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Post viral fatigue syndrome- looking for recovery advice/story

Posted , 39 users are following.

mary96913
mary96913

If you've recovered from this please respond here. My son is very ill. We need recovery stories.

3 likes, 70 replies

70 Replies

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  • heather00435
    heather00435 mary96913

    Posted

    And just when I thought I was doing so much better, the muscle aches and pains are creeping back in. They had gone away completely back in May, and now I’m feeling aches in my elbows and legs. My husband thinks it’s stress as we just had a couple of busy weeks. Has this happened to others before you recovered - the symptoms come and go? It’s been about 8 months since this all started, and I’m scared it’s going to get worse. Trying to think positively, but I’m just frustrated.
    • rich76489
      rich76489 heather00435

      Posted

      Hey Heather, i can only go by my experience but stress and worried thoughts made my symptoms all the worse for sure. I had a couple of setbacks on my road to recovery, and the same negative thought patterns would return. However, i was able to nip these in the bud so to speak, by fully allowing and not resisting them. I know its very hard and incredibly frustrating, but i had to stop 'trying' to be positive and just allow freely the annoying frustrations. Then i could focus on wellness...

      Oh, and my big trigger was alcohol even in small amounts. Whatever your stress triggers are (if known), 100% remove them and spend as much time as possible outdoors in lush vegetation.  

      Best wishes for a speedy return to how you were previously smile

    • dave37323
      dave37323 heather00435

      Posted

      Heather - I first got sick in Aug 2016.  After slowly getting a little better over the course of the next 6 months, in Feb 2017 I went from bad to worse.  Not sure why.  Muscle pain/burning/fatigue was so bad I was barely able to ambulate at all.  

      By May 2017 I began taking Cymbalta 60 mg/day and I've been on a steady course upwards ever since.  I'd say I'm at 75% (my legs, that is).  Right leg is still weak...and I've accepted that I'll never sprint/run ever again...but life is nearly back to normal...thanks to a lot of acceptance about things I won't do again (basketball, softball, running, jumping, etc.).

      But I'm almost 47, so those things were eventually going to end sometime soon anyway....

    • heather00435
      heather00435 rich76489

      Posted

      Thank you for the encouragement Rich. Will get some fresh air today and try to let go of all the worrying and frustration.
    • heather00435
      heather00435 dave37323

      Posted

      Thanks for sharing more of your story with me Dave.  This is witch an odd illness with symptoms coming and going all the time. I’m just really going to try and take it easy over these next few weeks, get as much fresh air as I can, and just accept where I am right now. I’m doing so much better than I was in early 2018, and for that I am grateful. 
    • rich76489
      rich76489 heather00435

      Posted

      No worries. Dave is right on point with the acceptance mentality. It is amazing what can happen when our own internal suffering ends! I really recommend reading 'The Power of Now' especially when enjoying the fresh outdoors :D 

  • isha_33518
    isha_33518 mary96913

    Posted

    Hi all,

    Its been 2 months since I last posted so i thought id give an update.

    I'm doing really well and almost back to normal :D (I originally fell ill in late dec early january)! I've been on holiday twice in the last 2 months (to Thailand and Spain) and have a third trip coming up in 2 weeks! Just before the trip i was very stressed about how id cope on a flight but i was fine smile I made sure to get plenty of rest before and after my trips. I managed to do watersports, go exploring etc I did feel tired occasionally out there but i believe it was because of how incredibly hot and humid it was there! I made sure to get plenty of sleep out there too.

    I think going away on holidays made a huge difference to my health as it uplifts your spirits. I certainly feel happier and more relaxed!

    I also finally had my appointment at the chronic fatigue clinic - the doctor i saw was really great and understanding. Although my cfs originated from a viral infection, i was under a lot of personal stress in my personal life this year and he recognised that this was hindering my health. Some advice he gave was fairly obvious - such as exercise to release all the built up toxins inside my body. He referred me to a physiotherapist, and CBT specialist - although i do feel better i've agreed to see them out of curiosity. I think the act of even seeing a specialist doctor helps, as it gives you a sense of relief and being able to talk about your health and issues really helps.

    At the moment im taking:

    blackseed oil - a teaspoon a day

    olive leaf extract 3 capsules a day - as a preventative as there's sick people around me lol! This stuff is amazing!

    I dont need acupuncture anymore, however i do go for cupping therapy once a month. 

    I strongly recommend cupping therapy - it increases blood flow, eases muscle aches, and releases toxins. You feel an almost immediate shift in energy levels.

    I hope that this gives hope to those reading, you can recover and you will! Considering I am holding down a full time job i am really happy with how far i have come.

    Lastly - mindset is so important, staying positive isnt easy but its important. I didn't give this much importance before but ive really realised this the last few months

    Good luck to all and I wish everyone reading this a speedy recovery!

