The Caffeine Disaster

IMG_4101I have a deep emotional bond with coffee. After I regained the ability to drink it without it tearing up my gut, coffee and I took our relationship to a new level. I switched to a Chemex, and found locally roasted beans. I developed a morning ritual around the brewing of coffee, and it became an essential prelude to each day. I even took the Chemex with me on a family vacation. But as with many good things in life, I didn’t know how much I needed it until it was gone.

Last year, I developed pelvic pain. I won’t bore you with the many rounds of appointments and theories spawned by the advent of this pain, but the working theory right now is interstitial cystitis. I know many ME/CFS patients who have it, so I wasn’t shocked.

That is, I wasn’t shocked until the doctor told me what the first-line treatment was: eliminate citrus, tomatoes, caffeine and spicy foods for three weeks to establish if they are pain triggers. Hold up. Caffeine? I don’t care about the rest of it, but no caffeine in any form for three weeks? Meaning no coffee, not even decaf? I was not happy at the prospect, but I sure did not like the amount of pain I was in, so I agreed to do it. I chronicled my distress on Twitter.

I was trying to be funny, but it was actually very difficult. I didn’t get caffeine withdrawal headaches or anything like that. But my cognitive function fell through the floor, as if someone had pulled the lever on a concealed trapdoor. I took two hour naps every day and when I was awake, I could barely do anything. I was miserable. My husband even begged me to go back on caffeine. Meanwhile, the pelvic pain improved at first and then reverted to its previous up and down pattern.

IMG_4299Determined to complete the experiment, I reintroduced caffeine to see if the pain increased, which would suggest there was at least some benefit to skipping caffeine. Nope. The pain maintained its pattern, despite my consumption of copious amounts of coffee.

But now I had a new problem. When my cognitive and physical function tanked after I gave up caffeine, one of my doctors prescribed a stimulant medication. Now when I drink the same amount of coffee as before, I feel like I have overindulged in caffeine. The stimulant medication plus a large strong coffee is too much, and I feel jittery and uncomfortable.

All this goes to show that tinkering with routine has to be done carefully. I had no idea how much I had relied on caffeine to function. One doctor said drop it, another doctor offered a drug to compensate, and then reintroducing caffeine made me feel lousy.

After more than two months of experimentation, I think I’ve found the sweet spot. I take the stimulant medication, and I can have a smaller, weaker coffee but still feel ok. My brain is back online, and I can enjoy my coffee ritual.

And the pain that started all this in the first place? Yep, still there in basically the same pattern. We’ve moved on to another first-line treatment – physical therapy – but that doesn’t seem to be helping much either.

Life with ME/CFS is an ongoing series of experiments, of tweaking one thing and then needing to tweak more things in response. I don’t recommend attempting it without caffeine.

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28 Responses to The Caffeine Disaster

  1. JaimeS says:

    I gave up coffee too, as part of my process-of-elimination-of-potentially-worrying food and drink items.

    Just like you, no dice. I was off it for a week and found myself lethargic, brain-fogged, and even more confined to my bed than usual. It was the worst. I stuck to it for a week, figuring that any food-intolerance issues would have departed by then, but I never experienced the lift in energy I expected from caffeine withdrawal being over and done with.

    On the other hand, some people really benefit from removing it from their lives, or so I’m told!

    The life of a PWME is one, giant longitudinal study.

    • Jennie Spotila says:

      Yes!! The tagline for this post could be Your Mileage May Vary. I know many patients who have eliminated caffeine for a variety of reasons, and who cannot tolerate it at all. But I know patients like you and me who can’t function without it. One friend is only able to function as a Mom by the grace of caffeine.

  2. Barbara Simons says:

    I suffer from cystitis forever. Cure: no spicy food,no fried food,no sex. Warm baths in clean tubs, no bubble bath etc, heating pads.

    Sulphur meds are the best but over the counter Azo is very good except you pee dark orange.
    Good luck.

  3. Cindy says:

    Thankfully this is one symptom I haven’t had (not yet anyway). I MUST have a cup of coffee in the morning as it helps my pain. My FM/CFS doctor has also recommended a half cup in the afternoon.

    Your post was spot-on, and I love that mug! It’s so nice to be connected to others who understand.

