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Fibro/similar illness without pain?

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Fibromyalgia
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Posted 10/18/2012 1:21 AM (GMT 0)
I don't think I have fibromyalgia, but I do think I have something in that ballpark after talking to an internal medicine doctor today.
I came down with a viral/flu-like illness in April that included fever, fatigue, weakness, very sore ribs and back, dizziness, no appetite, and some nausea and vomiting. In the week before it happened I was getting weird spells of feeling dizzy, flushed and a little nauseous. I got a lot of nausea and fatigue in March too. I got better from the "virus" after about 8-10 days, and felt pretty good for two weeks. Then I started getting the dizzy spells again, then I got sick again. It was mostly stomach issues this time, and I was also getting very dizzy and lightheaded. I also had some numbness in the left side of my body. All of these symptoms have come and gone since then. For a while I was waking up and vomiting every single morning, then it became less and less frequent. I've also had lots of gas, sometimes I'll belch until I gag or even vomit, and for the past few days I've gotten excruciating gas pains every evening. I also get a lot of lightheadedness and "brain fog" and sometimes I feel like my vision isn't what it used to be. I have tons of eye floaters, especially when I go outside. The doctor mentioned something about the lymph nodes in my neck feeling "slightly enlarged but still in the normal range."

The reason I'm in the fibromyalgia forum is because my doctor feels like my illness is related to the virus I had in April, which could have been mono (I test positive for the EBV virus and my bilirubin level was a little high in some blood work I had in June, and I think it's gone down since then). He kept mentioning fibromyalgia, chronic fatigue, and chronic lyme disease because I have so many nonspecific symptoms that started after a viral illness. He prescribed the antidepressant amitriptyline which apparently helps some chronic fatigue, fibro, and IBS patients. I guess I'm just posting to see if anyone has a similar experience to this or can give me any advice. I'm trying to learn as much as I can so I can try to help myself get well. Thanks!
Posted 10/18/2012 2:41 AM (GMT 0)
Hi Lindsay,

( My personal experience:) I have been diagnosed with FM and (as of this point in my life) the body aches and pains I've had have been mostly minor, and thankfully I'm not normally in significant pain (muscle wise). However, I do feel very uncomfortable sometimes, due to seasons of trouble sleeping, vertigo-type-issues, exhaustion (and sometimes headaches). And in general diet selection is very problematic and causes 'flares' of my symptoms to appear.

I'm not sure what 'turned on' fibromyalgia for me, but I have an (unconfirmed) suspicion that it was due to illness, specifically a nasty case of food poisoning that left me nauseous and sick for a month. I can't say for sure though, so who knows.

As far as symptoms, I also have dealt with most of what you listed, except in my case, the vomiting stopped not long after a few weeks. The nausea went on though, just not to the point of getting sick to my stomach. I do also have significant eye changes, and floaters and these issues started not long after my other FM issues started. And: fatigue, weakness, very sore ribs and back, dizziness, no appetite.. yes to all of those at some point or another.

I seem to only have the classic fribromyalgia burning aches and pains all over my body when I eat something really bad or take some kind of medicine. I took a cold eeze lozenge a year ago and my body was burning all over after and I had a lot of muscles twitches. It felt like someone poured acid all over my nerves... It really terrified me because I was scared it might be permanent. Luckily it went away after a week or so. And normally I'm not in so that much pain.

It seems that FM is not always the same for each person. Each case is different. Others here may have more useful advice for you. But my only advice (regardless of whether or not you are dealing with FM specifically) is to learn the best ways to care for yourself. Learn what to avoid and really take care of your body and learn to rest. I've had periods of feeling 'normal' in the last year and its mostly because I found good balance, stayed away from flare-triggers, slept as well as possible, ate well, and exercised lightly, (and also pursued my dreams within reason without pushing myself too far or too hard).

