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CFS symptoms

Posted , 10 users are following.

david59662
david59662

Hi,

I just want to know from people who unfortunatelyhave had CFS/ME for a number of years. Have you had any MS like symptoms during this time, like minor umbness of hands and feet ? Have you been tested for MS and what happened ? There appears to be similarites but they are distinctly different ?  I'm 6 months into my PVF now CFS, just feel zombified on a daily basis, some days worse than others. Like i'm 34 and it feels as if my heart is barely beating. Thought i felt my right foot feel numb this morning. I am awaiting to see a neurologist, upto12 weeks. The NHS is great.

Thanks for reading.

0 likes, 88 replies

88 Replies

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  • jacquie14742
    jacquie14742 david59662

    Posted

    David - i wuld be interested to know how they revovered? do you knnow...i know its different for everyone and its like unlocking a puzzle, bit by bit, but i also know a couple of people that recovered...I am 18 months in now and terrified the onger I have it the worse I will get...however I do have some great days where i am able to do so much - mine is tied into my sleep....i think i have some terrible sleep disorder which contributes to me endless fatigue etc 
    • david59662
      david59662 jacquie14742

      Posted

      Hey Jacquie, morning. I plan on finding out My mobility is so reduced and the mental adjustment for me to do things sometimes takes days. Like planning a simple journey. I know with the older lady who went swimming, was very fit, did tons of hillwalking, amazing figure, she was in her 50's, she says homeopathty helped her, although i have to say she feels she's not back to 100% more like 80% but she can live normally again. As a runner myself i am extra curious as to how the running club coach recovered. My days i can't say fluctuate that much to be honest, i feel i pretty much stay the same everyday. I know lately i have been sleeping much better, i used to wake every 2 hours or so, now i can do 5 hours without waking. So maybe this is the TCM. Still have ALOT of progress to make. Jacquie it seems alot of people use amiltripline with ME ESPECIALLY if they cannot sleep. It seems to help massively in this instance. Stay in touch. I'm so greatful for the peoplei have met on this forum. We are all inspiring each other i am sure. What i said earlier about myself, my body feels like a car with a dead battery, that all it needs is a jumpstart and it will be as good as new.
    • Gregh286
      Gregh286 jacquie14742

      Posted

      Does anyone get any benefit from sleep?

      I wake up feeling dead and gradually (marginally) improve during the day.

      Starting to think sleeping time maybe a large part of the issue.

    • david59662
      david59662 Gregh286

      Posted

      Hey greg, i know i have got better sleeping since i started the TCM. Instead of waking every 2 hours or less i can do usually do 5 hours straight, sometimes more. Definite improvement in that area for me. Could be the TCM or it could just be my body doing it.
    • jackie00198
      jackie00198 jacquie14742

      Posted

      Jacquie: One of the problems resulting from CFS/ME is, often, bad sleep. So your "sleep disorder" is most likely caused by yourCFS/ME. I, too, am having sleep problems.
  • jacquie14742
    jacquie14742 david59662

    Posted

    No i think regardless of how much sleep we do actually get we still feel rough, but for me when i have about 2 hours the whole night (like last night) i start to panic...I have got myself into such a rut with sleep, that i can no longer fall asleep naturally...i feel broken in that area...i wish something would kick in and i would start getting 5 hours again like i did last year, feel so much better without the sleep dep on top sad
  • jacquie14742
    jacquie14742 david59662

    Posted

    Im on melatonin, hops, valerian, lemon balm, 5htp  herbal sleep tabs and sometimes i still have to take a nytol or sleep tab on top of this and then I STILL only get my usually 3 hours ...it so frustrating sad
    • david59662
      david59662 jacquie14742

      Posted

      I was about to try melatonin till i had a breakthrough in my sleeping about 4 weeks ago. I hope this gets better. With ME i have to remind myself i am in a marathon not a sprint.
    • Gregh286
      Gregh286 jacquie14742

      Posted

       Hi jacquie.

      Do you feel tired or are you fatigued?

      Has low sleep always been an issue for you?

      Do you ever get refreshing sleep.

    • jackie00198
      jackie00198 jacquie14742

      Posted

      Jacquie: Do you practice good sleep hygiene? In other words, if you're lying awake for a certain amount of time, you're supposed to get up and do something, like read, for awhile. Then go back to bed. But the sleep hygiene thing is hard for people with CFS. That is, bed is only for sleep, get up and go to bed at same time, etc.
  • jacquie14742
    jacquie14742 david59662

    Posted

    Hi Greg, Constantly feel tired and fatigued...mornings are usually ok and i get through but by avo im usually done for...i have two little kids to run around after so they keep me distracted and busy...wake up feeling exhausted usually no matter how much sleep I have had, but when I have had very little I feel very unusual, almost wired and beyond exhaustion...i hate that feeling most. This kicks in my anxiety, whereas when I have had 5 hours I feel i can cope 
  • jacquie14742
    jacquie14742 david59662

