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What do you all make of my illness? Esperanza here :)

Discussion in 'General Symptoms' started by Bunchy, Jan 15, 2012.

  1. Bunchy

    Bunchy

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    SYMPTOM HISTORY


    FIRST PHASE MAIN SYMPTOMS 1988-1995

    ? New onset of extreme fatigue in head (as if I hadnt slept for weeks)
    ? Generalised achiness and sometimes tingling all over
    ? Felt terrible all day if tried to get up early ill, achy and exhausted
    ? Swollen, painful lymph nodes in neck (88-90), armpits (91-93) and groin (93-95)
    ? Cold hands and feet/hot hands and feet
    ? Sensitivity to temperature extremes
    ? Areas of skin exquisitely painful to touch occasionally
    ? Occasional excessive thirst
    ? Swollen fingers upon waking
    ? Localised night sweats
    ? Alcohol intolerance
    ? Vertigo type symptoms (December 90)
    ? Sensation of low grade fever and actual slight temperature at times

    NOTE: I had Glandular Fever (Monos) 3 months before this started (Id already had it the year before as well) and a minor surgery six weeks before I became ill.
    This first phase improved after a flu virus in 1991 but I remained very unwell.


    SECOND PHASE MAIN SYMPTOMS 1995 2001

    ? New onset of chronic severe nausea (like severe travel sickness), unusual stomach cramps, loss of appetite and diarrhoea (unrelated to food) associated with severe aching ill feeling, rubbery feeling legs and painful calves and sometimes a squashed feeling in my head
    ? Extremely hot, throbbing, stinging and painful hands and feet esp. in bed and after food or when exposed to heat.
    ? Night sweats and chills
    ? Extreme drugged feeling and feeling very unwell upon waking up
    ? Pressure headaches and chest pains (98-99)
    ? Sensation of not being able to draw breath (year 2000)
    ? Hot, achy, sick and dizzy spells in middle of night felt delirious and about to vomit and have diarrhoea
    ? Standing and walking caused pain, pressure and stiffness in back and legs followed by severe ill feeling (as if poison coursing through body) all over
    ? Gradual onset of pain, throbbing, burning and unbearable pressure feelings in back and torso when sitting upright and on hard chairs, anything that isnt foam ie doesnt bounce back and isnt reclined.
    ? Often feel battered, bruised and sore all over
    ? In severe spells, feel as if poison or acid running through my body
    ? Need to eat and drink at certain times immediately to avoid feeling worse
    ? Occasionally feel episodes of extreme internal pressure and as if body and head will explode get flushed and bloodshot eyes when this happens but blood pressure is normal

    NOTE: This phase started after a period of time when I tried to work full time and got extremely tired and also severely overheated during that particular Summer.
    An anti-emetic medication put an end to the "stomach" symptoms.


    THIRD PHASE MAIN SYMPTOMS 2001

    New onset of extreme "CNS" sensitivity

    ? Unusual pain and electric shock sensations all over followed by severe ill feeling upon lying on anything other than a soft mattress
    ? Severe internal buzzing, burning and pressure in torso and up spinal cord upon sitting.
    ? Trembling, buzzing stomach muscles in certain sitting positions
    ? Episodes of body rigidity followed by buzzing and trembling all over
    ? Crawling feeling in leg muscles and also hip and torso pain when sitting in some positions.
    ? Sitting upright feels as if I am being strangled inside.
    ? Even more severe general ill feeling all over.
    ? Severe heat intolerance feel as if about to explode, severe pain in hands and feet, sense of complete disorientation and head feels detached
    ? Standing/sitting problems worse than in second phase
    ? Constant excessive thirst and urination
    ? Too much talking and/or noise around me causes fatigue and confusion.

    NOTE: Im not sure what caused this catastrophic phase although it happened after severely overheating again. I did improve for the most part from this phase over time after about 6 months of severe symptoms.



    Years 2004-2007

    Experienced several severe and unusual allergic reactions to viruses (one with severe hives and head swelling, one with the severest form of pomphlyx atype of exzema) the doctor had ever seen, one causing large hives in my eyes) which led to severe weakness, greatly increased muscle stiffness, pain and soreness and a poisoned feeling all over and the development of multiple chemical sensitivities.

    2011 Some symptoms are still present from all of the above phases in varying degrees. Others have subsided but I remain very unwell. Symptoms fluctuate and vary in intensity over time.
  2. Esther12

    Esther12 Senior Member

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    Ouch. No idea what I make of it, but you certainly have my sympathies.

    I'm pleased to hear you have improved a bit, and hopefully that will be able to continue... you certainly sound like you could do with a break!
  3. Jenny

    Jenny Senior Member

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    Hi Esperanza

    I have 95% of your symptoms. And mine have also gone in phases, though in my phase 1 (1982-89) I think I was less ill than you. I don't (yet?) have any chemical sensitivities though. Also, my long crashes have often been precipitated by getting chilled, rather than overheated.

