Could this be Cfs ?

Posted , 6 users are following.

Hi everyone, hopefully i might gain some insight here. I'm completely astonished by whats happening to me.

5 months ago, this January, I was at work and experienced a migraine with aura for 30 min, ( bright colored zig zags on both eyes slowly fading to the sides).

I never had a migraine before and never had one similar since that episode.

The next day, I started to experience the same symptoms as when I had a concussion 15 years ago.

In 3 days, it's like a veil came onto me progressively, very strong noise intolerance (it actually hurts), light intolerance, constant light headedness, balance issues and persistant fatigue.

I have very Light sleep, insomnia, unrefreshing sleep, and the brain fog hits every morning as if i was intoxicated, that for me is thé worst.

I have a mental processing slowdown, forgetting words and slurred speech, and constant attention deficit, even simple tasks or conversations are very exhausting mentally.

I have trouble focusing between far and close objects, also experiencing a kind of constant mild double vision as if my eyes aren't "synced", same for tracking and reading text.

Rapid Movement on TV or screen makes me dizzy as well as subtitles.

Staying in bed lessens the symptoms, as well as nighttime ( for some reason the brain fog is less present in the evening /night).

For a few days, I thought these symptoms were because of the Migraine since I never had one, but a month later nothing had changed so I decided to go see a neurologist.

I did psycho motor and neuropsy evaluations, both were below the norm for my age, but EEG and MRI didn't show anything.

The neurologist then concluded it could be due to stress or anxiety.

I had to stop working and playing sport as it's impossible for me in this state to perform any brain demanding activity.

It's now 4 months later, and all symptoms are still there, I'm resting all day long, I'm not anxious, but feel frustrated because it's like my life has been taken from me!

I dont have muscle or joint pain, as for PEM, its hard to explain but for sure walking Just one mile Will drain my brain to the point of fainting and exacerbate the fog/tunnel vision.

I feel weak and need to lay often(in bed 20h/day), but i dont sleep i just rest, by that i mean i dont fit the sleeping profile i often read about Me ( People sleeping all Day long).

I Wonder what you think about my case, my primary symptom being that awful brain fog, and constant lack of brain/cerebral stamina.

Thank you all for your help,

Mike

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8 Replies

  • Posted

    Hi Mike,

    All sounds very similar to my symptoms although I don't require being in bed so much as long, as I am resting elsewhere. I have bad nerve pain in forearms and calves as well as joint and muscle pain and weakness along with the hypersensitivity and the rest of what you describe. I was fit and healthy until over three years ago following a tetanus shot. For me, too, the brain fog is the worst. What helps me is a strict Keto diet and acupuncture treatments. Often my legs were so shaky I could barely walk and acupuncture helped a lot. Recently, I've tried craniosacral therapy, and to my surprise, by the second session I have less nerve pain in my arms. The back of my head and neck and shoulders are really jammed, so it makes sense to me. Another thing that was discovered is the HPV6 virus which can wreak havoc. Such a frustrating mystery, this condition. I found comfort in this forum and can only wish you well.

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    • Posted

      Hey Kasandra – I have pretty much all the same symptoms as you! Two years ago I fell extremely ill with fainting and headaches and nausea and just so sick and fatigued. They initially diagnosed me with mono but once it didn’t go away I saw multiple specialists and finally was diagnosed with Lyme disease. But I too had really high anti-bodies to HHV-6. The treatment I’m on for Lyme is helping and one of the supplements artemisinin helps Lyme and HHV-6. I don’t know if you’ve looked into it but thought I would share that for what it’s worth. I also take 1200 mg of monolauren daily and that brought my HHV-6 numbers way down to almost the normal range.

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    • Posted

      Thanks, Lisa. Glad you caught that I meant HHV-6. I did take monolauren for a few months with no noticeable difference but I don't remember the dosage. Can't hurt for me to give it another go at 1200 mg daily. I haven't tried artemisinin. Thank you for the recommendation. Much appreciated.

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    • Posted

      Thank you Kassandra, i Will give Keto diet a shot, i'm also about to start trying modafinil against the brain fog , hope it makes a difference.

      I will report back if it does.

      Again thank you for the support, you be well too !!

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    • Posted

      Good luck. Would be nice to get balance and gait under control too. When I do feel well enough to try and go for a walk, I use walking poles. Still, I look and feel like I had been at sea for months--or drunk!

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  • Posted

    Hi foggymike,

    Have you had blood tests too? I get the migraine with aura and the double vision. Do/did you get dizziness but no other symptoms of virus, around or before this? like vertigo?

    Before cfs/me I started having these migraines with aura and later the double vision. I was sent for MRI and catscan with contrast but freaked out and didn't go through with the contrast. (I have had contrast twice before) this was to check if there was any issue as I was dizzy and the only thing that came up was low b12, nothing on mri. I had had laberynthtitis (virus that attacks the inner ear) in the past hence me asking about the dizzy and no other virus symptoms.

    My concern would be the sudden onset for you? I too have been pointed towards issues 'being' anxiety rather than them causing anxiety. I like you know that not to be the case but when you feel like you are on a rollercoaster when you are stood still, who wouldn't feel anxious? your body gets filled with adrenaline and cortisol ready for the fight/flight or freeze response.

    is there any chance of a mould infestation where you live? I ask as this can have similar reactions. If resting for such significant amounts with no sleep, I would be getting myself back to the GP and asking for tests to find the cause? Look on line at POTS too.

    Cfs/me comes from many different sources but most often has a trigger.

    Beverley

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    • Posted

      Hi Beverley, thank you so much for your input !

      I had a few blood tests already, tested for all major pathogens, some immune factors, also nutrition.

      The dizziness per say is quite mild, and more linked to the fog/vision issue.

      Since my brain can't "process" fast enough a lot of stimuli, areas like balance and gait are affected, i asked to check for inner ear disease, but they didn't find anything.

      And yes it's so frustrating to hear the doctor tell g you Anxiety is the cause, while you clearly explain it's an obvious byproduct of the disease!

      No mold infection AFAIK, i moved places 3 times since it started, so I don't think it's the culprit, but I sure as hell will keep fighting.

      Again thank you for all the support and insight, I wish you all the best and get well!

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    • Posted

      Hi Mike,

      That is good that they have carried out quite a few tests there but no solice that they come back ok.

      My sleep isn't so good at present and I Am laying down alot. I was taking feroglobin for about a year and I am not symptoms free nor would I say I am better but, brain fog and pain have been less?. I also quite alcohol which I am not sure if it was making things worse. I have had two bouts of drinking since then with only a couple of drinks and the more social time ended up in bed for 3 days ( 2 drinks!) in pain and feeling dreadful.

      I have been wheat and dairy free for 20 odd years and vegetarian 35. I can feel how ill I feel if I try sugar filled items. occasionally I have a soya milk hot chocolate and can feel the energy and concentration draining not long after. I have had cfs/me 7 years and mine is from a car crash.

      You are still at the beginning of whatever it is and you could easily get to symptom free without even knowing what it was?! I know if a couple of people had it 1/2 years and symptom free now. you have moved 3 times in 5 months? wow, I would have found that hard.

      Beverley

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