New member - hello! Multiple medical problems- anyone else?

Hi,

I was preemie also, but my mom and 1 older sister had fibro , so was told its a genetic form of the disease.

My sister had issues for years with the diarrhea . But just got it stopped with coconut macaroon, one per day...another sister had read about the coconut stopping diarrhea and oddly enough it worked. We had never heard of that before...

Fibro alone is hard to deal with but most of us have other issues to deal with also.

When i overdue it i also pay for it with muscle pain...i use low dose tramadol , heat, stretching, light yoga , topical pain relievers.

Welcome and maybe others know more about rh.

Lj

Thank u for ur welcome and ur replies ☺️ I think being heard is as important as the information exchanged. I have read Fibro 101 which was very helpful- I was diagnosed about 10 years ago and then re diagnosed 2 years ago by a rheumatologist. I tried to 'ignore' the diagnosis at first but not anymore - it's debilitating.

And thank you! I am going to try the coconut macaroon - if it helps me, it will be a god send. When asked what's the most difficult to cope with, depression and anxiety are awful but the diarrhea is just as debilitating. And I know depression and diarrhea/gut problems are inter- related.

I look forward to learning and understanding more - and am happy I found your site.
Take care,
Jfer

hi, Jfer, and welcome! You do have a lot on your plate! I do have osteoporosis but I firmly believe it was because I took Prilosec for seven years. I had no osteoporosis before I started that drug for GERD and now I have a moderate case of osteoporosis. I have stopped that medication. If you are taking PPI's for your ulcers, you seriously might want to get off them. The FDA knows about this and is considering a warning on the labels.

I developed a bleeding ulcer a few years ago and my doctor put me on a prescription strength Pepcid AC. It tones down most of the acid and works well for me...that and Tums.

It is important to keep moving with fibro. You have to keep the muscles flexible. If you sit or lay too long, you will be stiff as a board and have more pain. You also need to pace yourself. You can't be sedentary and then be active a day without expecting a heap of pain. But if you keep doing things, however little, your body could respond and then you could find you could do more.

An example is daily walking. When I started this I could only walk four houses down and had to turn around if I wanted to make it back home. I didn't quit though. The next day I went out and was able to walk just a little further. I kept this up and I now walk at least one mile a day in the morning. Noooo, I don't feel like heading out the door the first thing in the morning but by the time I get home I have less pain, more energy and feel happy and ready to start the day. So you might try giving that a chance. AND it is a weight bearing exercise that is very good for osteoporosis!

I'm glad you read Fibro 101. There are links about magnesium malate and vitamin D3 and quite a few members have gotten help with these too. I use these along with a muscle relaxer that had helped me significantly and also ibuprofen with food and Tylenol.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Get a lawyer to help you fill out the paperwork right. Make sure your doctors are with you on you're need for disability.
Make sure that your doctors are sending in the SSDI paperwork. I found out not all of my paperwork has been sent in to SSDI. The lawyer is scurrying around now to get the information before my hearing in three weeks.

Hi Loring,
Thanks for responding! I'm sorry to hear of all of your health problems 😣 but I thank you for your help and input. I am just amazed how many individuals have so many of the same problems. It can't be a coincidence - like it is all part of some auto immune disease. Maybe I need to try the survey (I don't know if that's the right word- aka fibro brain) and ask.

What is very interesting to me is, like u have, so many of the reports of hearing problems! I have that as well, and I was in high school when, at an annual physical, they discovered I had significant hearing loss of certain octaves in my left ear. I am now severely impaired but figured it was unrelated to everything else... Now I'm seriously considering this is part of my spectrum of problems.

I have had C-Diff 3 times, once was antibiotic related, the next 2 no cause was identified, except a possible antibiotic taken 6 months earlier. It was like trying to give birth to my intestines. Now I cannot take antibiotics unless it is an absolute last resort. If I do it is vancomycin, which is only available at my hospital, or flagyl. I'm sorry you had such a horrible time with it - almost dying. So scary!😰

I almost died from a bout of diverticulitis when my intestine perforated. Thank God - I was in the hospital recovering from a broken hip and despite being on morphine I still remember the pain and it was my fever if 103 while on Tylenol that alerted the nurse. It was near midnight and I kept asking if I was going to die (I knew the danger of perforation) and no one would tell me. I had to say goodbye to my husband, daughters (ages 12 and 14) and my father thinking I may not survive. I Ended up with a temporary colostomy. Not fun but better than the alternative.

