Help bad flare or what is going on?

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Keepsmile512
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/24/2015 2:19 PM (GMT -7)   
My dr has said for years that I have some sort of mayo facial pain. One dr did diagnose as FM. That was 3 years ago. But in May of last year I began a series of nightmarish flares. Severe pain everywhere . Like deep down. Not so much when I move about but when I push on my body. Sore neck glands. Mucous membranes very tender including in the private areas. Dry mouth. If I accidentally bite my lip, the pain is excruciating! I've had 4 separate types of these flares. The first one in May came right after I started a medrol dose pak of corticosteroid treatment for back pain(sciatica pain, loose a lot of sleep) causes these symptoms to appear. It's always been the same pattern. Except only in May and now it came after starting the steroid treatment. This time I also have developed a very bad boil (I hope that is all it is) under my breast. I'm thinking from the low immune due to steroids. Does this sound like FMS OR WHAT? Back in May and then July after second flare I had a lot of blood work. Everything was negative . Epstein barr negative.im sure I was tested for Lyme . One other strange symptom is my one ear gets very hot and red. Right now it is very hot all the way inside my ear canal. I'm so discouraged. I know I need another Dr besides just my internist.but who? Where? Any ideas on what I might be dealing with? I'm so tired and sore it's very hard to be on my ipad researching all the time. Thanks

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17556
   Posted 1/24/2015 3:36 PM (GMT -7)   
Hi, Keepsmile, and welcome! I can't tell you of you have fibro because there are other illnesses that have many of the same symptoms. It would be good to see a board certified rheumatologist. They should run you through a myriad of tests to rule out other illnesses that have many of the same symptoms...things like Lyme disease and lupus. There is no good test for fibro so this has to be done before a diagnosis is given.

But I will say you could very well have fibro. Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. All of Fibro 101 is good so do read it if you think this is what is going on with you.

If you do have fibro, you can have a full and enjoyable life in spite of this illness once you find what helps you get in control of your pain. It's a trial and error process but you will get lots of ideas on this forum...not to mention support. We do really care about each other here.

Let us know what you find out because we do care. 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

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Keepsmile512
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/24/2015 3:57 PM (GMT -7)   
Yes I've been diagnosed with fibromyalgia. But there's these new symptoms that keep happening the first one was back in May. My question is are these related to fibro or is this something else ? I had all the rheumatology testing done and nothing else is showing up. As well as Lyme, Epstein Barr.

AngelLisa
Forum Moderator


Date Joined Nov 2014
Total Posts : 2490
   Posted 1/24/2015 4:02 PM (GMT -7)   
They can be related to fibro, if you've been thoroughly checked out and have received a dx'd of fibro, then your symptoms are probably fibro related. You said on the CFS forums and about not knowing flu like symptoms are apart of fibro, but they are. Alot of people that are in the mist of a flare say they have flu type symptoms.

Read the resources, the one about symptoms and you'll see alot of what your saying is listed there. Welcome to the fibro board!!!
*******************************************************
Fibromyalgia, COPD, Bipolar II, GAD, sleep apnea, arthralgia, insomnia, paresthesia-bilateral feet, degenerative disc disease, diastolic dysfunction, GERD, Hypertension, lumbar disc disease, urinary incontinence, Peripheral neuropathy, Bells Palsy

Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2086
   Posted 1/24/2015 5:00 PM (GMT -7)   
You should get the "maybe boil" checked out..by someone..that would need care to not become infected..

Fibro can have so many symptoms, sounds like they have checked you out pretty well. Also, what helps one pf us does not nescessarily help all of us..

If you have symptoms that you feel are not fibro, it would be good to get things checked..if it is part of fibro , you will have more peace of mind knowing its been checked..

I have heard others mention the burning ear thing, but that is not a symptom i am familiar with..my ears itch instead..

Anyway, welcome, its a great forum..so many nice folks here..

Lj

Cimorene
Regular Member


Date Joined Dec 2014
Total Posts : 56
   Posted 1/24/2015 5:50 PM (GMT -7)   
I think we need to be really careful not to diagnose each other here, but I can certainly agree with all that's been said above: it DOES sounds pretty typical of fibromyalgia. I think what you're going through, though, is that we all go through when it hits:

--WHAT ON EARTH IS GOING ON HERE???
--HOW CAN THIS BE SO PAINFUL???
--SURELY THIS ISN'T GOING TO BE WHAT MY LIFE IS LIKE FROM NOW ON???

