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Recovery phase/Relapse phase please explain

Posted , 7 users are following.

starrA
starrA

hi

its me again guys

ok

will someone who is healed

please explain this

im confused!

relapse/recovery

blah blah

i need to understand it better

as i am all over the place and cant see the light!

i got hit 13+ mos now (8/14/18 sick date)

hit overnight!

so

since 1yr mark ive felt improvements more closer together than ever

now i feel bscksliding?

how do i know im recovering

and what is a relapse?

i feel like ive been up down sick since this started

?

now im still beat up

limited

yet doing more

but still not much

what is happening with my little body and if i feel better at times hours not days

is this a sign? of ill be me again ever????

only for it to be taken?

whats it all mean

i feel like this is it here

chronic

scares me

this that

will someone please save me

-:-)?

im over this

thank u

0 likes, 16 replies

16 Replies

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  • martine25248
    martine25248 starrA

    Edited

    Hi Starr,

    I have only written on this forum a couple of times, but read the comments on here a lot when I'm feeling at the end of my rope!

    I'm now 16 months in, and I'm still in a constant cycle of recover and relapse. I never have a fully symptom free day, but the symptoms vary in severity from one week to the next.

    just like you, I have cycles of different dominant symptoms, that are prolonged (several months) then that dominant symptom will go, only to be immediately replaced by another, my most recent and probably the worst so far, has been proctitis (inflammation and ulcers in my rectum....wonderful!!) but I've had gastritis, horrendous mouth sores, shoulder pains, nightsweats (they were fun) emotional issues (like feeling seriously unhinged) severe shaking, asthma attacks (didnt even have asthma before this) dizziness. like you said, enough to fill a novel. I was at my most ill after falling pregnant 9 months ago. Tragically my son was then stillborn right in the middle of it too, so that just set my recovery back again. so 16 months on and I'm still suffering all the time, no end in sight, wondering when it all might be over, I cant even imagine what feeling normal is like anymore!!

    • starrA
      starrA martine25248

      Posted

      how old are you

      thank u for your info

      do u think emotional turmoil haults healing?

    • martine25248
      martine25248 starrA

      Posted

      Hi Starr,

      I'm 34 and regards to pregnancy, it was a real mixed bag for me. Very shortly after finding out I was pregnant I got very sick, I'd already been diagnosed with EBV 5 months prior, but the pregnancy seemed to really bring the full blown symptoms of mono on. I was so poorly, that I could barely get to the toilet, and I really was completely housebound until I was 16 weeks pregnant. once I got to 16 weeks, all of a sudden I just got better, I had days of fatigue, but I felt the EBV symptoms go away. My son died when I was 26 weeks pregnant and the EBV symptoms came back about 6 weeks into the postnatal period. I'm not sure if that was due to all of the postnatal changes physically, or due to the trauma of losing my son. They have been back for about 3 months now, so although pregnancy did have a definite effect on the virus, it didnt get rid of it in the end.

    • ashley44325
      ashley44325 martine25248

      Posted

      what a thing to go through. it makes me think i should stop moaning about being sick. stay strong x

    • martine25248
      martine25248 ashley44325

      Posted

      Honestly, it has tested my endurance to the absolute limit! having this virus for so long, as anyone on this forum will know, is incredibly traumatic and mentally very testing, but to go through a stillbirth at the same time has been beyond cruel. I wonder how I haven't cracked sometimes Haha! Hope I guess, hope that one day it will all be over and that I'll be happy and no more physical suffering. I know what you are going through, and you are definitely not moaning! its brutal!!

    • christie32531
      christie32531 martine25248

      Posted

      Hi , sorry to butt in the conversation but I got mono yrs ago and although after many yrs it has improved I still get flare ups where symptoms come back and I am having one now for the last few months and I too have inflamed butt, but didn't think it was connected to mono. I have gotten tests done and getting a c scope soon. I also get mouth ulcers and uti along with a sore throat. It always starts with a sore throat and then leads to other symptoms.

      Hope you're feeling better.

      This thing sucks.

  • Mono_too
    Mono_too starrA

    Posted

    Hi Starr,

    I know this is scary, but it is the course of the virus. I was sick for over a year and fought the ups and downs you are describing. It will not last forever, the first year is the worst and then comes the up and down recovery.

