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I get over 90 symptoms with the CFS/ME. Example of canadian consensus CFS

Discussion in 'General Symptoms' started by taniaaust1, Aug 12, 2010.

  1. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I cut and pasted an old post from another site of my symptoms and put it on my blog here but then decided I'd properly update it so added to it to main forum. (is there a way in which one can edit ones own blog so i can fix that up properly?)

    Anyway.. here is the fully updated version of the symptoms Ive had

    I first got CFS/ME in 1997 when 26/27 yrs.
    My CFS is of the ME variety and was slow onset.

    Ive probably forgotten a few symptoms in the list below, I have this list which I take with me whenever I see a new doctor over anything CFS related, cause any doctor I see needs to know all this about me and of cause I cant remember all that in one go. Quite a few doctors have refused to see me again thou, as they cant deal with a new patient, which has so many health issues! Im told my illness is too complex and they dont wish to take me on as a patient

    Of cause I dont get all the following, all at once!!!!! thank god!

    1/ post exertional fatigue (both physical and mental)

    2/ fatigue

    3/ exhaustion (physical and mental)

    4/ feeling weak

    5/ feeling feverish

    6/ feeling fluish

    7/ feeling like "death warmed up" (like feeling pale and like one is on deaths door)

    8/ feeling faint and dizzy

    9/ apathy (I dont care about anything to the point where I wont do something which needed to be done..eg put in my work time sheet, so I end up not being paid). or not paying a bill due to the apathy/indifference.. so ended up getting my phone cut off.

    10/ feeling intensely overwhelmed at times (to the point where one just NEEDS to shut out all stimuli, brain lock down state..but its on an emotional level. this happens when I get overload..eg too much stimuli happening.. it can throw me into body shakes and almost a fit etc)

    11/ feeling depressed (mostly in 1997)

    12/ panic attacks (new symptom 2006)

    13/ rapid mood swings (2006..almost like rapid cycling Bipolar)

    14/ feeling suicidal (1997/2006..tried to commit suicide twice)

    15/ feeling cold (I some times need to wear a jacket or even gloves on warm days. Today everyone is in tshirts and Im cold wearing a jumper)

    16/ feeling hot (I sometimes over heat doing the slightest thing..eg vaccuming one floor, its more like a hot flush)

    17/ Im intollerant to both heat and cold
    eg ive collapsed twice with heat exhaustion at different jobs when it was hot thou others on the job were fine. I can just freeze up and go into violent shivering, teeth majorly chattering, very easy on a cold day

    18/ intollence to light, it hurt my eyes, I couldnt be in it (mostly back in 1997/1998)

    19/ intollerance to sound (often can hurt my head..and fast music can be too much in the speeds of its beats for my head and can send me into shaking with overload due to fast beats). When I go to centrelink.. I have to, only a mth back, butt in at front desk and tell them to turn their music off while I wait in their quene as it was starting to send me into neurological shakes and spasms and brain overload. (I was about to put my hand over my ears and start screaming..as I just couldnt bear it, it was like my head was about to explode.. not a headache..but an inner head thing).

    20/ body sensation numbness ..
    eg I have a lack of feeling in my whole body. I had to get doppler ultrasounds done on both my legs only a mth back as I very badly injured myself without feeling it.. and was black with intensive bruising. So bad that the doctor was worried about me gettting a blood clot so hence I then had to be sent for ultrasounds. Ive had a lot of problems too with my right hand..there has been times when I cant feel anything touching it and I cant feel it if another is holding my hand. (2006/2007)

    21/ feeling stiff (1997/1998)

    22/ muscle pain (at extreme levels in 1997/1998)

    23/ bone pain (extreme as if someone was drilling in bones 1997/1998)

    24/ all over body pain (hurt just laying on the bed cause of bed touching it.. so bad clothes made it hurt too, it hurt without anything touching too. extreme 1997/1998)

    25/ strange body sensations (like hundreds of ants all crawling over me.. and also of like spiders biting me..so much I'd yelp with it at times even out in public as I couldnt help it) (that happened for 2-3 yrs)


    26/ pain inside my body which would change places and like pressure or pushing, like if parts of ones body was going to explode outwards, (this happened for a couple of years)

    27/ joint pain (extreme and all over in 1997/1998 ..nowdays minor eg last night it was a couple of knuckes with pain flaring out into my right hand, it woke me up and kept me awake for about 45 mins, but then I got back to sleep. The past few weeks Ive been having problems with strange ankle and foot pain coming in on exertion. I ended up limping for the rest of the day after trying to do things, for a couple of hrs, the other day).

