator ani/piriformis?) - left side - where the cryptitis/fissure were. year and haf ago I was about to move to London and started having candidia, which was hard to cure for a few months. During these months I found a job (office - sitting 9h/d), and after 1 month of sitting and huge stress of being in new place I stared feeling this burning in my anus and vulva and down my inner thighs. I kept on looking for help, but there was no infection. After a few times I went to see my physician (urn/gyn), she suggests that it might be pudendal neuralgia as felt pain while mostly while and after sitting but less troublesome or not existing when standing/lying down. she got me a referral to lumbar/pelvic mdi which shown only some bulging and 2 ovarian cysts, but no neural compression.
That was already around 6 months with this burning pain when I noticed some pain in my buttocks (especially left one - again. That was increasing the more and more when I went to work. By this time I googled this website and figured I should avoid sitting outside work.
Gradually the pain (both burning and sore buttocks) became so much that I had to go on sick leave (2 months ago) and got eventually dismissed from work. Recently I was diagnosed with piriformis syndrome, first only on left side, recently it's starting on the right side too. A month ago I got some meds from my gp - Lyrica and baclofen. I started Lyrica easy -7mg, and baclofen (muscle relaxant orally) first 15, then up to 30mg per day.When I was on 30 I got good comfort - still without ability to sit, but without the pain. Recentely I got to see neurologist finally, and she suggest for me to increase Lyrica, but wean of baclofen, but as I just started tapering it down I had such strong muscle spasms/ very strong piriformis syndrom and burning pain back again, I cannot go down than 22.5mg day.

Almost 2 months ago I found a PT here in London who help women with pelvic pain and she's been working with me. I have got a lot of trigger points, extremely tight muscles, and I am not progressing on the therapy. I have also been doing streching for 4 times a day. I decided to go for a swimming pool too.

I am starting to think that it might all be muscle problem, because as I was on 30 baclofen my burning/neuropathic pain got down to near zero (still not sitting of course, but we are talking about really short treatment). Also I have recently read that fissures occur to people with tight muscles/ unable to relax. But at this moment I know the irritated nerve is causing muscles to spasm and the muscle spasms press further the nerves. I am looking for ways to cope with this now, but I am so confused. Right before these horrible muscle problems I had months with just nerve pain, so…it's all hard to say

I would prefer to change baclofen for Lyrica, but I don't know how to do. I don't have a proper pain management.

I am on the waiting list to see Natasha Curran or Dr Baranowski (maybe looking at Feb 2014. I am not sure if nerve injection would be anything for me anyway.

Can anyone advice me on whatever I could do now? Ay ideas or thoughts.

Thanks

[mary jane]

WOW, your GP gave you lyrica? seriously, what is your surgery? Mine is awful, they barely gave me some ami, and I heard because if the damn nhs they try to force the cheaper drugs on you....I'm in london as well, I have seen 30 doctors so far and no help (not even pain clinic)

I have strong spasms/vibrations in my buttocks as well..
I would recommend the royal free hospital private pelvic therapists...they are not too expensive and they should be PN aware.
I can't think of any other helpful suggestions as I barely know what is wrong inside me

[bunny]

hi mary jane

my surgeries were 3 and 6 years ago (anal fissure and cryptitis+anal fissure), so long ago. I think my pain now might be connected to them somehow.
I see a Physiotherapist almost every week. She admits, she know not much about this pudendal nerve conditions, but who really knows? She is good anyway. My gp gave my lyrica, but I am just on 75 mg now because I had more of a muscle problem recently, and as I started taking muscle relaxants my neuropathic / pudendal pain got much better. Still I want to lower it's dosage and try to fore my muscles to lenghten just by stretching and physiotherapy.

Like you said, this is to hard to just figure out what are our problems. What spcialists have you seen so far? I just managed to see a neurologist, awaiting rheumatologist and pain clinic. What pain clinic did you go to? Have you seen any of PN aware doctors?

