To yoga or not to yoga?

[Julia]

Hi,

I posted a few times on the old forum and will share my story in the welcome section soon. Just wanted to ask a quick question about something that I thought was helping, but may be doing more harm than good.

After 2 years of pelvic pain, burning, and urinary pressure/frequency, I am now consulting with Dr. Gordon in Toronto about a potential PN entrapment. He thinks my symptoms are consistent with PNE but I have a nerve block scheduled for next week to help confirm this diagnosis. Everything else has been ruled out after seeing many many specialists.

Under Dr. GOrdon's care, I was prescribed Lyrica (pregablin), on top of the amitriptyline (elavil) 50 mg I am already taking. The Lyrica helped a great deal. I could sit longer, go for longer car trips, a lot of the burning sensation that I have at the end of the day was gone. But, I gained 40 pounds in a matter of 4 months. A little extra weight may not sound too bad compared to being in so much pain, but I am under 5 feet tall and I was so uncomfortable,felt puffy, lost all self esteem, etc. My thighs now rub together when I walk which causes me to tighten up my pelvic muscles more and cause more pain. I started doing Hot yoga which helped me to drop weight quickly in the past, but despite attending class 3x a week and watching my diet, the weight would not budge. I made the difficult decision to come off the Lyrica, unsuccessfully on the first try, but just recently I was able to slowly wean off of it. Anyway, I'm off of it 2 weeks now and have lost about 5 pounds. I would like to continue yoga, but I have read that lunges, etc. are not good for PN. When I am honest with myself, I have to say that during hot yoga I feel great ( I think my pelvic muscles get nice and loose and warmed up), but then for the rest of the day I seem to have more discomfort & burning than usual.

I asked Dr. Gordon about yoga feeling certain that he would say not to do it, but he said it's no problem and that I should continue. This baffled me a little...a PN specialist saying that squatting, lunging, etc. is okay? I would love to hear other people's thoughts about this. What have your physical therapists/doctors said about safe exercises? Should I stick with just walking? I tried pelvic floor physio for 12 sessions over a year ago and it did not help me.

Thanks so much.
Julia

[Lernica]

Hi Julia,

Greetings from another Dr. Gordon PN patient! PaulSa and PelvisStressly are also his patients. There are a few other members who have not publicly identified themselves as such but who have also been in touch with us. Our club is growing by the day, unfortunately.

Most specialists are not very knowledgeable about exercises and prefer to refer their patients to physios for guidance. Dr. Gordon is no exception. Don't forget that as the director of the Wasser Pain Management Centre, he also has hundreds of other pain patients, most of whom do not have PN.

I think the general advice about exercise generally is "if it feels good, do it, but if it hurts, don't". So if your pn pain increases after yoga, you probably should modify it. I wouldn't say to stop it altogether, but maybe don't lunge as deeply or as long. For instance, you should not be bending over to touch your toes, as that can pull on the nerve. You should not be doing heavy-duty core stability exercises as that can also put pressure on the nerve. Any repetitive bending-over exercises should also be avoided. (e.g. rowing) (Likewise, I find that unloading or loading the dishwasher really aggravates the nerve.) For some reason, walking also increases my PN pain. In summary, in choosing your exercise, you should be guided by your pain.

My sole form of exercise these days is swimming -- front crawl only, not breaststroke. Many of us on the forum do it. It is a lovely meditative form of exercise, plus I love soaking in the whirlpool and having a luxurious hot shower afterwards. My pelvic muscles are so relaxed afterwards and I can be pain free for up to an hour.

I too dropped gabapentin because I was putting on too much weight, especially when compared to the little relief it was giving me from the pain. With this condition we have been robbed of so much, and losing my looks was just too much!

Take care.

[Julia]

Hi Lernica,

Thanks for your response, it is so great to talk to another patient of Dr. Gordon's. For a long time I have felt very alone. Have you ever talked about setting up a support group for Toronto area patients? If so, I would be interested. I am sure that we can learn a lot from each other and I look forward to speaking with you and others on this forum.

The most frustrating aspect about my pain is that most exercises don't hurt at the time. For example, I can do a whole yoga class without any acute pain or "ouch" feelings, but then I get home and the burning slowly comes on and pain sets in. It's so hard to pinpoint which moves caused the nerve to get angry. I will definitely follow your advice and avoid any deep lunges and toe-touching for now. Unfortunately, those moves are about 50% of my yoga class! Maybe I'll switch to walking, I was helped by walking at one point but just fell out of the habit in the winter.