The last few months have been hard on me because I've changed my work schedule and also pushed myself too far over the summer. :/ So I've had a resurgence in some of my symptoms.
Posted 10/18/2012 2:52 AM (GMT 0)
Have you had an upper endoscopy done? It sounds somewhat like gastritis. I was diagnosed with it last year, about a month after ruptured appendix surgery. There can be many other causes, too.
Posted 10/18/2012 3:12 AM (GMT 0)
Thanks for the replies!
The reason I don't think it's something like gastritis is because I've had so many symptoms that are not GI-related. Like right now I keep getting spells of feeling faint and short of breath, and I'm having a lot of trouble concentrating.
Posted 10/18/2012 3:48 AM (GMT 0)
Hi Lindsay,

In addition to Fibro I have chronic gastritis and esophagitis. What was odd for me was that I had no symptoms until AFTER my last endoscopy. From day one after the procedure which was now nearly a year ago I have had burning in my stomach and chest pressure where it feels like I have a chihuahua sitting on me (of course my chi's are about 10lbs each). I feel like I have to take a deep breath to get oxygen every few minutes. In the last year I've had a angiogram, x-rays, cat scan with barrium and radioactive dye injected. I went to an ENT about my horse voice and was told by him it was the gastritis too.

I'm on two different meds just for the gastritis and neither seems to work. One thing I've asked the Gastro doc several times with no answer given is , "Why did I have no symptoms BEFORE the endoscopy?" I've seen photos of my stomach and esophagus. They're red and irritated. A biopsy was done, etc.. At this point I guess I'm left with that fact that I'm just more sensitive to this condition because of the FM.

Now, if you haven't been to get an endoscopy you should. Throwing up that much is also going to play havoc on you teeth enamel and drain your body of electrolytes. So take care of yourself. I hope you can find an easily curable cause. If you do end up with FM just know it's not a death sentence. It's listening to your body and getting a good support group around you. Getting a doctor who will work with you to make you comfortable and never giving up.

Big smiles,
Connie
Posted 10/18/2012 4:35 AM (GMT 0)
Thanks. I haven't gotten an endoscopy but I'll be seeing a gastro soon and I'm sure they'll probably want to do one.
Posted 10/18/2012 10:31 AM (GMT 0)
Before my FM DX in March I had several episodes of dizzy which made me sick to my stomachs. I had a Dr give me predisone saying it was an inner ear issue, after the predisone I had horrible pain and fatigue, I was told it was a bad W/D from the 5 days of the 20 mg of predisone. But it never left lol, from Dec to March it was horrible! Then new Dr DX me with FM, and I looked it up and the symptoms were truly "the story of my life" and had been for several months, not to mention some of it like severe menstrual cycles I could trace back to teen yrs.

The brain fog when it came to academics (especially math) etc. I had my hubby to be read the info on FM and he goes, "OMG that's you"! Which was my reaction too.

I still have the dizzy occasionally and found out it was never my inner ear
Posted 10/18/2012 5:39 PM (GMT 0)
Hm, I don't get dizzy spells as much anymore but I get lightheaded and short of breath sometimes and just feel "off." I'm just getting so frustrated... I was feeling so much better for a while and now I feel awful.
Posted 10/18/2012 9:20 PM (GMT 0)
Sound like your doc is on the right track. I have some of these symptoms and I have CFS with the Fibro. Sounds a lot like CFS to me.

Since quite a few people have been misdiagnosed with Fibro/CFS and have really had Lyme or the Lyme actually caused the other issues, it may be good to get tested for Lyme as well.
Posted 10/18/2012 9:50 PM (GMT 0)
Yeah, I can't believe no other doctor mentioned illnesses like that! I guess the other doctors I've seen probably don't even think they exist, since he said many doctors are like that.
It's so hard to try to compare my symptoms to something because they're just so odd and hard to explain. Even the nausea doesn't feel like normal nausea. The lightheadedness doesn't feel like normal lightheadedness. But that's still the best way I can describe it.
I've had a lyme test but I've heard they're not always accurate. Plus he said it's pretty rare where I live. But he did keep mentioning chronic lyme, I think because it's another condition that's debated but my symptoms fit into.
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