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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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My 67++ symptoms of CFS/ME

I said i would some time put an indepth post here about the CFS/ME symptoms i've experienced, so just found one of my old posts at another site from some years ago to put here, i have updated it a touch.

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. (It would take a doctor several appointments to have time to note all that lol). Quite a few doctors have refuse 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... hence Im still looking for a good GP, who can handle a CFS/MEer and my CFS specialist who they always tell me to go to, is so far away )..

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/ 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 dislexic 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 (2007/2008)

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

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

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

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

56/ 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)

57/ 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)

58/ 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)

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

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

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

62/ I cry easily at things

63/ easy bruising

64/ 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).

65/ 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).

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

67/ body shaking/trembling (on over excertion)

68/ 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)

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

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

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

72/ 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)

73/ 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 176/178 (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".

74/ 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).

75/ Female hormone problems.

Polycystic Ovulation Syndrome, I was diagnosed with last year, 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).

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).

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.

76/ Last year cause of the CFS.. I also now have been diagnosed with Central Auditory Processing Disorder (CARP) by a hearing specialist. 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.

77/ 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)

78/ 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.

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

80/ 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.

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

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

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

84/ Iron deficient in Iron storage but blood iron levels normal (Iron storage issues have been related to FM in a study) (2008 finding)

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

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

The 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.

eg Ive been having 14 different symptoms coming in this week, its very minor this week eg memory loss, headaches, dizziness, nightmares, tiredness not even bad enough for me to really call it exhaustion, hand pain, both ankles pain on walking, falling down balance issues, diarrhea, constipation, achy all over, sore throat, mood swings.
Ive got symptoms just randomly happening, chopping and changing (last week my symptom list was different with different ones happening).. and that's fine to me as they arent restricting me at the moment as they are being minor (well other than I couldnt drive to work this morning due to the dizziness). Im well used to this and it dont worry me much as long as they dont get severe.

A big relapse, is a scarey trip to hell and back, Ive no idea when it will stop, days, weeks or months. Its something I do really need to avoid.

If asked to describe what having CFS/ME is like, I describe my experience of it as being like having parkinsons disease (Ive been mistake for being parkinsons patient a couple of times by nurses who saw me cause of my falling and tremors), alzheimers, epilespy, MS, arthritis, fibomyalgia, allergies and the flu, all at once.


ohhh so wish there was a way to correct blog posts.. i noticed just now that my BP in that post is typed wrong.. it is meant to say 176/138
We could be twins, Taniaaust1. There are only a couple of your symptoms which I DONT' have (or had) over the years).

I believe some of your symptoms may be due to stress, so de-stressing your life & doing everything in your day slowly & mindfully will help calm & relax your body.
Hello dear person...my husband thinks i'm going deaf...I try to explain the hearing ,language thing...but now you have said it for me,thank you.I don't feel alone now. We shate so many symptoms. I've often described what i have memory-wise as half-heimer's...i forget 1/2 of my life...including not recognizing eeven my own car! I put a stuffed cat in both windows so i can find it when i do get out and don't get lost going somewhere...I also actually had agrand mal seizure at an 1812 re-enactment some years ago...one and only..no epilepsy found, low seizure threshold with excess electrical activity was the diagnosis there brain stuck in Theta.I too have so many symptoms it's nearly impossible to list them even if i could remember them all in one go...thank you for your story
It seems that there is a correlation between some symptoms and hormonal changes and I have certainly experienced this. It seems to me that the progressive nature may be in some way related to reduced hormone levels. There does seem to be an inherited component to some of your symptoms. Likewise with me. My Mum had some strange symptoms that were never adequately explained and now I have some similar and some different symptoms. Have you managed to find anything to help?

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