    28/ eye pain like behind my eyes (mostly in 1997/1998)

    29/ headaches (esp when ive over excerted myself). These can be in any place. When I exerted myself just chatting to my family the other day, I got one in my right temple. A lot of time they are in my forehead..

    30/ sore throat (this is my warning sign when Im over doing something. It can be like Ive gone and ate glass).

    31/ Chilblains .. swelling of my toes of both feet and pain there (I couldnt wear shoes or walk for two weeks.. so was unable to attend work for a couple of weeks due to this symptom, thou I was able to work almost full time at that time)


    32/ swelling right hand (2006)

    33/ weakness of my right hand (2006 ..specific to that hand, affecting fine motor skills eg its hard to dip a biscuit in a cup at times cause that causes it to shake cause it so weak with that movement. I cant hold my newborn neice on that side for even 5 mins at the moment.

    34/ major spasming of right hand (2006.. spasms at rest)

    35/ loosing control of right hand (2006.. it will suddenly let go of things without me knowing until the object hits the ground that my hand has let go of it. (I smashed a baby present I'd just brought due to this). At times I cant write with it cause its hard to control, cause I cant feel it well and cant control it.

    36/ Raynards syndrome in my fingers (when cold or I get stressed)

    37/ Pins and needles feeling cause of poor circluation easily

    38/ swollen glands (1997/1998 they were visably swollen almost all the time)

    39/ blurry vision (1997/1998)

    40/ severe memory problems (short time and long term) eg I forgot how to use a phonebox last year and then when i left there..i left my
    money there!!!. I forget friends names at times and once forgot where I worked!!!! It took me 3 days to remember where I'd worked for the past couple of years and I was too embarrassed to ring my boss telling him I couldnt remember.
    I had my brother in law come to visit me..and I had forgotten who he is, I knew I knew him and knew him well but couldnt remember where from. He had to tell me.
    I've thought my car had been stolen when my car was right in front of me, i couldnt recognise my own car. On the weekend, I forgot the car Ive had for 6 mths or so. Even when my family told me what colour it was, I couldnt remember it at first or remember having such a car.

    41/ blank outs/mind lapses?? (Petit Mal seizures??? - absence seizures (conscious but unaware of my actions.) I may be looking for a street, the next street ahead but will drive by and not see it at all, even thou Im looking for it, as I blanked out but was driving on autopilot. I may come back past it again..and do the same thing. (its highly frustrating!!)

    42/ confusion eg freaked out thinking i'd lost my purse so was looking for it, it was in my hand the whole time (I do thinks like this a lot)

    43/ difficulty concentrating (I have difficulty reading anything in which I have to concentrate on without breaking focus for about 5-10 mins).

    44/ difficulty working out things which require mental effort eg adding up can be hard, cant work out things in my head easily. I make mistakes at times adding just something simple like 9+3 in my head and will come up with wrong answer. I only work a couple of jobs a week.. but often end up putting my hours in to my work wrong.

    45/ like dyslexic with numbers. I will copy down phone numbers often wrongly, with numbers in wrong order.

    46/ difficulty understanding language.. eg last week while trying to sort out an electricity bill by phone... I ended up in tears and my daughter had to come to my aid as I'd got brain fatigue while on phone after a couple of minutes..and couldnt understand language no more. Only could understand one individual word at a time but not sentences.

    47/ difficulty talking ..I often say wrong words in sentences and at times find myself able to speak properly.. eg I can forget how sentences start..or jumble the whole sentence up (bad problem in 1997/1998, some bad incidents also 2006 in which I found myself unable to form sentences).

    48/ slurred speech (1997/1998)

    49/ rashes (The last one I had was late last year on my right arm.. a raised, one colour, red and then went fawn colour 5 cm, almost round but not quite, rash). The Doctor said it could be a viral kind of rash..but he didnt seem to know, his comment was that it looked a little like a rash children get. Interestly that was about the same time when I had a lot of problems with my right hand)
    Hives several times (2007-2010)

    50/ shortness of breath (2006.. its like i cant get enough air, it can
    happen instantly or on excertion, it feels as if im sufficating cause of lack of air. I can breath in and fill my lungs..but its like the oxygen isnt being absorbed. I've thought about getting oxgen from doctor in case it happens again, its scary)

    51/ muscle weakness (my legs just buckle and give way if I stand in the one spot too long. Standing in phone box talking to someone can be hard).

