Felt so weird for 9 weeks CFS??

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I honestly don't know if I have CFS or what. But nothing like this has ever happened to me in my life.

Before 27 March 2018 I was a fit healthy person for my age (64) I went for long walks, loved my food, chopped firewood, optimistic attitude etc.

27 March, was using the log splitter when I suddenly didn't feel well with:

Weird malaise,

slight nausea

slight headache over right eye

weak & trembly

heart palpitations

wanting to burst into tears!

I was OK the next day but the following day it came back.

After 3 weeks of this I was sure it had been flu. But all the tme I slept OK and had no fever. Took Echinacea and raw garlic which often made me feel a little better. (That combination even cured me of an adder bite once, and a rose thorn infection!)

But every day the symptoms came back.

I became exercise intolerant, alcohol intolerant, completely caffeine intolerant, weakness in my legs, wobbly feeling, nauseous sometimes, inner trembly feeling. (no history of depression or anxiety. And no history of headaches either)

At first it felt like flu, but there was never a fever, never a sore throat or any respiratory symptoms. But felt like the day you're really coming down with flu for sure, every single day. I guess that's called "malaise". Had to seriously rest. Couldn't do anything much.

So, the 3rd week with this same thing every day, I went to the doctor. He ran urine tests (4 altogether at different times of day), a complete blood analysis and said he'd check for everything incl. thyroid, and sign of any systemic infection, anaemia, vitamin deficiency....etc as well as all the usual things checked for organ function or any other imbalances.

He listened to my heart and took blood pressure. Both were normal.

The urine test was normal, & blood results came back all normal too.

He said he thought it had to be a virus, and recommended all the usual things one does for flu. They didn't help one bit.

By the 4th week I got GI symptoms. Nothing horrendous, but a very "uneasy belly". Couldn't eat properly for a few days, but managed something. (no history of tummy troubles either!)

That went.

5th week....Meanwhile the weary fatigue wouldn't go away at all, and neither would that slight nagging headache. Not a bad pain but enough to drag me down.

Bouts of nausea at random times -usually passed in an hour or so.

Still no fever -at any time of day. Kept feeling so very cold. Horribly cold. Sometimes would get hot flushes but mostly cold. Took temperature during these bouts but never up or dreadfully low either. Worst was 36.0 degrees.

Now it's the 9th week, and I still am getting these feelings but the main one is this debilitating fatigue -so unlike me. And weakness and some internal shakiness. I could hardly stand up in a queue when in a shop today. I had to lean on the counter. It felt like my legs were horribly tired.

Okay I know you can't be diagnosed with post viral fatigue until -is it 4 months? -have passed. So I'm on the 2nd month now, an have tried everything including Astragalus tea for the immune system. Nothing is making a blind bit of difference. Plus I do still keep bursting into tears.

This all is not like my normal self which I have been like or years and years. Seems like my life the way I knew it is over. Can't even get my firewood in for next winter and can't go for much of a walk.

Does it sound like Post viral syndrome? Can anyone advise?

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  • Posted

    I'm so sorry you're having these symptoms. I know common wisdom is you have to wait 6 months for a diagnosis of ME/CFS. But I was diagnosed within about 3 months. And I know I could've been diagnosed earlier if I'd gotten to the right specialist. Unfortunately, your symptoms do sound very much like ME/CFS. Whatever you have, though, it's such early days, that if you rest a lot, and above all, don't push yourself--you may have an excellent chance of getting better. Really, I can't emphasize this enough. No matter what you have, this advice can't hurt. Please feel free to ask any questions, etc. Best of luck to you.

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    • Posted

      Jackie, thank you so much for your support and kindness, and especially for replying so quickly. I guess I will have to continue resting. I managed a little walk today, not far, just under a mile round the orchard. I hate to be stuck indoors in such lovely weather. But could feel I was tired on way back so that's it now for today. If I do one positive thing each day without pushing it I guess that's an achievement.

      I will try to get back to see the doc if this goes on another month.

      I wish you well, and hope you are managing to cope. Thank you.

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  • Posted

    It’s really hard to tell so soon. The one hallmark characteristic of cfs or post viral(which is what my doctor called it) is crash (fatigue) at some point after using unusual amounts of energy.  For some it’s running, others it’s walking and others it’s standing up. I remember being where you are. Just so confused. At this point I would prey, rule out everything else and gets lots of rest...even when you think you’re good. Best of luck!
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  • Posted

    Not sure where you're located but here in the US I needed to wait 6 months before an official diagnosis of CFS. Before 6 months, they diagnosed me with depression and tried to give me anti-depressants but in my case (and probably in your case too)  depression wasn't the core issue.