    Posted

    Hi Jackie

    I do everything on the sleep hygiene list except the get up thing and do something else, i just lay there with my eyes closed as i feel at least its some kind of rest...i dont have caffeine at all, no tv or phone before bed, no food before bed, i have ear plugs, dark room, eye mask, everything...what is your sleep pattern like? I should make myself get up when im laying there but i feel like a zombie 

    • jackie00198
      jackie00198 jacquie14742

      Posted

      Jacquie: Right now, my sleep pattern is sometimes I sleep well for 3 or 4 nights, then have a night of many hours not sleeping, then around 3 or so hours of sleep (sometimes less). Sometimes I also get into a pattern of good sleep only every other night. I try not to focus on it--no mean trick. I have a book (Kindle) at the ready in another room. Rather than lying in bed not sleeping for hours, I get up and read. Sometimes, reading promotes sleep; sometimes, not. For me right now, I think it's anxiety that's interfering with sleep. I have racing thoughts as I'm lying in bed. Not necessarily worry thoughts, just racing thoughts. I can't seem to turn my mind off. I've tried many meds and supplements, including Ativan, which was horrific to get off of. It actually increased my anxiety over the long term. I've also tried cammomile tea, Valerian root, melatonin, hops, and a supplement that had many herbs that promoted sleep in one tablet. I tried biofeedback, deep breathing, and meditation (which I do every day--and it generally helps me overall, except with sleep!).
    • david59662
      david59662 jacquie14742

      Posted

      Feeling like a zombie, i can totally vouch for that feeling. This is my experience morning, noon and night ! I'm sick of it !
  • arron1981
    arron1981 david59662

    Posted

    Hi, 34 Yo male, fairly active and stressful lifestyle before, with resting heart rate of 45-50bpm.

    I had an IBS type thing for years, gradually getting worse until in July 2015 doctors ordered a colonoscopy to check for anything serious. Gave myself water poisoning when flushing out the gut in prep for the colonoscopy and 4 days later became bed ridden for 2-3 weeks. Doctors did a full blood count, an MRI of the heart due to ectopic beats and everything came back normal. Did not get any sleep for 4 weeks straight so doctor prescribed a low dose of Mirtazapine which gradually bought sleep back into my life.

    From the very first day I've had a dull pain in the back of my head with tinnitus and on one occasion there was a bout of ever loudening tinnitus followed by a popping sensation in the middle of my brain and then a slight warmth eminating from that spot. I find that wearing glasses helps with the majority of the head pain, but my optician says my eyes have got slightly better if anything. He also says my pupils are slow to react but that their reactions are normal.

    Anyway, things seem to be very slowly getting better. I'm not pushing myself too hard, but managed to walk 3km in an hour yesterday....

    My doctor has just recommended eating well and plenty of rest because western doctors do not understand fatigue at all, they just know that most people get better with time.

    This has never sat very well with me though because there has to be a reason why I am always on a seemingly empty tank of gas compared to where things were before the colonoscopy....

    Like most I've been reading how to improve energy levels and how to reduce the ectopic beats etc, so I now take Q10 every day for energy, magnesium to reduce the ectopic beats, and vitamin C vitamin D and Zinc to help have a stronger immune system.

    The magnesium definitely worked, the rest I'm not sure whether they're doing anything or not but I don't think they're doing any harm so am continuing to take them :p

    I try to eat healthily now, so no added sugar, no alcohol, never smoked, plenty of fresh fruit and veg and porridge for breakfast. Again I don't know if this is helping with the fatigue but it does help with the IBS, which means I don't have tired days due to the IBS.

    I always find that the day after having a roast chicken dinner my energy levels are better... every single time chicken does the trick, (protein?).

    I also have soya yoghurt to help with adding some stomach flora back into the gut smile

    I'm having a brain MRI soon to make sure nothing nasty is actually going on up there but if everything is OK then I think it's just a matter of time before things get better, and until they do I believe it helps just to live each day without expectation and just do what I can do without using too much energy. Things will get better, some of that is physical and some is mental, so a bit of good for both helps smile

    On days when I feel really tired I've found Metatone provides a gentle energy boost.

    It makes sense to me that energy in the body is created by the Mitochondria which are present in every cell. Mitochondria apparently get an energy boost from Q10, but to make the energy they also need phosphate.... energy in the human body comes from ATP which is created in the Mitochondria.

    I think it makes sense that during a bad viral infection etc sometimes the mitochondria get damaged and it simply takes 5ime to get better because it takes time for the body to grow new cells with healthy Mitochondria in them.... Doctors haven't got a clue but to me this makes sense.... so Q10 and Metatone do seem to help when used in combination. It would be interesting to know whether Q10 and phosphate are present in higher numbers in the medicines provided by Chinese doctors..... Mitochondria are definitely present in higher numbers in energy intensive organs like the heart and liver etc, so it's interesting to read that somebody on here has been given deers liver to eat.... I wish you all well with your recovery and hope I've atleast said something of use somewhere.

    I may try TCM but if I do I will be looking to see what is in the stuff because it may be a lot cheaper to buy supplements with those things in, (for vitamin C you can have a vitamin C tablet or eat lots of oranges. I think Chinese medicine would adopt the eating oranges method).

    Take care all!

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