Recovery/relapse
Posted , 5 users are following.
Hi everyone, I am in need of some advice or more reassurance really that this is normal! I turned the corner and began to feel a bit better 6 weeks ago at 5 months in, but since then I've been having one week where a lot of the symptoms either completely disappear or get significantly better, and i sleep better etc.. and im not suffering horrific anxiety and impending sense of doom. Only for the next week, for them all to come raging back and feeling like i'm right back at square one! how can I have two weeks where I feel on the road to recovery and then right back to square one?? I just don't seem to be able to go forward and stay there!! plus I've even had some symptoms from the early days which had gone months ago get thrown back into the mix! every time this happens it is just devastating and I begin to doubt my recovery and spiral back into deep depression thinking that I'll be stuck in this cycle forever and that I simply cannot live like this! Is it normal to feel like you are recovering and then relapsing over and over and still actually recover fully, because right now after another horrific night of panic attacks, night sweats and skin crawling, I'm absolutely defeated and could really use some words of wisdom from those further on in this horrific journey! I'm at 6 terrible months now and so desperately waiting for a big breakthrough that does not go backwards, will it happen??
0 likes, 25 replies
Mono_too martine25248
Edited
Hi Martine,
You have described perfectly everything I felt the first time around. I felt that way these last times too, but I knew it would get better eventually and it has. Still have some up and down days but more good than bad.
Read only recover stories when you feel most down, sign up for online streaming service and try to watch something you are interested in, it helps to distract the brain, which seems to like to work overtime during this illness.
You are going into the recovery phase and this will take a while, but you are on your way.
martine25248 Mono_too
Edited
Thank you for your reassurance Mono, it really is a huge help!! I don't know what I would have done without this forum these last months. I try to read only the recovery stories and believe that despite the severity and longevity of this illness, that it is possible to recover, but it's such a mental battle and I doubt my recovery so much on the bad days, especially when the bad days last two weeks straight before letting up. This forward and back process is so grinding!!
saba2012 Mono_too
Posted
mono, yes you are saying the right thing, brain is working in overtime, i know that for sure, i'm watching tennis on tv as distraction, that's the only thing i can take, you always have encouraging words for us who are still on the hard road to recovery
saba2012 martine25248
Posted
omg martine you are taking the same words out my mouth what i'm going through, exactly the same, i remember we last messaged and you said that you are feeling better and i was so glad for you, i've experienced the same things what you describing, really feeling like my old self and was really looking ahead, and then bam, same symptoms like in the beginning and horrific anxiety, right now i'm into deep anxiety, depression, the top of the head burning sensation again, and i'm also lost for words, this can't be real, i will also read what others are posting regarding this crazy spiral, message me if you want
martine25248 saba2012
Posted
Hi Saba,
I just don't understand this illness, how can it Start to feel like it's getting better and then fall right back again. I had two good weeks, not like fully recovered, but a lot better, then back to sick again for two weeks and then another good week, the best yet! and now back again and I'm nearly two weeks into another relapse. The anxiety is horrendous and weak legs, pain in my neck and internal vibrations and just waves of doom where my brain seems to be sending out messages of panic. All of the symptoms just came rushing back and even had some night sweats again which I haven't had in 2 months, so that was very disappointing. It just feels like it will never be over! How is your sleep now Saba?? mine is still pretty bad and i still have to take gabapentin every night to get any decent sleep. I still can only sleep in the day if medicated. You are at almost 7 months too now aren't you Saba??
saba2012 martine25248
Posted
martine, yes for me also 7 months, and I'm like you so baffled, i don't get it, i was too feeling great, not completely great but for us we know just a bit to feel better is huge for us, at least a little bit of light in this horrible darkness, and then bam again horrendous same symptoms, depression, anxiety, top of head burning, and i also have the panic symptoms, my going to sleep is a ritual, it has to be dark, i take my sleeping meds and lay down and pray that i can fall asleep, i think this virus so highjacked the brain that is unreal, for someone who never went through stuff like this they can't understand, i'm sure all of us been through some rough stages in life, healthwise, but this is unreal
martine25248 saba2012
Posted
Hi Saba,
Did you need sleeping meds before you got sick, or is it just since you got mono?? what are you using for sleep? I'm using gabapentin, which sort of helps with everything, pain, sleep and panic. I'm taking high doses now though as I've needed to keep increasing the dose to get the same effect, which isn't ideal and I'm worried about withdrawal effects later on. I couldn't cope without it though. What are your current symptoms Saba?? I've still got loads. Sore throat that feels swollen and I get that every evening, pain in neck/head intermittent dizziness, internal vibrations, muscle twitches and flickers, hair falling out, physical agitation and uneasiness and panic, flashbacks to when I was really really sick, which causes more panic, sleep disturbances and intermittent night sweats and inability to sleep during day unless medicated, like there is something wrong with my brain. In fact it feels like the whole thing amounts to brain and nervous system damage!!
saba2012 martine25248
Posted
martine I never had sleep problems in my life, no problems falling asleep or going to sleep before all this, i can take naps, sleep in the car when someone is driving, going to sleep at night with no problem, when this whole thing started, it was like a switch, that's why now is a going to sleep every night ritual, i was taking 300 mg gabapentin and it did nothing for me, and this is pretty high dose, not even make me sleepy, right now i'm taking seroquel 50 mg, and remeron 7.5 mg, but like you are saying something happened in the brain that the brain is not automatically preparing us going to sleep or getting tired, i too believe that ebv is doing something to the brain and nervous system, right now i'm dealing with anxiety, nervousness, tremors, i too get flashbacks to the beginning when i was sick, is it ever going to end, every day is like what symptom is it going to be, i don't know what i would do without this forum
Mono_too martine25248
Posted
Hi Saba and Martine,
Thank you for the kind words. Its a long process for sure, I wish doctors knew more about it so they could prepare people for the long mental and physical process. I have read that long covid can last up to 18 months and wonder if these people may have mono triggered by long covid which is what happened to me or maybe its just the way the immune system reacts to certain viruses. I find it helps to think of my bad days as my immune system fighting for me.