    If you've had red flags that you've been pushing your body for several years but didn't have awareness of it, your body might have gotten to a "breaking point" and is expressing a need for you to really connect inwardly. See if you can find some kind of hint of what was happening right before you got sick? Sometimes there is some clue or set of clues involved which could help you understand. Also, you may need to redefine your abilities for a while and not compare. Just be conscious of where you are NOW as best as you can without comparing to what you used to do. For a while, you will probably need to experiment.  Can I do a half mile walk without crashing the next day? Do I need to be sure I need to take a recovery day after chopping wood? etc.

    For me meditation is crucial. Staying away from sugar, caffeine, medications, anything stimulating... is crucial. The sudden temperature extremes come from pushing my body too much. I might not like limiting myself, but the more I honor my body the better I can function. Also, I think the more you can RELAX with what is, the more you'll be able to have awareness of what you need to do to get some recovery. Be patient. Be gentle with yourself. Maybe start a journal of small achievements. I'm 61 and walking a mile would be like a freaking miracle for me!!! LOL

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    • Posted

      Thank you Joe and Dianna.

      I'm in the UK. And yes Dianna, you may have a point there about my oushing my body too hard for a long time. I think I did. My husband died some years back now, and I am not rich so had to do twice as much work to get by. I live in a rural area on a shoestring financially (only my pension coming in) plus I have a stoical nature. I was always physically tough so must think I still am! LOL Trying to live like a 30 year old. Hard work, cutting down trees. stacking logs, painting fences, walking in foot deep snow to feed a neighbour's cat etc.

      Loved walking 4 miles in the ice storm. Got my eyelashes frozen with crystals. It made me laugh. Roses in my cheeks. good appetite....but it wasn't long after that this illness came....the first day we got spring-like weather just after the thaw. My body hates thaws anyway. It always did.

      Thought it was just flu at first from being in a queue at a shop where this woman was coughing all the time. I usually like to stay away from shops in flu season, & get my orders online, but went out just because I wanted oranges! Could have lived without them for sure.

      But never had a flu like this that was relentless and never stopped, and I never woke up one morning and felt better.

      Maybe you're right. My body was at breaking point and I didn't even know..

      Thought I was dying this last 9 weeks and got all my papers in order -when I could concentrate that is. Still wonder if I might be.

      I was never one to lie around on the floor in the day and listen to Mozart but then again now I have to. Maybe it's not such a bad thing. I always work too hard. Now I can't. Well at least it is May and easy life right now in some ways.

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    • Posted

      That makes perfect sense. I'm a single mom too. The combination of trying to make ends meet financially, dealing with the grief of profound loss, and battling a cold or flu is enough to make anyone experience what you're experiencing. It takes time but things can slowly improve. It's a journey.

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  • Posted

    Hi Sylvia. That's a lot of symptoms to have to deal with so quickly and being on this forum for a while now, you see the dramatic and diverse symptoms that people with M.E experience, to the extent where I personally question the whole umbrella and diagnosis of M.E. I got diagnosed with it officially, but after 4/5 years I no longer have M.E and I have found the same with a lot of people, there could be so many reasons your body is reacting in this way. So I would just say, keep monitoring, keep searching and carry out different tests, hormones etc, do a food diary to see if there are any patterns, particularly with gluten, dairy etc you can develop allergies at any point and get the symptoms you are experiencing out of the blue, thats what happened to me anyway.  I hope you find the answer, you sound very pro active in what you are doing. 

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    • Posted

      Hi Silvia,Ive read on other sites that cfs can be triggered from overwork and gym junkies get it too , i too miss the long walks and working at hands on ,, it is also to my knowledge a type of spiritual awakening, to get to know the self better , and often we need to slow down for a bit for that to happen , do not fear , enjoy your Mozart and things will slowly get better , i hope you can find some help to get your wood in for winter! there will be someone eager im sure ,, just reach out! <3 Guava  

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  • Posted

    Thank you for more help. You have all been such sweeties.

    I am still drinking the Astragalus tea. I got the measures wrong at first. I didn't use enough. Now I'm trying the proper dose. I woke up this morning feeling a lot better! I hardly dare say it and we'll see what happens yet. Over 9 weeks I am used to feeling slightly better for 24 hours now and again, then going back down again, but I'm thinking this time there seems to be a slight difference....

    I really feel for you all with the CFS thing. As yet I am not 100% sure that's what I have -or just some weird lingering virus like nothing I ever had before, that nothing seemed to change or influence.

