I can't take this anymore! I give up, no life,... - IBS Network

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I can't take this anymore! I give up, no life, always pain.Doctors do nothing.New med B12 500mcg tearing up my stomach. Going back pain meds

Eliana5 profile image
78 Replies

How much can one person suffer? Terrible pain in right shoulder from straining. If I don't strain or hold on to toilet rim so I don't faint..I can't produce anything. I'm 56. Sphincter muscle too weak I think. Strain even when I'm on stool softeners. Fiber does nothing but makes it harder to go..heavier "bulked up" bowel movements from fiber just too much of an ordeal..feels like I'm on toilet forever straining and straining. Ugh. 😳 I have been in constant pain since stopping prescribed opiates cold turkey after seven years for degenerative back disease from bad fall at horse show when 21. Could eat pizza, tacos, hoagies anything no IBS, cramping or pain. Constipation yes, but I'm already constipated, but at least no more fear to eat and pain. Just put on vitamin B12 500mcg. It's tearing up my stomach. Side pain so bad I'm doubled over. I am done. Back on prescribed pain meds, will make an appointment, if they will take me back..who wants to live with pain and IBS forever and fear of eating? It's no life. 😣😪. Thank you for listening. I'm at my wits end..

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Eliana5
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Lulububs profile image
Lulububs

Have u tried magnesium? Most people that have ibs c are usually magnesium deficient or bad gut bacteria through to many tablets or antibiotics

Eliana5 profile image
Eliana5 in reply toLulububs

I may have..but I think I did "Natural Calm" powder. Tore up my stomach. Is there any particular one you can think of?

EOLHPC profile image
EOLHPC in reply toEliana5

Our situations have a lot in common. Inc fainting on loo due to straining. Inc heavy duty prescrip pain meds due to early onset chronic spine pain due to injury. Inc chronic slow transit constipation. I won’t go on, but there is more in my previous posts here

For what it’s worth:

Once i got to a similar point to the one you’re describing (despair & desperation having tried & failed with everything) here is what has helped me get as much life back as poss:

- Ultra low residue aka low fibre exclusion diet

- High hydration

- Daily 3 x methylcellulose tabs twice daily to ease transit (in USA get Citrucel tabs, in UK Celevac tabs)

- avoiding resistant starches and gluten

I am a lot older than you, i think, so further down the road of intestinal insufficiency, so have also had to go onto daily prescription antibiotics forever for SIBO (small intestines bacteria overflow) related gastritis - all of which is fairly typical of slow transit dysmotility

And early last spring an intestinal blockage made me loose a lot of weight very fast which made gastroenterology put me on an Elemental Diet (prescription enteral nutrition in liquid form) without food by mouth, which is ongoing. This is necessary to give my small intestines a total rest from having to digest anything i also have a long history of malabsorption & GI tract hyperreactivity. Your needing B12 sounds like digestion + absorption probs...

Am vvvvv much feeling for you...take care

XOXO Coco

Eliana5 profile image
Eliana5 in reply toEOLHPC

Tried Citrucel..not only did it make my glass a gelly, sticky residue mess, but made me more constipated..and then when I went sticky, gelly, hard to pass messy 💩..(sorry). Fiber just makes things worse for me, and if I am already constipated, the bulky stools just sit on top of each other, not able to pass..it's the pits. Probiotics do littkr too. Might try the magnesium citrate powder again, but not the "natural calm" yes..we are both in the same boat. I sometimes get Angry with God..a caring God would not let his children suffer..

EOLHPC profile image
EOLHPC in reply toEliana5

Too bad...am sorry...The citrucel tabs are much better, maybe try them ...methyl cellulose (citrucel’s main ingredient) is the only insoluble nonfermentable bulking agent...all the others are fermentable & soluble and i hyperreacted...i feel sure you will figure this out...wishing you every best wish XOXO

Eliana5 profile image
Eliana5 in reply toEOLHPC

I can try..but just more fiber I can't handle..does nothing..sucks..I know..makes the stools too bulky and large making for painful bowel movements.. 😳

EOLHPC profile image
EOLHPC in reply toEliana5

Try starting with no more than 2x500mg tabs 2 tabs early morning & 2 tabs in the late afternoon...not with food...read the instructions) and take them with at least 2 big glasses of warm wate, drinking this v slowly...this is the recipe for constipation my colorectal surgeon started me on when i’d become hyperallergic to food fibre and things had been extra dreadful for 2 years of worsening after decades of relying on high fibre Low FODMAP exclusion diet. In those 3 worse years i’d tried everything our UK health system had to offer but, even so, ended up in a v bad way, feeling my version of the sort of despair you’re describing.

