Chronic Fatigue . Does anyone else get the shakes?

Posted , 11 users are following.

Ive been struggling with this cfs for a few years now.Nothing really helps.

Have some good days.

But when i have it bad, its twice as worse somehow... Having the flu, every time guaranteed to floor me. I also some how always catch colds, bugs and feel it cold almost all the time. My immune system and circulation according to the docs, are fine.Slight Vitamin D and B12 drop but apparently shouldnt make a difference.

Everything is twice the effort, i have a balanced diet, not going to lie, some days i have a cheeky ciggie and maybe once a week a handful of drinks. I treat myself once every so often to a takeaway.

But i walk quiet alot, i eat quiet well and at decent times, i try to get involved with as much physical activities as i can, including work.

I make sure i take time to relax and sit, just do nothing and breathe. Also take several 5 10 min shots on the exercise balls, even if its just a wee stretch or bounce to the beat of a song.

Most of the time i feel drained, get out of breathe easily, feel sick, congested, tired, and cold. I feel my muscles twinch and my heart pumping. My ripcage feels restricted and my bones ache. I feel forgetful, disorientated and hazy. Headaches causing blurryness and a few times blind. Ive felt so congested the only relife is a nose bleed. I struggle with earing, things sound in a bubble, its like they need to be popped. I struggle to talk properly, i stutter or jumble my words. its like having hayfever on top of a flu at the tail end of fever just after a zumba night.

The exhaustion, physical, emotionally, mentally is extremely hard to describe.

One thing that sticks out in all my experiences is these random shakes, they last between 5mins and a hour. Its similar to shivvers, but its not cause ots cold or goosebump shivvers. Your whole body just vibrates, they happen at any time. Mostly when im standing or sitting still. And it doesnt help the achy bones. Moving around doesnt settle them. They just run theyre course.

This is bizarre to me. Im i they only one that gets these shakes?

It doesnt make any sense, bot that any of it really makes much sense to be fair.

I assumed my conditions co insided. But theyre are no patterns or reactors i can see to cause this much.

Can slight vid d and b12 levels really affect all this?

When i diagonised it was just after i started getting stomach problems, like inflammation and dyspepsia. So i have to watch what i eat, its like my stomach is struggling to digest.

I felt this presurred the rest of system to work harder, causing alot of kidney/gallstones, the dyspepsia, over producing acid and heartburn, stomach cramps and general discomfort in stomach and surrounding area.

With that i concluded that my fatique was diet and way of life. So i tried many different ways of eating, exercises, sleeping, working. I changed my living situation, social life, most of my bad habbits and tried several medication, both prescribed and not.

I even tried de-stress techniques like aromatherapy, yoga and pilates. I tried cognitive therapy and positive behaviour methods.

Over the years ive tried alot of things, some take the edge off, some maybe have helped some symptons.

I feel as if i am back to point one and am lost.

I had a back to back flu and fever. 3 weeks later atill recovering.

I love good days, the rare days that you feel yourself. Those days you could do a 8 hour shift crafting and you still have energy to run about mad. When feeling like you got 8 hour sleep, pampered, massaged and painted gold. Feeling so refreshed and painfree.

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  • Posted

    Morning L1990;   I think it is fairly positive to say "yes" to all that you are describing that it is CFS, if not Fibro as well??  As for the Shakes, this is a symptom that we all "have to put up with", and at the most embarrassing times, too.....and yes nothing stops/helps them....(an example for my embarrassement was a few weeks ago, when trying to enter my Pin into an Eftpos machine, and hands shaking so bad, kept hitting the wrong numbers).............am wondering have you ever been to see a Rhuematologist, as this specialist will give you the advice/treatments and contact nos/sites for organizations that will give you a lot of help and advice.......this forum, also, has helped and saved me from going insane at the times when I get too low, and need a "pick me up"............there are so many therapies (which I know you have done/tried, and must say you are doing more than I would be capable of), and have approached all avenues that others will advise you on............perhaps the only suggestion that may be of help to contain the shakes, is a "muscle relaxant"??   I take a small dose of Valium at night, and this helps with the tight/tense muscles, that cause the headaches  (to have to suffer a Nose-bleed to clear your head is a lot to ask of any-one).  I am also wondering  if anyone has tested you for Giant Cell Arterites (when you mention the blindness and pain of a headache/fullness).....this should be checked (and the Rhuematologist is the one to tell you this, too):   Hoping this has helped  a little, and let us know how you go?.........keep in contact with all of us..........Bron
    • Posted

      Muscle relaxants. Thats a shout. I had physio lessons for a trap/short nerve few years ago i did feel like a slept better and had a little more control over my actions.

