Interstitial Cystitis and ME/CFS

[Pyrrhus]

Interstitial Cystitis and ME/CFS​

Here's an informational pamphlet from the UK ME Association:
https://meassociation.org.uk/product/interstitial-cystitis-and-me-cfs/

We discuss Interstitial Cystitis (IC) which is a very distressing condition that seems to be more common in people with ME/CFS. It is a poorly understood bladder condition that causes uncomfortable symptoms including pelvic pain.

And here are related discussions:

Interstitial Cystitis? (2010)
https://forums.phoenixrising.me/threads/interstitial-cystitis.4265/

interstitial cystitis (2013)
https://forums.phoenixrising.me/threads/interstitial-cystitis.21821/

Brain white matter abnormalities in female interstitial cystitis/bladder pain syndrome (Farmer et al., 2015)
https://forums.phoenixrising.me/thr...tis-bladder-pain-syndrome-a-mapp-netwo.35994/

A Case Control Study Reveals that Polyomavirus Is Significantly Associated with Interstitial Cystitis (Winter et al., 2015)
https://forums.phoenixrising.me/thr...e-disease-called-interstitial-cystitis.58466/

 

[Rufous McKinney]

I"m bumping this thread: BUMP BUMP

I'm having alot of IC these days. Daytime, naps,resting.. my bladder is not OK. And hasn't been for a very long time.

I am ordering: SAGA PRO

I got this several years ago, ordered it online it was not in stores. Icelandic Angelica. (ANGELICA ARCHANGLICA)

(capitalized to stop my spelling corrector)

the root.

My bladder is sort of worse lately, after another acute gastro event last month.

So this is a Nordic herb. My chinese herbalist was frankly distressed when he heard I had obtained it.

Its outside that system, plus its the root.

Well, I used it and it seemed VERY helpful.

So I'm going to experiment trying this again, and will report back.

 

[Rufous McKinney]

I see I am back at this thread again, but nobody else is around or ever responded.

Am I the only one around here?

SAGA PRO did not seem to improve my bladder this time. I took them every day for several weeks. Half are left, typical.

Well, I read there is a pill RX ...that might help to thicken the bladder wall, part of the issue.

So nobody else has this issue?


Possible treatments:

1) Dimethylsulfoxide — Dimethylsulfoxide (DMSO)

2) Elmiron is the only oral drug approved by the FDA specifically for interstitial cystitis. It improves the bladder lining, making it less leaky and therefore ...

3) Hydroxyzine is most widely used; however, some people with IC find relieve from Claritin, Benadryl, and Singulair.

( generally I can't tolerate antihistamines)

4) substances they bath your bladder in...sounds like a procedure I"d not be able to undertake (procedures we dont do, and no, I don't have a tumor, or blockage and no, nob body is going on a field trip to my bladder.

What works great for this? medical marijuana. Pretty much the throbbing bladder ceases throbbing. As do the throbbing bowels.

What did nothing traveling? Xanax, Ibuprofen.

Has anyone tried any of the above treatments?

 

[Rufous McKinney]

Here is an online topical product that is a mix of essential oils...handmade....

https://www.etsy.com/listing/638124909/cystitismassage-oilinterstitial?

Ingredients
Organic Grape seed Oil
Sandalwood
Lavender
Cypress
Juniper Berries
Clary Sage
Geranium
Red Thyme


I had not considered it might be possible to apply something topically to the bladder.

I think I will try the Copaiba Oil I have here, with b-caryophyllene.

 

[brenda]

After many years of IC and many remedies, including homeopathic which worked sometimes - sepia especially, I have found that the best is birch leaves. When I was staying in Germany and suffered it at one time, a local pharmacist told me to use birch leaf tea bags.

 

[bertiedog]

I have suffered for months with an irritated, painful bladder but never showing signs of an infection.

After joining the site UTIFree and Bladder UK I learned a lot and in my case it turned out that any supplement form of vitamin C was causing it. I would start to get symptoms within hours of taking even the gentle formulas. The other thing that would badly affect me was HCL so I have given them all up and although I don't have the burning and urgency I still find that my bladder hasn't completely returned to a normal state as I am far more likely to need to get up a night to pee than before despite cutting right back on any fluids during the evening.

This is really annoying because i have big problems getting back to sleep and can be awake for hours unless I take a tiny dose of clonazapan. Its very frusrating.