When i saw the colorectal consultant, i had just been on 10 days of ultra low residue diet in prep for total bowel cleanse of GI tract for colonoscopy & gastroscopy though, which meant i had a nice clean start when i tried methylcellulose, which i guess you (poor dear eliana) haven’t got right now. Methylcellulose is a bulk forming slippery stuff that eases stool through & out of the GI tract, it’s not fibre really. The citrucel website explains

I think you are v brave, eliana, and resourceful and i feel you will figure this out, so please don’t loose hope...and keep looking for the right medics with the expertise a complex patient like you needs...i feel you will succeeed, as i have...XOXO

Eliana5 profile image
Eliana5 in reply toEOLHPC

Methylcellulose - 2 tabs is high fiber, but I'm willing..☺👍

EOLHPC profile image
EOLHPC in reply toEliana5

Always best to be cautious. You know your own body and whenever you try anything “bulk forming”, even if it’s ultra low fibre like me thylcellulose is, you need to read the info leaflet and check with your doctor if you are concerned you have any sort of blockage or obstruction. This is why i got advice from my colorectal surgeon when i became hyperreactive to all forms of fibre & residue in foods....at that point it was my colorectal surgeon who recommended Methylcellulose because it is the least problematic bulk forming low fibre constipation treatment...and 3 x 500 mg tabs of methylcellulose twice daily ongoing is saving my life now, over a year since instarted taking it daily.

But if you do decide to try methylcellulose you should check with your dr first & you must be cautiously careful eg start with a low dose (eg only 2 of the 500mg tabs at first) i & you do need to take it with lots of warm water daily ongoing and an ultra low residue diet (low residue means as little fibre as poss eg the kind of diet we muct eat for several days before a colonoscopy bowel cleanse)

EOLHPC profile image
EOLHPC in reply toEOLHPC

There is great info via this link to the caplets page of the citrucel website:

citrucel.com/products/caplets/

Eliana5 profile image
Eliana5 in reply toEOLHPC

Thank you so much for sticking with me..and not upset with me, for my doubts. Yes, I most definitely check out the Citrucel website. I **finally** (duh..me..) understand Citrucel is considered "low fiber". Thank you for setting me straight. You are a Godsend and very patient, and that means a lot to me. A Gastroenterologist ?or Some kind of surgeon..who did a small surgery/biopsy on a "dark spot" near the vaginal area, actually wrote on a piece of paper put "buy Benefiber or Citrucel" whichever one, it will work" when at that time, I was heavily constipated from pain meds. Well..it helped me! But for the life of me, I don't know which one. At that time, I felt great, although constipated, but it was more of a nuisance, then the debilitating problem and despair I am having now. I was 178lbs, happy and healthy about 48 years old. Well, I wish I could remember which one it was that worked! 😳😕. I remember I put it (powder kind) in in my coffee, and it helped even being on very constipating pain meds and muscle relaxers. I don't know if you can put Citrucel in hot liquids..so it may have been the Benefiber. This was back in 2013. I wish I knew which one it was. So..I called that office and asked them if they knew which one it was..but they said, it was only written on a peice of paper. I did try the Benefiber again, and at the time, consumed tons of raisins and I was producing for some reason small pellets all day long. So strange. I had no life, because I could not stop going to the bathroom and pass lots of pellets all day. Don't know if it was the Benefiber or all the raisins..I ate. So then I went to another Gastro who said "take Citrucel!" but it was so sticky and messy (powder) I immediately stopped. I rely on instant coffee which works better than brewed coffee with tons of Stevia sweetener, just to have a bowel movement, and when I do, It is disgusting. The stools pass fast, and it looks like someone gave me an enema looks like cow dung (sorry for sensitivity)..just awful, but at least I am going..but not the way I want to have a bowel movement. Thank you, I will go on the sites you mentioned and try the Citrucel tabs. I did not realize it was low on fiber..🌹🌸xx

Eliana5 profile image
Eliana5 in reply toEOLHPC

I just went on that link, but it is saying Citrucel tablets are a fiber bulk forming laxative..but will still try..

