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Can FMS be this all-encompassing?

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Posted 2/13/2017 5:58 PM (GMT 0)
I absolutely dread it when I get a new symptom. I haven't had the greatest luck with docs, and I have to be careful when I go, that they don't send me off on a wild goose chase, because they are too focused on their own specialty.

I have FMS, IBS, and osteoarthritis. I abused my GI tract over the holidays and ended up like I always do when I eat too much.......which is feeling like I have gastroparesis. This has happened multiple times over the past 25 years......but I always know what to do, and it subsides in a week or 2. This time it didn't go away. I had intense burping and bloating. Then I started thinking my diverticulitis was back....but my pains were in my left breast area, going back into my left scapula. Then it went across the entire back.
I couldn't get into my GI doc for a month, but could get in immediately with his physician's assistant......who seemed very competent. Anyhow.......he thought it was mostly upper GI, so I had an upper endoscopy, which was good, except for a small red area in my lower stomach, which he biopsied. Those results haven't come back yet, so I don't want to start seeing other docs yet. But now I'm wondering about gall bladder.......but they will say "No, you shouldn't have pain in your left chest and back with gallbladder".......but I know you can.

But.......now my pain is still in those same places, but also in various other areas of my colon, my legs, my arms, my jaw. Maybe I never had FMS very bad, and now I do. But do your pains move all over your body.......constantly making you think yet another problem has arisen over and over throughout the day?
My GI tract is still in an uproar. Does FMS cause that, or does an uproar in your GI tract cause an FMS flare?

I go crazy trying to figure this out. I know some of you have complete faith in your docs, but I don't. I'm a retired R.N. and feel like I have a good sense when the doc doesn't know what he's talking about. And it seems like specialists don't have a clue about any other part of the body, which is very unfortunate and can lead to lots of wasted time, money, pain.

While I'm waiting for that biopsy report to come back, I'm trying not to make any other doc appointments. I just don't want to confuse the issues until I have the facts.

Do any of the rest of you go crazy, trying to understand what's going on, so that you know which doctor to go see........but you know he/she can't see beyond their own specialty?

Sorry for the long vent.
Thanks.
Posted 2/13/2017 7:52 PM (GMT 0)
Your symptoms could be caused by two completely different things. I've had both things happen. The breast/shoulder pain happened a little over a month ago. Every time I walked my dog, I would get about eight houses away and the pain would start. Of course the first thing you think of is a heart attack but it was more around the breast and shoulder so that tried not to worry. Naturally I would get short of breath (because anxiety was trying to kick in) but I kept walking and focusing on all the beauty from neighbors' landscaping and by the time I got home I wasn't being bothered.

This actually happened several times so, when I had my January massage appointment I mentioned this and she said it was originating in Trigger points in the back of my shoulder. She massaged the daylights out of that area and it was uncomfortable, too, but I have not had that breast/shoulder pain since...and I walk my dog daily!

Have you ever been diagnosed with gastroparesis? You generally are extremely nauseous and throw up you have pain and you lose weight It's really pretty bad you have no appetite.

I have had many of the same symptoms that you have described when I have had ulcers. I have developed bleeding ulcers twice and had to stop taking ibuprofen. I still take it now but I take another medication called the misoprostol that helps protect my stomach from ulcers caused by NSAIDs. The little red spot that they biopsied perhaps could be an ulcer. I'm just guessing here Cathy. You know I'm not a doctor. But it kind of makes sense to me. You will be getting the biopsy soon and you will know a lot more then. Some medications can cause ulcers...if that is what your problem is. If your digestive system is in an uproar, you might need to try being gluten free. This has helped people with IBS.

Look up gastroparesis and also ulcers at the Mayo Clinic site. You will see the differences.

With fibro you have pain in all four quadrants of the body so getting pain in your arms and legs that moves around is not unusual with fibro. People with fibro can have IBS. Fibro doesn't cause IBS I believe but it seems to go hand in hand with fibro many times. Doctors look at the various symptoms we have and, after ruling out other illnesses like Lyme disease and lupus, Fibromyalgia is diagnosed. I think that when you have these digestive problems, you start worrying big time and THAT will cause a flare. My flares come mainly from overdoing things or barometric changes.

Remember, not everything is caused by fibro. Back pain is something many of us have. I dealt with that for years but, it started getting worse and worse...really bad pain...and I know fibro isn't a progressive illness. Under those circumstances I do head to a doctor. I did and found out the extreme back pain was caused by another illness called ankylosing spondylitis. I'm now taking medication that works together to calm the pain down.

I know I will not be pain-free and I don't make the effort to try. That just causes frustration and worry which affects fibro pain. I am in control of my pain and can live a good life in spite of this illness. I do see my Internist 3-4 times a year, he runs a lot of blood work to make sure I'm as healthy as I can be, and I personally try to do the right things for my body. This is a good combination for me.