      Rheumatogy could be a good call too.

      My gran and mother both have forms of artheritis and osteo. At times i have felt as im going the same way.

      I dont know if i have been teated for giant cell arteries, will be finding out pronto tho!.

      I am not allowed valium as i have an addictive nature and again both gran and mother have had addictions to them.

      I thought at times becasue my father had epilepsy that its formed to a slight form causing these migrains as the doc call them. Epilepsy its self was ruled out, along with anemia and pnomenia...

      Thank you. All youve said. Hopefully one could get me somewhere.

      Bloods today so well see the next step after results!!

      Ty Bron x

  • Posted

    ah! so sorry to hear all that you're facing. i just had one of my "chill" episodes this evening and they're not fun. what i've learned is that it takes a whole lot of energy to keep our bodies heated, so when we're running low, our bodies can freak out, with fever-ish like symptoms in fighting to try and stay warm. tonight, with my episode, i had my dad bring me a coat and cover me with a warm blanket, then drank some tea and sat by the fireplace (all the while crying through this), until my body started to stabalize again, and i could breath normally. though still bundled up more than i liked to be, i think the more we can help our bodies stay warm (and do less work/use less energy), the better off we'll be, especially through the winter season.
    • Posted

      They are painful. I dont feel the heat helps at all. It is like a mini fever that you just need to wait and ride out.

      I dread the winter. Its torture time for people with these conditions. Alot of people dont understand. Coming on here really makes you see that tounare defos not alone.

    • Posted

      This is the first time I've read about tremors, "the shakes".  Took a train for Thanksgiving, and was waiting for the redcap's little trolley to take me and my bags down to the exit of this large station. It was very cold on the track platform, and then I started to shake so badly! my husband cried out:: "What is wrong with you". frightened, I think.

      I do get the tremors sometimes, but nothing like Thurs. on the tracks in Los Angelos.

  • Posted

    Hi, yes I do shake, my legs and arms feel weak and shaky, but last night in bed they were twitching really bad, I could feel them. I used to do yoga and even in gentle stretching they would violently shake.

    i am always freezing too, never warm even abroad on holiday at night time I was so cold, I just wondered is this a symptom of cfs

    i too have to be careful with fruit n veg, my stomach feels tight and bloated and I do get sickly feeling during flare up and very thirsty too, not sure if this happens to anyone else.

    • Posted

      Yes. I do too. Thats is why i linked both my conditions. Stomach is the route to the whole system as far as im concerned. Everything that goes on down there starts with the stomach.

      Weird at times, ive fasted for a few days, mostly not out of choice lol, and i felt relief for a while before my systems eats itself. I have a day thats just bliss. Iits a holiday all on its on.

      I often though the cold shakes or chills are like theres a blockage somewhere and the body has somekind of freekout. I thought circulation but been ruled out.

      But as the same as yourself probably most times you fo.to the doctors your problem has calmed down or 'manageble' as they put it.

  • Posted

    Reading your post and symptoms is so like what lve been experiencing for the last year or two and it getting worse. Tiredness, fatigue, sleepy, lve always had pelvic pain lower hips under butt nagging, due to i.c,  but more recent general  pain achiness tracking down from back of head neck down arms hand, legs, l do get cramps spasm in legs and hands and  recently twitching.

    Also get  sore stinging eyes often blurry with it, hearing poor as if jumbled, tinnitus with it and achey some times, but do have allergic rhinitus long standing, allergy probs generally, few skin probs, touch of psoraisis, eczma,  gagging thirst if l dont drink every 30min, breathlessness on moderate exertion, but do have chest probs also, such a list,lol,  not that l,m greedy, but can add bit of gastritus which caused nausea bloating acid reflux for a long time, got scope and  omprazole for that, also changed my diet, small plain fresh food meals, probiotics, got that fairly settled now.though become more of a chocaholic,  Feel cold easily, on waking from a nap,. but flushed at other times, with neck gland bit swollen, l dare hardly lean back on the sofa as can drop off to sleep without hardly being aware till l wake and see the time then feel chilled and horrible and dread winter, Also the vagueness and jumbling of words at times, l try to laugh off the slurred gobbledy gook on talking to people on worst days.