EOLHPC profile image
EOLHPC in reply toEliana5

Methylcellulose is THE lowest, most non-fermentable least allergenic bulk forming laxative...there is nothing less fibre-like for constipation that really works & is prescribed by the NHS

Eliana5 profile image
Eliana5 in reply toEOLHPC

I see chewable tablets? I guess that is what it comes in..but still saying methylcellulose is fiber..I think I am confused..

EOLHPC profile image
EOLHPC in reply toEliana5

I do not chew citrucel tabs. I swallow them whole with at least 2 glasses of warm water

Eliana5 profile image
Eliana5 in reply toEOLHPC

Aah..okay..👍☺🌹

EOLHPC profile image
EOLHPC in reply toEliana5

Yes, we all need some sort of “bulk” aka “fibre” going through our GI tract from outh to ass: this is what our bodies are designed to “process”. But some of us get to a point in life when we need as little bulk/fibre as possible...i am an example: totally allergic now to all plant fibre including plant-based fermentable, soluble laxatives. Methylcellulose is the only bulk forming non fermentable insoluble laxative, and because it’s totally synthetic (ie not plant-based) i can tolerate it....basically it is saving my life, because my liquid elemental enteral diet (EEN) makes patients constipated...so i am vvvv glad i can tolerate methylcellulose...i’ve already been chronically constipated all my life anyway, and relied on plant-based fibre...now i get v ill if i eat even a tiny bit of plant fibre and same goes for meat, dairy, everything. My life has changed completely....but methylcellulose + EEN + a coffee each day+ my Lupus meds are helping lots! I really think you’ll find a regime that helps you too 🍀😘🍀😘

Eliana5 profile image
Eliana5 in reply toEOLHPC

Thank you for all the great tips and advice. I don't get paid till October 3rd (SSDI disability) so broke right now. I will buy it. Will report back..if okay? ☺🌹x

EOLHPC profile image
EOLHPC in reply toEliana5

Great! Good Luck 🍀....sending you lots of ❤️

EOLHPC profile image
EOLHPC in reply toEliana5

This is a link to comprehensive low residue diet info:

medicinenet.com/low_residue...

By the time the colorectal surgeon told me to try methylcellulose, i was hyperreactive-allergic to all fibre (unable to eat any fruit or veg, whole grains, red meat, resistant starches) so my diet was already severely restricted.

Eliana5 profile image
Eliana5 in reply toEOLHPC

It's very interesting. I am just concerned where it says it is a diet (someone with my low weight, should not be on?) one should only be on a diet, and only on it short-term as it can rob of you of the important nutrients your body needs. I am thinking decreased bowel motility from what seems constipating food it mentions (example, white rice, white bread)..would mean more constipation. It also mentions decaf only coffee..and since I am from Seattle, coffee capital of the world..I don't know if I can go without coffee or decaf..this is something I will talk to my gastro about..thank you..☺🌹

EOLHPC profile image
EOLHPC in reply toEliana5

We have to be supervised by our doctors if we have shown to be prone to long term/chronic constpation + slow transit dysmotility...some of us need this sort of preparation daily long term...i’ve been on NHS methylcellulose prescription for 2 years and wish i’d been given it years ago.

My case is so severe that i am now off all food by mouth because i am in intestinal failure. I get my nutrition from the only specialist liquid Elemental Enteral Nutrition product available in the UK (predigested amino acids in liquid form: Nutricia Elemental 028 Extra). I’ve been on this now for over 5 months eithout food by mouth and expect to stay in this diet for at least a year before we dare let me try ultra low residue food stuffs 1 by 1 in tiny quantities again.

