Status
Not open for further replies.

Bee1003

New member
Joined
Aug 28, 2015
Messages
1
Reason
Diagnosis
00/0000
Country
US
State
Pa
Hi everyone. I haven't been diagnosed yet but my rheumatologist has mentioned fibromyalgia. He first wants to do a few more tests before we go there he said. So I wanted to share my symptoms and what has been going on for years and would really appreciate some opinions/feedback on whether you had similar symptoms before diagnosed and whether you believe I could actually have fibromyalgia.
First, I have been to almost every specialist imaginable and have had a ton of blood tests, x-Rays, CT scans and MRIs done. I even had to have a bone marrow biopsy recently that came back negative for leukemia/lymphoma. We are at the point now where the doctor is looking into autoimmune diseases but so far doesn't think I have anything there. All lab work comes back pretty normal for most part.
Symptoms- achiness throughout my body but especially legs, back, neck. Frequent headaches and a few migraines. Dizziness/blurred vision occasionally. Extreme fatigue. Stomach sensitivity to some foods. Mouth sores off and on. Sore throat off and on. My sleep isn't perfect but I wouldn't say I don't sleep "well". I seem to get these flare ups where I get fevers and it makes the aches/pains worse. The fever is what had doctors thinking the worst and doing a ton of tests. Some doctors also said that fibromyalgia wouldn't cause fevers?
Like I said, everything seems to be normal as far as tests and the doctors really don't know now. So I'm curious if anyone has had similar symptoms before they were diagnosed or ever with fibromyalgia? I'm just so sick of feeling so bad all the time and want some relief. I have days that are so bad sometimes from the aches and fatigue that I can barely do anything.
Any help and advice would be greatly appreciated! Thanks! :)
 

tracielee

New member
Joined
Aug 29, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
Missouri
All of your symptoms seem to fit except the fevers. I've never heard of anyone having fevers with fibro, but you never know.
 

JamesB

New member
Joined
Aug 3, 2015
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CA
State
Ontario
Hi there.

First off I am ridiculously new here myself, aaand not exactly in the best position to be counseling. But I can say you have absolutely come to the right place for help.

I'm no Doctor but I have seen many. Many of the same 'super-specialists' top of their field. I totally get the fear of 'what is it' especially when you have quirks(fevers for you cold intolerance for me) that no one else seems to have. What its like having people insist that you can't have one thing or the other because of an auto-immune-LIKE-anomaly. Simply put it scares the crap out of you and only makes your symptoms worse. It can cut you off from engaging very necessary positive cognitive exercises for a whole lot of reasons.

I am curious about your flu symptoms. I have pressure/temperature/humidity sensitivities that give a very flu-like response when certain weather systems drops in suddenly. It used to just be pressure headaches with mild nausea. Now when I wake up at 4:00 in the morning with a headache I get up go out on my balcony and check the air. Which usually confirms it. I then go about treating it like a flu level illness but doing what works best for what's actually bothering me. Other than that make peace with it and wait for the weather to pass or ease up. It always does. On that note hold on to the fact that there will be bad and it will always suck. Bad sucks, if it didn't you wouldn't call it bad. But funny thing, when you're dealing with a whole lot of bad, the littlest things can be most awesome in a way you would never think.

Don't stop doing things that you know helps you cope with a particular problem out of fear that your solution can cause another problem to flare up. Test yourself before a physical activity and be careful of how you push, sometimes that means not pushing at all and moving really really slow. Allow yourself that, be prepared for the possibility something might over-tax you at any given time or a flare up could come out of nowhere. Just be conscious of your environment. The one great thing about Western Culture for folks like us, is our obsession of putting places to sit everywhere, like in the middle of nowhere everywhere.

Just because you're not diagnosed, doesn't mean you can't feel comfortable asking for accommodation, when most of the time
all you really want is a moment to sit close your eyes for a spell and rest. Yeah sometimes that can be like 20 mins half way through a trip to the Bank but really its ONLY 20 minutes. Small interventions that can save you from an aggravation spiking into a flare up that lasts for hours then leaves you uselessly exhausted for the rest of the day. No will stop you from sitting anywhere at anytime when you are in pain. Take advantage of that. Anyone in your situation would want the same.

If someone wants an explanation keep it simple: you have a pain thing, you're seeing specialists no one gets it, you just need a moment to rest. Reasonable people will not ask you to explain what you just said you dont understand, by telling them you are seeing experts and they're confused tells them how serious it is without getting into it. Most importantly asking for a moment to rest is not asking for anything, no one really gives you anything, does anything for you, you don't use up anything, and when you leave you aren't taking anything with you. It's can be a great guilt free gift. Ask for it, you usually know the way they'll answer before asking, but it still feels good hearing someone say 'of course'. You need all the positive experiences you can get.


You know what you are feeling. You know how it feels. At this point it sounds like, while things are worsening and random, they are also persistent. You also describe them in a way that says they have a distinction from one another even if sometimes it's like they're all hitting you at once

Hyper Sensitivity and pain confusion will overload your sensory system but it affects everyone a little differently. Not to mention the fact that you are experiencing sensations that you are not trained to understand. Most people never experience anything like it, so you end up lost trying to describe it with an audience that is more lost than you. Try not to stress over things beyond your control, it's like screaming at the sun for being to bright. Don't yell at it, get to know it, then you can find some shade. And then you might find that unbearable fireball of pain and blindness is actually a warm glowing ball of comfort and light. You just need a little less time directly exposed.

I'll leave you with that for now. otherwise I'll end up with a neverending story, but one without any magic or luck dragons. You need magic and luck dragons right now. Figure out what that means for you and use it to make things better. You can't always fix things. You can always make them better.

Be less afraid you are not alone, you can get help here from others that are going through the same pains, you just haven't met them yet.


Hi I'm James.


P.S.
Sorry I'm first to respond, this is a new thing for me and I gots wicked social anxiety that makes me manic when I try to write anything personal for an audience especially if I'm trying to be honest about something emotional.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
USA
State
Texas
bee, welcome.

have the doctors checked for a fungus?

the fevers are not normal with fibro like they said.

your body gives you a fever for a reason.

allergic reactions can also cause fevers too.

start documenting what you are eating and drinking.
look for black mold in your home too.

find your triggers to the pain and avoid them.


James,

well done!
 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,377
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Welcome ,Now when u say fever do u mean bad burning up or u feel like u have a fever . I ask because when I'm in a flare I feel like I have the flu. But I don't. And I do believe u can have a mild fever with Fibro,
If all your test come back clear then Fibro isn't a big leap of faith to come to. Keep us posted to anymore tests u have.

James welcome now manic lol I no that I have bi polar.i lived is Canada for a few years I was in Quebec . Used to go to Ontario to the casino.
Those were the days lol.
No I didn't spend lots but was fun .for a first post I'm impressed.
 
Status
Not open for further replies.
Top