  4. Chris says:

    Jennie, sorry to hear about one more problem in your life–but your alleged loss of brain power has not shown up in your blogs! I have never been a coffee freak, but do have a glass of good green tea to start the morning, and that is usually my caffeine for the day. But its lack has not brought any flow of free energy or brain power–I think we are doomed if we do or if we don’t. I think one moral of your story however is stay away from doctors—they exchange one problem for another but usually don’t resolve the underlying issue. But I don’t have that IC stuff–guess men don’t get it?

    But live without oranges or tomatoes–no way!

    • Jennie Spotila says:

      IC is uncommon in men, but they do get it!

      • Carollynn Bartosh says:

        My father-in-law suffered from terrible “cystitis.” When I heard the symptoms and the foods and drinks he could no longer have, I realized that it was IC. His was a side effect of radiation for prostate cancer ten years earlier. At the time, alms ten years ago, it seemed to me both that doctors made it sound more serious when men have it and also that they hadn’t fully explained the potential side effects of the radiation treatment earlier; that there was a forecast for “potential bladder problems,” The delay of a diagnosis of cystitis caused much fear and suffering for him and all who loved him.

        I’m guessing that IC can be commonly concomitant with other post-infectionous diseases. A dear friend passed away (in her late 70s) last year who had contracted polio as a child in the 40s, and her last decade included many attempts at calming down her very very painful bladder: Botox injections into the bladder, surgeries, finally a catheter and a pain pump. So for some it does progress. I may be in denial, but I’ll continue to enjoy what I can while I can.

  5. Kati says:

    Hi Jennie,

    I wanted to share a weird experience- I developped a transcient Interstitial cystitis-like problem following a 2 days exercise test last year. It was very clear to me this was happening but for good measure I asked my dr for a urine culture- because the problem could have been a bladder infection, but no, that was ruled out. It was not about the bike seat being uncomfortable either.

    I am thankful that the symptoms went away after about a month, because it sure is very annoying and painful. But man, that was weird. My theory is that something happens in the brain following exercise for us ME patients.

    I now know I can’t do any more of these CPET, even for research. i haven’t quite recovered from the last one from spring 2015

    Best, Kati

    • Jennie Spotila says:

      Interesting, and I’m glad it was transient. I wonder if there was some kind of autoimmune activation that calmed down as you recovered? I haven’t noticed a correlation between the pain and PEM, but I’ll be more cognizant of it.

  6. Carollynn Bartosh says:

    I”ve been wondering about your experiment–the why and the outcome. I’m sorry you have developed IC, too. The pain can be debilitating. But managing it does get better over time and learning (the painful way) one’s own worst triggers.

    I developed IC ten years ago; it was adding insult to the injury of ME/CFS. I’d always had an excellent diet, and though I was disabled, I felt like I had bragging rights about what I ate. Breakfast was fruit with whole grain no-sugar-added cereal, with soy milk or plain low-fat Greek yogurt, basically a muesli. Lunch was fruit and a handful of nuts. Dinner was lean meat and a salad or cooked veggies, most often with my beloved tomatoes. And now, most of the fruits, orange juice!, lemon vinaigrette?! soy!, yogurt! tomatoes?!, and coffee?!!! Not coffee! Not my one glass of wine!

    The bad news of managing through diet–because the medications don’t do much–weighted quite heavily with me. Before becoming disabled with ME/CFS, I’d worked in marketing and PR for chefs for years, so I turned to my last bosses to help me figure out what joy I might possibly find in food again. They put me in touch with a chef they knew who had the condition too. What that chef told me is what’s ended up being true for me. We both eliminated pretty much everything at first, and then tried things again, paying attention to what set it off. She said then that she was eating almost all of the forbotten foods, some sparingly, that her discomfort was mild, plus she had a staff restroom for frequent urination. It was livable that way.

    Morning coffee ended up being less of an issue for me, though if I had a any later in the day the bladder pain would flare up. As I studied up on IC, I discovered that my morning coffee tolerance was probably because of the supplements I was taking first thing in the morning, before the coffee, which included Calcium. Calcium, you may know, is a component of the antacid Tagamet. I also remembered that in Cuba they put a few grains of salt in the coffee to neutralize the acid. You can’t taste it, but it helps.