This is what people DONT see, not only the pain of let's say diverticulitis, (mine is congenital- at age 20 bc of my diarrhea I had my first colonoscopy - the Gastro said that he's never seen a bowel like mine and it must be genetic... He said I had a bowel of a 50 year old - now that I'm 50 I guess my bowel is that of an 80 year old...) it's the trauma of episodes like this. The terror of having to say goodbye not knowing if I'd see my girls? I still cry every time I think about it. I'm sure most of us here have sadly had episodes like this.

Another surgery- I had broken my other hip just twisting and screaming at seeing an earwig I tried to kill not die but run at me - lol- I ended up with a staph infection at the incision site and during a surgery to clean it out- I bit thru my breathing tube and almost died. I woke up 12 hours later on a respirator. I don't remember exactly but I had some pulmonary crisis with fluid in my lungs.

I bet we all have these stories.

I'm glad ur diahrrea is better but now constipation? That's equally as painful. The little I've had... It's like cramping and trying to go and trying to go - for me I finally go, then the cramps continue and I'll have hours and hours of diahrrea -

Thank you for writing me and I look forward to getting to know all of you!
Take care,
Jfer

Have you had a colonoscopy for your chronic diarrhea? I was actually 4 days late (well, Mom went into labor on my due date and had 5 minute contractions for 4 days, the poor dear!). But I have Crohn's disease, so I know a LOT about diarrhea. I also have a hiatal hernia, and osteopenia (the precursor to osteoporosis). The latter is from too many steroids to try to control my Crohn's. I also have fibro, arthritis, pancreatitis, gastroparesis, and a few others. Did I mention I'm only 28? Lol. Anyway, have you seen a GI for your diarrhea?

Hi Jfer:

You poor dear. You put us all in tears reading about all your health issues.

What I know now about C. Diff. I likely set the stage when I was prescribed Cipro for Travellers diarrhea and another antibiotic for an eye and ear infection later on. Nobody in the medical profession told me to go out and buy a good probiotic when taking these meds or even after taking them. I unknowingly rid of all the bacteria, good and bad. I felt better after each problem and I carried on life thinking I was OK.

I was not OK. I have a whole story about my life on another board so don't want to go on at length. I believe that I could have contracted C. Diff either from a Nursing Home or a Hospital. I used to help out my Husband's Grandmother so much. She didn't speak English very much and gave everybody a hard time with eating. I am sure I washed my hands after leaving. I always wash my hands in washrooms and it is disgusting that some people don't. The second possibility was when I had a D&C in a Hospital. This is hard to believe but I had to have a D&C to remove an IUD that was inside me. A Gynecologist told me 22 years prior when I thought I had it removed, that it was out. It wasn't out. I had problems with lengthy periods and had a D&C to try to find out why. That D&C missed the IUD. How? I was going to have another child. I could not get pregnant. I gave up, went back on the pill and at age 35 had a tubal ligation. I had one ultra sound that did not find the IUD and then finally it was found with a better ultra sound. By that time it was causing me pain. It is possible to get C. Diff when in the Hospital. I read that it is pretty standard now that if you have stomach problems after a hospital stay it is assumed it is C. Diff.

The C. Diff did not get diagnosed by a Gastroenterologist who was trying to find out why I was bloated and getting strange things moving in my stomach. I also had really bad diarrhea bouts. I was lucky I suppose that I would have one bout a day. Some people can have 13 bouts a day. I was able to keep working but had some times where I almost didn't make it to the washroom. I became lactose intolerant. Ended up with Colitis with rectal bleeding. I was fixed up in Endoscopy and given a prescription for Flagyl and again Cipro. These meds were scary. I was afraid to sleep, thought I was going to die. I felt it going through my body. I took it all as prescribed. I got a really bad cold while on it. They can cause Super Infection. C. Diff was not properly explained to me. I only got bits of info from Doctors. It is online where I became more knowledgeable. I began to get nerve problems after. It is possible that one or both of the meds caused nerve damage.

