NEED HELP WITH PELVIC PAIN

[Barbella]

After 3 hours of sleep, my hip and lower back ache so badly, I wake up with pain. A nutritionist told me my diet will get rid of fibromyalgia and to change everything I eat. Can someone tell me if this is true. Also, does anyone else have this horrible pain at night. Each day it gets worse and I can see myself living like this in 10 years time. Need some advice from someone who may be going through the same pain. Thanks

 

[JayCS]

Hi Barbella, I think many of us will be going thru a pain similar to this....

I've got my back/hip pain pretty much under control, but it has nothing to do with my diet, it's due in the main to

• mattress, topper and under back/hip a lambskin, then with
• never lying on my back longer than 4 minutes (tailbone), lying in roughly rescue posture so contact is best,
• same when sitting in the daytime, too, avoiding tailbone contact, seats not too soft, not too hard,
• back exercises once a day and regularly twist-stretching to decrease the rigidity in my lower back,
• gently using a massage gun/pistol/gadget if need be,
• arnica cream or another topical of choice....

What happens at night we can improve in time - in the daytime as well as if we can't sleep anyway.
But when it's flaring we need to be much gentler: Short regular twist-stretches, easy on any quick movement.
To find the right back & hip exercises we can consult a good gentle physio or carefully try the many good youtube physios (always breaking it down to going low and slow, but youtube physios are better at that than your everyday physio, because they know they have to be careful, everyone's watching... - i.e. people in pain or who can hardly move).

If we can't sleep, but need to, NSDR (non-sleep deep rest)/Yoga Nidra can substitute it, even when in severest pain,
but as with exercises starting it is best done when it's not yet flaring too much. I feel more restored after NSDR than after shallow sleep.

It's definitely only rarely true that changing diet will get rid of most of fibromyalgia.
On the other hand, diet is worth a try, it as some evidence to help, and we may be reacting to certain foods.
Just a nutritionist won't know which diet is the one you need. A good one will guide
The most common helpful ones for fibro are

• generally healthy, i.e. as little processed foods as possible, praps Mediterrranean or Nordic diet, there is scientific evidence that this makes a bit of a difference.
• meat free, dairy free, or both = vegan,
• gluten free
• low fructans/fructose or the whole low FODMAP. (Fructans has scientific evidence for being a fibro problem.)
• one of the many kinds of elimination diets (IBS in some cases may be acting directly on back, e.g. via posture, but may also just be an area that can do with some improvement for the gut).

 

[sunkacola]

After 3 hours of sleep, my hip and lower back ache so badly, I wake up with pain. A nutritionist told me my diet will get rid of fibromyalgia and to change everything I eat. Can someone tell me if this is true. Also, does anyone else have this horrible pain at night. Each day it gets worse and I can see myself living like this in 10 years time. Need some advice from someone who may be going through the same pain. Thanks

It may be how your body is positioned while you are sleeping. Try different sleep positions.
You can try a memory foam topper on your bed
Deep relaxation techniques before going to sleep might also help.
You could also try a chiropractor if there is a really good one in your area. It may be that there is a misalignment in your spinal column that is causing this.
Acupuncture is another thing worth trying.

The nutritionist is wrong, and doesn't know much about fibromyalgia. Very rarely does a diet change get rid of fibromyalgia if that is truly what you have. However, dietary changes can help a lot if there are things in your diet that are triggering flares or exacerbating your symptoms. The best thing for you to do with regard to diet is to experiment with your diet to discover what works best for you. What is always true is that if you focus on eating the most healthy diet you possibly can it will help, because the more healthy your body is overall the stronger you will be to manage the symptoms of fibromyalgia.

Here's some suggestions for managing fibromyalgia:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[Barbella]