    Also as I was reading up, I learned that a dry white wine like Chardonnay was more tolerated than reds as well as any of the sweeter whites. It’s counter-intuitive, but the sweeter whites require added acids (even natural ones from other grape varieties) so they can be much more acidic than a dry white. Also, these whites from generally cooler temps further north were also higher in Malic acid–something helpful for POTS and other orthostatic issues. I realized then that for all the years I worked with chefs, bucking the verbal jabs about red wines being better, I “liked” a good Chardonnay more because it fostered some real well-being. Truly “gut sense.”

    A couple of years after developing IC I also developed chronic shingles (HHV-3, herpes zoster or zoster varicella virus). I see Dr. Chia, and though being on the highest doses of Acyclovir help (800 mg 5x/day for 6+ years; the other anti-vitals can’t be used long term), I’d still have break-through flare ups of shingles, especially problematic in my eyes and one ear. He added Cimetidine–generic Tagamet–to my meds because it helps keep the Acyclovir in the system longer and helps tip the immune system toward Th1. These smoldering viruses we all deal with as well as allergies, IC, etc., point to being way too Th2 dominant. So dosing up or down on Cimetidine with the shingles flare ups has been a really helpful tool.

    But the happiest surprise for me was that the Cimetidine really helps IC. with that morning cup of coffee and my evening glass of wine. I can have a few tomatoes, yellow or orange if they’re raw though not red. Cooking changes some of the enzymes, so some tomato sauces are okay, but others not. Citrus works in a vinaigrette, but I can’t eat a whole orange or the wonderful tangerines from our tree. The worst foods for me are OJ, strawberries, tofu. I can now have a peach or nectarine again, but not two or three, and not two or three in the same week–but sparingly is still a joy. I have come to love Gravenstein apple juice (another northern, colder temp fruit variety high in Malic acid, good for POTS) though I still miss OJ. I can have a small amount of dark chocolate but not a lot. Some brands will lead to IC pain, others not.

    If you’re now thinking about trying Cimetidine, your doctor can give you an Rx, but beware that the Rx versions have outter dyes. If you have IC, the dyes can really really hurt. The only white version is OTC 200 mg. On the internet you’ll find that a 400 mg white version is available, but talking with five different pharmacies directly and even a distributor, no one can figure out how to get it. So it gets expensive.

    Cimetidine is also an H2 blocker, related to antihistamines, so if you have allergies, it helps a bit. I take one 200 mg tab first thing in the morning, and then one at bedtime. If I’m having shingles, I add a third, even a fourth, for a couple of weeks.

    If you’re following the new studies on how antihistamines are in a class of drugs, the anticholinergics, that are implicated in developing dementia, Cimetidine is in group 1–preferable to Benadryl/diphenhydramine which is in the worst group, 3. Benadryl can also help with IC. If you’re in a terrible flare, relief is worth it.

    Also, since people with ME/CFS seem to be prone to the “rare and unusual” side effects of most drugs, Cimetidine can increase estrogen, so be careful if you have issues with that. The first year I was taking it I was taking 800 mg/day, and it brought me out of menopause. None of my doctors had ever heard of that, of course, but it’s in the tiny fine print. 400-600 mg/day has not had that effect.

    Good luck with enjoying foods and drinks again, Jennie. I think in time many of the things you miss now may be able to be part of your world. Like all things with chronic illness, it’s a smaller world, but maybe at times a more mindfully appreciative one.

    P.S. If I’ve mentioned any foods that set off an emotional alarm, I’m sorry. I know how that is. You may do just fine with those.

    • Jennie Spotila says:

      I should have talked to you months ago! You clearly know more than the doctors I’ve seen. The food trigger experiment was a total bust. I cut out all the trigger foods and added them back in one at a time. There’s no correlation with the pain.

      • Carollynn Bartosh says:

        I’m always glad if I can be of help. Goodness knows how much you help me through all of your blogs and advocacy!

        Somethings that are triggers for me that I forgot to mention: Vitamin C supplements, acidophilus. I can have any other kind of “dophilus”, just not the one that starts with “acid.” Interestingly, formulas for babies don’t have acidophilus, so I use those.

        Other medicines can come with dyes also. For me, the darker the dye the more likely it’ll trigger. It’s really hard to find things in plain white. I don’t order and Rx’s for mail delivery, despite repeated calls from our HMO to do that, because they’ll invariably change to the cheapest and dye-colored generic they can find. My three pharmacies (because their distributors and plain-white options each vary) all know my needs and will call around for me when their distributor makes a switch.