    • starrA
      starrA Mono_too

      Posted

      thank u

      you have been most helpful

      and full of facts

      its just frightening because all timelines vary

      and then some take even longer

      you feel like ok is this me now?

      i really appreciate you

      im approaching mos 14!

      ugh

      daunting

      this thing

      please let me know anything else u may know!

      im so done

      i wanna give up a lot

      its up down

      i feel good then bam

      more so after 1 yr and closer together glimmers of hope

      hours of feeling good not days

      just seems so strange?

      thank u so very much!!!!

    • starrA
      starrA Mono_too

      Posted

      ps

      so people say rest

      i was in bed months

      but now i can do things

      small things

      mainly just fix my food

      small walks out back yard

      thats it really

      do i have to lay in bed all day to get well?

      i feel achy if i lay too much

      moving makes me feel better even though im weak at times

      weak at knees jelly legs freak me out ugh

      so

      is it ok to sit/chill

      do light things

      im not able to push

      i just do what i can

      if im not in bed horizontal

      will i heal?

      thank u

      what did u do?

    • ashley44325
      ashley44325 starrA

      Posted

      stress definatley triggered mine and im sure its what makes it last so long. also i was given a huge amount of antibiotics at the start

  • Mono_too
    Mono_too starrA

    Posted

    Hi Starr,

    This sounds exactly like me, I was in bed and then started being able to do small things. It is ok to do the things your body feels like doing. I was older when I got this (54) and my mothers doctor said that as an older person it takes longer to recover.( Just what I didn't want to hear) I would be very encouraged that there are days you want to get up and do small things, that is exactly what the start of recovery feels like, don't be down if you have tired days after it is just the process.

    Things I tried, 1000 mg of vitamin D per day, green tea, monolaurin and Advil as needed, for the ant-inflammatory properties. I think this helps with the immune response to this. Ask your doctor if this is OK. When I felt weak and legs felt shaky I would try a little sports drink and it seemed to help.

    • starrA
      starrA Mono_too

      Posted

      thank u very much

      yea, its confusing

      i was ill from the start

      aug'18-jan19

      still struggling

      i was shopping, groceries

      thats it

      functional

      but then had two set backs in feb

      that was it

      the next cycle began

      bad in bed limited from feb-may

      still beat up started feeling less like i was dying then bad set back again in july

      so then

      at 1 yr

      i noticed like things were feeling better burning out

      but still standing symptoms like weak at knees/and others

      but have had major good moments hours never full days-closer together than ever

      now though on cycle/time of month-

      feeling like backsliding

      lost what ive gained healing wise?

      feeling like ugh

      so its frustrating

      feeling stuck

      like will this really go?

      feeling stronger then setting back

      frustrating

      never ending

      seems?

      better than i was months back

      but still fragile limited?

      i appreciate your advice

      it helps a lot

      my timeline is confusing to me

      i at 5 mos thought i was better but then it all fell apart

      i eat well

      do all things right

      hoping it catches up!

      the thing that scares me most

      is legs.....

      im hoping i keep making progress

      i feel like some people say they keep going and continue to get better

      why do i back slide?

      confusing

      thank u again.....

  • Mono_too
    Mono_too starrA

    Posted

    Hi Starr,

    I think everyone does a backslide and for along time, I still will have days when I have the feelings, after a virus or a heavy work week. I am so grateful to feel normal 95% of the time that I have just come to accept the down times.

    The mental aspect of not knowing when recovery is coming is the worst, it wears on a person. I just think that when you are feeling better that the body is learning how to combat this thing but it is a tough opponent. Craig had a theory about this that was very comforting, maybe he can address this as I have forgotten some of the theory behind it.

    Try a sports drink when your legs are feeling shaky that seemed to help me a bit. You will recover, my daughter had the worst case I have seen and she took a very long time to recover and still fights it but to a far lesser degree. She was able to have a garden this year and work on her home. So there is recovery and a new appreciation for everything once recovered.