And on and on.... I is devastating, and it makes us angry and we don't want to accept it, and life isn't fair, and etc. . . . We've all been where you are now, snd I recently had my worst flare yet, and I felt pretty much the way you say you feel. It isn't fair, is it? And it is what it is.

I would certainly get that boil checked out, and as for the rest of your symptoms, you'll gradually get them figured out as well as you can and decide what to do about them. We have this disease that isn't understood by medical science, and it's just a royal pain....and life goes on.

So sorry....and, well, welcome to the club.
Cimorene

Loring
Regular Member


Date Joined Jul 2014
Total Posts : 473
   Posted 1/24/2015 8:07 PM (GMT -7)   
Hi Keepsmile:

I make a list of stuff that happens to take to my Doctors. Sometimes I forget so I have to write them down. You just have to keep telling your Doctors your symptoms and let them decide what needs to be tested. I think the U.S. Health care system is different than in Canada. We cannot tell our Doctors what we want done, they tell us what needs to be done. We have so many things going on so we never know if something is being missed.

Yes, do medically check out the boil. You get boils when you are quite debilitated. Don't try to squeeze it.

Hope you get some helpful answers from your Doctors.

Loring

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

Michael1968
Forum Moderator


Date Joined Jun 2013
Total Posts : 377
   Posted 1/25/2015 12:08 PM (GMT -7)   
Hello and welcome
Yes these new symptoms can be fibro. I have the red hot ear thing as well, only both ears. They will randomly get hot or just one or both. It varies. They also do this if I touch them. Happens various times on a daily basis. Very frustrating and annoying. Drs. See them do it and look at me with that deer in the headlights look. I've had fibro for 15 yrs now and 2 yrs ago the ears jumped on board With bright red hottness.

I can definitely relate to what you're going through. Try not to worry a lot about it. Anxiety only makes things worse.

Keep posting and let us know how you're doing.
Michael
Take Charge and take care,
Michael1968/ Moderator/ Fibromyalgia

Diagnosed with and survivor of Fibromyalgia since 2001

Michael1968
Forum Moderator


Date Joined Jun 2013
Total Posts : 377
   Posted 1/25/2015 12:08 PM (GMT -7)   
Hello and welcome
Yes these new symptoms can be fibro. I have the red hot ear thing as well, only both ears. They will randomly get hot or just one or both. It varies. They also do this if I touch them. Happens various times on a daily basis. Very frustrating and annoying. Drs. See them do it and look at me with that deer in the headlights look. I've had fibro for 15 yrs now and 2 yrs ago the ears jumped on board With bright red hottness.

I can definitely relate to what you're going through. Try not to worry a lot about it. Anxiety only makes things worse.

Keep posting and let us know how you're doing.
Michael
Take Charge and take care,
Michael1968/ Moderator/ Fibromyalgia

Diagnosed with and survivor of Fibromyalgia since 2001

Keepsmile512
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/25/2015 3:16 PM (GMT -7)   
Thanks so much for the help!!! It's comforting to know I'm not crazy. This hot ear thing is crazy!! So I went to the ER last night to have the boil looked at because a nurse friend of mine who is a infectious disease specialist thinks it might be MRSA and that I might even be colonized with it. So the DR took a needle drawn culture and said he was almost positive it is MRSA. Which is a type of staph infection. In fact he said that most times people have these types of things they are MRSA. I told him I wanted the nares culture to see if I had it colonized (I am at a nursing home quite regularly)
He didn't want to do it at first but then he did. I didn't want to start on anabiotic's and have to wait two weeks after they're done to have the nares culture done. Plus I'm going to my regular doctor on Tuesday so I wanted to make sure that we have the results. I was telling him I felt like my neck had swollen glands and when he was examining me he did say one Side was slightly enlarged. When he then was examining the lymph nodes in my groin area --which were not enlarged --I could barely stand the excruciating pain from him pushing on them. He acted like it was the most normal thing in the world! But hello??? Is that okay? I mean I did tell him I had fibro, but most ER Drs are not that familiar with it and he was not at all alarmed that I was jumping off the table in pain as he was feeling my lymph nodes!! Fibro again? And I have just never experienced that bad of a flare? All regular blood labs came back ok. So now I have this super bug antibiotic which will probably throw off my syste m in another horrible way. He did rx probiotics too so hopefully that will help somewhat.
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