[mary jane]

hi bunny,

pain clinic? ahahaaaaaahhaahaha....they will NOT BE SENDING me to the pain clinic yet.
I 've been suffering like an animal for 3 months, I am at Marylebone health centre, all the doctors there are so useless.
I had someone at a GUM clinic tell me I have vulvodynia, a second gyn seen privately telling me it will go away, nothing serious (I paid 200 gbp for that)
My last gyn at St Mary's was crazy psychotic, would not listen to me (I had my pain start from an infection) and kept telling me I do not have pudendal nerve problems or vulvodynia. WHAT DIFFERENCE DOES IT MAKE? PAIN IS PAIN. I asked him to send me to the pain clinic. he said he can't until I have a diagnosis.

since my pain is basically deep labial pain (ugh) I suspect I have the genitofemoral involved....but my GP is stupid, I had to ask for amitriptyline myself, I cannot believe this is happening in London in the 21st century. I am student for f sake, I HAVE TO MAKE IT TO CLASS, give me bloody pills.
When I told my last gp I think I have pudendal neuralgia, she said "that is very rare" Well, guess what, lady? GENITAL PAIN IS ALSO RARE, does not mean I don't have it.

You know, I might be from East Europe, but at least there GPs are worth s.. we only see the specialists, we do not have to wait 4 bloody months for a gyn!!!!!!!!!!!!!!!

I hate gps. My first one gave CODAMOL! Codamol for NERVE PAIN, oh for the love of god and I NEED AN MRI I just want to cry
sorry for the rant

[bunny]

well... your rant is fine. I don't mind

For first half year of my pain I didn't know what it was, maybe after 2 months also some urogyn told me I had vulvodynia and that it would go away.
I recommend you a book my Amy Stein "Heal pelvic pan". It gives some hope.
Someone told me if you're not happy with your gp - change him. That's what I did. Take someone - your mum or someone close to go with you to the gp. If you have to go to you gp every other day and scream that you need pain clinic - do it (after 3 months of pain it's called chronic). If you gp gives you a refferal - call many times to the specialist appointment centre and stalk them to give you an earlier appointment. Ask for cancellation or last minute appointments. Sometimes it works. The only sure thing about this all is - that only you can do something about it, so don't rely on anyone.
And try not to stress out - stress increases your pain.
Thant's all I can tell you.

[calluna]

Hi bunny - just coming in on this discussion if I may, I do think that you are doing the right thing getting on the list for a review by a PN specialist.

First of all I would just like to say that I think it is appalling that you've been dismissed from your job because you were ill. I'm sure that you could have some redress for this, should you feel up to taking that road.

Back to Drs Baranowski and Curran - you mention nerve injections, and that you are doubtful as to whether they would be anything for you - I expect that you mean nerve blocks? The injections are most definitely not into the nerve.... The blocks are intended primarily to be diagnostic, and they do give useful information. I know you will have heard about the post-block flare that many people have - I can't speak about this from personal experience, but please don't forget that also there have been people who've had long term help from the blocks. So maybe not worry too much in advance?

It is so good that you've got a supportive GP, that's very helpful. I don't know what dose of pregabalin/Lyrica you are on at the moment? - you mention starting at 7mg, which is a truly minuscule dose. The usual starting level would be usually something like 100mg a day, split into two doses. So I can see why your neurologist was suggesting that you might want to increase the Lyrica.

With regard to pain management - you won't be moved to a pain management programme until 1) you've got a firm diagnosis and 2) it had been determined that there is nothing else that can be done to improve your situation. You are a long way from that yet! - in fact, you've hardly got started. There is lots more to try.

You ask for ideas and thoughts. My thoughts are that you should continue to wait to see a PN specialist, and in the meantime consider doing what your neurologist suggests, and increase the Lyrica to a level where it is likely to be having some real effect. The person to see about this would be your GP. It really is very important to get the pain under control.

[bunny]

Hi calluna,

Thanks for your advice. I appreciate it.
My dose of Lyrica is 75 mg but I am also on 20mg of baclofen (baclofen increases efficacy of Pregabalin). I also tried Amitryptyline but got all zombie-like and had to stop it. If I manage to get off baclofen, would increased Lyrica be enough? I am asking because I have some bad muscle problem (piriformis syndrome on both sides) and generally very tight pelvic muscles. Is Lyrica helping with this kind of problems? I thought it's mostly for neuropathies. For the moment muscle relaxation is what gives me most relief but my neurologist told me to stop taking it for some reason.