    52/ muscle twitches and jerks. Diagnosed with myoclonus

    53/ poor appetite (i need to temp myself with foods to make myself eat)

    54/ Bell's Palsy (only happened the once but affected me for days) Dont know if it was due to the CFS/ME or not.

    55/ food intollences (2006/2007.. causing stomach pain, sore throat,
    tiredness, sore throat etc) This puts me off of eatting at times.

    56/ Multiple chemical sensitivity (I often react to perfumes, deoderants and chemicals)

    57/ nausea (this can come on instantly and I can almost vomit as it comes in so strongly and then goes as quick as it came, sometimes only for seconds.. or it can be there continously)

    58/ gagging (this was a very weird symptom. I didnt feel nauseus at all with it but would gag and dry reech, as soon as a food item touched my lips. It was like my body was reacting to lip stimuli and the food was something yummy which I wanted to eat and often do eat. But I couldnt cause of the gag reaction I got). (2006)

    59/ insomina (major problem in the past due to altered biorhythmns... eg my system thinking night was day and day was night.. also have trouble sleeping if Im in pain)

    60/ nightmares (lots of violent dreams esp if Im relapsing)

    61/ Restless leg syndrome (RSL) (but more like restless body syndrome!) I get this if I over do things.

    62/ balance problems (I loose balance easily and can just suddenly fall over. I did that on the weekend

    63/ I cry easily at things

    64/ easy bruising

    65/ easy marking on touch (a friend of mine noticed this with me a last year.. i was running my finger along my skin and it left a big red mark. Ive forgotten what this is called but there is a medical name for it, one can be left in welts just from being touched).

    66/ constant thirst (This stopped last year when I got treated by a
    homoeopath... i was drinking about 3 Litres on a normal day, more when hot).

    67/ sweating .. (bad night ones in 1997/1998) .. I still sometimes break out in sweat easily eg while vaccumming a room.

    68/ body shaking/trembling (on over excertion)

    69/ tic (2006, a head tic ..major when it happens.. body overload can send me into it.. once a breeze blowing on my face was enough to send me into it. Its constant and can be quite violent, till the stimuli is removed)

    70/ abnormal taste sensation eg a salad sandwich may taste like pineapple when there is no pineapple on it

    71/ abnormal smell sensations eg body odour may smell like strawberries

    72/ abnormal body temp sensations.. feet are cooking like on fire with rest of body very cold. Different temp. sensations in different body parts.

    73/ hyper-reflexia (autonomic dysreflexia) eg body over reacts to stimuli ..this can cause me abnormal reflexes in my legs which a doctor has noted, to even almost throwing a seizure on being touched, or having light shine in my eyes (when I get this I can get the other symptoms with this too eg high blood pressure ..eg 150/95 or more, sweating, anxiety, muscle spasms etc)
    ....................

    74/ Hypertension/High blood pressure.. or blood pressure variations. My BP has been high lately 150/98. Other times its 90/60. Ive noticed it can almost instantly change (I dont know what's going on there).

    2008 update on this symptom, things are worst now

    ... It's not uncommon for my BP now to go up to 176/138 (noted by both 24 hr BP monitoring and also on another BP machine). As my BP can also go down very low 90/55 and lower, Ive now been diagnosed with having "sympathetic nervous system (SNS) dyfunction" and "orthostatic diastolic hypertension".

    75/ Hypercholestrolemia /high cholestrol (Im on a special diet for this, my cholestrol levels are up cause I cant exercise, exercise helps keep cholestrol levels down. This can be a common problem with CFS).

    76/ Polycystic Ovulation Syndrome, I was diagnosed 2007, as my hormones are all out of wack (in wrong balance), the CFS made my hormones more screwed up. I also have Oligomenorrhea (irregular periods) and hirsuitism (excess hair growth on my face, right now Im growing a beard! no kidding) along with the polycystic ovaries (means I have too many developed egg follicles all developing at once so cysts). (PCOS can be a serious problem and puts me at half a chance now of getting diabetes or insulin problem among other things).

    77/ Period pain so bad (2006) that the pain has me hunched over and has made me almost faint at times as I go into hyperventilation due to it. The pain is so intense it radiates into my lower back and butt and right down to my knees and makes my knees hurt too. (Ive fixed that problem by taking 1000mg of calicum daily.. that also fixed the next problem listed).

