Can you help me out?

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Do you have any of these symptoms ?
1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (cant make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, cant get up from chair/bedwhat happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have? Thanks
 

5150

Senior Member
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Do you have any of these symptoms ?
1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have? Thanks
+ also i think staying in bed makes me feel worse
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hello SaveMe,
i share all of your list except part of #16) i don't miss days of school-not a school student- but i miss other things like social appts. thankfully i'm not working full-time or would probably be missing days there.
if you could stay in bed as long as you wanted, i.e. not have to get out to attend a class, you probably would feel"somewhat" better; but like you said elsewhere, it wouldn't be a cure.

i am genuinely sorry that you have been hit with this damn sickness. you are so right: it sucks. but, in trying to stay positive about it, you haven't yet had to suffer 20 or 30 years like some have experienced. Can you imagine that sort of a difficult life? It is really hard to envision, but it's some people's reality. On that note, you are somewhat fortunate to enter into the fray at this stage. There has been a lot of hard work and research done by the patients of our community, and you have access to the most up-to-date knowledge if you stay with this forum. Also, hopefully you know about the work of the Whittemore Peterson Institute, and Dr.Mikovits et al ? This is the cutting edge of current information, and you seem to have a grasp on that.

As you might also have perceived, the lack of funding by US Govt agencies for reasearch and treatment is an on-going challenge which we embrace. Of course, it would be much preferred if the CDC and the NIH would do their jobs without patients having to chase after them with a baseball bat(so to speak). All of us are eager for that breakthrough development in treatment that will offer a chance at a life that resembles "normal"... all the way normal would be great, but if you feel as bad as you and I feel, close-to-normal is acceptable. right?

I'm presuming that you are a young person because of the reference to "school". I am very sorry that your life is impacted in such a way while you're supposed to be enjoying so much. Please try to manage your symptoms by not over-doing things too much physically, adding the basic food supplements into your diet, and stay on top of your digestive system from now on. That's important, because your "gut" is a large part of the immune system. Be aware of the danger of inflammation in the entire body and combat it with good food choices and supplements. Support your heart with Vit E. Avoid sugar(including alcohol) and starchy carbs. There is much to learn about a new lifestyle dictated by CFS/ME. If you can take really good care of yourself early on, you'll be that far ahead when the time comes to start whatever is discovered for us. If you need help in getting better sleep, ask here on this board. We can help some things improve, others not so much.

all the best to you... take care

5150
 
Messages
421
Likes
7
Location
the city
+ also i think staying in bed makes me feel worse
-------------------------------------------------------------------------------------
hello SaveMe,
i share all of your list except part of #16) i don't miss days of school-not a school student- but i miss other things like social appts. thankfully i'm not working full-time or would probably be missing days there.
if you could stay in bed as long as you wanted, i.e. not have to get out to attend a class, you probably would feel"somewhat" better; but like you said elsewhere, it wouldn't be a cure.

i am genuinely sorry that you have been hit with this damn sickness. you are so right: it sucks. but, in trying to stay positive about it, you haven't yet had to suffer 20 or 30 years like some have experienced. Can you imagine that sort of a difficult life? It is really hard to envision, but it's some people's reality. On that note, you are somewhat fortunate to enter into the fray at this stage. There has been a lot of hard work and research done by the patients of our community, and you have access to the most up-to-date knowledge if you stay with this forum. Also, hopefully you know about the work of the Whittemore Peterson Institute, and Dr.Mikovits et al ? This is the cutting edge of current information, and you seem to have a grasp on that.

As you might also have perceived, the lack of funding by US Govt agencies for reasearch and treatment is an on-going challenge which we embrace. Of course, it would be much preferred if the CDC and the NIH would do their jobs without patients having to chase after them with a baseball bat(so to speak). All of us are eager for that breakthrough development in treatment that will offer a chance at a life that resembles "normal"... all the way normal would be great, but if you feel as bad as you and I feel, close-to-normal is acceptable. right?

I'm presuming that you are a young person because of the reference to "school". I am very sorry that your life is impacted in such a way while you're supposed to be enjoying so much. Please try to manage your symptoms by not over-doing things too much physically, adding the basic food supplements into your diet, and stay on top of your digestive system from now on. That's important, because your "gut" is a large part of the immune system. Be aware of the danger of inflammation in the entire body and combat it with good food choices and supplements. Support your heart with Vit E. Avoid sugar(including alcohol) and starchy carbs. There is much to learn about a new lifestyle dictated by CFS/ME. If you can take really good care of yourself early on, you'll be that far ahead when the time comes to start whatever is discovered for us. If you need help in getting better sleep, ask here on this board. We can help some things improve, others not so much.

all the best to you... take care

5150
thanks 5150 I never had the chance to meet a CFS patient face-to-face or a live support group, something I would like to do. when i stay in bed for a long time, my muscles ache more. Have you visited any of the top CFS docs? i wanna get on XYREM soon

Its amazing you have all of my symptoms. any ideas on what "did you in" ?
 

Sushi

Moderation Resource Albuquerque
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thanks 5150 I never had the chance to meet a CFS patient face-to-face or a live support group, something I would like to do. when i stay in bed for a long time, my muscles ache more.
If you put your location in your profile you might meet up with others face to face. There are people here from all over the world. I have met at least a dozen face to face. It is great to be in a "normal" group! :eek:

Sushi
 

5150

Senior Member
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278
I have been sick for over 25 years. I had a virus illness, lasted 2 weeks, but afterward i never recovered my prior strong-self. Things went only progressively worse, with some symptoms appearing years after the original ones started. i.e. heart weakness, digestive issues, swollen glands worsening, sleep deteriorated ; exhaustion has degrees of "bad" and it just got worse with time.

yes, you did a good job putting together your list. takes time for the process. btw, i am xmrv+
 
Messages
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Location
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I have been sick for over 25 years. I had a virus illness, lasted 2 weeks, but afterward i never recovered my prior strong-self. Things went only progressively worse, with some symptoms appearing years after the original ones started. i.e. heart weakness, digestive issues, swollen glands worsening, sleep deteriorated ; exhaustion has degrees of "bad" and it just got worse with time.

yes, you did a good job putting together your list. takes time for the process. btw, i am xmrv+
5150,
did u get tested by vip dx? if so, did you get the 2 for 1 special? $549:"* If both the XMRV virus culture and serology assay are ordered at same time price is $549. "
 

5150

Senior Member
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278
oh sorry... didn't reply about the doc situation. No top docs for me/ my insurance is bad, but yes I did get the culture & serology from vip dx, the WPI folks. where are you? anywhere near Reno NV ?