    • starrA
      starrA Mono_too

      Posted

      thank u

      im glad youre 95%

      thats huge when you feel this way

      i appreciate your info

      how long was your daughter in the thick of all this?

      the backsliding is tough

      makes ya think youll never get there

      my legs are better at times but its been my dominant symptom

      low back pain too

      which i never had?

      head stuff is tough too

      i wonder what my timeline will be

      and if i was feeling good will i get it back?

      i have a question on muscles

      the restless feeling was fading

      now back

      the aches are off on

      i wiped my table yesterday and my arm paid for it

      the soreness

      muscle issues

      does that get better?

      mine is better than it was

      but other than doing basic tasks

      anything more

      my muscles fight me?

      are they deconditiined?

      after resting for 13 mos

      as this fades will they ever feel good will i use them and be ok at some point?- normal?

      movement wise

      did u have this--normal??

      ive tested for all things

      having good ins i took full advantage;

      MS/brain MRI-clear

      full SPINE MRI-perfect not a disc issue nothing!

      ANA testing for lupus

      you name it, ive done it all

      muscle testing with Neurologist

      poking my muscles with needles that was so painful!

      but my nerve signalling is perfect

      no damage

      rheumtologist

      zero zero zero inflammation

      immunologist

      immune system fine

      no muscle enzyme depletion

      orthopedic spine surgeon

      xray /mri spine

      nothing

      except tiny arthritis in low back(which i think virus found weak spot in body and thats why legs bad?)?? who knows--

      which he says 95% of people have young /old--the arthritis in low back area

      gastrenologist

      zero tummy issues

      infectious disease dr

      who diagnosed me in Nov'18

      got sick 8/14/18

      took four mos to figure this out-which i had a hunch it was mono-

      so instead of resting i was running around trying to figure out what the heck was wrong

      had i known i wouldve rested more

      funny thing is my ebv numbers were not real high but high enough i guess?--

      started feeling better in jan

      stronger than now

      then had two set backs in feb

      and another in july

      here i am

      13 mos later

      started seeing things burn out at 1 yr

      felt more improvements closer together than ever

      then set backs

      how am i weaker now than in jan?? how can that be ?

      i was pretty much in bed from feb-jun in the thick of it

      now pulling from that

      i can fix my food

      make bed

      walk

      out in back yard not much but doing 3,000-4,000 steps/day on my fitbit

      trying to chill so i can recover but lack of muscle movement i feel is bad too?

      can my body fix all this

      ?

      its demoralizing

      glimmers of hope only to have them taken away

      one morning i woke my legs head were perfect!!!!

      not no more?

      i do not get this

      folks say push they got well others say rest they got well

      im chasing my tale here

      i have covered all bases

      as far as drs

      not sure what to do

      i rest at home

      have routine

      i dont feel sick anymore

      just banged up with lingering limiting symptoms?

      would you say any of these signs are a good thing ?

      i feel like is this it

      my life

      my body ?

      im p****d!

      with your experience all people are diff

      but what do u think?

      since drs suck and dont know what this is like!

      did your muscles rectify?

      are they normal?

      using them with normal movement w/o problems after?

      will my muscles reset?

      feel good again? re-align?

      a few wks back

      i was moving

      stretching

      then did to much

      it flooded back

      even low back was fading then bam!

      set back

      how can i heal under these conditions?

      will my body reset

      be right

      be fully functional ever

      be free?

      feel great?

      yoga working 5/days a week on 8/13/18-

      them 8/14/18

      bam

      hit so hard over night?

      sad most days

      but am grateful to do what i can and not in bed

      just wish i knew my time line

      and when my muscles will feel normal

      not achy

      or screwy after use

      or weak

      or wonky?!?!?!

      stamina

      will i ever regain that?

      ive been strategic with this here

      im out of ideas?.......

      sorry for the long speech

      just feel like you have been very helpful and factual

      im sorry to look for answers from you too i hope its not overwheling u

      i appreciate u ton!

      anything any bit of info is wonderful!

      ill try the sports drink! thank u

      im thinking had i not had set backs or made mistakes

      id be well by now.....?

      a cure would be nice.....

      thanks Mono-too

      for your time & info!

      -:-)

      easy button please!!!!! God

      sorry if my message is jumping all over!!!!

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