    I think all these are very typical ME symptoms - your very graphic descriptions show how completely inappropriate the label 'chronic fatigue syndrome' is. I would never describe myself as being 'fatigued'.

    That said, like Esther, I'm not sure what to make of the symptoms. But I'm coming round to the view that many arise from problems with regulation of bodily systems, probably stemming from a dysfunction of the HPA axis and therefore autonomic nervous system, which in turn came about because of an abnormal immune response to an infection or infections.

    You'll find plenty of food for thought on this Board though.

    I do hope your improvement continues.

    Jenny
  4. Bunchy

    Bunchy

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    Any other opinions - sorry I know it was proabably too long for some to read in one go - didn't think about that.

    Jenny, I saw a while ago that you are in London and you were seeing an immunologist. Dr Chee? What is he like? Does he believe symptoms are "not all in the mind" and what type of treatments does he offer?

    Thanks Esperanza x
  5. Bunchy

    Bunchy

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    Please help me - I'm desperate.
  6. richvank

    richvank Senior Member

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    Hi, Esperanza.

    It sounds to me like an infection in the brain, maybe a viral encephalopathy. If it is possible to get a lumbar puncture (spinal tap) with PCR analysis of the spinal fluid, it may be possible to identify a virus. Neuroborreliosis (Lyme bacteria in the brain) might also be a possibility. I think an infectious disease specialist would be the type you would need.

    Best regards,

    Rich
  7. kurt

    kurt Senior Member

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    I've had most of those same symptoms also off and on. At one point a neurologist was convinced I had a neurologic infection, so I had the lumbar puncture and culture, but nothing could be diagnosed. In retrospect, the types of infections they look for would not be probable in a long-term chronic situation, they look more for the acute problem. And if we had those infections, we would be much worse off over time.

    Anyway, I agree with Rich that Lyme is a possibility, that is one diagnosis I had that made a lot of sense, and antibiotics for a year did help for awhile. But then they stopped helping and I got worse. So if you pursue the Lyme route, be careful to find a lyme-literate MD.

    If I were to apply Occam's Razor and say 'what is the simplest possible explanation' for all of those symptoms, I would have to say this appears to be some type of vasculitis in the brain, liver, kidneys and heart. And probably caused by a complex system of disorders that included genetic flaws, biochemical melt-down (esp methylation/detox), and an immune dysfunction perpetuated by a combination of chronic infections (including Lyme) that triggered an autoimmune attack on the vascular system.

    Vasculitis in my opinion has been under-explored by researchers, but it is provable in CFS. So why has there not been more exploration of chronic low-level vasculitis? In my own case, vasculitis was the only useful diagnosis from a brain scan, and I have most of the symptoms listed above... think about it.

    Oh yea, almost forgot to mention, one of the known treatments for vascultis is... Rituximab.
  8. Jenny

    Jenny Senior Member

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    Hi again Esperanza

    Yes, I'm in London, and yes Dr Chee. He's very nice, and knows this is not a psychological illness. He put me on valacyclovir and B12 injections.

    Some years ago I had a Lyme diagnosis from the Breakspear (private clinic) and had nearly 3 years of complicated combinations of antibiotics. They didn't help and I'm suspicious of the diagnosis.

    Following on from Kurt's comment about vasculitis, I think this is one of my problems as I had a subarachnoid (brain) haemorrhage a few years ago and can get burst veins just by picking something up sometimes.

    I'm sorry I can't be of more help. I do think your symptoms are typical of ME though. (If it's any comfort I have periods when most of all these awful symptoms disappear - in fact I had a 15 year virtual remission, and still have months when I'm about 80% well. So I don't think we have permanent damage.)

    Jenny
  9. Bunchy

    Bunchy

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    Thanks everyone for all your input.

    I am going to see the same specialist as Jenny in the hope he can shed some light on all this.

    I found a lot of your opinions and thoughts very interesting and may well bring the theories mentioned up at my appointment.

    Hope to get more involved here when life has settled down a bit again.

    Love to all,

    Esperanza x
  10. Bunchy

    Bunchy

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    If I had an infection of the brain as some have suggested (and assuming it is viral) but nothing obvious shows up on thorough testing (except inflammatory markers such as ANA and Anti Smooth Muscle Antibody are always positive along with occasionally elevated Sed Rate, RF in bloodwork), what would be the best anti viral to ask my immunlogist to try in order to treat a mystery brain infection on an empirical basis?

    I'm scared of Valcyte but wondering about Valtrex or Famvir, perhaps alongside Immunovir???

    Input appreciated before my follow up consultation.