    78/ Premenstral Dysphoric Disorder (a step above what PMS is (2006) ..as we all know the CFS can give one more mood swings and make one more sensitive.. it has given me severe ones..so hence that diagnoses a doctor has given me. I was getting suicial and tried to kill myself at certain times of the month, the rest of the month I was being fine.. it was purly hormonal.

    79/ I have been diagnosed with Central Auditory Processing Disorder (CARP) by a hearing specialist (2007), i got this due to the CFS/ME. This is like one has a hearing problem but it isnt caused by the ears but rather a problem with the brain. It can make all the sounds I hear like blend together so I cant always distinguish individual sounds well, it can also cause me to not know from what direction a sound is coming from eg from in front of me or behind me.

    80/ Im getting heart arrythemia, my heart is missing beats at times..on occassions severely. Ive noticed this 3 times in the past month. This is a new problem this year (2007)

    81/ Irritable Bowel Syndrome (2006/2007) eg diarrhea to the point of incontience at times in which i will have to wear a nappy, constipation, cramping.

    82/ Osteoarthritis in neck, between shoulders and in lower spine (2007) In right shoulder (2010)
    (this may be genetic and not related to the CFS/ME. Doctors say this isnt normal in those in their 30s)

    83/ Impingement syndrome of my right shoulder with also a torn tendon (2010) which is taking ages to heal. The ostero-arthritis may be partly to blame and the CFS/ME seems to be interfering with healing.

    84/ Vit D3 deficiency 31n/mol (normal is 60-160)
    ...........................................................

    85/ This isnt really a symptom but may actually be responsible for my CFS as methylation issues and hypercoagulation issues go hand in hand with CFS and this causes a methylation problem as well as hypercoagulation.

    I have a methylenetetrahydrofolate reductase (MTHFR) polymorphism which Ive inherited from both my parents, so I have a genetic fault with my methylation/methionine cycle. The more recent CFS theory (also for autism) is that there is a problem in CFSers going on in their methylation/methionine cycle. So the fact Ive been found to have a polymorphism ties with that theory.

    86/ Low cortisol, mine came back 46 on 24 hr urine testing (normal is 50-350) (2008 update)

    87/ abnormal clotting tests (non specific test but probably indicates anti-phospolipid sydrome (Hugh's syndrome) which most with CFS/ME have. (2007/2008)

    88/ Abnormal EEG scans (2007/2008) (no normal alpha and predominantly beta even with eyes shut (a common CFS/ME finding)

    89/ Iron deficient in Iron storage but blood iron levels normal (Iron storage issues have been related to FM in a study) (2008 finding) It cant be due to my diet as I get meat cravings so eat meat 2-3 times daily.

    90/ Postive Rombergs Test (a neurological test) (2007)

    91/ postural orthostatic tachycardia syndrome (POTS). My heart rate sometimes DOUBLES on standing eg 52 while laying.. up to 107 on standing. (2008)

    92/ Unconsciousness (I know now it was due to POTS) Friend said i was unconscious for 3-5mins. Due to just standing 15-20mins I've had unconsciousness several times (2007)

    93/ Left arm doesnt automatically swing when I walk and just dangles. Others keep asking me due to my strange body movement if Ive had a stroke, it was like this for several weeks (2008)

    94/ Hand curling like those with neurological issues do when sitting. I need to keep on correcting my posture and remembering to straighten out my hands so they look normal. Like a kind of palsy (2008)

    95/ Borderline personality disorder (2008) I've only just developed it and have now got a diagnoses of it.. strange as people are meant to get that from teen years. The fact i have developed mood swings this severe is all due to the CFS/ME.

    96/ Vertigo (room was spinning fast in one direction, this only went on for less than a minute but it completely floored me and i almost threw up due to it) 2008

    97/ Anxiety (started 2008)

    98/ Ear Aches (new pre CFS crashes warning sign 2010)

    99/ Asperger's/mild autism (diagnosed 2010) Obviously Ive always had this but I've learnt to cope with it and hide it. Thing is with the CFS/ME all my coping mechanisms are gone so the Asperger's now is really showing.

    100/ ZERO level of Testosterone (2010) So had a testosterone implant inserted

    Im in my 30's still and CFS/ME seems to be destroying my whole body, its affected every sense I have! From what Im experiencing this illness seems to be progressive and degenerating over the years.

    When my symptoms come in.. I can be slammed with so many, extremely severely, all at once eg 30+ symptoms all at once with not one of my senses properly functioning, its very scary. With minor relapses, I may be getting 9-15 different symptoms.

