10 Months Update

Hang in there Meredith! I think I saw my first positive step at 5 months. 

The muscle weakness is hideous. I still have it in the morning when I wake up and I hate it. It goes way down about 30 min after waking thank god. But it seems to still be lingering- just not as bad. I don’t feel like I’m dying anymore. I hope it gets better for you!!! 

I have kids too. That was such a hard part in the beginning. I got really good at asking for help! Hoping you have a good support system to help you this summer. 

Thank you Lisa! All encouraging words! One of the hardest things for me is no exercise. I can't even imagine how I'll ever start working out again. And will it send me into another relapse? How do you know when it's appropriate, ugh the anxiety around this....I feel like just laying here definitely isn't good for my body but I don't want to over do it either. 

And my husband says the same thing about the anxiety not allowing me to progress. But like you said, I'm starting to try and accept it for what it is and calm down. 

Hey Maisie! Wow- it’s kind of comforting having someone at the same time frame and symptoms. Makes me feel less crazy! 

I too wake up feeling awful. It’s strange/ I’ll go to bed ok and sleep ok and wake up with the most fatigued arms and legs. And just general achey-ness. It gets a little better throughout the morning but never fully goes away.  I used to do yoga 4 times a week before I got sick! But it’s really hard 90 min yoga so I need to start with a more restorative type. That’s a great idea to start the day with! 

Do you notice that exercise makes you worse? That’s my one big fear. Even though I’m dying to. 

I’m not sure about the Lyme. If both my tests were negative I wouldn’t think a thing of it. But I had one positive. Here in the US they say both tests have to be positive for a positive diagnosis. So again I feel like I’m in a gray area. I know mono can totally keep you down for a good year and I’m using August as my target date. If I’m not seeing major improvements by then- I might see another Lyme specialist. 

I would love to keep in touch with yah- this sickness is so isolating. My husband doesn’t understand it at all. I don’t look sick anymore and he thinks my anxiety around regressing is what’s making me not get better. It’s hard to explain to someone who’s never been through it. 

Exercise is so important for us now! I find myself just moping about being depressed about still being ill. You need to experiment a bit, yoga will stretch you out and energise you, i have been doing sun salutations that way you can do as many as you like and gently gets your whole body moving. I dont know how you are physically but try going for walks start with 10 mins and build it up. There are lots of hills around my house and ill get 10 steps up and my body is screaming for me to stop but once i get to the top of the hill im fine. I find its easier to keep going if im with someone so that i dont give up hahaha. I can do a good 30-40min walk without it having an effect on my energy levels for the day, i will admit i do feel dreadful doing it but after im fine and i know that it will help me in the long run.

About the lyme thing, i honestly think you are still glandular fevery its just causing you more stress and anxiety which is really not good for you so try and forget about it until august

This forum is a saviour, no body understands! I have had anxiety and depression from being ill, not massively but a few random panic attacks and things like that and its so hard to explain to people whats wrong. Its nice to be able to compare with you as we are on the same time frame, id love to keep in touch.

Maisie

I kind of have the opposite problem! I’ll exercise and it will feel good and I’ll want to do it for longer. Then anywhere from 4-24 hours later I’ll get super fatigued. It’s so strange. 

I tried a few mornings of simple yoga- sun salutations and some warriors and stretching- but it left me pretty fatigued. Walking though- doesn’t seem to have the same effect. It doesn’t bother me at all (unless I’m in a relapse). But I’ll keep trying! 

Thank you for the reassuring words! I gotta keep telling myself that I’ll recover

Thats really interesting, maybe youre just not quite ready for it. It could be an age difference im 18 or you are trying too hard!

See how 1 round of sun salutations leaves you, and do short walks. Something is better than nothing and you've just got to keep experimenting. I had really bad trouble going back to college and finding the right balance of work and rest, it all takes time.

Hey Maisie / Lisa,

You're so right regarding getting some exercise but making sure it's the right level and gentle at first and not overdoing anything. It's great that you've been able to manage a walk each day Maisie, that is what I tried to do during the virus too albeit not a very long one most of the time. The fresh air and everything can just help as you say especially when feeling so down.

I really do understand those awful depressed and fearful feelings guys, been going through it myself for my present back pain and associated circumstances, sometimes I just feel like I can't face getting up to manage the next day. It's a horrible feeling and just praying God strengthens us all to bring us through the difficult times we are having. Thinking about you LIsa and Maisie, I know you guys have been through so much. Hang in there.