    Thanks,

    Love Esperanza x
  11. taniaaust1

    taniaaust1 Senior Member

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    Esperanza.. If I was a ME/CFS specialist.. I'd diagnose you (after all the tests of cause to make sure but I'd be thinking it from the start due to symptom pattern) with having ME and not CFS. I see your case quite distinct from "CFS".

    Interestingly (you may not even have realised this yourself).. that you didnt mention much in the way of post exertional stuff until you said in your third stage "Too much talking and/or noise around me causes fatigue and confusion"

    If I tried to describing my illness and phases, it would look a lot like yours.. and I probably wouldnt end up mentioning post exertional stuff in my symptoms till much later as all the rest of the other symptoms outweighed it.

    Yours I think is one of the best descriptions I think Ive read of the phases someone has gone thou.

    In my phase one I had many of your phase two stuff mixed with it (I call my phase one.. my "Flu Like Phase".. the head, the aching, the lymph nodes, the night sweats and chills, the high fevers)..

    cold hands and feet didnt happen until my second or third phase.. in which I then went on and developed Raynauds at that point. I dont know if I developed the alcohol intollence in the 1st or 2nd phase (as I wasnt much of a drinker.. but it was there before the 3rd phase of my illness).

    My second phase majorly consisted of EXTREME exhaustion and weakness of all kinds (completely long term bedridden) and severe FM happened, intense inner bone pain and severe skin sensitivity too. (I'll call stage 2 EXTREME EXHAUSTION/WEAKNESS/PAIN STAGE" (while in this stage I also developed noise intollerance and light intollerance).

    My third phase too was "New onset of extreme "CNS" sensitivity" stage
    I was no longer bed ridden as in my stage 2 but now very obvious neuro issues could be clearly seen... like Postive Rombergs, hyper reflexia, unequal pupils, tremors (like Parkisons disease), jerking and spasms, leg drag (like MS patients), both EEGs showed abnormalities.
    I call this stage my neurological stage.

    I did have crawling skin sensations and like insects biting me feeling too but they happened in between second the third stage. (that stage I developed like Morgellons disease but with other ME stuff still happening too... I think that was right before my neurological stage)

    In third stage or just after that stage.. I too got the excessive thirst develop and peeing all the time. POTS developing I think. I thou wasnt aware of POTS till after this stage.

    It was sometime AFTER my second stage in which I developed MCS and all my food intollerance issues (i cant remember if it was just after the neuro stage, with it or right after stage 2 before the neurological stage hit).

    I do personally think there is common patterns in ME thou not everyone may experience each stage as intensely and some may never reach a certain stage due to getting stuck in certain stages. ME is probably distinguishable by the symptom patterns gone throu... the way our systems or whatever it is, are going down. (How many here thought ME as soon as they soon your symptoms? without even seeing the word PEM or postexertional mentioned)

    (I could break down my stages more then what I just described if I added in a remission after stage 1 and if I remembered when exactly I suddenly started getting MCS and all the food issues).

    Stage Im in now is one which happened AFTER the neuro stage.. (In my case 12? years after getting the illness), a big POTSY stage with bad BP dysregulation ..but food issues and MCS (which happened about 7-8 years or more into my illness), thou still there a little, arent now too bad now. All my big neuro symptoms from last stage hardly ever come in and if they do only mild (my EEG is now normal).

    Less post excertional stuff but far more POTS. Less tiredness and exhaustion (I think even cheney says there is less fatigue in this stage) but stage where symptoms when they come in they hit sudden and fast and can hit very severe. Im going to have to call this Fourth stage.. the big autonomic dysfuction (BP and heart problem stage) stage as that is the main issue of this stage which outweighs other symptoms.

    I wonder if your illness will take a similar route with a similar next stage. This stage is also the stage where heart damage seems to actually have occurred in my case (I now have 2 leaking heart valves I didnt have in the previous stages). I think with this latest stage.. im on my way to heart failure. This is Cheneys final stage of ME.
    ......

    I'd love to hear others experiences of what the stage after their severe neurological stage was like? Can someone please explain what that stage after that was like for them (I really want to compare notes esp between the severe neurological stage and the heart issue stage)
  12. Valentijn

    Valentijn Activity Level: 3

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    No idea about the anti-virals ... but have you been checked out for celiac or autoimmune hepatitis?
  13. peggy-sue

    peggy-sue

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    It does sound very much like my "history"

    - apart from the bit about needing to eat or drink IMMEDIATELY and the thirst and excessive weeing.

    Those symptoms sound like diabetes to me - it's easy to get that checked. You could be suffering from more than one thing.
  14. judi

    judi

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    This stage is also the stage where heart damage seems to actually have occurred in my case (I now have 2 leaking heart valves I didnt have in the previous stages). I think with this latest stage.. im on my way to heart failure. This is Cheneys final stage of ME.
    ......

