Could there be a link between Stomach meds and FM/CFS?

Discussion in 'Fibromyalgia Main Forum' started by Cromwell, Jan 16, 2006.

  1. Cromwell

    Cromwell New Member



    You know a few people I know, including myself, seem to have started getting the FM after having to go on proton pump inhibitor meds(like Prilosec et al)long term. I mentioned this to my FP and he said he was thinking along the same lines, that there may be a connection. I know the side effects listed do say arthralgia, muscle aches etc. I cannot stop taking them as when I try the Reflux just kills me. I know Nexium is really Prilosec with magnesium added-do you think they added the magnesium because they were trying to combat complaints of muscle pain? I also know that people who take a lot of other meds often need a stomach med too. Any comments? If I get a lot I will contact the drug manufacturer for sure.
    Love Crom
  2. mariee

    mariee Member

    Interesting.
    I did start taking Rantidine 6 months before I got sick.
    HMMMMM!
    Never connected the meds....always thought the need for Zantac was related to onset of illness.
    I am interested in seeing if others have had similar experiences.
    Thanks
    Marie
  3. Toga

    Toga Member

    I had a cough for a year and a half. Every few months my primary would put me on a Z-pack. Well, the coughing continued.

    Finally one Christmas Eve I coughed and something popped and the pain was excruciating. My husband took me to the ER and I had broken two ribs.

    My primary had me come in the day after Christmas and couldn't hear anything wrong with my lungs so he told me to see a Pulminologist (I can't spell that, you know a lung doctor.)

    He's the one who said I had GURD. He gave me a bunch of Nexeum samples. But my insurance wouldn't cover the Nexeum. They made me take Prevacid.

    I took it a while and the coughing came back. Now I take one morning and night and have for a couple years.

    Do you really thing there's a connection? I was Dx'd with FM a year or a little more after this.

    And, if so, what can we do? A few weeks ago I tried taking one pill a day but the coughing started again. So now I'm back taking two a day again.

    Toga
  4. dunnlb

    dunnlb New Member

  5. Cromwell

    Cromwell New Member

    ...Where can I read the thread on her board? I have been an organic, fish eating ovo-vegetarian for 35 years,lots of raw foods, so I do eat an extraordinary healthy diet and that includes what I drink. However, when this stomach thing first kicked in I had a case of farmers lung from mouldy hay and had to go on strong antibiotic. Not that long afterwards I got the GERD that was getting the acid in my lungs and all over. Docs at that time said it was due to lax esophageal sphincter due to sliding hernia from lugging around hay and such at the farm. At the time we kept our own goats(organically) and made our own yogurt which I ate lots of, but I know that probiotics should have been used then too, although with the raw milk the yogurt was pretty beneficial too. In Oregon, from tap water, I got giardia and crypto and was put on that awfully strong antibiotic for two three week courses, as I could not stop retching, so that probably cleaned my gut right out. I retched constantly for 4 months and looked as if I had been in a concentration camp. They put me on Tagamet then and Propulsid. The latter ended me up in hospital with heart pains(which of course at the time they dismissed as no connection and we all know now that they removed that drug later on). Since that time, I have tried endlessly to get off the Proton pump pills but the acid just kicks right back in. I have been on rice diet and enzymes to try and ease off. My old gastro(who died young) was going to use a miniature "sewing machine" procedure to put a tuck in the sphincter, but as I said he died. My last endoscopy I had five polyps right in my stomach, that were causing pain and bleeding,even though docs say they don't hurt, they do, as pain stopped when they were removed. ANY more advice you can give me I would relish, like what sort of enzyme etc. I absolutely know that if I do come off for three days even taking bicarbonate instead, the FM aching diminishes, but then I am in agony with GERD with acid rushing into my throat and lungs. (The Aciphex is just as bad by the way to Q on that). I also just read somewhere that people on proton pump inhibitors are far more prone to get food poisoning and other viral illnesses due to lack of acid. Right now, I have managed to get down to one 20mg Prilosec a day. Tried the new melting Prevacid but that gives me awful chest pains. The only other meds I take are (rarely) coated asprin, very rarely, tylenol and the 2mg of valium I am taking for the vertigo once a day at bedtime. I am one of those people who would rather suffer than take meds as none of them agree with me. I have tried a few in the past but only for three day periods. I take folic acid, but eat such a great whole organic foods diet(macro in the main) that I would be super healthy but for the GERD and the FM. I have children ranging in age from 40 to 11 by the way,(a feat in itself!) have my own natural color(blonde) no grey at all hair, good skin,good weight for height, and never need much dental, maybe once every six years the odd small filling needs repair-plus I exercise. So I see a big link with these acid reducers as otherwise I cannot see any reason. Just list exactly what I can do will you? Blessings for that.
    Love Anne
  6. Toga