Thankyou JayCS. All of the above i have done and my mattress is the right firmness needed for Fibro and cant tell you how many different so called chiro mattresses Ive tried and nothing works. The only thing left I havent tried is sleeping on the floor.
Im actually an active person during the day as I have a farm and animals need attending. If I didnt have them, it would be hard for me to get going in the morning and I force myself to walk. Mornings are the absolute worst and my body is stiff and sore just trying to get going but it take about 1 hours and Im finally able to move around a bit better and be able to bend over.
The diet this nutritionist told me to do, she said is about getting the gut to work properly and it can help Fibro. She said its helped some of her patients before who are in pain and it about rebuilding the cells with the right food intake.
The problem I have is I also have osteoporosis and SLE (Lupus). I had a major farm accident in 2019 and had a traumatic reconstruction of the left hip with 2 big operations. Then 18 months later another accident and broke my left ankle with two more operations and 12 months later, the right hip replaced as I was favouring it and had bone on bone then finally, lower back surgery July 2023, which did not stop any pain in my lower back and if anything, more pain in my pelvis than ever before which is mostly after Im in bed for 3 hours. Its excruciating to try and sleep through the night.
I was diagnosed with Fibro before the farm accident in 2019. Always had the usual pain with FM and my lower back was always slightly painful in the night and felt it in the morning when I woke up but since all these horrible operations, the pain seems to have gone through the roof. Tied of running around doing CT scan, MRIs and nothing seems to show its mechanical problems so, looks like the medical industry cannot help me. Im no Doctor but I putting it down to Fibro pain from all the trauma. Do you think this is the case?
The diet is the only thing left that I am working on but Im not seeing any improvement at this point in time. Cut out dairy, caffeine and definately don't touch gluten or processed foods and i start my day with 2 glasses of celery juice which is foul. I hoping all this will work and get my gut right to detox the body and reduce the pain. Its my last shot!
Would love to hear that diet has worked for someone out there. It is definitely worse at night when my body is still in bed for a few hours then I start tossing and trying to turn from side to side half awake as the aching is worse than a tooth ache. A doctor told me our blood pressure drops down during the night which can cause pressure on the nerves. If this is fact, I would love to hear from someone that might be going through this also and some feedback also if a diet is working for them.
Not sure if anyone can also enlighten me and tell me if surgery of any kind exacerbated their FM Symptoms.
Thanks
Barb

 

[Barbella]

Thanks Sunkacola,
All you have suggested I have done but cant do the Chiro as I have degeneration in the spine and osteo. I eat very healthy food anyway so, looks like the diet is a waste of time. Wont resort to heavy duty painkillers and wreck my liver and kidneys but I do have my faith, which has saved me from falling into a rabbit hole with this pain. Im taking one day at a time and praying someone out there will find a cure.

 

[JayCS]

The only thing left I havent tried is sleeping on the floor.

That's something I did for decades (on a thin camping mat and/or blankets) until I got my hard straw mattress, since fibro with thin soft topper on. But since fibro "it's harder", cos part of it is the hurting via contact/pressure.

Mornings are the absolute worst and my body is stiff and sore just trying to get going but it take about 1 hours and Im finally able to move around a bit better and be able to bend over.

Yeah, that's a typical one. Stretching outwards and inwards before I get up and "every half an hour" helps a lot.

The diet this nutritionist told me to do, she said is about getting the gut to work properly and it can help Fibro. She said its helped some of her patients before who are in pain and it about rebuilding the cells with the right food intake.

That theory is "understandable", but not proven. Sounds a bit like the "leaky gut" theory. Why not try for 3 months...
But "patients in pain" might have something very different, and "some" is always a possibility...

The problem I have is I also have osteoporosis and SLE (Lupus). I had a major farm accident in 2019 and had a traumatic reconstruction of the left hip with 2 big operations. Then 18 months later another accident and broke my left ankle with two more operations and 12 months

Ah, very helpful to know..., as well as what foods you've already eliminated - is that you or your nutritionist...?
Celery by the way causes a major upheaval in my stomach and gut, and it took me a while to realize.
Lots of us leave out these things, but I doubt many are drinking celery juice without a gun pointing at them. ;-/

worse at night when my body is still in bed for a few hours then I start tossing and trying to turn from side to side half awake as the aching is worse than a tooth ache. A doctor told me our blood pressure drops down during the night which can cause pressure on the nerves. If this is fact, I would love to hear from someone that might be going through this also and some feedback also if a diet is working for them.

Well, it's typical to wake up from pain after a few hours (as well as not being able to go to sleep), and a clue: If the problem starts after a few hours then these seem OK-ish. Tossing and turning if it doesn't help means it's better to get up, same as everyone with insomnia. Moving outside the bedroom until we are "bed heavy" again (as we Germans say), which can take a few hours. And then a second stint till the pain starts up again. Then up again. Some people prefer recliners or similar and can no longer sleep in beds at all. But many get up and move.
Me: Before I finally managed to keep all my pains down I used to find getting up and moving alleviated pain quite a bit. I had 4-8 sleep breaks, tallying 2-5 hours, but more and more was able to get 6 then 7 then 8 hours of pretty restorative sleep, sometimes with the help of NSDR. Praps it was a mistake that I distracted from the pain with screen time, but praps it was right for me. Best would be to do something tiring without screen use. Going for a walk or other things people suggested was worse.
(You say "right firmness for Fibro" - but there isn't one, we're all pretty different in many respects, just with enough overlap that using the same name for it is helpful. But I guess you mean "my fibro?")