The trouble with swimming is that I would have to drive quite a ways to get to a pool, and driving is the worst thing for me.

Did you have a nerve block through the pain centre? I am quite nervous about mine coming up next week!

Thanks again,
Julia

[Lernica]

Good luck with your block next week, Julia! I haven't had one yet; I've been on the waiting list for eight months, and just last week asked Dr. Gordon to make some inquiries to speed things up. Is Dr. Peng doing it? Be sure to let us know how it goes!

[calluna]

Just wanted to say, with regard to the weight gain on pregabalin/Lyrica - you are not alone! And thankyou so much for sharing this.

I've been trying to lose weight since the beginning of June, actually it is both of us here, my husband and me together. I had just started pregabalin/Lyrica, then. My husband has lost a good amount of weight, 25 lb now. And I have gained weight, ok it is only 4 or 5 lb but I have been trying so hard to lose - I needed to lose 30lb to start with, except that it is now 34 or 35lb. This whole issue has really been bothering me, I do not want to stay at this weight and have my clothes not fitting, and being uncomfortable.

I am so very glad to hear that you've been able to start losing weight now you are off the pregabalin - I have just started taking the dose down, after my surgery, and I hope that I am going to be able to shed some weight too.

We've got a thread going about weight loss actually - here.

With regard to the yoga - I agree, if it hurts then you shouldn't do it - and that includes if it gives you delayed pain. I have heard before that yoga is not usually recommended for PN, it is all the bending and stretching I believe.

[birdlife]

You're so right, Julia. I consider it a huge flaw in creation that muscles don't tell you you've overdone it till its too late! On top of that, chronic pain can set up neural pathways that remember and can establish a propensity for return. How unfair is that?!? .
I think you're very sensible to be hesitant about some aspects of your yoga class, especially the lunges and squats. When I bend I do it arabesque style ~ that seems not to irritate the nerve but I always make sure no-one's behind me . Laura says she bends frog-style, with knees apart, and that doesn't irritate the nerve either. So ladylike, aren't we on here!
I didn't get on with Gabapentin, though didn't take it long enough to put on weight (don't blame you one bit re your looks, Lernica!).
Calluna, please don't overdo things after your op. I know it would be completely wonderful if you woke up 30lbs lighter, but take it easy girl. And steady loss is more likely to stay off than fast loss ...
Hugs!

[Violet M]

Julia, I used to feel great during exercise but worse afterward. I think stretching the muscles helps them relax but stretching the nerve injures it. For some reason nerve pain seems to show up a few hours later or the next day. We've heard this over and over again on the PN forums. So, my thoughts are to be careful about stretching exercises including lunges if they make you worse afterward. Stretching exercises are what eventually pushed me over the edge from mild pain to full-blown PNE.

It was the same with PT -- felt better right after probably because it helped relax the muscles but later had horrible pain flares as a result of nerve irritation.

[birdlife]

For some reason nerve pain seems to show up a few hours later or the next day

Too right, Violet . My muscles ached after doing all that gardening but the return of pudendal pain was a good couple of days later and got worse during the following week. I so won't overdo stretching/lifting/bending again and am just keeping fingers crossed that I haven't tipped the balance, as you did.

[Julia]

Thanks everyone for the replies. I think in my gut I knew that yoga was making things worse, but I wanted so badly to feel normal again by attending the class! I used to be the tiniest in the class, now easily the heaviest. Ugh!

Just wanted to also mention that lyrica caused me to gain weight in places I have never gained weight before - upper stomach, lower stomach, fat rolls on back. I have always fluctuated between 95 and 105 poounds, gained 15 with amitriptyline then another 25 with lyrica!!

Lernica, if you do taper off lyrica, just go very slow as the withdrawal can be quite bad. I had nightmares and pain spikes when I tried to go cold turkey. Cutting down 25mg every week helped me to get off it without too much of the pain coming back.

Have my nerve block tomorrow. Scared, but hoping for some kind of diagnosis! I'll let you know how it goes.

[birdlife]

Good luck for your block tomorrow Julia, and please don't be scared! Think of all us here behind you