        • Carollynn Bartosh says:

          Also–as I just looked up cystitis in men again, I noticed mention of avoiding potassium citrate. Of course, that “citrate” is the wonderful sourness of citrus. Check all of your vitamins, supplements, and drugs for any kind of citrate, and switch to a none-citrate version.

    • Jane says:

      Carollynn (and Jennie to part of this), you paint such a beautiful pictures of food, nature, and the enjoyment of all the “little things.” Thank you for that! Super interesting about Tagamet and estrogen/menopause. I wonder what mechanism of the med causes that. W/ the risk of infection and SIBO in ME/CFS patients I’d hesitate to kill too much stomach acid which kills the bad bugs (and helps absorption of calcium, magnesium, B-12, and I think another which I can’t recall), but obviously the benefits seem to outweigh the risk. But, very curious about the malic acid and POTS connection to it potentially helping. Been thinking I should get more malic acid (for energy production). Have POTS. One malic acid caused a rash, but Source Naturals doesn’t. I read the post and story about brain shrinking effects of anticholinergics and drugs in the difference classes that Dr. Lucinda Bateman shared. Very interesting. Their name lends to the idea that they lower cholesterol? I wouldn’t generally think of Benadryl or Tricyclics doing that. I definitely think of Lipitor and major cholesterol lowering drugs…of course the brain is largely made up of cholesterol. Lowering it all over the body, non-specifically w/ a drug sounds like a bad idea. Interested in further research on anticholinergics. After re-onset/relapse of ME/CFS and I believe around when I had repeat angular chelitis (6-7 times in about 6 mos!) I had what was believed to be IC…I just didn’t desire undergoing the urethra scope/injection to completely confirm it. It lasted for maybe 2 mos and I’d have short bouts of it thereafter. I believe I had it w/ ME/CFS as a teen when sickest too. Frequent urination and burning when peed often but no infection. I also get a band of sensitivity and pinchy pain across lower abdomen and low back at times for a few days…often pre-cycle when get it. Some kind of pelvic pain. A semi snug underwear or pants band is quite uncomfortable and irritating when I’m experiencing this! I tend to want to keep pulling at it. But it passes thankfully and I don’t have other allodynia (?) type pain issues. Carpel Tunnel Syndrome has recently occurred after typing way too much and at a bad angle (on the bed) w/ 2 classes. I’m 24 and at about 14-15 I had nerve conductivity testing to rule out MS etc and it found the reason for the tingling & slight shaking in a few fingers was some “entrapment” in one or both wrists (this time it’s just like more fully activated /inflamed CTS…fortunately worse in left wrist and right is dominant side). Often in people it’s from fat, or inflammation. I’m petite, and slender except my behind region…obviously it was inflammation. Cytokine tests now show that. Among other inflammatory cytokines, my regulatory IL-17 is high…which is also high in RA, MS, Crohn’s etc. And I get a little eczema on my hands. Rheumatoid Factor is like 20 and normal goes to 14…but don’t worry about RA and such unless like 100-200 or something. My dad has CFS and has had times of great physical endurance WITH PACING as a building contractor, but he has also had rough years. He gets EBV reactivation. When I was a baby he had stomach ulcers, EBV, and IDK…had to sleep for a few hours after lunch at my grandparents (who babysat me) to get through the day. At 65 after a cardiac stress test, it triggered a relapse and he hasn’t regained his prior level of function or health 2 yrs later. He wanted to do the treadmill stress test but hosp said didn’t have it anymore. Chemical stress test awful…felt like heart about to explode. They have now switched back to treadmill test. Psh. A little late. He got through triple bypass open heart surgery (didn’t know had genetic pattern B LDL cholesterol…causes a handful of slender, active people to have massive heart attacks without much warning. Thankfully a small heart attack or 2 which damage has since healed, caused A-Fib that was harder than usual control so checked cardiac enzymes and found had problem & widow-maker waiting to happen) and a few bumps in the road/stents after w/ no major relapse…but that dang chemical stress test did it! Mom we found out has mitochondrial antibodies (liver…IDK why called mitochondrial or related to that for sure). They are not active and since she is post-menopausal they probably will not cause ruining of her liver or go full blown. She takes longer to fight colds and they grind her down more than the average person but no one knew why. Dr. Peterson investigated my parents (and myself) to try to better figure me out. Still working on it. But, basically I got some unfortunate genes from my parents. Both are carriers of hemochomatosis Dr. P discovered and I don’t have that…probably against the odds…so that’s fortunate. My ME/CFS was gradual and then acute…viral in nature but a yet to be determined specific viral trigger. Tonsils were red and swollen months at initial onset. So, finally getting them out next month. Hopefully some viral testing on them will yield answers. The “Mestinon Miracle” post on Health Rising recently was also tremendously interesting! I enjoy all the small things, but ME/CFS is sure quite the adventure! We often become our own experts out of just wanting to live our best lives and feel better. And that was long. Oops!