The GOOD news is that my NHS specialist gastro nutritionist DOES allow me 1 esspresso daily! We think i actually need this dose of caffeine to stimulate my bowel to slide the methylcellulose through my intestines...when my colorectal surgeon first prescribed methylcellulose, he said my slow transit would also need a little bit of stimulant, and so far we have proven that the ONLY stimulant i can tolerate is GOOD quality esspresso

Basically, my feeling is that your doctors need to pay you closer attention and do everything they can to help your GI tract remain functional...if you need ANY of these treatments longterm (including restricted diet) in order to prevent constipation, you really should be under medical supervision like me. These medics need to ID the underlying cause & treat that as well, not just these GI tract symptoms

EOLHPC profile image
EOLHPC in reply toEOLHPC

PS eg the causes underlying my chronic GI tract issues are infant onset systemic lupus + hypermobile ehlers danlos syndrome + hypogammaglobulinaemia antibody deficiency illness, and i am in care with rheumatology + immunology consultants who are treating these incurable illnesses very effectively.

Eliana5 profile image
Eliana5 in reply toEOLHPC

I don't know how you do it all..very admirable. I'm proud of you. ☺👍

EOLHPC profile image
EOLHPC in reply toEliana5

Maybe i do cope as well as i can because i love the basic things in life and have low expectations....i’m not sure...but there have been many vvvvv low phases, and i am a depressive (runs in my mother’s & father’s families) so in the course of my 64 years, i’ve clung to the understanding that no matter how desparate we feel at times, we can survive to feel “a bit better again + to be really truly greateful for life) 🍀❤️

Eliana5 profile image
Eliana5 in reply toEOLHPC

So true about the espresso. While I can't afford this everyday at espresso shop (I don't have room on my counter or the $$ for an espresso machine, so have to go to espresso shop) I get 2 large Mochas (called "Zebra" as it has white and dark chocolate in it) I use the slim milk and "extra chocolate" and several hours later, I have a pretty large bm..so it works..coffee is the best natural laxative I think..

EOLHPC profile image
EOLHPC in reply toEliana5

My colorectal surgeon would probably agree with you...but your doctor needs to know this is how you’re managing to keep passing stools...

Eliana5 profile image
Eliana5 in reply toEOLHPC

Yes, I will make the New gastro aware. I also know he will not be pleased with my weekly Sunday Senna use. I don't know what else to do..nothing seems to help me really go. 😳

EOLHPC profile image
EOLHPC in reply toEliana5

Maybe ask him about restoran aka resolor aka prucalopride & constella aka linaclotide.if you haven’t already:

badgut.org/information-cent...

badgut.org/information-cent...

Eliana5 profile image
Eliana5 in reply toEOLHPC

Thank you for that and everything you have helped me with on this post..much needed comfort and help I needed. Sending you hugs..💕🌷x

EOLHPC profile image
EOLHPC in reply toEliana5

Gentle hugs to you dear eleiana...if anything is helpful, i’m happy - am just trying to give in memory of all the giving i’ve received on these wonderful forums. Looking forward to your next post. 🍀😘🍀😘🍀😘

Lulububs profile image
Lulububs in reply toEliana5

I just use nature best magnesium tablets 375mg and i take about 3 through day

Eliana5 profile image
Eliana5 in reply toLulububs

Is it the Magnesium citrate? Never know how much to take.or take the powder or capsules..which are huge..I'm in such a mess..and losing hope..

Lulububs profile image
Lulububs in reply toEliana5

Magnesium citrate tablets mine are small in size . I was told to take about 600mg but work up as it can give u poops if u just got straight in at high dose

Eliana5 profile image
Eliana5 in reply toLulububs

I just talked to Doctor..I asked her about dosage. She said women..no more than 320mg a day, men 450mg a day. Any more, possible kidney failure. So..I'm at a loss..

Snowy13 profile image
Snowy13 in reply toEliana5

I was taking far too high a dose of this (1000mg), along with maximum dose of laxido. I got relief for a couple of days then started feeling very dehydrated, my mother who is a nurse realised how much I was taking and made me stop immediately - really pleased she did! I am in the same boat as you, nothing seems to work, and bulked up poo just gathers!

Eliana5 profile image
Eliana5 in reply toSnowy13

I understand..it's no fun when we can't find something that works and others seem cured..

Eliana5 profile image
Eliana5 in reply toLulububs

Ahh..I've got the capsules. Citrate tears my stomach up..any kind of acid, even chewable vitamin C..

