Pelvic floor pain

[Phoenix boy]

Hello all,
Has anyone else suffered from this persistently? Any advice?
I have recently been diagnosed with fibro, I also suffer from Ankylosing Spondylitis, Sjogrens, adult onset asthma, too.
I have been taking biologics for nearly 20 years now with relation to my A.S, been on many different types, as their effectiveness has wore off over time.
I suffer from many trigger points of pain, but over the last 10-15 years my pelvic floor area has been painful to live with. It first started off around 15 years ago when I used to mountain bike a lot, so I stopped the cycling, pain cleared up. Started jogging, pain within this area started up again. Stopped jogging, pain went away again. Now it's back and over the last 5 years or so, even walking triggers it off or lifting etc. So my mobility has become greatly effected. I've had an MRI scan, didn't really show up much within the affected area. So exercise seems to trigger the pain, which seems to go against what most specialists suggest.
Medication I've tried with relation to treating fibro, Amitriptyline, which seemed to have helped, but made my eyes even dryer than what they normally were, so discontinued it. I've tried Duloxetine, but effected my stomach, so stopped that, too. I've also tried gabapentin, again had stomach issues with that, so stopped taking it. I'm considering trying amitriptyline again, as I'm sure it helped a little with the pain. The pain feels like possibly enthesitis or possibly tendon/muscle related pain.
I initially thought it may have been chronic prostatitis, but had the obvious checks, doesn't seem to be that, either.
On top of this I suffer from many other areas of pain, but this one seems to be effecting my mobility the most or lack of it. I'm 55 now & I've tried to stay as active as possible over most of my life, but these last 5 years or so have been more of a struggle within that department.

 

[Auriel]

Hi phoenix boy welcome to the forum I can't comment on some of the things cos I'm a girl but I have fibro and cfs and I take gabapentin too (I know someone who's had A.S since birth they're nearly 50 and manage really well with it (much better than I do with my fibro anyway) I'll call 2 of our boys (see if they've got any more insight : ) @JayCS and @Badger ️

 

[Phoenix boy]

Thanks for your reply & welcome. I'm an expert on A.Sas I've suffered from it from the age of 21, I'm now 55. Fibro is new to me, though, we'll I'm relatively newly diagnosed, but may of suffered from it for longer than I've realised.

 

[Auriel]

Could have? (it's hard to say when you've got overlapping conditions) hopefully the boys will see my message soon and say hello

 

[Badger]

Hi Phoenix, I'm sorry to hear about the longstanding pain that you have lived with, fair play to you for trying to stay active. I have found Fibro to be very irritable with exercise. It is a very difficult balance to maintain while becoming evermore deconditioned. I haven't had pelvic floor pain as such, but do have discomfort in those muscles since trying to treat a bladder issue with exercise.

It is a shame that you had nausea with the medications, my stomach is temperamental but fortunately I can take Lyrica (similar to gabapentin). It helps with the burning nerve pain in my arms. Amitriptyline helps towards sleep, it might be worth you trying again if you had some benefit. The side effects are irritating but do calm down in time although it can take several weeks. It sounds like you have your hands full with Fibro on top of other painful issues but keep your chin up.

 

[Phoenix boy]

Badger,
Thanks for your kind words. I've always seemed sensitive to medication, amitriptyline did seem to help after being on it for a while, but then I was waking up at night with my eyes feeling dryer than normal, even with using my artificial tears, still became very irritable.
I think I'll give amitriptyline another go, I'd be happy if I could settle on say 25mg per day, as 10 did very little.
I don't ever expect to be pain free now, as that's unrealistic, but taking the edge off, as well you'll know makes all of the difference.
I feel better with rest, but I'm unable to rest all of the time, what I mean about rest is not stopping in bed all day, I just mean no racing around most of the day. I've had to make some modifications within my job to accommodate my health issues. I have found by staying at home all day prior to going into work to do a night shift actually gave me more energy to use at work. So I suppose we live and learn. Neither do I want to feel that I'm a burden to my supportive family, not that they've ever said that. Just how I feel at times, sorry can't do, not feeling up to it today. Something I dislike saying, but on occasion have to, now.

 

[Auriel]

Ooh I remember when they put me on amitriptyline (mixed with cocodamol) I had heart palpitations and lost the use of my legs for about 10 minutes, safe to say I didn't go back on them again
Ps I'm glad you got a supportive family

 

[Phoenix boy]

Ooh I remember when they put me on amitriptyline (mixed with cocodamol) I had heart palpitations and lost the use of my legs for about 10 minutes, safe to say I didn't go back on them again
Ps I'm glad you got a supportive family

Not good, I take occasional cocodamol, but does little to help with pain.