Craig

Craig! As always you are such a beacon of hope! I’ve thought about you and your recovery story hitting 10 months. I hope to God I start to see some real improvements soon. It’s been the most difficult year of my life. 

I truly hope you get on the mend to complete recovery soon. Chronic pain is so horrible.  And back pain especially. I have 3 family members who’ve had back surgeries/ 2 of them in their 30’s.  They finally found relief and you deserve to too! Does the warmer weather help at all? (I’m guessing Scotland is similar to where I live that by warmer  weather we mean 70

Hey Lisa,

Oh I really hope and pray that too Lisa that you can see some improvements soon. My experience was the Year 2 was so much more liberating, although I wasn't maybe totally 100% was back to much much nearer it and was able to do the vast majority of things I enjoyed doing again without any problems. God willing Lisa you won't have to go through anything like Year 1 again, that is the worst by far!!!

Thank you so much for the best wishes regarding my back pain too. I've not noticed much difference with the nicer weather although it is nice to see the sun for sure here in the UK. I'm in my 30s too and grateful that doc says I don't need surgery or anything but just frustrated and down too that I can't seem to make progress even with exercises and supplements and different things. Just feel a bit stuck! Any prayers for me much appreciated LIsa, thanks so much for your kind words means a lot!!

And thinking about you and believing totally that your road to full recovery has started and is going to get better and better month by month, hang in there.

Craig

Hey Lisa!

I am hoping for that real big turning point for you, as Craig always says, it will come for you!! Truly believe it! 

       I too am sorry for your problems with the Lyme tests, must be so stressful. It’s best to try to not think of it, even though I know it’s sooo hard. I myself can’t think of anything but my mono, as it is just getting worse and worse, and not better as time goes on.

       But remember to focus on your improvements! If you are improving, that’s a good sign for you!

       I had this massive setback at 3 1/2 months, and it’s been going on for 7 weeks, and it feels like it is just getting worse and worse and not better!

         Before this i was in a good point for recovery, as I was able to spend time with my friends, go for nice long walks, and I was able to shoot my basketball outside, (as long as I didn’t over do things). But now I feel MUCH worse, and it is slowly just getting worse and going backward. I am really worried that it will keep just going in a backward direction and I will be bedridden and lost of all progress. And I am really worried that I have and will have chronic fatigue syndrome and get stuck with it, mostly scared of that because I have been going in this backward direction, and have not been improving from this setback. Very weird, so I wanted to ask you all how setbacks went for you? Because I am worried what I am going through is not a normal setback and it will get worse and not get better. 

       But my best wishes to you Lisa! And to everyone else for full recovery!! 

-Youngboy

 Hey there! Oh man I’m so sorry to hear you are in a relapse. I started recovering around three months and had a really good 3 1/2 weeks and then I think I must’ve overdone it because I relapsed hard right before heading into 4 months and it lasted for at least six weeks. Then in January I started getting a little bit better and by February I was doing OK – not normal but maybe 75% back to normal. Then I relapsed again. It’s been a really hard up-and-down roller coaster. Right now  i’ve been in a down period for three and a half weeks – and it coincides with when I started doing acupuncture. So my thought is that acupuncture is kind of stirring stuff up and trying to get my body right and purging the mono and it’s making me not feel great. 

The relapses are totally normal. As is thinking about chronic fatigue. I think about that all the time. But it just makes me super cautious to try and not overdo it as soon as I feel a little bit better. Which is so hard!!! 

Hang in there! Are you as bad as the acute phase in the beginning? I found that I have not returned to that sick. 

Hey Lisa, that’s what mine sounded like too! I was going well for my 3rd month, and it felt like every week there was a tiny little step up, but then when I hit the 3 1/2 month mark, for a few days I felt worse than I had been, which confused me, then BAM I just started losing all my energy through out that one day. Every since then for 7 weeks so far it has been around that level, but i feel like it is slowly getting worse and worse and it’s not improving. I am really worried that it will just get worse and worse until I have to be bedridden and be stuck with CFS, like the path that I’m going on right now I is a bad one, and I’m worried that it is not going to get better. If any of that makes sense to you, what do you think about that? Because it has been in my brain all day everyday that I am not getting better and that I’m getting worse.

        Also before my setback, I didn’t feel any more join pain, and would never really get a headache, (like once a week). But now I gained all my old symptoms and more new ones that have worried me. Like headaches, achy and painful joints, muscle pain, and my hands seem to start cramping. And it’s just an unexplainable pain that I feel in my hands and other places too, (but right now mostly my hands). Did you ever experience gaining more symptoms during a setback? 