      • Carollynn Bartosh says:

        HI Jane–I”m sorry that you and your family have suffered in so many ways and for so long. I can’t speak to all the you wrote about but I’ll address the idea that Cimetidine/Tagamet might put out the fire of digestive acids needed to fight pathogens in the gut. I had followed that line of study for a few years, and even embarked on Dr. Paul Cheney’s protocol. The idea was that people with acid reflux didn’t have too much acid, but too little, and it could be addressed with taking Betain HCL. I did not have acid reflux, nor were my ME/CFS symptoms gut-centered, but I wanted to be sure that I was killing pathogens so I embarked on the Betain HCL protocols. And soon after developed Interstitial Cystitis. Was it related? That genie is out of the bottle; I’ll never know. But I did stop the Betain HCL promptly.

        I have thought of this issue often in the subsequent years as I take my Cimetidine, but I continue to take it because the life-changing illness of ME/CFS is already here and it helps keep the pathogens my doctor has ID’d at bay. It helps push the immune system back toward Th1 from its stuck place dominated by Th2. So I may suffer consequences of this down the road, I know. But I’d be probably blind in my left eye and deaf in my left ear because of shingles there if I didn’t continue this regimen. None of us like these choices!

        Slightly addressing some of your other concerns, everyone’s “cocktail” of pathogens and conditions is different, and it gets really complex when there’s a mixed bag of Rheumatoid Arthritis and high cholesterol–both helped by the powerful anti-inflammatory statin drugs–and viruses like all of the HHV’s that can be turned on/reactivated by them. Anti-inflammatories push us toward TH2 dominance, and in my case I was already way to Th2. In my quest for ways to help my chronic shingles/HHV-3/zoster varicella virus, I’ve had to get rid of all drugs, supplements, lotions, shampoos, that have that anti-inflammaotry action.

        I hope for your sake and all of ours that there will soon be Centers of Excellence where these complex tangles of illness can be unraveled and treated. It sounds like you and your dad have become your own best advocates, and I wish you both strength, and more good days.

      • Carollynn Bartosh says:

        This is getting off topic for Interstitial Cystitis, so I’m writing in a different thread: Jane, good luck with having your tonsils out next month. Will your doctor be able to biopsy for viruses?

        I had sinus surgery a few months ago, and thankfully being also under the care of Dr. Chia (the enterovirus specialist) was able to arrange with the hospital for him to get a biopsy for his research. He tested and found enterovirus in my sinus tissue’s RNA–which means that the virus in embedded there. He has previously found it in a biopsy from endoscopy. I do have elevated blood levels of EBV and HHV-6 as well as Coxsackie B5 enterovirus, so I’d be curious to know if the other viruses have inserted themselves into my RNA as well. (What a crowded tenement my cells must be!) I have not looked into it, but I wonder of Dr. Montoya (EBV specialist) at Stanford and Dr. Peterson (HHV-6 guy) at Simmaron accept biopsies for their studies. Of course I’m a patient of Chia’s, so it makes sense. I couldn’t afford Peterson once I got to the front of the line of the waiting list, and I hear that Montoya’s wait list is about two years. For now, I bring their studies to Chia at my 3 or4-times a year appointments and we discuss.

    • Carollynn says:

      I was just reminded of another benefit of some white wines, which may be good news to people hoping to toast to Independence Day this weekend: make sure your white wine is aged in oak. Oak wood contains “roburins,” something that seems to help a long list of things common to ME/CFS. I just read up on it in a newsletter from Prohealth. Cheers!

  7. Anonymous says:

    I am very sorry you have another thing to contend with! (As if ME patients didn’t have enough already!) I hope you find relief.

    I drink black tea. But for many years I could only handle two cups a day. If I drank more than two cups my stomach hurt.
    After eliminating dairy (I used to have milk in my tea), I can drink up to 4 cups a day with no problem.