    Isha

    • heather00435
      heather00435 isha_33518

      Posted

      Isha,

      So happy to hear you’re doing well. This was very encouraging for me to read. Thanks for sharing. Think I’m going to look into getting cupped. 

      Heather

    • eleanor12697
      eleanor12697 heather00435

      Posted

      Isha,

      I agree a lot with things that you are saying, because I was so unwell for nearly a year, I was scared to push the boundaries and as a consequence I feel like I actually prolonged feeling worse. When I felt able, becoming active, travelling and going back to work and having a daily routine really helped. Currently I am 5 and a half months symptom free, although lately I have had a couple of bouts of tiredness. Not quite tipping into fatigue but just making my body aware I might need to slow down. Lying in bed all day, resting my mind and my body was so important but once I began feeling better it’s important to try and bring a sense of normality back to your life, while hopefully staying in your energy envelope.

      I also couldn’t recommend the Fatigue Clinic enough, being around people who truly understood without skepticism or feeling you had to validate yourself was a rewarding experience. 

      I also tried cupping, and homeopathy, not sure how effective either of them were but I would consider myself now in recovery - possible links .

      Positivity is so important, as is not being around any emotionally draining people or situations. 

      My therapist also told me that anything that causes an adrenaline rush has to be monitored heavily (in my case this was watching sport or films late at night when I couldn’t sleep due to fatigue) 

      It does get better! Keep going and stay positive. (Support groups are also a useful tool) 

    • elaine62759
      elaine62759 isha_33518

      Posted

      Thanks for sharing a positive outcome. I've never thought to try cupping therapy but might look into it. Anything is worth a try!!!

    • isha_33518
      isha_33518 heather00435

      Posted

      Thanks Heather, absolutely please do try cupping if your symptoms include tiredness and muscle aches especially smile
    • isha_33518
      isha_33518 eleanor12697

      Posted

      Hi Eleanor, 

      Definitely! I think the fact that I was still at work helped my body get used to having a daily pattern, ofcourse it helped that I was moving my body every day. I think there is a thing as too much rest ha! I was active enough for it to be good for my body but I wasn't going crazy and pushing my body too much either. I have a nice little night time routine where i get into bed fairly early (10ish) put some relaxing music, some candles and read a nice book before falling asleep. In a month or so I will change my routine slightly and start upping the exercise and go jogging and try yoga after having discussed this with my doc. 

      Its so great to hear you are symptom free now, glad to hear it! I agree about the Fatigue Clinic, how nice is it that there are people there who listen and understand what you went through and dont dismiss it as "oh you're just tired get some sleep!" :D

      I tried acupuncture and cupping together at first, and i'll be honest, while I was getting better I didn't attribute it to these two, i just assumed I was getting better due to rest. But then i realised these really did help, specifically the cupping. Everybody's different and may not react the same way, I was skeptical too smile but i am so glad it helped me

      I agree with not being around emotionally draining people, I avoid these type of people now and put myself first. It only stresses you and sets you back. Im someone who is a bit of a social media addict lol, I cut back on this a lot as I realised it wasn't healthy for me either.

      Id recommend everyone surround yourselves with good company, laugh, watch funny movies, travel, read books, gardening, be out in the open air, surround yourself in beautiful scenery, find hobbies or goals to work towards - these will be a great distraction, whatever helps. Being unwell is your body telling you you need to focus on your physical and mental well-being and they are both connected!

    • isha_33518
      isha_33518 elaine62759

      Posted

      Absolutely Elaine, anything and everything is worth a try! I hope it works for you, if the cupping is done well you may notice a noticeable change from the first or second session!
  • suhas91438
    suhas91438 mary96913

    Posted

    Hi Marry,

    how is your Son now ? , hopefully he is doing better

    I am also suffering from post viral infection since 7 months after severe dengue infection, need suggestions from you.

  • helen91335
    helen91335 mary96913

    Posted

    Hi Mary I was sick with PVFS for 9 months it all started with a virus I didn't completely get over because I was running a business alone while my husband went OS and with two small kids and a death in the family I just pushed myself too far which then progressed to PVFS. I was experiencing harrowing anxiety for the first time in my life I thought I was dying then came the black dog of depression and with that extreme weight loss I've never been able to lose weight easily my anxiety was so bad that I would lose like 5kg in a week not good at all no doctor could help until finally after 9 exhaustive months I found a Holistic doctor who saved my life he ran tests on me that no other doctor knew about, he then prescribed plenty of best rest and a whole lot of natural remedies it cost me about $400 and I was sure I was just throwing my money away, but I kid you not within a week I was about 65% better and the following weeks progressed even more I could not believe it. He said it was my bodies way of telling me it wanted rest so as to do its job and recover properly. You can fully recover from PVFS and this was about 8yrs ago and I've never been sick since that's no lie. Has you soon be diagnosed with PVFS?

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