    l cant say lve days of good  energy, but have ok days with moderate energy and moderate pain, so on these days try to catch up on jobs in the home garden pet care, l live alone so mainly rely of myself, and feels good to achieve something posative in jobs,  and ability to do it, but usual after affects following day or two, knackered, in pain and achy from waking,takes hour or two to function tidy up, usually get about 4hrs sleep, need to go to loo couple of times then nagging pain so cant sleep longer, lve had intersticial cystitus for many years which accounts for some of symptoms, but not all, many have started in last year or two, plus l feel so different in a way l cant explain, l know lve managed to explain a lot, but its more of a different feeling, maybe mental affects, although very restricting, l,m glad l can get up, knowing some cant, and l can keep home and pets going along.with delivery services from supermarkets for heavy items a big help. l do get out and about as much as l  can, will power at times, and glad theyve trolleys to lean on in supermarkets. l,m trying to train myself to use days of moderate energy for social stuff rather than household garden upkeep and just letting that slide a bit, as socialising talking is also important mentally, it would be easy to become housebound and depressed with it, so ongoing battle to overcome.   But l still dont know if its cfs, also read mbs on here about fibromyalgia, sjorgens, quite a lot of women with i.c, also get these conditions, all immune related symptoms and conditions. 

    When l mentioned cfs to gp she said oh you cant get out of bed with that, end of, but due to go back and pursue further,also due to see physio with pain probs, he at least seems to have an open mind to it being either cfs, fibromyalgia or sjorgens, other. But reading your symptoms sounded like so many of mine, makes me feel a bit less odd, best wishesconfused   

    • Posted

      Hi Lynne,

      Just wanted to say that you may need to change that doctor! Even if only for this one issue? Support is the key here. I feel we with the condition need to feel supported. I spoke to a stranger on the telephone today whose wife has cfs/fibro and it really helped them to have a doctor who has taken further training in the subject. Wouldn't it be great if we all had understanding doctors?

      I asked mine if I may be suffering from cfs/me and they were happy to explore that with blood tests etc and a referral to the cfs/me clinic. Hope your doctor can do the same.

      B

    • Posted

      HI Thanks for advice, l have an appt with a different doc,  and if no tests are done to diagnose this time  l will change, lve had standard blood testing, but not specialised ones needed, and lve learnt more myself from mbs.  Last one l saw was a new doc and yes many dont understand and too ready to go down phycalogical path cop out. Just been out with it being nice, now feel totally knacked, Thats it for today now, eat and relax. rolleyes
    • Posted

      Yeah. I get you. Thats why i was glad to stumble into the site. I had read up over the years and read the odd forum but there seems to be alot more people similar to ourselfs on this one. I defo feel less alone on this.

      I do also have a touch of psorisis and have had two dermatitis breakouts.

      You seem to being going through alot more than i am.

      You mentioned pets? Id never say to give them up but maybe a hayfever tablet may ease the rhinitus. Even tho u may have not actually have allergy to pet hair, with cfs ive always found the system weak and changes.

      Ive found some foods,drinks, toiletries, materials, and medications that i was fine with before that now give me grief.

      Its a crazy mixed up, messed up situation and is defis not straight forward

    • Posted

      Hi Lynne,

      Definitely know that feeling! I've not been good today. Had a meeting with solicitor on Monday and still suffering from that.

      Hope you get a positive response with doctor. Its so hard sometimes isn't it?

      Rest well.

      B

    • Posted

      l wish theyd had site like this when l had ic symptoms, l hadnt a clue, the gp didnt either, , good info on site. l think skin probs common with immune conditions. , l have used anti histamine nasal sprays and tablets, and also have some allergy probs with some toiletries, detergents, dust, diesel fumes, but think  lve built a resistence up to pet allergies, though dont like their fur touching my face at all, hands ok,  but as you said earlier when you tried being at home it nearly drove you mad, and there are days like that for me and most l guess, on your own worse l think,  some might say different.  l,d hate to be totally housebound, some are, But did relate to many of your symptoms, l thought, ditto.  Liked your pain in the arse comment lol, l can be one but its one of the areas lve no pain with, but this site opens your eyes to what so many are experiencing long term and some no diagnosis, you wonder, got to get something common to get quick diagnoses,  Think just bad luck that we havent great immune systems, you should read up on myalgia and sjorgens, also simular symptoms, dry eyes and mouth common with sj. Well tomorrows another day, maybe a better one for all., hope work goes well for you, if it gets too much maybe theyd let you go ptime, take care.

       

    • Posted

      l know some days tolerable, others like ....,,, some after affects, but also think envoirament affects, depending on allergens toxin levels, think l,ll ask doc for break away in nice clean warm climate, live in hope, or for them just to be really radical in listening, maybe getting out of chair and examing patients, exscusing the good docs, Hope you have a good night, voyage of discovery what the night and morning brings, take care.
    • Posted

      I think if the nhs prescribed us all a month away at a health farm, doing nothing stressful just gently getting us back to feeling ok, feeding us well then we may get our batteries charged just enough to come back Into our lives again with no payback! Just a thought ; ) sleep well. Hope tomorrow is a good one.

      B

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