    But if in a few days I can clearly tell the Astragalus has helped enough to impress me, then it might help others too with post-viral syndrome?

    I will post back when I've done some more experimentation!

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    • Posted

      Okay, I thought I would come back with news. And wait a few days because with this thing I am used to it feeling a touch better for a day or so, then coming back at me again. So this time it's five days and there is definitely some improvement.

      I have to say I think it is something to do with the Astragalus tea. That is the only different thing I have been doing.

      Whether that herb would help others or not....I can't say. Everyone is different, and I am not even 100% sure I had cfs or not. It could have just been a horrid lingering virus in my case.

      But if anyone wants to try it I'd say it's worth a shot.

      I am still not fighting fit, but symptoms definitely are fading out and the exhaustion is nothing like it was. I even managed to get some kindling in ready for winter the last 3 days, and didn't "crash" from doing it. And I didn't feel unwell. But am still being careful and respectful of my body and what it needs. NOT pushing it at all, just doing what I feel like doing, then resting.

      Astragalus is a very mild but very healing herb for immune support. I don't know if it should be taken if someone has auto-immune disease. Best to get advice about that. Also I don't know how well it goes if other meds are being taken. Advice again needed.

      But this is how I make the tea:

      I bought Astragalus root pieces from an herbal shop where they sell organic. It wasn't cheap, but some places do it cheaper. That was just my nearest place.

      Then I use a teaspoonful. put it in a pan (not aluminium) with a teacup and a half of cold water, bring to the boil, then simmer for 10-15 minutes, strain and drink. I say a teacup and a half because by the time it has done cooking it will have reduced  to less than a cup full. That's okay.

      I take it twice a day but it can be drunk 3 times a day.

      It tastes very mild, not much taste, but sweet-ish and pleasant.

      It is, so I hear, used frequently in Chinese medicine.

      But I am sure it is helping me. I am on my 10th week now.

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  • Posted

    Okay....well that didn't work. Not all the way anyway. I crashed today, not completely down. I could still do things but got the warning this morning when my one cup of coffee made me feel unwell-ish, and I'd gone through a few days when I could enjoy it again. Can't even have that any more obviously, and I've had a morning coffee every day for 40 more years. Then walked to a neighbour's only a half mile away and felt like I was made of lead on the way back. Half a small glass of red wine made me feel awful before dinner. Like I had the flu-ey feeling back.

    I find it hard to lay about all day, that is my problem. .you all warned me about doing things, told me to rest. I just can't see an end to the "resting" right now. If someone told me it was for a week, I could handle it. Resting and staring at the ceiling is just not my thing sad

    Cruel thing! It makes you feel you're getting better for a few days then comes back. It's probably more a case of management than cure....

    Still hoping to learn some sense. But will keep trying things, see if they help.

     

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    • Posted

      I think you hit the nail on the head when you said it's probably more of a case of management than cure. And each person comes up with their own personal ways of managing it that work for them. Maybe management will result in some percentage of "cure" but I think we end up being different people than we were before cfs.

      My "resting" consists of at least 2 meditation periods that last about 30 minutes. Sometimes less if I'm feeling pretty ok and sometimes more if I feel like something the cat dragged in. I wish I could nap but my body doesn't seem to be able to sleep during the day no matter how tired I am. And lying there staring at the ceiling is no help cuz my mind just goes around and around and around. So, meditation feels like I'm resting my mind and my body. Most of the time it's a guided meditation so I can just let go and have someone else do the work while I relax and imagine my body being an empty bucket that is refilling with energy. There are some great guided meditations on youtube. And it's all free.

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    • Posted

      Yes. I, too, found meditation a great help. In addition to YouTube, there's free meditation apps on the iPhone. I use Insight Timer and Calm, but there's many others. I have that same problem with napping, and also sleeping, because my mind doesn't stop. Like you say, I think management of ME/CFS is key. We can all hope for a cure, but in the meantime, management is something we can all do now. I use a heart monitor that I wear on my wrist to track my heart rate. This helps enormously with not overdoing it.

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    • Posted

      YES! I use a heart monitor too! It does help, doesn't it? I'm interested in knowing how exactly you use it. I'm sort of a beginner.... been using it for about 2 months or so. Do you keep within your anaerobic threshold? How long have you been using it?

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    • Posted

      Hi Sylvia- did your dr check you for glandular fever and cyclomegalvirus? I am currently recovering from both of these (it's been ten months since I contracted them and am only just now getting on my feet!) and all your symptoms are what I also experienced in the first three months.

      Wishing you a speedy recovery! 

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