    (currently thou the CFS/ME is quite good, other than some autonomic, hormonal and some brain issues)
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Tania

    I have probably had at least 70 of your symptoms, so I can relate - plus of course if I had the time and energy I could probably add about 20 more symptoms myself, giving us both a list of around 90. I have heard it said that CFS has about 200 symptoms, but this is the first time I have seen a list of more than 30.

    Just on mind lapses, I have frequently noted when I have seen the end of movies, that I recall the beginning, but don't remember the middle. I am not asleep, or at least nobody has ever noticed me asleep, but my mind is definitely not there or not remembering. I have no idea how much this happens at other times, because there is no way to tell. It is a little bit like a tree falling in an isolated wood - who is there to notice it fall?

    Aside from male/female symptom differences, one thing I do note that is different is that my OI only has me passing out for a few seconds, once I am flat I wake up. So while I may have had most of your symptoms, the severity or spread or duration might be different, and different at different stages of our illnesses as well.

    I think the longer one is sick, the more symptoms one develops. CFS appears to disturb the command and control systems in the body - neurological and hormonal (I am including the immune system as primarily hormonal controlled). It is no wonder we have lots of symptoms.

    On the flip side, I used to be able to drive directly to some place I have never been, almost by instinct, without ever looking at a map. I don't think this is psychic, I think it is subconscious processing. (I haven't driven since 1992 however, as I regard it is very dangerous to myself and the general public.) Similarly when my brain fog fully lifts my reading spead goes from 0-500wpm to waaaaaay over 2000 words per minute (I can read a book in 5 minutes), and my math goes from "1, 2, 2, 2, ..... 3?" to intuitively understanding equations and graphs including implications, and doing some math in my head faster than on a calculator. I had an hypothesis a few years ago that our brains rewire to deal with brain fog, and when the fog lifts we are much smarter than we were before. I can't wait for my fog to permanently lift! Maybe this explains why so many of us are so smart - we adapt to dumb by becoming smarter! If only we could adapt to fatigue by becoming an energy dynamo! :sad:

    But back to your list - I am sure many of us can relate. Such long lists are probably typical of us. It also shows why real diagnostic criteria for ME and CFS are so complicated, and why the Oxford/Empiric CFS definition is so stupid.

    Bye and best wishes
    Alex
  3. taniaaust1

    taniaaust1 Senior Member

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    i think i just edited the post a further 20 times, realising symptoms ive had with this were missed off my list. I think i have it close to having them all there now. Yeah if you start to add up your symptoms you will probably find you have had far more then you first thought.

    nods yeah that is the mind lapse i used to have.. its at times unsettling if you were doing something and then cant remember half of it or what you did no matter how much you try.. you just werent mentally there.

    How can you tell how long you actually are out for? I never knew how long my passing out could be until i was with someone when it occurred. I never imagined my passing out were as long as that, I'd previously thought that my POTS pass outs were only for seconds.

    Its kind of funny but i'd told him about my issues so much that when he actually witnessed that, he wasnt at all concerned about me being unconscious so had moved me and then just gone off to other side of room to do his own thing till i came too, like if it was an everyday thing. I was horrified when he told me how long id been out and the fact he'd left my side while unconscious (and had layed me out onto my back!! I used to be in the ambulance service and that is a No No thing to do).

    Yeah but what I cant figure out is why we get more symptoms but ones we had previously can completely go. Why in one individual does the whole symptom complex change??? Something must be going on different in the body. Why can a persons symptoms change completely?

    One thing which has really changed with me is my body used to be always cold (that is whenever i wasnt running a fever). With that coldness.. i had chilblanes, raynauds and low BP. I dont get any of that as my body the past couple of years has completely changed now my body is warm and my BP is completely different. umm i guess the poor circulation things went along with having low BP and now is dysregulated in a different way to before, that would be why that shift. (unless the B12 injections caused this shift??)
  4. L'engle

    L'engle moderate ME

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    Thanks for this really extensive list! I was looking to see if anyone else had the shaking problem. The last week my muscles and head all feel like I'm having to exert to keep them from shaking. Muscles are very weak and exercise is kind of impossible, though I was able to do some before. We had a heat wave and I've been sick since, haven't really recovered even though the temperatures are comfortable now. It's like restless leg syndrome all over, restless body, as you say. I noticed my hands are curling, I'd never heard of that being unusual but yes, of course it is. They curl up and go slack, and if I straighten them, then there are some visible tremors. I also feel really brain damaged right now, though that is pretty common for me to some extent. I tend to enjoy reading equations and numerical things when my brain is well enough, as it is such a relief to be able to do it again. The ability isn't exemplary in my case but it is notably light years beyond what it is when I have brain fog, which is most of the time. I'm putting together a portfolio of tasks, in case I'm lucky enough to see a neurologist sometime, that documents what my brain should be able to do when it's functioning properly.