      Hmm I’m just worried that this is more than a setback and it will be worse. 

     I’m sorry that you have been in a up and down road! But you have made TONS of progress and that’s what counts. And if you were 75% then, how do you feel now? On ur ups are you 80% and on your downs like 65%-70%? 

      And how much active stuff can you do? Like long walks? My sister who is a pediatrician, says that it will help recovery if you do gradual exercises, whatever you can handle, and slowly build up as you get better. But make sure you don’t overdue things too, it’s like your trying to blow up a balloon, but make sure you don’t blow it up until you pop it!

       But remember I have faith that you will get better! And you have been doing great and have recovered lots, and more recovery is on the way for you!

-Youngboy

My Mono onset about 9 1/2 months ago. I have many of the same symptoms that you and lisa29739 have. Currently working myself out of my 2nd setback. Feels like this is taking forever to go away, but I have hope since so many people write that they start to feel better around the year mark. I'm still not where I can do any exercise, just going up and down the stairs is enough to tire me out.

Hang in there and keep taking care of yourself!

Blessings,

Kris

Hey kris

Sorry to hear your still struggling! But remember you will get to the end of this dark tunnel and you will recover. Have you had lots of recovery? Like have you seen much improvent? It would be a good sign if you have seen improvement.

        I too am in this setback, 7 weeks into mine and it’s not turning around, it’s getting slowly worse. That’s what it feels like anyways. I got brain fog again as a symptom, which is also getting worse. Overall I am not getting better. And this setback is not settling which is worrying me a lot. I am worried it will just get worse and worse and i will just be stuck with CFS. How do setbacks go for you? So far this is my first and it feels like it will never end and will just keep getting worse and worse. 

          Thinking about you and hoping for improvements! Stay strong and hang in there! God will heal you!!

Youngboy

I would say my good periods are 80%! I still can’t exercise but other than that I do ok. The bad periods are just bad. Not bed ridden for weeks bad like the first few months. But bad enough that I usually only leave the house to grab groceries. I ache all over and have horrendous muscle fatigue, pain and weakness. 

I think what you’re going through is completely normal. My first relapse was by far the worst one. I had plans to go to London with my family (we are in the US) and we had to cancel our trip the day we were supposed to leave because my relapse was that bad. I’m still upset about that! 

But- every time I go down the road of thinking it’s something else, something bad, I do tests and they come out normal. I think mono for some people just takes forever to recover from. And if we have classic chronic fatigue symptoms- I  don’t think we are stuck with this forever.  Our immune system‘s and bodies are trying really hard to get back to normal and it just does a number. But I do believe there will come a moment when it will just lift. I have to have hope! I think stress and anxiety makes us 1 million times more sick. My only advice would be to not go down that rabbit hole – as hard as it is. And have really great things to distract you! Movies or video games or books. It definitely helps. 

Oh I sorry that you have trouble with your bad periods! I think the main part for you, is that your good periods are 80%! The bad periods will fade as slowly they will get less and less for you. 

         Remember there is that turning point that comes, where you could have a massive step forward in a small amount of time, or it could just be gradual upward recovery for you until the bad periods will fade away and you jus won’t notice then anymore.

         Thanks for the encouragement! Very helpful!! But it seems my setback is really odd, I sunk to a certain energy level at the start of it, and seemed not to recover even after 7 weeks. Now I just feel like it is slowly getting worse and worse and worse until I will be bedridden and it will keep getting worse past that, and lose all progress I have made so far.  

           Like every day I just seem to lose more hope, and slowly throughout the days I’m losing the energy, gaining new symptoms, which is really weird and worrying.

         Ohh yeah, and about the stress and anxiety, that’s insane for me. It won’t settle my brain is always just sooo many thoughts going through it and always just stressing about this. It’s impossible for me to stop it’s really weird. 

         But anyways, I’m wishing for the best of you, hoping for your bad periods to settle, and hoping for your good periods to rise. Knowing you will beat this virus and become healthy again!

Youngboy

Hey Lisa, Young Boy and Kris,

Just wanted to offer a word of encouragement as from reading your messages it is so clear you have been through such long and terrible periods with this virus - please remember this can be normal for things to go on for this long but then still get fully better, very very few people even, including those who suffer badly even into the second year and more, develop CFS it's just so frustrating it takes different recovery times for different people - just hoping for a much better period ahead for everyone, hang in there.

