Please help. Very sore neck glands , mucous membranes and pain all over

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Keepsmile512
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/23/2015 10:47 PM (GMT -7)   
Hello
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 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 CFS? 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

Post Edited (Keepsmile512) : 1/24/2015 2:16:13 PM (GMT-7)


jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 1/24/2015 8:30 AM (GMT -7)   
I have fibro and I am pretty sure CFS too. Your symptoms sound like fibro. to me. You can go over to the fibro forum, it has a lot more activity there and you might get more inmput.

Every since I have had fibro, my body is a lot more sensitive to certain things than it was before. I have to be very careful of what medications I take and what foods I eat as any of these can set off a flare with me.

AngelLisa
Forum Moderator


Date Joined Nov 2014
Total Posts : 2490
   Posted 1/24/2015 10:56 AM (GMT -7)   
Sounds like fibro to me too, the fibro board is more active like jkn said, you might want to try over there. Hope your weekend is as pain free as it can be.

*******************************************************
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

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7180
   Posted 1/24/2015 12:18 PM (GMT -7)   
you make want to and find a diagnosistic specialist.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Keepsmile512
New Member


Date Joined Jan 2015
Total Posts : 5
   Posted 1/24/2015 2:07 PM (GMT -7)   
Thanks for the input. I guess I never realized or experienced the sore glands and immune compromised stuff with fibro? I thought of FM as more of widespread pain and stiffness. Not so much flu like symptoms. What is a "diagnostic specialist" thanks

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 1/24/2015 5:05 PM (GMT -7)   
I get awful flu like symptoms with my fibro. It is more debilitating for me than the pain.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7180
   Posted 1/25/2015 10:40 AM (GMT -7)   
DX specialist can figure out symptoms and tell you what you have.
I went to John Hopkins in MD.,. I had so much pain in my head, face and neck, sometimes going down my right shoulder blade.

A neurologist, who was also a DX sp finally gave me 4 dx. See below. They are the ones beside the mental conditions.

Hope this helps.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 1/27/2015 10:42 PM (GMT -7)   
KeepSmile, I am sorry you are going through so much right now & I will say that some of your symptoms could be CFS. Sore lymph nodes & inflammation are just two of the symptoms I deal with. My legs are very sore to the touch due to the inflammation around my knees. When I am crashing from CFS I have flu like symptoms & extreme fatigue. My mouth is often dry but I think it is more from the meds I take then anything to do with the Chronic Fatigue Syndrome.

CFS is an illness that is dx'd by eliminating all other possible illnesses with the same symptoms. Once everything has been ruled out then CFS can be dx'd. It takes some time but worth the wait. I was not happy with a dx of CFS but after reading about it & living with it I had to agree with my Rhuematologist. Have you ever gone to a Rhuemy? Might be who you need.

I wouldn't rule out also having Fibro, I have both but can tell the difference now. My primary illness is the CFS.

Take care of yourself & keep us updated on your progress. Please take the time you need to reach a diagnosis, whatever it is. I was really stressed until I found out what was wrong with me, I spent a lot of time surfing the web & researching illnesses. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11
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