LCat profile image
LCat

What Barnclown says is absolutely correct : stay away from high fibre, grains and starches !

Eliana5 profile image
Eliana5 in reply toLCat

I don't know why Doctors keep telling is"eat fiber!"..so confusing..

LCat profile image
LCat

So called roughage is rough and tough on your guts and makes your problems so much worse. We have been brainwashed and told that we need to go on low fat/ no fat diets and that grains and indigestible fibers are good for us. This is wrong. I only noticed when O got really sick from eating Cereals. All Bran etc is the worst! Especially in your condition it will cause havoc. When I stopped the whole grain menace I got so much better. You can of course eat digestible fibers like certain vegetables like e g Courgettes etc.

Eliana5 profile image
Eliana5 in reply toLCat

Do you mean roughage like salads? Even romaine or butter lettuce?

Eliana5 profile image
Eliana5 in reply toLCat

Fiber makes my stool too large and bulky..I can't pass them with just stool softeners I take daily.. 😳. Have to use the weekly crummy Senna lax to get that huge mess out..can't seem to win..

Eliana5 profile image
Eliana5 in reply toLCat

Hmm..I am starting to think "The Fiber menace" article (debunked by Gastros) is making more and more sense. I read it a lot online..on my home page under gutsense.org. or "The Fiber menace"..😕

Fruitandnutcase profile image
Fruitandnutcase

Agree with the others - too much fibre is not good - well for me.my GP prescribed methyl cellulose saying it was more gentle than physillium. It was OK but I’m not sure, I’d say my body does it’s own thing regardless,all of a sudden it decides to be constipated then for no particular reason it changes its mind then things can be normal for ages before it decides to give me the runs and so it goes on. Regardless of what I do or eat etc. I try to stay well hydrated though, I’m sure that helps.

Have you tried B12 patches? You stick them onto your arm or wherever and it bypasses your gut or you can get injections.

Eliana5 profile image
Eliana5 in reply toFruitandnutcase

They (nurses) are supposed to call me to get the injections. Have not heard from them yet..

Fruitandnutcase profile image
Fruitandnutcase in reply toEliana5

Phone them up and remind them or at least find out why they haven’t started yet.

Don’t know what Celuvisc / methyl cellulose is. My doctor obviously thought it was less harsh than Fybogel. Mine came as huge pink pills that you chewed, it stuck to my teeth like those disclosing tablets you get at the dentist’s and it also stuck to them. Can’t even remember how good they were. I just go for Fybogel in some sparkling water if I need to use anything these days.

Have to say my IBS has improved greatly since I went totally gluten free.

Eliana5 profile image
Eliana5 in reply toFruitandnutcase

Citrucel? Is that the one with pink chewable tablets? I have never been able to find fybogel..I'm in the States? Will ask pharmacist if they can order this..

Eliana5 profile image
Eliana5 in reply toFruitandnutcase

Isn't the methylcellulose (Citrucel) fiber?

Fudgerelle profile image
Fudgerelle

Hi......talking about vit b12...you can get this in a spray form that you spray inside your cheek.....Holland and Barrett

Eliana5 profile image
Eliana5 in reply toFudgerelle

No Holland and Barrett here in the States..😳 would my pharmacy sell the 500 mcg? I wonder?

bburzycki profile image
bburzycki

Why were you prescribed B12? Is that a deficiency or a Dr just chucking parts at the car to try to look like they are doing something?

PS: Find a Dr. that does not suck, while this is hard to do it can be worth the looking. Also one that looks at you as a whole and not just a symptom treater

Eliana5 profile image
Eliana5 in reply tobburzycki

Yes, I'm deficient in B12 Hematologist said..along with folic acid. I'm severely anemic. But after taking folic acid 1mg..now no longer severe, but borderline. Those tablets I can handle. It's the B12 that hurts my stomach..(to the left side of under ribs badly)..