Sherrine
Posted 2/15/2017 2:03 AM (GMT 0)
Thanks Sherrine and Rockon. It just gets so darned overwhelming at times. And I no longer can tell when something is really bad or not and if it needs a doc visit.
Sherrine, you're right that it could be several things going on at once. I'll know better how to approach it once my stomach biopsy comes back. If it's normal, I'll move on to the OB/GYN, since I've been suspecting for awhile that I have funky female hormones that might be out of whack too.

Rockon....Yes, the mast cell problem definitely sounds like me, but I guess it would be extremely rare to have.
The biopsy should include anything that is unusual, like too many mast cells.

Strange, your response to THC. Many years ago, when I was a hippie....I tried marijuana, but it made me really sick.....and I had a psychological reaction to it too. Curious. I always thought that was a strange reaction when everyone else was really liking it. Even back then I figured out that my system was unusual and different from a lot of others. Thanks for that mast cell link, and I'll definitely talk to the doc about it. Just to close on a humorous note...........When my son was in grade school and in Little League, his team's sponsor was Thorntown Heating and Cooling. So all the kids wore caps that had "THC" on them. hahaha We're not sure anyone else noticed that.......
Posted 2/15/2017 3:20 AM (GMT 0)
Yes, just fibro can be overwhelming by itself..

And so many of us have other issues especially as we get older..

I had it as a child and when i got older when my hormones got off, i would go into a flare.

At one practice we went to, an RN was our favorite person on staff to see. She was so compassionate and thorough. So it could be the same with the PA?

My mother was hospitalized once with that pain across her back, they were thinking it could be her heart because of previous history..so after every heart test..he was releasing her and we asked him if it could be gallstones..so he referred her to a specialist for that.bingo , we diagnosed her after all their tests..

I always remind myself that they are "practicing" , just a joke, i am sure you know..

Sometimes we have to rely on our own instincts, as to , no this feels like something else , better get it checked.

Hope you feel better soon,

Lj
Posted 2/15/2017 12:45 PM (GMT 0)
Thanks Lj..........I was thinking about that with your RN and my PA. Seems like they are the compassion part and the doctor is the "science" part. I don't mean to say that they're not really smart.....but do seem to have more of the compassion part. Maybe the docs are just too stressed. I don't know. But I've seen lots of docs and hardly any of them seem to have much compassion.

And what you said about hormones goes for me too. They've always seemed to be the root of my feeling bad.......whether it was them starting up before I was 10 all the way through menopause and to now, their fluctuations seem to be never-ending and always leading the craziness.
Thanks for your reply Lj!
Posted 2/15/2017 2:56 PM (GMT 0)
Thanks Rockon. To my many other problems, I have to add what I think is a learning disability. I have soooo much trouble with reading and comprehension, so I may have not read all of the stuff you posted. I'll have DH read it and explain it to me. Through life, because of this, I almost feel like a blind person must feel.......I have figured out how to know things/sense things, that haven't come from reading. Sure wish I could read, though. I'd be so much smarter!

It sounds very interesting! I just know that life for me (I'm 67 now) has been a major challenge. Yes, I've had many good times, but there's always some battle to fight with this body (and mind). I feel many times like an alien. My physical responses to things seem to be the opposite of how most people respond.
Anyhow........I'll have hubby help me through the info you've posted. And I do really appreciate it!
Posted 2/23/2017 1:32 PM (GMT 0)
I was reading OP from CathyA and i am very much agree on what she said about bad exp with doctors! And Rockon seams to have the same opinion lol. But i am not going to get into that subject.
My stomach pains are different but i had 4 courses of a treatment with antibiotics until my H.Pylori was finally killed but guess what? I still have my stomach pains almost every day!! Blood tests are more-less normal, upper endoscopy 2 years ago showed mild irritation of the inner stomach lining and "officially" i have gastritis, GERD and IBS. Will see what DX Cathy will get. i just want to say in my case it's a stress-related gastritis (IMO). I get pain every time i get nervous (which is almost every day).
In "our" case meaning all of us with Fibro - unfortunately every kind of pain we have is multiplied by FMS... Sad...
Could not miss a convo about pot lol. Funny situation but my son keep pushing it on me, i refuse it because it makes me feel so stupid!!! And no help with my pains. All fun and giggles i had with grass are all in my young years. hehe
Posted 2/23/2017 1:56 PM (GMT 0)
Had to go read about MCAS (thank you, Rockon)! Ohh... one more overlapping condition... It becomes more and more difficult to learn something new - ty brain fog! lol
Honestly i am not even sure my GP would even know anything about it. I did not go to any new rheumatologists in Los Angeles where i live for about 5-6 years ( pure disappointment).
If any members here will suggest me a good specialist in LA i will be grateful
Posted 2/23/2017 9:14 PM (GMT 0)
Natik/LA: I developed gastritis after taking Naproxen after I had surgery for a ruptured appendix. There is an online forum for gastritis at Daily Strength, I believe (haven't been there in a long time).

Aloe vera gel (not much; can cause loose stools; just a little in a glass of water), lots of water, a very plain, non-irritating diet (lots of soft, cooked veggies and boiled chicken were staples for me), and time passing have made things much better. It was surely hard for me to not eat any spices for a long while! Maybe a doctor or dietician also has suggestions.