    Toga Member

    Ok, I'm going to start the plain yogurt, aloe, and lemon juice in the morning.

    My question: Will this work if I continue the Prevacid? If this medication must be discontinued how do you treat the problem that the med was rx'd for in the first place. Coughing constantly was very tiring and my right side ached constantly.

    Thanks,
    Toga
  7. dazedconfused

    dazedconfused New Member

    I went to my family doctor for my bowel problems and was put on previcid just a few weeks ago, until then I had never taking any stomach meds. Oh and btw the previcid did nothing for my bowel problems, I don't know why she gave it to me. Any ideas?
  8. Toga

    Toga Member

    I've never heard of Prevacid or similar drug for bowel problems????

    Toga
  9. 69mach1

    69mach1 New Member

    i have never taken stomach meds before this...

    jodie
  10. Cromwell

    Cromwell New Member

    is for GERD it is designed to reduce stomach acid by turning off certain propton pumps in the stomach. If anything, it would cause bowel problems. Was your doc listening as you sometimes have to use their language, such as "lower abdominal cramping, pain and either diareah or constipation" for IB and "acute regurgitation of hot burning acid into the esophagus, mouth and lungs" for GERD (Reflus disease)with upper abdominal pain often." Divide your body into quadrants(four equal parts) from about 4inches below armits to pubic bone, this way you can describe "I have left lower quandrant pain and cramping accompanied by....." or whatever quadrant applies to whatever condition. The same with neck,feet, arms and legs-draw a picture to take and shade in three colors, to describe pain(colors show degree) and write no more than five ten word sentences describing it in written form as well under the drawing. I think docs sometimes confuse what we are telling them. My doc is a personal friend but he still forgets why I came to see him as he sees so many patients.
    Love Crom
  11. Cromwell

    Cromwell New Member

    Thank you so much for your interest and reply. Also another poster mention Prilosec not causing but maybe as you say it is a contributing factor. For eg as I took mine this morning (I get it on scrip not OTC although same package) the pharmacist had written right across it "May cause dizziness" - never seen that brought to such close attention before.

    I used to get a gravity fed raw milk(gravity pasturisation is a way of treating raw milk so that it can do no harm from bacteria etc. yet it doesn't alter milk as heat pasturisation does(same goes for cider by the way)but I try and just stick to organic milk here. Lots of states permot the use of growth hormones in cows (pretty cruel for the cows too as they stagger about with huge udders plus have to live on pounds of bicarbonate due to excess gas and stomach issues)so at worse I would get one that says not treated with BST or Hormones.

    I will certainly go and buy the probiotic you recommend, I was looking for Florastat as I also think when one has upper endo that they flush the gut too. As I get constant little yeast sores in the corners of my mouth and other end too!!! I do think I have some yeasty thing going on.

    I also pay respects to the poster who mentioned that we do get a bit paranoid looking for causes. I am not really that type but I have friends who are like this,they go the all or nothing route, some of them making themselves very ill in the process. I'm talking here about people getting sucked into snake oil salespeople "cures". This is why I wrote this post as my doc had mentioned he was seeing a link between muscle stiffness and soreness and his patients of PPI's long term and I thought why not see if there is a link. It was more the FM than CFS by the way.