Iesgobdafydd profile image
Iesgobdafydd

It sounds absolutely awful what you're going through. It must be so hard just to keep going and deal with the pain, and it's so unfair that someone who is so sick has to try and find energy to reach out and find help and solutions on top of dealing with just the difficulty of living with the health problems. It's a bit of a long shot, but I wondered if just possibly you might have something like TMD (also known as TMJ) following the fall you had. It's been found to co-occur with IBS some of the time, it's thought to affect up to 1 in 5 people to some degree, and I think it's the main cause behind my own IBS and chronic fatigue. I also had low B12 at one point, and while my IBS was probably IBS-D rather than IBS-C, I've had a tendency for many years of often needing to strain on the toilet, and I think this is also due to the TMD, which seems to have caused a build-up of locked-in tension not just in my jaw area but all around my body, and while I don't think it affects the sphincter muscle itself, it does seem to cause tightness in the surrounding area which makes it hard for the stools to get out. I really really hope you can find something that helps you! I was surprised to hear the B12 is affecting your digestion, I'd never heard of that happening before. Maybe you could ask for B12 shots instead of tablets? Then it goes straight into your bloodstream. I was on a very limited diet for about a year because almost everything seemed to upset my digestion - just stuck to rice and cheese and a few safe vegetables, and a multivitamin and mineral tablet to try and plug the nutritional gaps. It wasn't much fun, and I thought that would be me for the rest of my life. Now I can eat almost anything again - miracles really do happen, and maybe one will for you.

Eliana5 profile image
Eliana5 in reply toIesgobdafydd

I think I may have TMJ..dentist said it's because I grind my teeth. I'm on Medicare..have no vision or dental care on it. The custom mouthgard costs a whopping $800.00. 😳😪. I can't do the store bought ones. They offered no other soloution for TMJ other then a pricey mouthgard, so I don't grind my teeth..

b1b1b1 profile image
b1b1b1 in reply toEliana5

I have had this. Dentists are not helpful. Here is what I did. 1) I tried consciously to relax my whole jaw whenever I thought of it 2) Don't bite anything hard with the affected part of your jaw and 3) close your mouth and rest your tongue against the roof of your mouth for a few minutes. I read (3) on the internet. It is supposed to relax your jaw. I think the above helped a lot.

Eliana5 profile image
Eliana5 in reply tob1b1b1

Thank you! ☺🌹x. All great tips and advice.

Eliana5 profile image
Eliana5 in reply toIesgobdafydd

Can you tell me what you are doing/taking/ eating to make your symptoms go away?

Iesgobdafydd profile image
Iesgobdafydd in reply toEliana5

I hesitate to say your dentist is wrong about the grinding being the cause because I haven't done a lot of reading about TMJ yet. But from what little I have so far read of the book I bought about it, "Taking Control of TMJ" by Robert Uppgaard, the cause is often some injury and/or bad posture, and that makes a lot more sense to me - from what I observe in my own body, repeated clenching and releasing of the jaw muscles is actually something I can use to help release tension, and when people grind their teeth in their sleep it might actually be their body is trying to free something up that's stuck. But I might be wrong.

