To those who developed cfs after mono

[boomer]

My daughter developed cfs about 14 years ago after getting mono in high school. I have some quick questions for those who developed cfs in their teens or twenties following illness with mononucleosis. I am wondering if there are different symptoms of cfs after mono compared to other cfs?

1. If you were tested for xmrv, did you test positive or negative?
2. Do you have post exertional illness the next day after general, not very strenuous exercise?
3. Do you have pain in your neck, back and or shoulder? Sometimes have migratory pain?
4. Do you suffer with depression?
5. If you are on anti-depressants, does it help you cope with physical pain.
6. Is sleep a big issue for you, unable to fall asleep and waking up frequently?
7. Do you find you pull tendons such as sprained ankles and shoulder dislocation more than others you know?
8. Do you have tight muscles in your back?

My daughter's responses would be:
1. not tested yet
2. It doesn't seem to be any worse than if she was under a lot of stress. She hasn't noticed a strong connection.
3. Yes, much but the main areas of pain are neck and lower back and ongoing shoulder pain.
4. yes
5. yes
6. sleep is normally not a problem if pain is under control.
7. yes
8. yes

 

[cfs since 1998]

1. not tested yet
2. immediate PEM but not delayed PEM
3. Yes
4. Not really
5. N/A
6. sleep is often a problem but not always; quality of sleep seems random
7. Yes
8. Yes

Although I am a mononucleosis/sudden onset case, about three years before getting sick I started having episodes a few times a year of orthostatic intolerance and dizziness. I think I might have been born with XMRV or got it at a very young age, and mono was the straw that broke the camel's back (or, considering how hard acute mono is on the immune system even in healthy people, you could call it a 5-ton weight that broke the camel's back).

 

[ZoeHines]

1. Not tested yet.
2.Delayed PEM next day.
3.Bad lower back pain, heavy tired shoulders, and often terrible headaches.
4.No, no depression.
5.Doctors FIRST put me on anti-depressants, saying I was 'sad' but didn't help.
6.Have huge trouble falling asleep, once I am woken, can't get back to sleep.
7.Have sore joints, nothing with tendons, but in last 3 years tore teres ligament in my hip twice, and had to have it removed.
8.Back very tight.

First got mono (or glandular fever as we call it here in Aus) at 14, have never recovered, just gotten worse. I have had periods of almost feeling normal, but then go back to crap.

 

[Sushi]

3. Do you have pain in your neck, back and or shoulder? Sometimes have migratory pain?
7. Do you find you pull tendons such as sprained ankles and shoulder dislocation more than others you know?
8. Do you have tight muscles in your back?

Hi Boomer,

Just a thought: I have very high EPB titers and did show symptoms at an early age, but I also fit the profile of Ehlers-Danlos syndrome as do a fair percentage of those with CFS--particularly those with marked autonomic problems. Ehlers-Danlos type 3 (often called hypermobility) can be responsible for the 3 symptoms I quoted. It is a genetic condition affecting the connective tissue, which can include heart valves (mitral valve prolapse) and vein valves (if these valves are "floppy" they can cause blood to pool in the lower part of the body and be part of the orthostatic intolerance problem).

Most people with EDS type 3 have problems with subluxations and/or dislocations.

This is just another interesting question to bring up.

Sushi

 

[taniaaust1]

Im not sure when my CFS started.

I had a couple of weird eposides as a child where my muscles suddenly "burnt out" and i couldnt walk no more.
Then i got severe mono (Had it bad for 10 weeks.. beridden for all or most of that) when 15? years. I recovered from that thou it left me with a poorer memory than i'd had before that. It decreased my ability to learn.
Then i got CFS 10-11yrs later.

I think the fact i had the two weird eposides when a child (once was a school hike.. and thou i was extremely fit, on this occassion i found that half way throu the hike, i couldnt continue with the other kids), showed there was something wrong with me even back then. The fact also my mono was so severe (i actually went unconscious with it more than a couple of times) wasnt normal... whatever is wrong with me (XMRV???) i think made it so severe.

Maybe those who get mono do have something different about us.. so i'll answer those questions. It's hard as my CFS changes so much to how it is.. how it is right now and how it has been in the past. So i may have to give different answers for the questions to cover how i've been.

1/ Havent been tested for XMRV but sure i have it due to all the illness in my family
2/ Yes currently get post exertional illness next day after minor things even when it didnt seem to be strenous at the time.
Used to go into pain immediately on doing things.
3/ Yes . I have currently shoulder issues.. and back issues which keep playing up. I occassionally have neck issues. (I go to physio weekly) . I did used to get migratory pain.
4/ No I dont suffer from depression (thou have for brief time periods in the past)
5/ No (i get reactions to anti-depressants so couldnt take them even if needed)
6/ Yes and No Used to have bad sleep issues.. currently I have no sleep issues
7/ Yes As child i had a weak ankle where it rolls out, making me fall down, that still occassionally happens. Currently got shoulder injury with torn tendons
8/ Yes I suffer a lot of tightness in my back (physio has told me that that is affecting my shoulder and part the reason it isnt healing)

 

[Esther12]

Unnecessarily full answers here. Not sure why, maybe I just find myself a bit too fascinating.