Because I seem to be fighting some sort of virus Iat the moment I did take a natural fruit based supplement which is supposed to supply natural vitamin c and that didn't cause any issues but I only took 2 capsules for a couple of days. However I find that Andrographis and zinc are far more helpful when my body is dealing with a respiritory type virus.

Pam

 

[keepswimming]

I have problems with incontinence. I was referred to the incontinence clinic, I have no muscle weakness but my symptoms don't match IC either, so I'm a mystery. I think it's to do with the M.E. - I mainly have problems when I am doing high energy activities. I think my body is struggling and that's one of the things that goes. I said this to the nurse and she agreed it seems likely, she mentions how incontinence can happen when the body is in fight or flight, which is what my body does to get through higher energy tasks.

 

[Rufous McKinney]

1) Dimethylsulfoxide — Dimethylsulfoxide (DMSO)

so, could DMSO be applied topically- outside the body...not via this other process?

@Wayne ...curious if you've tried this.."??. I' ve been experimenting with Copaiba Oil containing b-caryophylene...

I'd like to try maybe using it...topically.

(somebody I know cured their colon cancer using b-caryophylene delivered topically (with DMSO) (I am pretty sure it was topically)

 

[Rufous McKinney]

she mentions how incontinence can happen when the body is in fight or flight, which is what my body does to get through higher energy tasks.

I"m having intense spasms....tied to increased anxiety and crashing/PEM and over done.

It all is feeding the problem it seems.

Years ago, I had an ultrasound. I drank a liter of water, was doubled over in agony, and could hardly keep it in.

The technician announced: Your Bladder is not Full.

***
so WHAT THE HECK?

I don't know what a full bladder is supposed to look like and this guy wouldn't answer a question. (hated that)

Looked like "bladder" was about the size of a fist.....

 

[Judee]

I've only tried the Prelief pills for a day or two because I'm afraid of anti-acid type meds ruining my stomach acid but so far I've found if I take a piece of a pill each time I drink some of my Zevia Cola then my bladder hurts a little less by the end of the day. I've also been trying to mix the Zevia with at least equal parts of water before drinking it now. It has both citric acid and tartaric acid.

Unfortunately, I can't quit the Zevia because it's one of the things that helps my brain veto my body when I have to get something done. Plus, it seems to move me slightly out of that crash critical zone.

Anyway, I've paused the experiment on the pills but hopefully will get back to that.

I did speculated about this in another thread once I heard about Prelief and read some of the reviews online that that may be why if I stay consistent with my diy electrolyte (alkaline) my bladder pain improves sometimes to the point of no pain at all.

I just need to learn to be consistent with it.

Like someone mentioned on Vitamin C, I'm starting to wonder if all supplements that are in an acidic form like Citrate or Ascorbate are triggers as well. It might be better to take buffered forms.

Coffee for me seems okay but some of the reviews mentioned it. Plus, I hardly ever eat things containing tomato. I can't do vinegar (allergy).

 

[Rachel Straub]

I have been dealing with bladder challenges of varying intensity since March 2020 (severe pelvic pain, burning, uncontrollable itching, etc.). My doctor referred me to both a urologist and gynecologist for further testing, but this was a waste of time. I have only recently become asymptomatic. The culprit for me has been 100% rooted in my GI system, predominantly candida (though all tests have typically been negative). My doctor estimated 12-18 months of Candida treatments, but it's taken me 2.5 years (and I have suffered through never ending Herxheimer reactions). My program has consisted of prescription antifungals + extensive herbs (which included treatment for parasites, leaky gut, dysbiosis, etc). Over the past 10 years, I have amassed an herbal library of 150+, so it's impossible to list everything I have taken (though many things can be found in my case report). I typically take ~30 different herbs a day (and add other items as needed). Stephen Buhner's books, in combination with my doctor, have been my primary sources for herbal information. My doctor has given me antibiotics (as chronic UTIs have been suspected), steroids, prescription antihistamines, etc. but all these items (for me) have been useless.

 

[splusholia]

I have found women’s probiotics to help with this issue somewhat. And possibly zinc carnosine — seemed to help my tummy, which then helped my bladder.

 

[Rufous McKinney]

I got some DMSO....and now have decided to try it topically over my bladder area, and include the Copaiba Oil I have here.

Anxiety causes the bladder issues to be far worse. But when totally calm, I still often feel the bladder suffering on.

so results are tricky to interpret as its all interacting,.

when I used DMSO for the first time (on my shoulder) it itched intensely for about 20 minutes then subsided.

so now its odd I feel no itching on my stomach near my bladder.

