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Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 6/21/2013 7:09 AM (GMT -7)   
Hi to all,
 
It looks like I am about to be diagnosed with CFS.  I have been going through extensive testing, and it has all come back normal. The last testing I had was for food intolerances, and if that all came back normal we were down to CFS. Well I got my results in the mail and it was all basically normal.  They will likely confirm the diagnosis on Tuesday.
 
My symptoms are severe fatigue, frequent headaches, joint/body pain, and chronic nausea.  In the evening I get a sore throat and short of breath if I don't go to bed early enough.  At this point I am still working full time, but it is getting harder.
 
I am looking for some advice on the best way to manage my symptoms. Any amount of exercise makes it worse,
but I thought gentle exercises were supposed to help CFS? confused I am on adrenal support supplements at my doctors recommendation, but they don't seem to be helping. I am open to any suggestions.
 
Thanks!

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/21/2013 11:23 PM (GMT -7)   
Jamie, I am sorry you are being dx'd with this terrible illness, it seems like more & more people are coming down with it or maybe just more Drs are finding it is an illness & dxing it more. It is really hard to wait for all of the tests to be done & then find out it is something you can do hardly anything about. As I was getting all of the "normal" tests coming back it felt like I should be the healthiest person on the planet, I should feel so good but I felt terrible & just wanted something to validate that.

Pacing yourself is one way to manage your symptoms. There is really nothing you can do when you are flaring except to ride it out & rest as much as you can. When you are feeling better remember to not overdo because you can make yourself very sick. I hope you can continue to work, is this a physical job? You are right any amount of exercise can take all of your energy away. A lot of Drs & therapists still think that exercise is the key to recovery from this illness but all it does is puts us in bed. I can exercise on a good day & may even make it through with no ill effects but that is few & far between. If you are going to exercise start out really slow & your body will tell you when you have done too much. Take care & welcome to the forum, 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

Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 6/22/2013 9:02 AM (GMT -7)   
Thanks Denise. I learned about the crash the hard way about 2 weeks ago. I pushed myself even though I was tired to get our two upstairs rooms cleaned (we had company coming) and the next day I woke up with a severe headache, vomiting, and hardly able to get out of bed. It was awful, and it took a few days before I went back to my baseline level of tired. (I was so exhausted).

I will try to do a better job of pacing myself. Today I walked around the neighborhood (very slowly) with my daughter delivering flyers, and have been resting the last 2 hours so that I can get up the energy to take her to a birthday party. It's so hard to feel this way, I used to have so much energy. I always loved my sleep, but I could get up at 6 and run until 10 with no problem. No I have to rest after a little activity, and after working all day I am dead on my feet. Luckily I work for a school so I am now starting summer vacation, so I will have more time to rest.

I also hope I can continue to work. I am a pediatric physical therapist, so yes fairly physical. I remember that in PT school they taught us that gentle exercise helps patients with CFS, boy am I disproving that lesson. LOL.

You said during a flare--does this condition have flares and remissions? Is it day to day, or can you feel better for longer periods of time?

Thanks again for the welcome.
Jamie

ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 6/22/2013 10:39 PM (GMT -7)   
Jamie, cleaning for guests, boy have I been there. My house stays livable for me & my family but it is not company ready by any means. My daughter has several auto immune diseases so neither one of us has the energy for deep cleaning. People just don't understand how hard it is to have company come to stay. I have to have quite a bit of notice & still I about kill myself getting ready. lol

I said flare because I also have Fibromyalgia & use the term interchangably but with CFS they are not true flares. I am sick & very fatigued most of the time. I do have days that I feel better but they are short lived & maybe one or two a month. Early on in the illness some have found remission, that is within the first three years. The percentages of that, I don't know but have read it is possible. Either that or they didn't have CFS after all.

Hope today is a feel good day, 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

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 6/27/2013 1:35 PM (GMT -7)   
I really think one of the most frustrating things in all this is when test results come back normal, but you just know something is off w/in your body.  How did your start, with an acute illness, or over time?  That can at least narrow down some possibilities.  Mine started 2.5 years ago with a simple bout of the flu, and I have never felt the same since.  Immune system show some slight abnormalities, and also borderline low testosterone, but that is it.  When you say all tests, I assume you have had hormones/thyroid/adrenals performed?  To feel so fatigued indicates a breakdown somewhere, but until you can find the cause treatments are trial and error.  I have a mild case, probably at 70% of my pre illness state.  I too work FT.  It is very hard some days, but without the income and insurance things would be much worse.  Here is what has worked for me to at least have some social life, exercise a bit, and work FT:  Lots of vitamin B, 30 mg Vyvanse (mainly used for ADHD, off lable use for CFS), DHEA, and T supplementation.  Even with all these I am only able to get back to 70%.  I have learned to manage this somewhat, but every so often the temptation to over-do it happens.  It really hurts to see others just breeze through their days when we have to gut it out most of the time.  Keep us posted.  This forum tells you that you are not alone.

Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 8/14/2013 8:23 AM (GMT -7)   
Thank you both for your advice, and sorry it took me so long to respond. I have now been officially diagnosed with CFS and tested positive for a chronic virus (HHV-6). Apparently it is something all kids get around 3 or 4 years old and then goes dormant, but can flare if something happens to your immune system.
 
This whole thing seems to have started a couple of years ago when I got really sick right before Christmas- I ended up in the ER with a very high fever and extreme weakness/fatigue. They never did find what was wrong but treated me with IV antibiotics and lots of meds to bring the fever down. I felt like I never got 100% better, and then in the last year I feel like I have been getting steadily worse. 
 
The doctor has started me on monolaurin and viraclear in addition to the adrenal supports and daily vitamins. If that yields no results we will try Valtrex. Unfortunately I am not tolerating the monolaurin well, I am supposed to work up to five capsules and after just one my stomach hurts really bad. UGH! I also have given up most caffeine- which I have to (begrudgingly) admit has helped with my focus/concentration (seems backwards!)
 
The saddest part of the visit was when the doc confirmed that I will likely NEVER feel 100% again, but I am trying to focus on the positive that it can get at least somewhat better and hopefully not worse. I feel like I am about 50% of where I used to be energy wise (I used to have SO much energy too)- I am hoping to get a little more back with all these supplements/meds.
 
Thank you again for your support and advice. I really appreciate it. I feel like no one around me gets it--they seem to think I should be all better after a nap.  rolleyes
 
Jamie

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 8/14/2013 10:54 AM (GMT -7)   
Jamie-Did the HHV-6 result come back in some blood tests I assume?  At least you may have a cause hidden inside your body to treat.  I have to think that somehow my illness from the start caused a flare of another virus to do what it did to me, and continues.  I went from feeling super to where I am now in the span of 72 hours, but like I said, nothing in my tests really points to anything. I have heard some success in anti-viral treatments, so keep your chin up.  Will they test you again in the future to compare the HHV-6 levels in you, and see if there is any change?  That would tell me something is working at least. Finally, don't buy into the statement that you will never feel 100% again.  No one knows that for sure, but there is a possibility that you will.  I am still thinking that I can gain back full health someday, but at age 50, any improvement will do.  The hardest part for me is looking back at all I could do endurance-wise and what my body was capable of doing right up to the point of me becoming ill.  Trying to tell doctors you have fatigue and brain fog is tough, there is really no objective way to measure these factors.  And we all know that docs need some test result to properly treat.  And, if you don't look sick on the exterior, then you have even more convincing to do.  Onward I guess!

Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 8/14/2013 11:10 AM (GMT -7)   
yes, the HHV-6 came back with the blood test, but she didn't say anything about re-testing (but now I will ask!). She tested me for a few chronic viruses (EBV, HHV, etc.) and that one came back positive, but I guess its not standard testing according to the doctor.

I can't imagine the onset being so fast, mine was really slow and I thought I might be imagining it at first! It had to be scary to have it come on so quickly.

Currently the treatment is making it worse, but I heard that's to be expected and then it gets better.

Jamie

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 8/31/2013 4:18 PM (GMT -7)   
Hi and welcome Jamie. Have they not diagnosed you with fibromyalgia? I would dare to say that nearly 100% have fibromyalgia. That pain, all over your body is like have the worst influenza all the time, never ending. When you, or rather I have a flare it puts me to bed, in misery. Fibro and CFS go hand and foot for many people.

I am very happy to meet you. My dogs are staring at me needing to go outside so best go for a bit....until later...Cathy
I am 62 years old. I was diagnosed with clinical depression 30 yrs. ago. Followed by: Fibromyalgia, spinal stenosis, arthritis, Neuropathy in both feet and lower legs for 8 years. Recently have neuropathy like burning in both hands and arms, possibly from damage to my neck.. I was diagnosed with diabetes about 4 months ago so my neuropathy is still diagnosed as idiopathic. Fibro and CFS.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 9/1/2013 8:12 AM (GMT -7)   
Are you a guy or a gal Jamie? Forgot to ask you in my first post to u......
I am 62 years old. I was diagnosed with clinical depression 30 yrs. ago. Followed by: Fibromyalgia, spinal stenosis, arthritis, Neuropathy in both feet and lower legs for 8 years. Recently have neuropathy like burning in both hands and arms, possibly from damage to my neck.. I was diagnosed with diabetes about 4 months ago so my neuropathy is still diagnosed as idiopathic. Fibro and CFS.

Jamie2012
Regular Member


Date Joined Jun 2013
Total Posts : 25
   Posted 9/1/2013 11:06 AM (GMT -7)   
Thank you for the welcome, and I am a girl :)
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