    May I ask you how you were able to determine you have 2 leaking heart valves? And what is being done for it? My path is very similar to yours and I gotta be honest I don't know enough.
  15. Marlène

    Marlène Senior Member

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    Esperanza

    I recognize your symptoms apart from the burning hands and feet.

    I went to all kinds of specialists and spent a fortune on lab tests.

    The last results show that I have almost no vit B12 and B6 as well as a cyanide poisoning (consequence of bad methylation). It is a bit strange since I had weekly B12 injections as well as IV minerals and vitamins.
    B6 deficit causes also muscle wasting, acute noise intolerance and alcohol intolerance.
    Bad methylation causes chemical intolerances as well.

    Secondly I did a mitochondrial test at dr Myhill that showed severe conversion problems from ADP to ATP.

    My adrenals were tested and appeared exhausted. A treatment with hydrocortisone was very helpful. It also diminished the POTS after six months.

    My thyroid is not doing well but I'm taking any medication yet apart from iodide drops.

    I have positive ANA and was diagnosed with lupus 25 years ago.

    The chest pain finally got better after a chiropracter did a "whiplash intervention" (cervical vertebrae).

    I developed vasculitis in my legs and reumatoid artritis in my hands but all lab tests remain negative.

    I went to a Lyme doctor but he didn' think it was the cause of all the symptoms you mentioned. I consider doing an LTT test at a forensic lab in Berlin.
  16. taniaaust1

    taniaaust1 Senior Member

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    The leaking heart valves show up now on my echocardiogram report.. I now have tricuspid regurgitation and mitral regurgitation on my report.

    when I then researched those I found out this is usually caused by a Patent Foramen Ovale (PFO) which Cheney talks about in ME.

    PFOs if one reads about them.. one is usually born with them.. in my case I ask why there was no sign of one or leaky valves showing up on my previous echos till recently? I dont think I had this before due to nothing showing up on the same previous tests or it is worsening so hence showing up now?

    Unfortunately the changes.. the heart specialist didnt look into it and I believe didnt as he would of supposed I'd had it all my life.

    I havent yet pointed out to any of my doctors yet that I didnt have this show up on previous heart tests... as there is never enough time in appointments and I always have so many different ME things to be dealing with in my appointments (90+ symptoms), there are other things which is bothering me more.

    My specialist is also a CFS specialist rather then a ME specialist and that also makes me reluctant to be pointing every little abnormality found on my tests out to him. (He believes CFS and ME are the same thing and has no idea about the serious issues of ME so that's making it hard for me to bring up things to him.
    Once when I told him about one of my more major neuro symptoms which once had me ambulanced to hospital which is actually a ME thing, he said.. well that cant be ME/CFS.. sighs.. he's a good doctor but only a CFS specialist.

    They also havent taken a close look at my mitral valve in any of the many heart tests I've had (thou my other valves have been closely looked at but that one, irronically the one which one gets issues with in ME wasnt) ..and this is why I think they've only picked up the 2 valves leaking and not the actual PFO as the cause yet.

    Their assumption without checking, which I must of been born with the heart issues showing now, so always been there.. could be a dangerous one. We really need ME specialists who know what to look for in us and keep an eye on us.

    I truely believe that the fact I have a CFS specialist and not a ME one, will probably end up leading to my death, due to ME stuff which is being missed cause many ME/CFS specialists believe the illnesses are the same and that ME is CFS. (I hope people will remember what Ive said here when this illness kills me.. the whole ME CFS confusion will be to blame. Im predicting my death).
  17. taniaaust1

    taniaaust1 Senior Member

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    Probably hypoglycemia causing immediate need to eat and possibly issue with low blood volume (so risk of POTS etc) causing other. Both very common in ME.
  18. taniaaust1

    taniaaust1 Senior Member

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    Did your doctor give you cyanocobalamin instead of the other kinds of B12 injections?

    Do you mind sharing what that looks like or causes? I have what appears to be a bruise for past 8mths (doctors just say its a bruise or that it must be some kind of fungal thing.. no one knows what it is) and wondering if its something to do with vasculitis.
  19. Marlène

    Marlène Senior Member

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    First I had cyanocobalamin but they were extremely painful and left me almost paralised for 24 hours. From my results I know now I don't break down cyanid properly.

    Then I switched to hydroxyB12. It increased the B12 levels and took away a part of the brainfog but I was left with the other symptoms. As soon as I stopped, the levels plummeted.
    taniaaust1 likes this.
  20. judi

    judi

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    Thank you for sharing that, it breaks my heart to see what everyone goes through via these forums. I'm always grateful to you for sharing information because I've learned a lot from you so far. May I ask you how old you are? I'm just curious about how long you've been sick and when it started

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