  8. Jennie, you will understand my anxiety when I read the word ‘physiotherapy’ for a PWME…exertion is toxic. I hope this physio doesn’t include ‘exercise’?

    • Jennie Spotila says:

      No, the PT has not assigned any kind of endurance or aerobic exercise. Everything has been stretches and isometric stuff. I’ve been able to do it without PEM.

  9. Kathy D. says:

    Oh, gosh. I sympathize on your pelvic pain. I had it, lots of ailments, ended up having major surgery as I reacted to all kinds of medication.
    When I got ME/CFS, I became alcohol and coffee-intolerant. So I switched to tea and have had that for years. I have so much trouble sleeping that I try not to have caffeine late in the day.

    However, I do have to go to events sometimes or do something and I have to stop and buy iced coffee on the way. I had to be at a dinner a few blocks from home in May, and was tired and bought a big iced coffee on the way. As I felt myself sink and lose energy and wish I were home in bed, I kept drinking that coffee. It kept me going until I got home.

    But I get even more hyper so I try to keep the coffee consumption down.

    However, when I can’t go somewhere or get something done, I do get iced coffee. I add chocolate when needed. When I leave my house now I buy iced decaf which has enough caffeine to get me through a few hours.

    The hyperinsomnia is so bad that I really have to limit caffeine.

    I hope you get to the root of the problem. I also worry about physical therapy. I don’t think I’d last long with that or else I’d get post-exertional muscle pain and/or relapse for days. Hope it goes well.

  10. kathy d. says:

    A question to ME/CFS sufferers: Does anyone else get hyper late a night? Or even during the day, talking a lot, feeling hyper? I’m questioning if it’s caffeine: had a de-caf iced coffee at 4:45 p.m. Is it medication? Took nothing today, except in the morning to get more sleep as I never sleep more than a few hours at a time.

    This is so bizarre.

    Also, how is memory?

    • Carollynn says:

      Hi Kathy D.–

      About ten years ago I remember reading replies in a patient forum about what can set off PEM for people. I was saddened to read “getting too animated.” I realized then that the times when I might feel pretty good for a couple of hours and enjoy socializing–even gentle socializing–but if it involved conversation and laughter, the things we all want and need more of, I would pay for it. I had paid for it, for a few years. Since then, it’s a payment I accept to feel more human, more normal. I may manage it a bit better. I’ve also found that napping in the afternoons is essential for me to have better sleep at night. I think that when I skip this nap, I shift into adrenal overload, and then I can’t sleep. There’s no warning light or sound to let us know when we’ve tapped into our “second wind,” but if I go there I will pay. Sometimes life just demands of us to miss our rests, or to be there for someone else. May acupuncturist says “the good news is that you can when you have to,” but knows that it may take days or weeks to recover. I’m guessing that something like this is at work for you in those “hyper” and sleep-less times, but only you will know if that feels like your experience. Best of luck. And good sleep to you!!

  11. Kathy D. says:

    Sleeping is often impossible for me or just a few hours. I have a phone call every Saturday morning, and often I am on the phone with NO sleep or two hours and then I’m wide-awake until after the call, and then for only 2 or 3 hours. And my day is shot.

    • Carollynn says:

      The same thing happens if I take a phone call after 5 p.m. Mostly, I can just avoid being on the phone at that time. Are you able to shift your Sat. call to a different time that might be more healthful to you?

  12. Kathy D. says:

    I can’t. It’s not up to me to decide the time of the call.

    I have no idea why I can’t sleep. I have to watch the caffeine. On Wed., I drank iced coffee because I had an appointment and no energy and then I walked home. It was pleasant but I was wired until the morning so was up all night.

    • Carollynn says:

      Hi Kathy–I’m so sorry for your poor sleep on Wed. I know the situation of needing the boost, and then feeling up to doing something, only to have it throw everything off. I miss walks, also in the “throw everything off” category for me. But sometimes I’ll talk one anyway. We need those pleasant times even if they’re disruptors. I’m so sorry that you pay so dearly.

  13. janeasinner says:

    IC is very easy to diagnose. If you have it your Urologist will do some tests. He should tell you to take Elmiron and Elavil. Get off stimulants, it is causing you more pain and damage and you’ll get addicted. Not good. I’ve had it for some years now and I do watch my diet, but now it is well controlled with Elmiron and Elavil.
    Do this.
    Your welcome.


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