It's true that blood pressure dips at night, but I'm not sure it it causes that much pressure on the nerves, and even if it did it wouldn't really help to know. Except doing something to increase blood pressure, which would again mean getting up.

Not sure if anyone can also enlighten me and tell me if surgery of any kind exacerbated their FM Symptoms.

Many, but not everyone!

 

[sunkacola]

Thanks Sunkacola,
All you have suggested I have done but cant do the Chiro as I have degeneration in the spine and osteo. I eat very healthy food anyway so, looks like the diet is a waste of time. Wont resort to heavy duty painkillers and wreck my liver and kidneys but I do have my faith, which has saved me from falling into a rabbit hole with this pain. Im taking one day at a time and praying someone out there will find a cure.

Have you tried cutting out various good groups as I suggest in that post of mine, to see if any of those might be exacerbating your symptoms? Even a very healthy diet could contain something that is not working for your body. (Probably you have done this, so I don't mean to rag on it, just asking).

Changes in diet have helped some people, although there's no "fibro diet" that helps everyone. I know that from my own experimentation certain things will tend to cause me to have more pain the next day or for several days, so I can avoid those. But I have not found anything I can eat that actually helps in terms of making pain less. I think there are others who have found such things, though, or who have felt benefit from certain supplements.

You are wise not to resort to heavy duty pain medication, which is not always effective anyway, and can be a bit of a slippery slope if more and more is needed to help, not to mention as you say what it can do to your body.

As for surgery, we have had several people on this forum report that they developed fibromyalgia after having surgery or an injury, and also after having a seriously traumatic experience. Of course, correlation is not causation, and there's no way to know if those events had any part in the creation of fibromyalgia in the person or not.
What does seem to be true is that many people with fibro take longer to heal from an injury or surgery, and some people find that afterwards their fibro symptoms increase. In this latter situation, although causation is not provable it does seem likely.

 

[Barbella]

Me: Before I finally managed to keep all my pains down I used to find getting up and moving alleviated pain quite a bit. I had 4-8 sleep breaks, tallying 2-5 hours, but more and more was able to get 6 then 7 then 8 hours of pretty restorative sleep, sometimes with the help of NSDR. Praps it was a mistake that I distracted from the pain with screen time, but praps it was right for me. Best would be to do something tiring without screen use. Going for a walk or other things people suggested was worse.

Hi JayCS
Wow....that sounds like my sleep pattern. I do get up when the pain is extreme and walk around, then go back to bed. I have never slept longer than 3 hours straight through. Can you explain to me what NSDR. If it gets you back to more sleep, Im keen to know. If its a drug, well...not so sure I want to go there. Ive got sleeping pills and the like, but would prefer my body to do the work and remove the pain somehow. It would be a magic day to sleep all through the night like normal people. Seems like a dream come true.

 

[JayCS]

Hi JayCS
Wow....that sounds like my sleep pattern. I do get up when the pain is extreme and walk around, then go back to bed. I have never slept longer than 3 hours straight through.

The art is to use these 3 hour stints. Be thankful yours are 3 hours!

Can you explain to me what NSDR. If it gets you back to more sleep, Im keen to know. If its a drug, well...not so sure I want to go there. Ive got sleeping pills and the like, but would prefer my body to do the work and remove the pain somehow. It would be a magic day to sleep all through the night like normal people. Seems like a dream come true.

I don't tolerate meds, and am pretty sure from my experience with those meds and supps I tried that zombified me, that this is not restorative sleep, so pretty useless to me, I only tried them for a time (longest amitriptyline 4 months) until I'd installed better supps and techniques. They actually didn't let me sleep all thru at all anyway, didn't make much difference.

So no, all my many techniques for sleep are non-med. I started with identifying and tackling my personal 30 insomnia triggers (incl. various local pains and the overall ache pain). Then >10 supps, esp. GABA & high dose passiflora. (Good sleep has allowed me to switch 2-3 sleep supps in the daytime to reduce blood pressure spikes.) Then last spring tuning in to my circadian rhythm, lots of blue light in the morning and almost none from the afternoon on, preferably with screen curfew. For this consult Andrew Huberman and Hugh Selsick on youtube, podcasts and websites. And lastly now LD N, which won't be for everyone.