 

[JayCS]

amitriptyline did seem to help after being on it for a while, but then I was waking up at night with my eyes feeling dryer than normal, even with using my artificial tears, still became very irritable.
I think I'll give amitriptyline another go, I'd be happy if I could settle on say 25mg per day, as 10 did very little.

Hi Phoenix boy - you could try amitriptyline again, but I can't imagine 25mg being better for your eyes than 10. Like Badger says for some the side effects settle down. For me they got more and more until I was up to 8 after 4 months, none got better, several got worse. I managed to wean off pretty quickly, but needed over a year to get my weight back down. It was only helping me for sleep, but I found other things for that. Now I'm regularly getting really effective sleep, know exactly what to do, solve new challenges. But it took a few years to get there.
A big problem I see if the meds dull our brains - then it's no longer possible to track and analyze symptoms, triggers & treatment results. So I prefer pain with brain to no pain with no brain. Maybe though that's because I'm pretty "pain tolerant", have a high "pain threshold" and not too much brain fog (10-30%), so my brain still works thru the pain, but not thru meds (brain fog 50% or more).

I get that all "exercise" increases that pain. What about specific exercises for "pelvic floor pain" (youtube)?
I'm not sure where your pain is in relation to the tailbone - that's where my hypocentre is, but generally the lower back is stiff and needs specific exercises to mobilize it daily. I've always had a slight A.S. suspicion, because of stiffness in my lower back, but a rheumatologist excluded that and only a harmless spinal tumour was found in the MRI. So I'm wondering how you can have A.S. diagnosed but an MRI not showing pain there?
But my lower back pain or "severe unrest" (which can get extremely yucky, much worse than pain) is triggered by sitting and in bed, so I have to use specific postures for those as well (twist-stretching and avoiding contact longer than a minute or two). Cycling, jogging and walking is also limited, but for several reasons, so no jogging or walking, cycling slowly, usually under 20 minutes a stint, but table tennis, gardening and if I'm up to it, a short "7 minute" workout, and lot of twist-stretching, all things that don't burden my lower back.

 

[Phoenix boy]

Hi Phoenix boy - you could try amitriptyline again, but I can't imagine 25mg being better for your eyes than 10. Like Badger says for some the side effects settle down. For me they got more and more until I was up to 8 after 4 months, none got better, several got worse. I managed to wean off pretty quickly, but needed over a year to get my weight back down. It was only helping me for sleep, but I found other things for that. Now I'm regularly getting really effective sleep, know exactly what to do, solve new challenges. But it took a few years to get there.
A big problem I see if the meds dull our brains - then it's no longer possible to track and analyze symptoms, triggers & treatment results. So I prefer pain with brain to no pain with no brain. Maybe though that's because I'm pretty "pain tolerant", have a high "pain threshold" and not too much brain fog (10-30%), so my brain still works thru the pain, but not thru meds (brain fog 50% or more).

I get that all "exercise" increases that pain. What about specific exercises for "pelvic floor pain" (youtube)?
I'm not sure where your pain is in relation to the tailbone - that's where my hypocentre is, but generally the lower back is stiff and needs . For these I need specific exercises to mobilize it. I've always had a slight A.S. suspicion, because of stiffness in my lower back, but a rheumatologist excluded that and only a harmless spinal tumour was found in the MRI. So I'm wondering how you can have A.S. diagnosed but an MRI not showing pain there?
But my lower back pain or "severe unrest" (which can get extremely yucky, much worse than pain) is triggered by sitting and in bed, so I have to use specific postures for those as well (twist-stretching and avoiding contact longer than a minute or two). Cycling, jogging and walking is also limited, but for several reasons, so no jogging or walking, cycling slowly, usually under 20 minutes a stint, but table tennis, gardening and if I'm up to it, a short "7 minute" workout, and lot of twist-stretching, all things that don't burden my lower back.