Craig

Thanks for the encouragement Craig! We are all still thinking about your back hang in there! Your back will improve with time, I guarantee you that. 

        I’m still praying! Really unsure of what is going to happen next for me, I have a feeling that it will just go downhill over time and get worse and worse. And things have not been getting better which is worrying me a lot too. Just really confused and worried right now, as it’s a tough time.

      Still believing in you, and hoping that you have a much better week. Things will slowly progress for you, do what you need to, to relieve pain as well. 

Youngboy

Thank you SO much for the positive thoughts!  Yeah I gotta remember that I'm way better than before.  It just really tries your patience when you've been sick for so long.

My relapse was long too.  I was sick from mid November to early January.  Then I saw a natural path and she started me on some adrenal support, I cut out sugar and most carbs and I had a much better month.   I think you'll find what works for your body.  Or at least what doesn't work and you can avoid it. 

My symptoms were insane.  You name it, I had it.  Most all of them are gone except the fatigue and muscle/nerve pain and weakness and the occasional GI upset.   

I know you'll get there.  You are just in the thick of it right now.  It'll slowly start to change and get better.  I kept a journal on my horrible days.  It felt good to write out everything that I was experiencing, and I did not censor it haha, and then set one to two attainable goals for the day.  Sometimes it was just to shower or brush the dog.  One time I even wrote my goal was to survive.   I know how hopeless and awful it can feel.  I don't know your age but if your handle is any indicator, you're young.  This will be just a blip in your life and you'll learn so much from it and never take your health for granted again.  

If you need any netflix recommendations let me know!  I've watched sooooooo much these last 11 months! 

That is a really good point Craig!  I need to keep reminded myself of that.  I started acupuncture and it has helped loads with the anxiety.  It's been a miracle really.  Thank you again.  How are you doing?  Have you had any new therapy? 

Thanks for the tips Lisa!! And yesss I know how hopeless it is when you can’t do anything. 

       It’s weird at first my only symptom was fatigue, but then I had a sore throat with a cold, but I’m not sure if the sore throat was from the cold or the mono. 

      But at the beginning I was still able to go to school. Then things slowly got a bit worse, and then started to get overall better from mid-March through April into may. And I was able to walk around for miles and hangout with my friends, just nothing active. So I had made progress and was on a good path.

       But then middle of may i got this massive setback that I’m still going through, and it felt like I just went back in time to the beginning, as I gained my old symptoms like headaches and joint pain. But also gaining new ones which is worrying me, like achy ness, muscle pain, and extra muscle weakness and I got brain fog back, but it’s worse than before. And obviously I gained much more fatigue than before the setback, and it’s not getting better which is really worrying.

        So it’s not improving, and if anything it’s getting slowly worse and worse. And I heard that when people are getting CFS, they slowly get worse and worse and get more and more symptoms. Which I’m worried is happening to me. 

        So it’s confusing, as at the beginning I was able to go to school, and it got better to where walking around and hanging out with my friends was fine, just wasn’t able to do anything active. 

       But now I’m worried it’s all just turning around and I will keep getting worse and worse until I’m bedridden, and this setback triggered that to happen.

       So just wondering if you ever felt that way during a setback. But yea I am young, I’m 14. But it’s weird because my teacher who had mono said he got it at 19 and it went away within a month. Like soo unfair😂😂. And yea I might start the journal, that sounds like a good idea. And haha I’m good on Netflix stuff, thanks though. I usually just watch sports stuff on YouTube, and I have finished a few series on Netflix. 

        But anyways sorry for rambling a bit, but I do appreciate the encouragement a lot!! Hoping for your down periods so start settling soon, as I think it is coming up for you. And yesss for sure If god heals me, I would NEVER take health for granted ever again! Before I always needed to be the BEST in every category, I needed to be the highest jumper, fastest runner etc. Which I think is a good mindset, but I wasn’t grateful enough just to have the ability to run and jump and all that. Thinking and praying about you and Craig and everybody else too!! 