But NSDR as said can also be called "Yoga Nidra" which already shows that it's no med. Best you just look for some on youtube: a variety of up to 6 relaxation exercises in varying lenghts, guided by a preferably soft voice. Huberman uses and recommends it too himself, and has some on youtube, but I found it long before and prefer Ally Boothroyd.
It definitely gets you back to more sleep, it can help you first get to sleep, it can be used in or after sleep breaks to entice you back to sleep, and it can be used as a very good sleep substitute - as the name Non Sleep Deep Rest suggests you need not be sleeping, but your body and your brain waves seem to be so close to sleep as to be better than shallow, restless sleep. I used to use a 1h version and could often hear it right to the end. Now if I do use it i only hear 1-2 of the exercises, praps 5-10' altogether and nothing else of it, so obviously I'm sleeping well.

I'd like to hear your experiences, whether you have any difficulties using it, and which speaker you prefer!

 

[sunkacola]

It definitely gets you back to more sleep, it can help you first get to sleep, it can be used in or after sleep breaks to entice you back to sleep

I'm always interested when someone says that "Yoga Nidra" (or guided meditation, which is really what that is) helps them to sleep. Hearing the sound of someone's voice would do the exact opposite for me and would be very irritating and therefore not relaxing at all. What helps me to get to sleep is a very dark room and silence.

I think it's great that so many people can benefit from sound effects or a guided spoken thing, especially when so many different things like that are readily available these days for free on the internet, but of course like everything else it doesn't work for everyone.

I am only mentioning this because in case it doesn't work for you, try the opposite and see if you are a person who needs dark and quiet in order to sleep. I have light blocking curtains on my bedroom window and am fortunate enough to live in a rural area that is very quiet most of the time, but if one lived in a noisy place it might even be worthwhile to soundproof the bedroom, or build a soundproof alcove in the room for the bed, or even put heavy curtains around the bed itself if it helped.

 

[JayCS]

"Yoga Nidra" (or guided meditation, which is really what that is) helps them to sleep. Hearing the sound of someone's voice would do the exact opposite for me...

True, true, for me too, would you believe! Most voices, sounds of nature or gentle music, guided meditation types etc. irritate me greatly, so much that after 5 or so minutes I feel like throwing the medium out of the window or breaking it.

I had to search a lot to find the right type. Thing is as I couldn't sleep anyway, then I might as well try some relaxation forms myself or guided which do me good, even if it doesn't send me to sleep. Also it distracts from my brain chatter, so is better than getting excited or strained by some idea, that's fatal and happens to me all the time. Darkness and quiet around me is a prerequisite for me too. But that alone, or doing any relaxation myself hardly helps me.

So one the advantage of NSDR (NON-sleep) is it can substitute sleep, if nothing helps. Perhaps to full-time Zen monks being able to sleep less when they're meditating most of the day.

Next good thing is you can choose how long it is. Even the 1h Ally Boothroyd one for insomnia fades away and the last 20 minutes or so is mainly quiet white noise - like waves. Before that she sometimes says one more thing gently, and that may wake me up again, but that matters less than my own chattering thoughts, so the voice brings me back to listening to my body or beautiful still images. If I realize I'm dropping off I turn it off. Now I use shorter ones 10 or 20'. On bad days I used 1.5h, cos I knew I wasn't gonna get to sleep easily anyway.
Ally Boothroyd is absolutely the only voice that after getting used to it and getting better sleep does now always make me nod off inside of a few minutes.
This is why I said this is good for people who can't get to sleep anyway, even if (they think) they've tackled all their insomnia triggers and tried all the >10 supps etc.

I agree fully that Yoga Nidra is a misleading term, cos it's modern adaptations of relaxation techniques that are used.
However I think "guided meditation" is usually not meant to send you into a sleep-like state or even sleep itself.
So it is a specific form of one. That's why I use the term NSDR, and only yoga nidra so people can find it and realize that it's a relaxation form.

light blocking curtains on my bedroom window and am fortunate enough to live in a rural area that is very quiet most of the time,

I would have thought everyone tries this first, if possible? Blackout blinds I still use and earplugs I needed for years, esp. cos of noisy old slightly deaf neighbours above and below: my bed is exactly between their two TVs, and the one above likes stomping around at 5 in the morning... If I want to go to bed a bit earlier and their TVs are blasting, a broomstick or jumping on the floor hardly helps, just makes me nervous - so again NSDR blends over that.
These are just a few of my 30 triggers....
But even after I'd solved all of these and there being seemingly no reason: often no sleep. So....