Thanks for taking time to reply.
I was diagnosed at 25 with A.S, took 4 years, back then I had the usual blood test, x-rays that was it. My MRI recently (my first ever), didn't show any active inflammation present, did show I had some osteoarthritis present, previous damage caused from my A.S. I didn't actually see my MRI, just down to interpretation from my specialist.
I've been on and off biologics for around 20 years now, maybe the reason the MRI didn't show any active inflammation present, but I've suffered from continuous chronic pain from the age of 21. Initially my A.S started at my sacroiliac joints, over the years seemingly progressed to lots of other areas around my body, including my peripheral joints. My has A.S also effected my eyes, around 15 years ago I experienced my first iritis flare, due to having the wrong diagnosis I waited too long to go to eye A & E, caused permanent damage to my right eye, I'm now left permanently photophobic within that eye, have to wear sunglasses both indoors and out to cope with my extreme light sensitivity within that eye.
Now recently my Rheumatologist has diagnosed my with secondary fibro, reason I decided to visit the forum.
Besides my current biologic I'm not taking a lot of meds, occasion nsaids (can't tolerate continuous use of them due to stomach issues), even when using an inhibitor. I also take occasional cocodamol, that's it.

 

[Auriel]

Has anyone ever offered you alternative therapies or holistic/homoeopathic things? Also have you tried hydrotherapy? My friend said his spondulitis is gonna get worse and he might end up in a wheelchair! (Though right now he has the ability to paint people's rooms/walls)
️️

 

[Phoenix boy]

Fishing is helping, actually does, just gives me a new focus, instead of my family & work, pushes me out of my little protection bubble.
I've tried acupuncture within the past, didn't help. Just by pure luck I'm having some hydro therapy now, fortunately through the nhs for free. I've stretched muscles I never though existed
I have empathy for your friend, as I do with anyone that suffers from chronic pain. Yet at 25 I wasn't prepared to accept my A.S, little lone think about how I'd end up at 55I have learnt no matter what you do, sometimes things are inevitable with regards to disease progression. A lot of it is just down to pot luck how far it progresses, no matter how well you eat & exercise. Obviously trying to stay as positive as we can helps, not always possible though.
It's not actually until it actually starts effecting your mobility that you realise how bad it actually is. Just like a lot of things in life we tend to take for granted.
How do you cope with your fibro & how does a typical day feel to you with regards to your pain levels?

 

[Auriel]

Past few days have been a bit challenging I get a pain at the bottom of my back sometimes, it feels like I'm being constantly kicked in the back by a toddler with steel toe caps! My fibro's variable (I find after I've had a bit of sleep from the gabapentin I can do a few things, cos that's the best time) the cfs can be challenging cos it strip's of all your energy and there's nothing you can do about it (but I have been going for walks the past fortnight so that's made a difference and I've lost some weight too, so bonus ) our member @Harpy goes fishing too! (Maybe you can have a chat about it sometime)

 

[Phoenix boy]

Thanks for sharing a part of your daily life routine. The ups & downs of life can be challenging, I hope your pain & energy levels improve for you within the future.
I'm now trying to save energy to use if more efficiently, if that makes sense? I've forced myself to stay at home today, mainly due to my pain levels being high & my mood/energy levels being low. So hopefully tomorrow would be a brighter day, it's not just myself I'm constantly thinking about it's my family, too. As I don't want to become a burden on them. I feel so much brighter when my pain levels are lower. as probably do most people. With chronic pain it slowly drags you down, but I always fight my way back up again. I'm just going to have to lower my expectations in what I can physically achieve.

 

[JayCS]

I'm now trying to save energy to use if more efficiently, if that makes sense?

To me it makes tons of sense!

For moving I now use much less muscle power, more gravity, rebound effects, jerks, sliding up and down and all kinds of aids. I think before I move, and look for ways to reduce the effort. That greatly improves my scope, radius, envelope, whatever...

And more generally I use a lot of "slower energy" rather than any "fast", short-term energy, which decimates the total amount of available energy, so I track and get a sense of my "energy profile" on a day.

I'm no longer able to use the 100% intensity of energy like was even possible just from fibromyalgia alone. Then I could use about 3 hours of 100% intensity. I called these 3 hours "30% of what I used to be able to", assuming 10 hours of 100% of available energy per day. But it was often actually much higher.
(Even at my age I was able to exercise or dance harder and longer without breaks than most.)
Each of my CoV-jabs however took that 30-35% down to 5-10%, and even after months of "recovery" I lost 5% on the endpoint of available energy with each jab. Plus after the 3rd, different to the first two, seemingly not quite as bad, I gained moderate energy, but completely lost the availability of full energy.

So now I only need a few hours of rest interspersed, but only if I don't do anything long or quick, esp. walking or talking longer than 20 minutes. Same with workouts: If I keep the total time down to about 5 minutes and only use my moderate energy, I don't have much of a backlash. Depending on my energy status that may be my 40% energy on bad days (4' and a lot of 'cheating'), or on good days 70-80%.