With regards to nerve blocks - you mentioned that also there have been people who've had long term help from the blocks. Do you mean that the got cured, or had just longer pain relief? I have only found info about some pain relief (up to few weeks or so). I am also scared of the cases when people got worse. I am not worried yet, but trying to thing about my options to have some answers when I finally see Dr Baranowski on Dr Curran. I am sure they would bring this up when I see them.

Thanks
Take care

[calluna]

I'm sure you are right that there might be something of a vicious circle going there - whether the muscle spasms started it, or whether the nerve irritation started it, almost becomes irrelevant. But as you had months with just nerve pain, before the muscle spasms joined the party - maybe that's significant. But what do I know?

I too wonder why the neurologist wanted you to stop baclofen. I have no idea about that med, I've no experience with it myself. Interesting to hear that it enhances the effect of the pregabalin, that's the exact reason I'm on topiramate. It makes complete sense that if you decrease the baclofen, then you are going to have increased pain because you are effectively reducing the dose of pregabalin and so you will feel more neuropathic pain. Plus of course the reduced effect on muscle spasms.

Pregabalin doesn't have any effect on muscles that I've ever heard about. But if the nerve pain comes under control, ie you are not getting any more nerve pain - because that's what pregabalin will do (hopefully!) when it is working as it should, then would not the general idea be that the muscle spasms should start to settle as well? But something has to break into that vicious circle, and it seems that at the moment nothing is really doing it for you. So something definitely needs to change, I really agree with you.

I'm wandering around in the dark here, making wild guesses - I hope you realise that!

Almost everyone with PN has a very tight pelvic floor, I do know that for a fact.

What does your GP say about all this? It might be an idea to go and see them, give them some feedback and see what they say.

With regard to nerve blocks - we've had people come on here and say - 'I'm cured!' after a series of nerve blocks. And then we don't hear from them again. It's not a common thing. Do they stay cured? We don't know. Best people to ask, Drs Baranowski and Curran. Because you can be certain that the people still hanging around on here are (mostly) those who aren't all better. And yes, flares after a nerve block are common, but the expectation is that they subside. Problems after unguided nerve blocks are very common. But reputable doctors like Baranowski and Curran don't do such things.

I think you are absolutely doing the right thing trying to look at your possible options beforehand. But I don't think that you should rule anything out yet, until you've had a chance to talk to the experts.

I do hope that you can get that pain under control soon.

[bunny]

Thans again calluna

I can see you know much about it. Unlike my gp, who is just generally guided by me. I kind of force him to give me some referrals or some meds, because he wouldn't know what to. He just keeps saying it's a nerve thing so it's enough to shovel those meds and go to neurologist. Luckily, thanks to this website I found out about such doctors as dr Baranowski or pelvic floor physiotherapist and medications that help people.
I know that my stressful life has contributed hugely to this (funny thing I had never realised I was so stressed and anxious until recently). So keeping calm during this stressful time now is also a challenge.
At the moment I will try to take down baclofen bit by bit while stretching my muscles. I also bought myself castor oil and will try to do some compresses. I have read that they can be helpful. And when I feel that I cannot go lower than some dose then I will stop. Time will show.

Take care
bunny

[bunny]

I am still working on my baclofen dose change, still doing a lot of stretching every day, physio every week and in the meantime I noticed as my legs become weaker some days (after I try to sit for a minute or more I get buttocks muscle pain and heavy thighs also with a bit of vulval/anal burning) and that I get almost no vulval (nerve) burning unless I sit. And I don't sit at all. I just tried maybe two times and once at the doctors. Do you think it's an indication of something or should I try to sit ever day for some short time to get used to it? What else can I do to help myself with the muscles?

I also have a 2h aeroplane trip ahead for Christmas and I am very worried about it. Any tips? I want to sit only during take off and landing but it's still around 30 minutes one way.
Please, any suggestions welcome.