In that book (which cost almost nothing secondhand) there are a series of short daily exercises suggested which you could try. But what I am doing is rather different. I started with the idea that maybe there were tense bits inside my body that I was holding onto without being consciously aware of it, and if I could become consciously aware of it I might be able to just tell them to relax with my conscious mind and fix it that way. I looked particularly in areas I had an idea I might be storing tension in, places that often felt tight or where I was aware I couldn't move a joint as far as some other people. I wasn't aware of being in frequent pain in any one particular spot, but if I had been, I'd have looked there - pain is the body shouting for help where something is wrong. What I found first was some bits that felt sort of dead but like they shouldn't be dead somehow, so not like a bone. I played around and experimented with them, and after a bit I also noticed that there was actually a lot of pain that I could sense by following the sensations down through my tongue and into the root of my tongue. It's like the tongue is a highway of nerves. I was experimenting and sometimes managing to relax things and get them freed up and for a long time I wasn't really sure exactly what I was doing. I guess I'm still not 100% sure, because sensations inside the body can be quite hard to interpret. But I'm pretty sure now that what I'm doing is targeted stretches of tight bits using particular muscles. My understanding of human anatomy is pretty weak so I don't know what the tense things I'm stretching are called, but whatever they are, they connect in long thin strings that reach from my head (and round a whole lot of attachment points in my head) down through my neck, round my shoulders and down my arms & fingers going one way, and down through my torso & gut, hips, legs & toes going the other way. They're very strong, and when they relax a bit it feels like they are spinning. I guess maybe this is why we call it "unwinding" when we relax. The model I have in my mind is that they are like wires, and they're wound round and round very tight up inside my skull, and have got stuck in that position. Sometimes it feels like a little coil of the wire is pulled out by a stretch, still stuck in a lump, and I have to pull in the right places to pull the lump apart into straight wire; sometimes the wire just pulls out tidily in a thread. Very often, gently clenching and releasing the jaw over & over will pull in the right place to free a bit more up. Sometimes, clenching a muscle somewhere else, usually near the thing I'm trying to free up, is more effective. Sometimes trying to "push" down on an area that feels sort of dead works. Because the tension involves long thin things, often involving several muscles at once in the stretch is more effective than just clenching a single muscle. The work can be quite painful sometimes, and feel absolutely blissful at others, but mostly it's neither and just takes a lot of time. I've been working on it all summer, and not done yet. It can be quite frustrating trying to find where & how to work early on, and because the long thin things are wound round & round the same combinations of points repeatedly over & over, I've worried at times I might just be going round in circles & not making progress. But I'm pretty sure that isn't the case, and as time has gone by, the process has accelerated, and more and more of the time I can be up & about and feel that the unwinding is actually continuing on its own if I give it an occasional prod when it gets stuck. But it still goes fastest and best lying relaxed on my back. I can't guarantee what I'm doing is safe for you, you might want to discuss it with your doctor if you can - I'm not medically qualified; but it doesn't cost money except in as far as time is money, and I'm convinced it's going to fix me.

Eliana5 profile image
Eliana5 in reply toIesgobdafydd

Thank you! ☺🌹🐼x. I also bite the inside of my cheeks. Have been doing this awful habit since childhood. Ugh..

Iesgobdafydd profile image
Iesgobdafydd in reply toEliana5

I have a feeling I also do that occasionally, or used to, to distract me from other emotional or physical pain, but only fairly gently so it doesn't do any damage. Is that what it's about for you? I also accidentally bite them sometimes when I'm chewing and that really hurts and leaves scars, not nice at all.

Eliana5 profile image
Eliana5 in reply toIesgobdafydd

This is very similar to DBT (Mindfulness, or coping skills, meditation for negative thoughts, being aware of the present moment) I am doing in my therapy sessions and groups. I have BPD. I also suffer from racing thoughts a lot..sometimes restlessness. I have a hard time with any type of meditation. I get distracted so easily. The only thing that makes me really relax, it listening to "smooth jazz" on Pandora. But for some reason, I have a hard time with meditation. I wish I didn't..as I know it would help with a lot of things. Yes, I do slouch a lot. Bad habit. I suffered a bad fall from a horse when I was 21..I am not sure how much trauma in my later life it has caused, although it did cause me considerable distress..mostly about my love of the horse that fell over the jump, blaming myself, etc. I don't know if my degenerative back pain came from that..or just plain old aging. I do sometimes have to wear a backbrace. I have (unintentionally) lost an extreme amount of weight, but it has helped with my lower back pain..from ruptured and bulging disks. Not sure why Dentist said tooth and jaw pain and even swollen lymph nodes in my neck under jaw, causes TMJ, but they said my enamel was eroding from grinding my teeth, and they were pretty insistent about a customized mouthgard..😕

Iesgobdafydd profile image
Iesgobdafydd in reply toEliana5

I had very similar thoughts about my illness - maybe it's just normal aging and I'm making a fuss about nothing - but we both know most people in their 50s aren't like this, it's unusually early for aging to be really starting to bite. In a way the cause doesn't matter, what matters is finding the road ahead to the best possible health you can have now. The cause only matters if knowing it can help you find that.

My sister has a mouthguard for tooth grinding, which was wearing down her teeth. She doesn't have any other sign of TMJ though. She stopped using her mouthguard a while ago because her husband didn't like it, and tried spreading out her tongue as a cushion between her teeth before going to sleep. She said it doesn't completely stop wear and tear the way the mouth guard did, but she thinks it has made her grind a lot less often.