 

[Rufous McKinney]

SAGA PRO did not seem to improve my bladder this time. I took them every day for several weeks. Half are left, typical.

I'm back here speaking to myself. I think I'll toss out the Saga Pro. I swore it helped before.

Anyone ever heard of:

Phenazopyridine​

My doctor is getting me some. I'm hoping I can tolerate it for stopping this bladder pain.

It's really debilitating. Its interfering with rest, napping, its bad.

 

[brenda]

I must retract what I said earlier, about birch leaves Yes, while they did help a lot and cleared IC a number of times, there came a point, a few months ago when nothing was working for more than a few days and I was in agony often and even quite lost the will to live, it was so bad.

But I have it under control and even might say cured, due this time to quitting all grains. Apparently, for some they cause leaky gut and the immune system reacts causing IC, for one thing.

Since quitting grains about 7 days ago, I have also seen psoriasis patches heal, weight is going down, joints feel better, digestion is improved along with BM's. It seems that I have had this problem for a long time.

 

[Rufous McKinney]

Since quitting grains about 7 days ago

congrats, @brenda....

I'm trying to ge t very low on the grains also... but I'm literally in somebody else's house without any decent food, and traveling and this half a carrot I just found had better cure my list of issues.

And my insurer refused to fill the RX for Pyridium.....(it's expensive)and the pharmacy says I am to take some Over the counter version....

sniffle

 

[brenda]

@Rufous McKinney

I had read No Grain No Pain Dr Peter Osborne, who says that those with gluten intolerance, more than likely have intolerance to all grains, and to other things too like dairy, as all grains have gluten but a different type. I decided to come off them slowly as I am 73 and such a big change would be a shock to my system, I also wanted to use up my stores and not have to throw a whole pile of food out again.

However, I caught a pretty nasty virus (I think it was one anyway) and did not eat for about 5 days apart from fruit and when I began to eat again I reacted very badly to some rice syrup or something in a product and decided that I would quit then.

I had also been cutting down on oxalates, and as it was too hard for me to work out at the time to do both, I decided to concentrate on cutting grains but keep as much oxalates out without leaving me with nothing to eat. So I bought some keto bread mix which has almonds in but use the buns I made as little as possible (they are delicious btw). I also kept dark chocolate in but might have to cut that.

I am eating meat, fish, fruit and most veggies but keeping carrots down. Also eating legumes which Osborne says has to go. I am using mung bean virmicelli to make stir fry. I quit dairy for a few days but might add it back in so I can have white chocolate instead of dark for the oxalate.

So very restrictive atm. I am very happy with the progress though especially weight loss.

I really feel for you if you cannot adjust your diet at the moment but all you can do is tread water till you are in a better position to tackle your health problems and try to keep anxiety about it at bay. I have had to wait a long time till I recovered from cPTSD which took till my 60's. I think it has really helped that I always went to alternative treatments and stayed off pharmas. I have been heavily poisoned with mercury and pesticide though and damaged by that.

The suffering I have been through has served my spiritual growth a great deal for which I am grateful.

 

[Rufous McKinney]

The suffering I have been through has served my spiritual growth a great deal for which I am grateful.

I am sorry for suffering you've faced, but understand what you mean. I am a very different person, in so many ways, after All This.

and to other things too like dairy,

I need to fully evaluate these dietary issues. Perhaps literally start all over. I"ve never done a really strict elimination diet. I am rather ad hoc.

In about a week, I'll be somewhere where I can regroup on my life.

So very restrictive atm. I am very happy with the progress though especially weight loss.

I lost weight a number of years ago, (advice to others- do that much sooner)...in my early 50s...I need to eat MORE calories.

 

[Rufous McKinney]

Anyone ever heard of:

Phenazopyridine​

I am trying out one pill. Maybe that is half the OTC dose and 1/4 the Rx dose.

Half a Xanax did not calm it down. So I"m testing this just take one and see.

 

[Rufous McKinney]

Move Update:

its all really intense now, even tho I can do alot of resting, body is keyed up and many lose ends.

some obstacles being cleared, for which I am grateful.


A few more arise, not surprising.

I have not been over to see my husband and thats concerning....later today daughter will be checking on him.

We got a new transport chair! Its spiffy.

I had to walk to the breakfast thing yesterday. It was too far. This is the problem with us. I think well, I'll just stroll a bit further than I'd like. But then coming back, I lost it. Then I ate some salad, contraindicated. Instead of better today, its worse today.

I just canceled my brother stopping by this weekend before we go.