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Epstein barr???
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kasie75 posted:
Hi everyone! Not a great day, I didn't sleep well last night so have been very fatigue and hurting today. I am in Kansas and its pretty darn cold here too.
What to ask everyone what they know about Epstein barr. When my symptoms first hit, it was more fatigue than anything. Then the pain hit. I had to quit my job, I just could not get my kids around and my self around and make it to work by 8 am like I have done all of my life.
When I first when to the doctor he told me my level was very high for Epstein barr and I must have had mono before. I was never diagnosed with mono, I remember being really tired for awhile around 19, but I never had any other systems of mono, anyway I have looked up Epstein barr and all I can find is basically everyone carries this virus in there bodies so just wanted to see what others know about having this with fibro. I take trazodone for sleep and getting a better night sleep has helped with the extreme fatigue, but I am still always tired and wore out. It is so weird how this illness just totally changes your life, I used to be so active and energetic. My mom also has fibro and was dx in her early 40 but I do not recall her every being so fatigued like I am, Of course I know everyone is different.
Anyway many of you have been dealing with this for years and I appreciate everyone's tips and knowledge.
Kasie
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missist responded:
Hi, Epstein Barr I have heard of. I had mono when i was 5--which is crazy early. Anyhow-- for the most part I'm not sure what could be done if you did have that. I don't know if there is any treatment for it--anti-virals? gamma globulin maybe?

It would be great if we could all find something to pin this fibro on--cuz for sure it is a hard and humbling thing to have a chronic debilitating illness that most people seem to have no respect for.

That said--I think the best thing to do is try to shrug off looking for the 'why' and focus you foggy brain on treatment options.

assuming you can focus of course. LOL.

My mom had fibro too--but she had later and had a lot of other issues with it. I have had it since I was in my 20s so 30 years just about. Mom got hers in her 60s. So I guess I can't say if it caused her to be as fatigued as I am. I'm better though than I was back when it started. I think most of us after a time learn to pace and to live in a way that is better for us and we end up having less pain and even less fatigue. I'm pretty active for a good 6 hours a day, sometimes longer. If I push myself I do pay for it though.

So that's kind of my tip-- don't chase rabbits, it probably won't help. meant kindly.
Mary
 
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Anon_10089 responded:
Hello-

You may want to research our ugly cousin, Chronic Fatigue Syndrome or M.E. ( I can remember what that stands for!). I think many people with that start off with mono or Epstein Barr.

It seems that some people with FM have that in their backgrounds and some don't. I, for one, don't and actually have a pretty strong immune system.

CFS/ME and FM can crossover and often have similar treatments and lifestyle needs. But there might be some differences.

This topic has also been brought up and discussed here in the past. I'm not saying we can't discuss it---open discussion is always good!! But you can look back at past discussions to read more.
 
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bette_kaffitz responded:
The wonderful neurologist who finally got me on a decent treatment program diagnosed me with fibromyalgia/chronic fatigue after one whirlwind day of testing.

I don't think that it made much difference in my treatment, but he did include an antiviral and an antimalarial in my treatment plan along with neurontin and the Duragesic pain patch. He also included treatment for lupus and Lyme disease. It was quite a cocktail of meds. The mixture got me off one horrendous flare.

However, these drugs are not taken lightly, and I have long been off them. If I were hit with another major flare up, I would beg, borrow, or steal access to those drugs.

Hopefully, you and your doctor can find a mixture that works for you. Please don't give up. There are medications that can make a difference. It does take a really good doctor, a lot of patience, and even more patience.

Bette
 
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kasie75 replied to missist's response:
Hi Mary,
Since this all started about 1 1/2 years ago it seems answers are all I am trying to find. When I told my doctor about my brain fog he said it was adult ADD, I had no idea until recently that a lot of people with fibro had major brain fog.
Well now I am done focusing on why and I am going to focus on what I can do to improve my symptoms.
Thanks
Kasie
 
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missist replied to kasie75's response:
Hi Kasie, Brain Fog is the worst thing. I know mine got a lot worse with the seizures I have been having--my memory in particular is shot. Dr says it will be better soon. Anyhow- I always noticed that when I have pain flares with the fibro-- the brain fog flares as well.

So really the Big thing is pacing yourself and avoiding the things that stress or learning to not be stressed by them. For me alot of that had to do with Telling people what stresses me-- which is stuff that probably does not stress them. If I can get them on my side its great--but if not I just have to insist that its my choice to not do this or that; or to do it differently. Holidays-- are a big on for me. Last year though I got a lot of help with Christmas and did not flare up for the first time in years. Even when I am not having it here it is still stressy to be in the same house with a lot of people for several days--which is what our family has to do since we are not in the same place.

Anyhow-- learn what stresses you & how to cope with it--and you will have less fog and less pain..
mary


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