Random “crashing” episodes?
Posted , 4 users are following.
So, to try and make a long story short...heres how this has gone for me...
Contracted the herpes virus in 2012. I'm still convinced that was the pre-cursor to all of this, because I haven't felt quite right since.
It started out with lightheadedness and dizzy spells last December 2017. By January, I was noticing cardiac symptoms which seemed exacerbated by temperature changes (especially in the heat of the shower). I would have near fainting spells and have this overwhelming feeling of doom. I'd have days where I felt flu-like and had a feeling of general malaise. Unrestorative sleep was a big one (still is). My vision had noticeably changed with blurred vision and episodes of tunnel vision. Then, by February, the veil lifted and I felt better for 4 months. I think I may have still had the visual disturbances, but everything was so mild, I didn't notice it much. June came, and all of the symptoms returned plus more. I had the light-headed, dizzy feelings, near fainting, vision changes, plus muscle fatigue and muscle shakiness. I remember walking up to the door where I work and thinking it was so much energy and my legs felt like they were filled with lead. My muscles would start to burn as if i was doing a really big workout right then and there...when all I was doing was walking. By August, I was having numbness and pins and needles in arms and legs randomly with even more severe muscle weakness (like they were still slightly numb and felt weird or rubbery when used) in those effected muscles for several days after. I began having muscle twitches and random (small) jerking movements in my extremities. Then, it lifted again for about 6-8 weeks. Felt better and seemed to have more energy (still had vision issues, muscle twitches/jerking)...BUT now hear we are again. Back to feeling fatigued, flu-like symptoms, achey muscles (especially in shoulders, arms, back), generalized shakiness and weakness, numbness and tingling in upper arms and left leg on occasion, with an odd sensation when trying to use those muscles, etc.
Have you experienced random months of remission in between months of feeling terrible? Have your symptoms gotten worse or added more after a relapse? Is that the nature of the beast here?
I know a diagnosis for CFS takes a long time...and i feel like I'm on that road (I have a rheumatologist referral) , but I'm still in that phase of trying to keep myself calm and tell myself its nothing worse like ALS or something. I've only had a Brain MRI, as far as, neurologic tests go, which was clear. But the muscle stuff is really freaking me out. My saving grace is the diffuseness of my symptoms. I went to a site yesterday and printed a symptom sheet out. I have 34/60 of the symptoms listed for CFS.
I think I'm just looking for reassurance from those experiencing the same things. I've posted several times about different random symptoms I'm having, but i feel like sometimes this illness can make you feel like you're losing your mind or that you're dying of some terrible disease in the next year. Thanks for listening and responding. Helps to know I'm not alone in this craziness.
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0 likes, 16 replies
philsey charcey97
Posted
HI Charcey
in the last 17 years there have been plenty of times I have felt bewildered by the return of symptoms, or the arrival of new ones, and the crushing feeling that having overcome something, it has now returned and I'm back so square one. So I feel for you, and yes, after a relapse you may well pick up a new symptom.
One of the first things my first specialist said, was to keep a brief diary. Of what you do, and also a score of functioning for that day. If you persist with this, you may well find that patterns emerge. There will not always be a traceable cause, but where there is a correlation a diary will show it up. From your story, I am left wondering what you did in between which could have caused the crashes. You may have drained all your reserves by a hitherto innocuous daily habit which before you were ill was no problem, but which over time has a cumulative effect. It might be dietary. e.g. a tolerance to alcohol or caffeine which your body can no longer sustain.
Everybody's illness is unique, and there will always be unexplained relapse (and sometimes unexplained improvement just when we thought we had overdone it. There are things we can discover about our lifestyle, but each sufferer has to be their own re)search student. The most practical help I can offer is to track your exertions with your symptoms in this way.
Philip
charcey97 philsey
Posted
Thank you for your reply, Philip. Honestly, I think I overdid it socially. I was going out to meet friends for dinner a lot in the last couple weeks after work, which I don't typically do. Burning the candle at both ends...staying up too late...even though I was tired. I think I was just enjoying the "remission phase". I think I'm just on heightened anxiety because it seems like this has been such a weird process. Its been 10 months since this all started and I've had two remission periods lasting 2-4 months and worsening symptoms after each relapse. Can it be like that in the first year? It baffles me...and thats why sometimes I feel like its something worse.
