Wondering if this could be fibro...

[SarahBear]

Hi, everyone.

My name is Sarah and I'm twenty-one. I have Crohn's disease (been diagnosed for four and a half years, but showing symptoms for a total of thirteen years), IBS, and possibly endometriosis. Last year, I started having a lot of new symptoms that would be unlikely to be a result of any of those conditions, especially since my Crohn's (the most likely culprit) was and still is in remission.

My doctors seemed content to blame it on Crohn's or endo (whichever would mean it was out of their hands) even though that made no sense. Before I could convince anyone to do further testing or anything of that nature, the symptoms gradually decreased and went away.

About two weeks ago, the symptoms started slowing coming back.

The symptoms are:

• Extreme tenderness / pain / sensitivity throughout my torso. It's centered in my stomach, but spreads to my back and breasts.
• Fatigue. I've started sleeping more than normal, and getting tired much, much more easily. Most of my fatigue is physical exhaustion rather than a need for sleep, but both do occur in excess. The physical exhaustion is fairly intense - thirty seconds of walking and I'm out of breath. The last time these symptoms were occurring, I gave up blow-drying my hair because I just couldn't hold the hair dryer up for more than a minute.
• Joint, muscle, and surface pain throughout my entire body. Again, it's mostly centered in my stomach but it does occur everywhere. This pain in my stomach is different from IBS-like pain. It's not intestinal - it doesn't feel as if it's that deep. It's also fairly intense around my bottom ribs.
• Difficulty remembering / focusing. This could certainly be a result of dealing with the other symptoms, though.
• Abdominal pain, nausea, and other IBS-like symptoms. I do have these symptoms normally, but they intensify.
• Morning stiffness and pain. My lower back and sometimes stomach are very tender and painful when I wake up. This only recedes after I've been up and about for a little while.
• Dry eyes and skin. My eyes get very sore throughout the day, and more so at night.
• Chest pain and tightness.
• Rapid and fluttering heartbeat. This usually just occurs when I've pushed myself too far physically, but it does come out of nowhere sometimes.
• Small unexplained bruises on my thighs. These do occur regularly, but they get worse when I feel worse.
• Sore throat and tightness.
• Dizziness / loss of vision upon standing up. It's sort of like I'm about to pass out but it doesn't go that far. I sometimes get dizzy at other times as well, but the loss of vision is only when standing. The further I have to go up, the worse it is - if I were sitting on the floor, I sometimes literally have to stop and hold onto something for fear of passing out or falling. If I were sitting in a chair, it's less intense.

I also developed a couple mouth ulcers just before and as these symptoms were starting this time. I don't know if those were caused by anything or not. I did see a dentist and was told not to worry unless they didn't clear up within ten days, but they did, so they may have been unrelated.

My mother has been diagnosed with fibromyalgia, which is what originally got me thinking along these lines. I have an appointment with my gastroenterologist on the ninth and plan to mention all of this to him, but I doubt he'll do anything - it's not really in his realm of expertise anyway. I'm also going to call my GP on Monday and see when I can get in with him, as that's probably where I need to start.

So, does this sound to you all like it could be fibro?

Thanks in advance.

 

[1sweed]

SarahBear,
First off welcome to the forum. Sorry I missed your post before, but I am catching up now. I of course can not say for sure if you might have fibro, but a lot of your symptoms do match symptoms I have had. You should see a Rheumatologist. This is the only type of doctor that can diagnosis fibro. Since you have other problems, like the doctors say things can blend over and create similar types of symptoms. The rheumatologist will test your blood for other conditions like Lupus and Lyme, and RA. If all tests come back normal then he would test for for fibro by poking your muscles in 18 different areas to see how you react. He will ask about your sleep and your mental state, along with other questions.

I found it interesting that you mentioned the bruises on your legs. There is a blood disorder that can cause this, but if all tests are normal then I will say that I have had times when small blood vessels would break in my legs and cause pain and big bruises, for no reason at all. I have told doctors and showed them in person & with pictures, but they had no interest in giving me a straight answer. Maybe someone else will have that answer for both of us.

I would say to that remember each doctor you see treats only a certain area of your body. It is like asking a plumber about brain surgery. If you have a problem it is important to match the symptom with the type of doctor that has knowledge of it, otherwise your wasting time and money talking to doctors who can't or won't help you.

 

[cherryjelly]

I had bruises on my legs when I came down with Lyme. You could be dealing with a chronic Lyme case, as your other symptoms are suspicious as well.

 

[GemmaRowlands]

Hi Sarah. I think that the most important thing to do is to make sure that you get some medical advice as soon as you possibly can. I say as soon as possible because these things can take a while to get through the system from your doctor to the specialist and then through to any other possible treatments that you may have to go through. Obviously the people on here can give you advice based on what they've been through with their own journey, but the best thing to do is still to get as much help from your doctor as possible.

 

[Lauri81]

I agree with cherryjelly, this definitely sounds like Lyme. In fact, all cases exposed in the forum sound like Lyme! What are you guys thinking of? (the same conversations are repeated in cfs forums, ms forums, parkinson forums, etc... Lyme is everywhere! (and if not Lyme possibly mycoplasma, but not many other possibilities).