Thank You

[Lorlynn]

I want to start out by saying thank you to all of you. I have been reading through this forum for a few days now and I can't tell you how thankful I am to have found you and how helpful this site has already been. Now for my story........

In late November I started with Severe debilitating fatigue that developed after a tremendous amount of stress, then started with lower back pain and peripheral neuropathy in both legs. I tried to push through the fatigue but it only made it worse.Christmas day was the worst and not only did I feel like a zombie all day, my family (god bless our adult children) I looked like one as well. Finally after about 6 weeks started to feel much better with all symptoms subsiding. Only to decide I hadnt cleaned my house for about 2 months and it was due for an overhaul.....a 2 day overhaul. Within 48 hours, I knew that I had made a horrible mistake. The worst fatigue I have ever experienced in my life followed by horrid pain in the back and weird sensations such as cold feelings going done my legs. This time the flare has lasted almost 8 weeks. Yesterday for the first time I actually drove myself to the store!

I am in the process of being diagnosed with......something. My general practitioner told me back in February that he knew what was wrong with me, you have fibromyalgia. Then proceeded to tell me that whenever I was ready to go on cymbalta or savilla to give him a call otherwise he would see me in 6 months. (How supportive)
I am also under the care of a neurologist as well as a rheumy. My neurologist says no way on the fibro and my rheumy says he's on the fence about fibro and wanted to do more tests, which all came back negative. I have had MRI's done from the brain to the pelvis with nothing really showing except some degnerative disc disease. EMG's have been normal and all blood work has come back normal except for testing positive for the Epstein Barre Virus. Also have had EEG's which came back with no seizure activity but showed nocturnal myoclonic jerks that have developed.
All I know is, the things that seem to trigger these flares are over exertion and stress. And above all else, The most important lesson I learned is from here on out I need to learn to pace myself with everything.
I know how much I have been through these last couple of months and at times how frustrated and hurt I have been with the lack of concern from the medical profession, family and friends and yet many of you have suffered through years of this nightmare and agony. I am so impressed with the strength that all of you must have and I just want to thank you again for all your support that you offer especially to us "newbies".

 

[diamond]

Hi Lorlynn and welcome. It is possible it's fibro but when I read you tested positive for Epstein Barre virus which is a cause of what we call glandular fever.

I think you call it Mono.

Glandular fever causes the symptoms you describe but i am sure you know all this. Is it possible you are still recovering from Mono after so much stress?

It is so frustrating when our friends family and the medical profession show lack of concern and support.

In time you may be able to educate those who are most important to you about how your illness affects you and maybe ways they can help.

We don't always look sick and it's pretty hard for us and them to get their heads around. Some relationships go out the window...some certainly change and some strengthen.

Take care and join in with thoughts and feelings any time.

 

[remnant]

Hallo Lorlynn. Welcome to the forum. Judging from your experience, you have alot to share with everyone. You have not yet been diagnosed with fibro despite a litany of tests though I do recognize that fibromyalgia is a syndrome which manifests itself differently in different people. I would like to give you a tidbit to manage your condition. Keep a diary of your activities including your food intake in order to zero in on the stimuli that triggers norciception or pain. Nothing complicated. In life I share with everyone that stress is a killer and managing it is key to checking numerous health issues.

 

[Lorlynn]

Thank you so much for the responses. The last 5 months have been pretty tough and have left me feeling pretty isolated and alone at times and functioning at about 10 percent of what my life had been prior to this occurring. It finally feels as if I am starting to finally coming out of this last flare and get back on my feet. I think the hardest thing for me is to learn what I can do physically without going over board. I guess the secret to this is learning to listen to my body and when it says enough be smart enough to take a break and rest and not push myself.

Willow, I want to thank you for your comments in regards to mono. I find it so hard to believe that I am positive for epstein-barr and the test that was done showed current replication of the virus going on and no one has suggested even doing a simple test for mono. I did ask my general practitioner about doing the test and he said and i quote "Don't even go down the Epstein-Barr Virus road, that virus is way over rated".

Remnant, I want to thank you for the advice to keep a diary of activities as well as symptoms. That is a great suggestion and something that I will definitely pursue doing.

I have an appointment scheduled for next week with a large neurological institue for a second opinion and I also have a second appointment with my rheumy next week so keep fingers crossed and please say a prayer that I will get some kind of an answer.

 

[diamond]

Good luck Lorlynn with these two appointments.

I know mono is something that takes along time to fully recover from. Your doctor dismissing this as a possibility seems strange.

I used to work with a girl who got glandular fever as we call it and it took her a year to completely recover with relapses along the way when she over did it.

Let us know how you get on.