lori93950 charcey97
Posted
yes its tempting to go out and live life on days youre feeling better ... from what ive gathered most people get a turnaround at 6 months but 10 months seems to be the time when people start to feel normal . its a very slow virus so if you are feeling good just dont push it and remember that you are still healing .
lori93950 charcey97
Posted
mine started april with the dizziness unable to get out of bed ...i continued working out but had days where i just crashed by 5.30 pm .
it took 5 months and 6 different drs before i finally asked for an ebv test . once i got the test and stopped working out i got worse . hoping its die off symptoms .
i have to the shakiness hands and body trembling the last few weeks ...taking loads of supplements including homeopathy . im not sure what the trembling is ? its such a complicated virus
charcey97 lori93950
Posted
Me too, Lori. I constantly have the shakiness (except for my short remission phases) and this weekend started with the body trembling again with an added component of increased weakness. Seems hard to keep good posture and hold my head up. I do...but it feels draining. To top it off, I had a flu shot Friday, so its hard to differentiate what symptoms I'm having from that vs. CFS. The whole thing just makes me uneasy. How do you keep calm and know its nothing worse?
lori93950 charcey97
Posted
oh i just try to live hour by hour .... and try not to worry as i just think its all the virus ...its so powerful i am now realizing that. cant wait for this nightmare to be over ! completely done with it !
charlie19 charcey97
Posted
Hi Charcy
I can empathise with your situation. I have had unexplained fatigue for more than 7 months now. It commenced with odd head symptoms. I had a brief 3 to 4 week better period in July, and then a really promising 9 week period, which came to abrupt end in recent days. There appeared to be no trigger for this except I was doing more and starting to feel like my old self. I am now feeling pretty damn angry and sore as a result. I started to become more independent, walks of up to 30 mins, up to 14000 steps a day, did a few light swims....all gone back to where I was months ago. The only positive I can take out of this is that I am capable of some sort of improvement, that it is not a complete downward spiral. All I want is to feel better and move on..........I know this is what we all want who use this forum.
charcey97 charlie19
Posted
Thank you, Charlie! I highly appreciate your comments. I don't feel so alone when people are responding with "me toos". The craziness of this illness is the vastness of the symptoms. It truly makes one feel like there's got to be something terribly wrong and you won't be here in the next year! This is a terrible illness!
lori93950 charlie19
Posted
gosh thats awful ! you start to feel better and get your life back then boom it all comes crashing down. my first 5 months i had weeks where i felt ok and could lead a life ....then 2 months ago it all crashed down too .....soooo badly . i think this is post viral your body getting this virus back dormant or at least thats what im hoping . fingers crossed for us all !
charlie19 charcey97
Posted
Just when you think you are on the road to recovery, as you say wham out of nowhere you crash. My good period lasted 9 weeks although there were a few not so good days in there....I am hoping this recent 3 day spell so far is not going to be as long or deep as the one I had in late July, lasting almost 5 weeks. I agree the vastness of symptoms is crazy. At present my ears are so full and muffled I feel like my head will explode...and my tinnitus is full on...no respite now for 8 days. My only hope is that I at was able to show improvement during that 9 week spell...so hopefully things will turn again.
charlie19 lori93950
Posted
Indeed it is a crushing feeling after 9 reasonable weeks. I had a better 4 weeks in late June thru July so I am hoping the longer good spell is a positive sign.
lori93950 charcey97
Posted
yes mine started in april with weird dizziness odd days of crashing fatigue .i continued to work out for 5 months even though i was really tired. once diagnosed almost 3 months ago i stopped exercising and yes now my legs feel like lead .... i can barely do a short walk .
and yes this virus messes with your body and MIND!
make sure you keep resting even when having a good day .
i hope we are all on the road to recovery soon ... its such a terrible evil virus. its slow moving but we will get there !
charcey97 lori93950
Posted
Do you have days that it just feels hard or straining to hold up your head and have good posture? I am able to do it, but it just feels tiring...
lori93950 charcey97
Posted
omg yes ! some days just hard walking across the room . i feel like due to this always hunched over .
charlie19 charcey97
Posted
Head symptoms is how my illness started and are a still a major part of it. Super charged tinnitus, fullness, lightheadness, headaches, creepy crawly sensations all over scalp and face. Sometimes have the feeling I am floating or walking on sponges...that makes me hunch my shoulders and neck. I look in the mirror to see if I can see this stuff, but I just see my usual ugly mug as if there is nothing at all wrong with me. So frustrating, so disheartening.