    I can't afford to accumulate more symptoms every time the temperature goes over 30c, so I'm hoping this shakinatin' feelin' goes away!
  5. taniaaust1

    taniaaust1 Senior Member

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    The shaking can also happen if you have POTS and that is flaring. Seeing you said it was hot and you were doing that, i suggest to drink a lot more!!! (and try to keep your body cooler... when its hot, i wear my clothes wrung out wet).

    those neuro symptoms also may settle with some Clonazepam/Klonopin. It works by slowly down an overactive CFS/ME nervous system.
  6. gregf

    gregf Senior Member

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    Hi Tania, ME mother of all symptoms.:tongue:

    I am getting what I call prickly itch. Nothing on the skin but a little itchy
    and sometimes like a pin prick, enough to make me jump. Starts at the
    extremities and as it get worse, moves to the torso. It may be related to
    some medication or supplement but I am having trouble seeing a pattern.

    Does this sound like Tania/25 to you ?
  7. taniaaust1

    taniaaust1 Senior Member

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    possibly thou that is a very mild version of it.. sit on an ant hill, then you'll understand :p

    This may sound weird.. but salt (1 kg) along with 250g bicarb soda in a warm bath soaking, used to like clear the skin feel some (or make it like things were crawling to the surface and coming out).

    I still dont know if it was due to some kind of parasite inside my skin or what but it actually came more alive at certain time of night, like as if things were coming to the surface of my skin to feed at night and were in some kind of feeding frenzy.

    Ive forgotten what it is called but there is another name for this issue, the CDC is investigating what causes it as at times some see threads and other things coming out of the skin with it and it will make one itch like crazy, (im my case, it cleared up after i had like these hard small rice grain things like hazy glass, fall out from my fingertips). They werent tapeworm eggs but something else.

    I used to have to sleep in salt baths nightly due to this problem as otherwise the itch was too much.

    I actually managed to like poison myself with pure lavender essental oil one night while trying to deal with this issue (i smeared it over every part of me as that helped some too.. and then got so so sick!!)
  8. gregf

    gregf Senior Member

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    Sydney Australia
    Yes, I get it worst at night too.

    If you had it worse, then OMG, I can't imagine, you poor thing.
    There are times my one drives me crazy. But if you had it much worse....

    Sigh. At least we're making progress.
  9. L'engle

    L'engle moderate ME

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    Thanks! I've been downing my homemade electrolytes (sea salt and stevia in water, plus other servings of sodium and liquid, V8 etc) like nobody's business during the hot season but I guess it wasn't enough. I checked my BP one day and it was 97/65, so yes, I think POTS related. I will just have to really stay in air-conditioning and not go out in hot vehicles when it is over 28c. Thanks!
  10. sleepy237

    sleepy237 Senior Member

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    hey Tania hugs, hope you are ok, i relate to your monster list of symptoms and have had and do still have mosst of them including the borderline diagnosis too. Saw a CFS specialist today for first time and he put a rather different slant on things than what i have read anywhere....he says our thoughts and outlook (originally caused by our illness) well mine anyway - hopeless helpless depressed, doesnt help us and alters the way the lymphocites(spelling) work.... tomorrow i go to psychiatric hospital for a week no choice cos my anxiety has maxed out and is not helping my cfs had vertigo leg weakness for a week cant tolerate it cos i live alone and i get scared so off i go...hopefully ill catch up with you sometime in the future. Another thing he said is that we are like flowers in tubs, if we are in the dark we wont flourish but if we are placed in the light and get the nurture we need we will come back to life so to speak, my cfs is so bad i stand up pots symptoms and when i sit my pulse plummits fast this is a very scary illness to deal with and its hard to find the way forward but I HOPE n PRAY that with each passing day we will all improve and have at least some level of recovery you know to allow us to get back to that thing called what is it ....oh yeah LIFE and LIVING, wishing you the best Tania speak to you soon, Love, Sleepy.

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