Youngboy

       

Oh man you sound so much like me!!  I'm such a crazy go getter!  I like to be active all the time and I"m super competitive.  I think this kind of thing hits people like us so hard.  It's miserable to be stuck at home.  And I'm willing to bet that while you felt better- your body just wasn't ready to go back to hanging out and walking.  It's exactly what happened to me.  Exactly.  I had almost 4 weeks of normal and I went back to my old life- aside from exercising- and it just made me crash.  I cried and cried.  Now my biggest thing is to conserve energy even when I have good days.  My acupuncturist told me to only take 25% to use and save the rest.  Mono will do that to you. And the fact that you had a good period means that your body can and will fight this off.  It's just going to take some time.  And you have your youth on your side which is a HUGE bonus.  Chronic fatigue in teenagers I believe is extremely rare.  So I wouldn't even let yourself think that.  And you get to stay at home and have people take care of you which is HUGE!  You gotta totally utilize that.  I might go back to my parents for a few weeks this summer just so I can get some help and really truly relax.  

I have no idea if acupuncture is good for teens or not but it has helped me tremendously.  

Yess!! It really sucks I used to be sooo competitive it was insane. Like to competitive, like in a bad way where it would get me in trouble in school, and at home because I would do anything in order to win😂😂, but also in a good way where I would never want to lose in anything, and had big expectations for myself. I used to be suchh a trash talker and I could back it up. So it is super hard to make that change, and dealing with it. And yes I hate being stuck at home, usually during the summer I do basketball workouts everyday and spend the rest of the day playing basketball with my friends. 

        And yeah I got set back because I did too much. I thought that my body was fine to hangout and walk and do all that as long as it wasn’t strenuous activity. Because I did it without hesitation, like I just did it, without even thinking it could make me feel worse. That’s why I thought my body was fine with doing it. 

        So I didn’t think I was doing to much at all, but I was wrong haha. And yea I get what your saying about the youth, but still there is that percentage, and I’m really worried that I’m that percent. 

         And about the help from my parents, yes I need it, but I wish I didn’t, I try to be grateful I have them to help, but I should be helping them at this age! I feel bad about it. But I am thankful that they help me so much. 

       Ooh and about the acupuncture, my mom has me do a little bit, I’m not sure what it does or how it works haha, but my mom does have me do some stuff with my hands sometimes. 

         Again sorry for the long message, but in the short, it so real confusing, and worrying. Especially because I’m going in the wrong direction and not getting better. 

         And yea, the summer could be a time for you to really relax! I do believe in your recovery 100%! You have done great, and have recovered well. And you will keep recovering until you are fully healthy. Oh yeah what about those Lyme tests that you had done? Did you end up having other problems too? Or just mono? Very very thankful for the great messages though! Thinking about your recovery too!!

Youngboy

Hey Lisa / Young Boy,

Just having a wee smile there reading your messages about being competitive and go-getting, I am also a competitive person this can be good and healthy and at times we all get guilty of taking things too far or letting ego overtake us - I know for sure I have too many times in my life!

Anyway just wanted you to know that I still believe that you are both going to be able to get back to doing these active things again, I just really hope and pray for the manifestations and that freedom in your lives soon, you've been through such hard times and thinking about you both.

Craig

Hey Craig,

Thanks for the great words! I’m still thinking about your back and hoping for the pain to improve! I totally believe In your recovery and know you will get better. 

         I’m still really worried because It isn’t getting better. And it is slowly getting worse. I’m not sure what has been happening, and why I have been in this backward direction. But still praying!! Hoping for a better week for you Craig!

Youngboy

        

I saw in another of your posts that you are 14. Wow! You definitely sound as if you are older. I'm glad you found this forum for support. It must be very difficult to be so young and used to having lots of energy and now having to dealing with Mono.

After two months, I am slowly starting to come out of my second setback. I made the mistake after the first setback of not easing back into life. This time I am still taking it pretty easy even if I feel better. I think the best thing you can do is to rest, rest and more rest. I'm lucky in that I like to read, so when my vision and brain fog are good, I can read. If not, I try t.v. If that is still too much, I lay in bed and listen to an audiobook or podcast. One thing I've noticed is that screen time really affects me. If you are anything like my 15-year-old daughter, then you probably spend a fair amount of time on screens. It took me a few months to realize how much the screen was wearing me down. (I did put a blue-light filter on my screen and that helped some.) Just something to think about.

Stay positive and keep praying,

Kristin

Hey kris,

Yeah I’m usually on my phone if I’m on screens, but before this setback I’m going through right now, I was able to walk around for miles and spend time with my friends, but now I can’t. And it seems like it’s just getting worse, and not getting better. I hope you are doing ok right now! Glad to hear your starting to come out of your setback though. Thinking about you!!

Youngboy