Like all of us, we are stuck with a whole lot of problems.

It is your stomach that needs to recover. Normally, when you have diarrhea, you have to assume that your body needs to rid of something. If you have C. Diff, the diarrhea is ridding of bacteria. It is a good thing, your body is trying to make you better. Imodium is not the best option if something needs to come out of you. I do sympathize though as all you want to do is stop the diarrhea. I once was successful in stopping travelers diarrhea with Brandy but it didn't work the next time. I do wonder too if I might have lived with C. Diff. I read of a baby who had it.

Do wash your hands with soap and water numerous times each day. Bathrooms need to be cleaned well. I never put my hand in a toilet, I always use a brush. If you have an infection you don't want anyone else to catch it. Use gloves. Lysol is a good cleaner. We can't see bacteria so we don't think about it.

I live in Canada and did have some difficulty when I could not go back to work due to my poor health. Yes, deciding if you are disabled is not easy. You need a Lawyer.

My bad hearing is genetic. An MRI of my head could not find a reason for the hearing loss.

Take care and do let us know, good or bad, how you are doing.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Post Edited (Loring) : 9/19/2014 7:23:48 PM (GMT-6)

I wasn't a preemie, but nearly died of pneumonia at about 4 months; the doctor said to my parents that he believes it was a miracle I lived and that all the prayers must have pulled me through. I sometimes wonder if all the shots/antibiotics I received way back then have something to do with my fibro, but just a guess. I AM thankful to be alive, though! :)

I started having chronic diarrhea which seemed to come from nowhere about 3-4 months after my youngest was born, just over 20 years ago. Tests were inconclusive. I was put on Elavil (amitriptyline) which dries out the system--really dries! Took it for years, and even now take it occasionally, as needed.

While it slowed down the diarrhea, my issues still continued somewhat. I developed gastritis in 2011, after taking naproxen after surgery for a ruptured appendix. An upper endoscopy showed the gastritis. My colonoscopy, done the same day, was normal, but the gastro doc said my loose stool issues stem from a motility problem.

A neurologist had told me in 2003 that my reflexes are 'off' and 'too sloppy' and suspects I may have always had a mild form of cerebral palsy. A huge surprise! I suspect most of these issues are related, and the fibro just sort of worked its way into the whole picture. Complicated!

Also, I was told to eat a low-residue diet--plain, soft foods, watch spices, no peelings or anything rough, peanut butter instead of nuts, baked fish, yogurt, cottage cheese, etc.. That also helps with any loose stools. Oh, and as Sherrine said, good ol' bananas and rice.

I also like Cream of Rice or Cream of Wheat cereal or Malt-O-Meal hot cereals. I've tried no wheat diets, but there was no change.

Welcome, and wish you the best!!

Thank you everyone for your caring and informative replies! I do use what I refer to as the 'braty' diet when I have a really bad bout of diahrrea - going up to 25X a day, and going several days in a row. The Gastro said this firms up/bulks up the stool. Bananas rice applesauce toast and yogurt. But when I even drink water during these episodes - it gets my gut active and I'm going more...

I am fortunate I can recognize when my body / gut is 'ill' and I don't take immodium, u r correct! Sometimes the body needs to rid itself of something toxic... And I'm also lucky I can tell C-Diff by it's Oder - like Fritos. I've had a bout that didn't visually appear like classic 'antibiotics killed the good stuff' but the smell made me to to the ER. The dr had it checked and they found c-diff.

Ok - Sherrine is correct and I apologize. This is the fibro site and I will move all further posts regarding this problem there.

I will say my good news is I have a great team of doctors: internist, rheumatologist, endocrinologist (the rheumatologist told me at my 2nd ever appt w/her she ran into my endocrinologist at the hospital and remembered me and that I was also his patient. She said they sat and conferenced about me and my multiple symptoms and talked about treatment planning, tests to do etc. I felt heard and cared about after years of feeling misunderstood and blamed). I have a new Gastro since last year, and a wonderful therapist as well as a compassionate psychiatrist.

Take care everyone,
Jfer