    An aside, I was just bragging the other day on post that I had not had a cold in years and jokingly said, now I've said that I will probably get one-....well you guessed it! Son went on invited play date where the family failed to inform us they were all half dead with flu-so guess what came to dinner? I do wish people would not do that-I know germs will waft all over but it is pretty clear had my son not gone, then he would not have brought home this extra little present. Well I'm doing up with zicam and Airborne so hope this will get rid of it quickly. They have before. This virus feels like a doozy. I'll send DH to Health Food Co-op (yes we have a co op here plus a ton on CSA's)to get the stuff you recommend and try it. Much regards,
    Anne
  12. brie

    brie New Member

    You know, this is interesting as to how many people with the FM have GERD also . I have been on protonix three times a day for years as my reflux is so very bad. I also have five ulcers that seem to never go away.So you add the CHF/FM when both of them are in full swing which seems like all the time then you have the GERD and life is sometimes very long. Really that sound depressing and I am really an upbeat person but sometimes I just get tire of being tire. Anyway this is a good subject and enjoy everyone's input.
  13. CanBrit

    CanBrit Member

    I have had IBS/D since a teenager and was diagnosed with GERD 10 years ago. I've been on medication ever since. I watch my diet and have also done all the other little tricks. Raising the bed, making sure I don't eat 3 hours before going to bed, but I still need my meds. They estimate that a third of the American population suffers from it monthly.


    I was diagnosed with FM Dec 2004 which I think I had for many years but severely flared due to a virus I had in the summer. I don't believe that the use of proton pump inhibitors and FM are related. I can see how a med can cause arthralgia's but I don't see how it could cause the tender points.

    For the first five years I was on a double dose. I had inhaled some of the acid into my lungs and some also went into my ear canal. I'm much more concerned about the damage that this can do to me by not taking the meds. FM won't kill me but esophageal cancer could.

    Regards,

    Eileen

  14. Cromwell

    Cromwell New Member

    I think every one of them makes good points. Wakemeup when you mention the Zelnorm, strangely, my good gastro I had when we were in NJ was doing a year long study about putting people with GERD on Zelnorm too as they were figuring it worked both ends. The Propulsid worked by pushing the food through the gut faster but of course it caused heart problems too, but it worked well other than killing a few people. I don't mean that sarcastically, it actually worked really well and a shame it had bad side effects. I think Zelnorm may be another safer version of Propulsid as I think it from same company.

    I do think I need the Probiotics. My friend nags me about getting rid of milk in diet, but I feel good quality milk has beneficial effects, and I have tried going off it for six weeks and dairy but no difference except my skin got dry. Most Westerners have the enzyme to digest cows milk as I understand it. I do think refined flour and sugar and milk with hormones may be really bad for a person. I saw the post on bread machines and wanted to add that most store bought bread(even organic) is often made with about 20 times the amount of yeast they used to use so it rises faster. If we make our own bread we can create our own sour dough starter and keep that going instead of the dried(quick) yeasts. I do recall as a kid that my mum would make about 10 big loaves of bread with one small cube of yeast as it took ages to rise first and second times. MOdern bakeries, even good ones, only do one rising and thus use a lot more yeast and sour dough. So I think the rap on bread is the excess yeast plus commercial bread has a zillion additives.
    Thank you all so much-I am also taking great note to the arthralgia part as the pain from that is very similar to FM as is the pain from yeast-I recall that from Dr Crooks years ago.
  15. dazedconfused

    dazedconfused New Member

    You will not believe this, I talked to my FM on the phone last evening and she called in another perscription,she said to take it for 10 days and if this don't work she will send me to a gastro. doctor. I called the pharmacy and they said she called in protonix. I was in just such disbelief, so when I go to pick up my scripts at the pharmacy, I am not getting that one. I called a gastro doctor myself and made an appointment for Feb.6th. I am so tired of doctors that don't listen. I do not have GERD or night time heart burn.
  16. karatelady52

    karatelady52 New Member

    I sure would've thought that a year ago because I've had stomach problems and so many different types of meds since my 20's (and that was a long time ago).

    BUT, this past year I was diagnosed with lyme disease and viruses instead of what I thought was FM/CFS --- my other doctors never thought to tested me for viruses/bacteria.