Hope things are better in general for you soon.

ETA: Do check with your doctor before taking the aloe vera gel. Some people don't tolerate it well at all. I also took slippery elm and DGL licorice (chewable, from Puritan's Pride). Some things can interact in a negative way with meds, so be sure to check anything out with your doctor before taking it. yeah
Posted 2/24/2017 4:40 AM (GMT 0)
Hi Luvz and thanks for your opinion. I have been on a diet for over 2 years, never take any NSAIDs meds like Naproxen, Alive, etc. If i take aspirin (even the smallest dose) it will start bad stomach pain right away and the same goes for ANY acidic food/drink.. That's why i am afraid to drink Aloe vera gel or juice. Good idea about slippery elm, maybe licorice too. All supplements, vitamins, minerals i also buy from Puritan's Pride! It's my favorite catalog and their sales are hard to beat, will recommend it to anyone. As for "check with your doctor".... well... I never met MD who will discuss supplements with me, it is always prescription meds.. In USA it seems to be their practice, in Europe and of course in Asia it's different, i personally think the combination of traditional and nontraditional approach would work much better
Posted 2/24/2017 7:21 PM (GMT 0)
Hey Rockon! Yes i am and i think i am the only one Natik on FB. I posted my FB URL on my profile. Feel free to send me a friend request!
Posted 2/24/2017 7:42 PM (GMT 0)
Well, my upper endoscopy showed just a small area of gastritis. He gave me an Rx for Zantac, but H2 blockers have never helped with my symptoms.
The biopsy was negative for H. pylori and anything else.
I continued to have a lot of pain in my chest and back and down my left side abdomen, so I saw the PA again. We decided the next thing to do ct scan to rule out lots of possibilities. Well, it was all normal! Yes, I'm glad I don't have a big honkin' tumor, etc., but I still have all this pain in my back and my GI tract is still going crazy. I think I said I've also had labs, chest xray and diagnostic mammogram.......all normal. The PA wants me on Elavil. I told the tech who called that I've tried that at a low dose and could hardly see straight for several days.
So I have another appointment with the PA.

DH thinks it's my spine, but I really don't think so. I think my IBS is flaring and all that gas is causing the back pain.
I'm so tired of trying to figure out what the heck's wrong. And I hate it when a doc quickly resorts to a brain drug, instead of doing any critical thinking.

And again........I've gone to the gastro PA twice, had the upper endoscopy, and nobody has actually asked what I eat. No one ever thinks past their specialty or outside the box. It's so very frustrating. But isn't asking a gastro patient what they routinely eat sort of important in GI medicine?

And I still need to check out your mast cell thing, Rockon. But I doubt any doc would even know what I was talking about if I brought it up.

I did decide to back off my sertraline. I'm on a very low dose for depression, and when I started it, it helped my IBS-D. But I couldn't go any higher on it without massive diarrhea. So now I'm wondering if I stopped it, maybe my GI tract would calm down? Maybe the low dose is still too much for me, and it's causing problems.

Anyhow......thanks for listening to my whine.
Posted 2/24/2017 8:36 PM (GMT 0)
Hi CathyA! Did you read my post above? Could it be also related to stress?. After all "nervous stomach" is an official medical term/DX. I did not see if they ruled out gallbladder stones as the pain they can produce might irradiate almost to any area around mid-section of your body.
At least you do know that you have a small part of your stomach affected by gastritis. You better go on a diet... I researched a lot about that and if you need any help don't hesitate to ask me. I was surprised that any tomato products and even raw tomatoes can aggravate gastritis (it's just an example). You are a smart lady and will read all about it, i am sure. Good luck!
Posted 2/24/2017 8:45 PM (GMT 0)
Hi again, Rockon. I had some privacy concern about having my Facebook URL in my profile. Well... You are here on a forum since 2013 and you know better. So i will listen to your advice and will go put down my URL! And i will look for your message you left me. Thanks
Posted 2/24/2017 9:01 PM (GMT 0)
I responded to your message, Rockon! You are FUN! Feel better soon (if you can)
Posted 2/27/2017 5:23 PM (GMT 0)
Well, the plot thickens. My GI tract has finally calmed down, and the pain has settled across my back, with intermittent short-lasting pains in LRQ, LLQ and ULQ. But this morning I woke up with intense neck stiffness down through my left shoulder and mid upper back. Too bad I can only take tylenol. I use a heating pad a lot, but dang.....the joints in my hands are acting up too. I haven't even been working hard. Just seems like it has to be something systemic. I made an appointment with an OB/GYN this morning to rule out anything funky there (my last one of many years quit).....and the first opening was August 1! I'll go to my Internist sometime in the near future, but without any testing, he'll want me, once again, to go on Cymbalta. Doesn't anyone do much troubleshooting anymore without automatically defaulting to brain drugs?
Maybe I've only had "mild" FMS for the past 30 years, and this is the real thing now. Is that possible??
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