Yes part of what I'm doing is a bit like mindfulness, and that could be difficult if you're easily distracted, but that's just to figure out where it would be helpful to stretch, and to observe whether stretching a particular muscle feels like it's releasing tension or not. If listening to jazz helps you focus or relax, I don't see any reason why you couldn't do that at the same time. Just doing a lot of yoga or other stretching exercises without the mindfulness stuff might also help, but of course with a back injury you need to be a bit careful what stretches you do and how hard you do them. I've done some yoga in the past so I did try some yoga stretches for this. One thing I noticed is that trying to do some of those big yoga stretches was like trying to free up the whole tangle of tension at once - I was pulling on something that was very hard to pull, and hurt quite a lot to pull on. And because it hurt a lot, I'd usually just stretch there for a bit and then stop. Whereas most of the time what I am doing is finding one little "wire" I can pull on that isn't twisted round a bazillion others, and so isn't as hard to pull on, and doesn't (usually) hurt. Generally after pulling for a few seconds, something gives, and there is a feeling of the tension slackening. Sometimes it slackens a lot, sometimes just a tiny bit in which case it's usually worth pulling again in the same place. Sometimes there is a faint, unusual smell, or a salty taste like mucus, or a faint ringing sound in my ears from the release of pressure, or a crunching sound from a stuck bit getting freed up. I suspect that just working your jaw muscles by clenching & releasing them quite gently over & over as many times as you can be bothered might be quite effective, because they're central to the problem (at least for me). Repeating the muscular actions you do when swallowing over & over might also be helpful, if it's affecting your throat area as it was mine.

Eliana5 profile image
Eliana5 in reply toIesgobdafydd

Hmm..I never thought about it that way..very good insight. Thank you! ☺🌹

Muddle profile image
Muddle

So sorry for your pain have you had tests colonoscopy I found being constipated makes the back pain worse as it presses on a nerve in the back

Eliana5 profile image
Eliana5 in reply toMuddle

Yes, had Colonoscopy about six months ago..said "everything fine" just 2 benign polyps found and removed..

Eliana5 profile image
Eliana5 in reply toMuddle

Yes, it hurts and irritated the nerves in the lower back..but I have never had pain like this in my upper back..shoulder? I thought it was due to "hanging on toilet rim" to not faint..

Muddle profile image
Muddle in reply toEliana5

Could of pulled a muscle i would go to the doctors

Eliana5 profile image
Eliana5 in reply toMuddle

Doctors don't do diddly. I am trying to find a former Physiotherapist. Thank you though. ☺🌹x

Muddle profile image
Muddle in reply toEliana5

I been seen by the MSK team Uk waiting on physio for my shoulder

Eliana5 profile image
Eliana5 in reply toMuddle

Did they take x-rays? Please keep me posted if you can or pm me. ☺🌹

Muddle profile image
Muddle in reply toEliana5

Yes they did exray and ultrasound and referred me to physio I live in Hampshire uk I got a referral to them from my Gp full name muscular skeletal team

Eliana5 profile image
Eliana5 in reply toMuddle

I just fear they will tell me I have done permanent damage..and tell me not to strain..which I must do, to get stool out. Then I have to "hang on" to not faint. I don't really know that anyone can do anything for me at this point unfortunately.

Muddle profile image
Muddle in reply toEliana5

I take laxido twice a day last year I had inpaction was diagnosed at hospital with an exray then colonoscopy for years I was diagnosed with IBS which I did not have had a very long twisty colon

Eliana5 profile image
Eliana5 in reply toMuddle

Be careful with the Laxido..also known as "Miralax" "GoLytely" "Movicol" "Clearlax" here in the States. There is a black box warning on it on FDA website. It contains Polythene Glycol, (PEG) the same ingradient used to make household cleaners and Antifreeze, toothpaste, etc. It may soon be taken off market. It sadddens me that Doctors/Gastros prescribe this like candy..even to children..

Eliana5 profile image
Eliana5 in reply toMuddle

Yes, it's the Pitts..and cramping from the constipation as well too..

Muddle profile image
Muddle in reply toEliana5

Peppermint tea is good

Eliana5 profile image
Eliana5 in reply toMuddle

For cramping or constipation? I know that when my stomach hurts I chew a peppermint candy or mint I think..the red and white striped ones. It helps. I have heard about peppermint oil? As I am not a big tea drinker..

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