    I don't know if the lyme caused the IBS but I'm assuming it did since I believe I've had it since I was a kid. The stomach issues didn't start until my 20's.

    Sandy
  17. Cromwell

    Cromwell New Member

    DID THE aCIPHEX GIVE YOU DIAREAH. iT DID FOR ME. tHEY WILL PRESCRIB otc pRILOSEC ON A SCRIP BY THE WAY IN MOST STATES SO THEN IT COSDTS A LOT LESS CO PAY. i AM REALLY WANTING TO COME OF IT AS THERE IS A PROVEN LINK BETWEEN STOMACH POLYPS,THAT CAN TURN IFFY, AND ppi'S. aLSO, HERE IS A QUESTION, DOES THE STOMACH JUST PRODUCE MORE ACID WHEN WE TRY AND CUT IT DOWN? i THINK i RECALL THAT THE STOMACH PROIDUCES ACID IN RESPONSE TO WHAT IT NEEDS. so, IF WE CUT THAT ACID DOWN ARTIFICIALLY, SURELY WE WILL JUST GET MORE PRODUCED. i ALSO ACKNOWLEDGE THAT i HEAR THE POSTER RE ACID IN LUNGS AND EARS AS i GOT REALLY ILL WITH THAT, AS MY LUNGS WERE SO SEVERELY BURNED I literally was unable to breathe and had to have big supports in place to get over that. This is why I want to get off those meds but am a bit scared, as I don't ever want to get the acid so bad in my lungs and ears again.
    I am starting on the Probiotic and enzymes etc today when DH gets back from store.
    Anne
  18. Toga

    Toga Member

    Stormyskye,

    I'm going to try it too. It's hard for me to get everything together as I live in a small town with no health food store.

    My husband is getting the aloe for me today. I can get the plain yogurt. I have the Probiotics to start. DH is also getting me some garlic pills and we always have lemons around here.

    This whole thread is so interesting and makes me hopeful. When I broke my ribs from the coughing and was told I had GERD, I argued a little with the doc as I didn't really have "heartburn" that bad, nothing I couldn't manage with diet and some chewable Maalox once in a while.

    I would, so much, like to get off the Prevacid. I think I should also see a gastrointerologist. I should have done that years ago. The pulmonary guy may not have even known about the repercussions of taking that much Prevacid. (I do think my Primary should have caught it though and sent me to a gastro guy.)

    I am definitely going to give the natural route a good try. It is so much preferable to the meds.

    My stomach hurts almost constantly, no awfully, but enough to be distracting. I don't say much about it because other FM pain gets most of my attention.

    I'm also going to read the other thread you mentioned (can"t remember the name right now) and see how she is doing in her quest to get off meds and her stomach in order.

    Thanks so much for all your help and the easy to understand explanations.

    Toga
  19. Toga

    Toga Member

    Sorry,

    You must have posted it many times. I did a search on your name and also one on Stormyskyes Protocol and the shake and couldn't find it.

    I am very curious about this and what it includes and what it does.

    Thanks,
    Toga
  20. TeaBisqit

    TeaBisqit Member

    I was already long term CFIDS/FM before getting the Acid Reflux/GERD. But I have found that the pills do make me worse. They increase my FM pain by a big percentage. They make more tired. They make me lose alot of my ambition to do anything. Or they cause other weird head symptoms. But I cannot stop taking the pills. I've tried all of them. Prilosec gave me weird head feelings. Nexium made me completely suicidal. I ended up on the Aciphex because it doesn't make me feel like that, but it causes sonamublance, like a feeling of no ambition and kind of zombied out. But I cannot stop taking the pills. I've tried. I get the acid back. But what I have found is that if I stop the pills for about two days, I feel more normal mentally and want to do alot of things, even if the illness won't let me. All of these pills have side effects. I've also tried all the OTC pills. PepcidAC gives me weird head feelings and it makes me ravenously hungry. And it's not a stomach hunger, it's an all in your head hunger where you want to eat everything in the house even though you are not really hungry. I'm not happy with the side effects of any of these pills and I wish I could find a cure for the stomach problem because I know my other symptoms would be better.

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