1. If you were tested for xmrv, did you test positive or negative?

Not tested.

2. Do you have post exertional illness the next day after general, not very strenuous exercise?

I was going to say the it's only strenuous exercise like walking that really gets me. Then I remembered that walking or cleaning is not seen as terribly strenuous by most people. If I keep my exertion levels moderated then I'm normally able to avoid post exertional fatigue the day after (other than the general, chronic fatigue which is constant).

3. Do you have pain in your neck, back and or shoulder? Sometimes have migratory pain?

Not really.

4. Do you suffer with depression?

Not any normal sort, and when psychologically assessed they said not. I think I can be philosophically blunt in a way that some see as bleak. If I do suffer from depression then I always have done, and am pretty chirpy about it most of the time.

5. If you are on anti-depressants, does it help you cope with physical pain.

Not on AD, and don't have much pain.

6. Is sleep a big issue for you, unable to fall asleep and waking up frequently?

I think sleep is a big issue with me, with my fatigue often being terribly worsened by only marginally interrupted sleep (the sort that could normally be brushed off), but I don't have too much trouble getting to sleep and I only seem to wake due to external issues (too hot/cold, noise, light, etc) rather than it being a normal part of my sleeping habits. These sort of disturbances happen rarely (about once every month?) now that I'm sorted with black-out blinds, sleeping plugs, etc.

7. Do you find you pull tendons such as sprained ankles and shoulder dislocation more than others you know?

No.

8. Do you have tight muscles in your back?

No. Sometimes I clench my jaw at night though.

 

[boomer]

Thanks for your replies. It's interesting that Esther12 does not have pain. Why some do and others don't is a mystery. It will be interesting to see if the mono group are strong xmrv positive.

 

[lucy]

I had mono too at first.
1. If you were tested for xmrv, did you test positive or negative?
Not tested yet, too expensive for me.
2. Do you have post exertional illness the next day after general, not very strenuous exercise?
Tell me about it! I had DOMS in the muscle near the eye after spending an hour or so looking through a telescope. Or the other time I had sore muscle in my palm after cutting cardboard with scisors. Some easy walks can end with pain for 4 days. Strangely, when the pain is gone, I get migraine.
3. Do you have pain in your neck, back and or shoulder? Sometimes have migratory pain?
Initially I used to have back pain if I did not have a walk every day, no migratory pain, more single point pain.
4. Do you suffer with depression?
I had some days when I would just collapse psychologically, needed to cry out. But it was only in the first half year of illness, when I was not accepting the change.
5. If you are on anti-depressants, does it help you cope with physical pain.
I am on SSRIs, my chest pain has dissapeared since then. first 3 weeks after starting SSRI I did not have DOMS, then it returned.
6. Is sleep a big issue for you, unable to fall asleep and waking up frequently?
I was like that for 5 weeks, with 3 hr of sleep per night at most, until started the SSRI. Sometimes it comes back. My dr. told I have anxiety, and I could partly agree, I was really woried, but then, the egg and chicken question - illness, sleep problems, anxiety - which is first?
7. Do you find you pull tendons such as sprained ankles and shoulder dislocation more than others you know?
I had strange inflammation in tendons, no dislocations or sprains, but I know another young woman, who had mono, recovered in 1.2 yr, 2 yr later had damaged her knee due to hyperflexibile joints.
8. Do you have tight muscles in your back?
nope.

 

[*GG*]

My responses would be:

1. not tested yet

2. Sometimes, I do a lot of mental work also, so hard to tell.

3. Yes, much but the main areas of pain are neck and lower back and ongoing shoulder pain.

4. Not usually, have had a couple of episodes due to work and major pain!

5. Take them, but don't think they rally help, I will look into going off them and just do regular meds.

6. sleep is not normal, unable to fall asleep and waking up frequently, I am on some meds now that help a lot.

7. Not quit, I think it is my muscles, not tendons, mine is in my neck.

8. yes

 

[InChristAlone]

1. If you were tested for xmrv, did you test positive or negative? - Not tested
2. Do you have post exertional illness the next day after general, not very strenuous exercise? - Yes, but less than I did a year ago
3. Do you have pain in your neck, back and or shoulder? Sometimes have migratory pain? - Yes; pain in my neck, not so much my shoulders and severe migraines
4. Do you suffer with depression? - Nope, not at all
5. If you are on anti-depressants, does it help you cope with physical pain. - Not on any anti-depressants
6. Is sleep a big issue for you, unable to fall asleep and waking up frequently? - Yes; I wake up frequently during the night and then close to the morning (around 5am), I'm unable to fall back asleep
7. Do you find you pull tendons such as sprained ankles and shoulder dislocation more than others you know? - Nope
8. Do you have tight muscles in your back?[/B] - Yes; but keep in mind, I have scoliosis as well as CFS/ME